2004-2006 Updates

Here’s a good shot of Abbie’s three missing teeth. She is already starting to get permanent teeth in their place, which is quite ahead of the schedule kept by our other kids. She’s just the record setter in our family!

Tuesday, 6/27/06

I could just say that life has been incredibly hectic, and that would be true. I could say that I haven’t had time to write because of social events, baseball, camping and birthdays, and that would also be true. But the heart of the matter is that sometimes I have to work through things before I can write about them, because I don’t want to turn Abbie’s site into my personal therapy workshop.

It’s been a tough a couple of weeks, and there have been points I’ve wondered how much my heart can take. The seizure issue seems to have abated for now, but for me it has become this monster lurking in the shadows, just waiting to pounce and throw another layer of challenges upon us.

Abbie had been fighting a diaper rash for a couple months, but recently it became open wounds rather than just a rash. This prevented us from getting her in the Walkable, and increased her tone markedly. She was in quite a bit of pain. Her feet began to have a lot of eversion, or turning outward, and there were times I couldn’t break through the tone to move them into a normal position. It became difficult for her to wear her foot splints for long periods of time, which is necessary to get the best effect of her recent Botox treatment. Because she also had wounds on her inner thighs, her legs rotated out to protect this area, exacerbating an issue we were already fighting against. At the same time, I noticed that she is liking to lean to her right side when she is seated, and became concerned about slumping leading to curvature of the spine.

There is a relatively new full-body orthotics system called Theratogs that would address each of these issues nicely. The first time it was submitted for approval it didn’t “make the cut” at the end of the program’s fiscal year. The second time it was denied outright because it doesn’t yet have it’s own code. We are in the process of doing a third submission now.

In the meantime, I finally broke down in PT and told Lynette that I feel like Abbie’s body is getting away from me….all her limbs respond very well to gentle correction and input, but I can’t keep my hands on her feet, legs, abdomen and wrists continually. I feel overwhelmed at what I need to do to prevent her from developing secondary challenges, like scoliosis or contractures, and I am supremely frustrated with trying to work within a system that confounds even our case manager and puts the needs of the kids last on the list.

Ah…but….God always inserts the word “but” at critical times, and it’s a good thing! So, because her wounds precluded the use of the Walkable, we’ve been putting her on a tilt table at PT. She lays on it, we strap her in, and then we raise the table to a nearly vertical position. She has done incredibly well at this, and what we have found is that simple weight-bearing affects her far beyond stretching her heel cords out. It relaxes her entire body, including her chest and arms. It has been exciting to see, and we’ve realized that in our focus on the Walkable, and Abbie’s enjoyment of moving down the hall, we may have underestimated the value that simple standing was providing. The relaxation lasts for the entire day after a standing session, and even her hands are beautifully soft in the evenings.

At speech last week we were working on matching colors, and when we turned to the yellow page Abbie said, ‘Yow, yow, yow…” I have learned to give her the benefit of any doubt, so we took that as “yellow” which was a cause for celebration. She has gotten a few new words this week, but so far they are in Abbie-language and I can’t decipher them yet. But, they are new strings of sounds repeated intentionally, so hopefully I’ll be able to figure it out soon.

We went tent camping this weekend for the first time in ten years….and, boy, has the Earth gotten harder in that decade! Air mattresses are a must in middle age, I suppose. Abbie did great, and really enjoyed swinging in the hammock watching the trees sway above her. In the evening we had friends join us for dinner and S’mores. As much as Abbie loves being around kids, the frustration overwhelms her and eventually she just shuts down.

I watched this happen Saturday night and tried not to be mad at God for what she is missing. I was internally shouting, “She’s missing her childhood!!” And heard, “Is she really, and is she the only one? What about the kids living right now in slavery, in poverty, in hopelessness…what about the kids on the move with their refugee families? Are you this mad about marshmallows and a campfire?”

Well, yes, I am mad about marshmallows and a campfire, and playing in the sand, and running from the waves, and catching crabs in the dark, but at least I have perspective now….and sometimes that helps.

And yet again, as has happened so many times…just when I’m sinking in the muck of my heartache, God reached out to me through someone I’ve never met. This time it was Bryan A., an attorney in Alabama, who took the time to write me an encouraging note. Talk about timing…and who would ever think that a lawyer could also be an angel??

Oh! One note for folks in Hawaii, and those needing a good reason to visit, Dr. Tennant will be here August 17-19. The evening of 8/17 he will be giving a free lecture, while 8/18-19 will be the training seminar for the Biomodulator. You know how highly I think of Dr. Tennant and how much the Biomodulator has done…it you are interested in either or both of these sessions (the free lecture requires a reservation because of space) just drop me a line at varasix@aol.com.

Abbie is well, the family is well, and we just have to keep pushing. Please pray for endurance and vision for me, and for complete healing for a girl longing to play with her friends!

Monday, 6/12/06

As some of you may have seen in the guestbook, this Saturday was probably the most stressful day we’ve had with Abbie since her initial discharge. Around ten in the morning we were getting her ready to go for an outing with her brothers, and I noticed some weird activity. She would turn her head to the right, it would pulse a few times and then she’d be back to normal. They started becoming very frequent – every two minutes or so, and the intensity increased to the point where her left leg would lift up during some of the pulsing with her head. We observed and took careful notes for over an hour, and then finally called her neurologist, Dr. O.

Dr. O. said that what I described to her sounded like focal seizures. In themselves, they are not dangerous, but the type I was seeing can generalize through the whole brain and involve the entire body, which would be dangerous. At her assessment my out-of-body experience began…the kind where the screaming, crying, scared lunatic exits the body and a calm, rational, trusting person remains to deal with the situation.

She prescribed an emergency medication closely related to valium to stop the waves of seizures. I had to go to the children’s hospital to get it, and the drive gave me time to calm my breathing and thinking. This all felt much like a pop-quiz to me. It was like God saying, “You think you are getting good at this trusting Me thing…well, let’s see if you are right.”

I have feared seizures since the very beginning. I didn’t want to have to put her on a drug that would cloud her or make her groggy – that would make it exceptionally easy for outsiders to dismiss her potential. I was scared about the damage seizures could do to her fragile brain. And it was another one of “those kind of kids” labels I didn’t want her to bear.

I haven’t felt the separation from the world around me as acutely since she was in the PICU – I remember being stunned by a trip to the mall back then, and how idiotic the amount of energy spent deciding between a pink or yellow top seemed. I walked in a bubble to the pharmacy window and had them explain to me in detail how to give the med, which is delivered rectally through a syringe. They were also very clear about the indications for a trip to the ER. My spirit was groaning at this point and the world seemed silent to me.

I had to stop at Long’s to pick up her Zyrtec on the way home. As I pulled into the parking lot I knew I had to get this settled in my heart. I finally just cried and recalled Job’s words, “Though He slay me, yet will I hope in Him.” (Job 13:15)

Through tears I said, “If she needs medication, I trust You; if these seizures generalize, I trust You; if they become so bad that You take her away yet leave the shell of her body here, I trust You and I will love her no matter what.” And I reaffirmed in my heart that as incredibly much as I love Abbie, I love Christ more.

By the time I got out of the car I could hear the world again, I realized it was a sunny day, and I even remembered to pick up dishwasher detergent.

I got home to find Abbie resting peacefully in Ray’s arms. She wasn’t having any more seizures, so I decided to wait and watch. The medication would’ve knocked her out for eight hours, so I didn’t want to give it if she didn’t need it any more. That was two days ago, and we haven’t seen any more strange things, praise God!

Yesterday we took Abbie to church like normal, and she did great. We then went out to lunch and then to the Pacific Club to play paddle tennis and swim. She really enjoyed being out with the family and was comfortable all day. In the evening Ray and I went to a very beautiful and exceedingly special wedding…there was so much love in the families that we felt privileged to be part of the event. My heart ached for Ray, though through things like the father-of-the-bride speech where the dad talked about how it drove him crazy because he couldn’t always protect his daughter, and through the father-daughter dance to “Butterfly Kisses.” I pray with all my strength that one day Ray gets to do those things as he gives Abbie away.

Today was another good day for Abbie, and we even saw some improvements. As she was laying on her side I put an abacus by her and ran her hands along all the colorful rows of beads. We counted them, talked about the colors and moved her very relaxed arm back and forth. After a few times, I told her she could do it by herself. And she did! She used to raise her arm with one big heave, and wherever it landed, there it was. Now, she has much more control and intent. She was very frustrated at times, and I had to encourage her over her cries, but she kept at it. She knows when she does a good job, and she was rightfully proud of herself tonight.

We will most likely be scheduling an EEG this week to see if we can catch anything suspicious going on in Abbie’s brain. Dr. O. spent a very, very long time on the phone with me on Saturday (we are blessed with amazing physicians…well, amazing people who happen to be physicians). We talked through the pros-and-cons of all the maintenance medications, and decided that if we do have to start one we will most likely choose Tegretol. I told Dr. O. of my severe reservations about making Abbie groggy or unresponsive, and she said that wasn’t acceptable to her either. If that does happen, she said, we would just have to find a different medication. I feel much better now, knowing that we have common concerns and goals for Abbie.

Abbie starts her three-times-a-week physical therapy this week. Her Botox is really kicking in, and I am excited to see what we will be able to accomplish. I will be sure to keep you posted about the seizures, but also about her strolls down the hall!

Tuesday, June 6th

I hate it when I let a few days pass between updates, because then there’s so much to write I don’t know where to start and what to leave out. I guess for today I’ll begin in the present and work backward. Abbie had a terrific OT session today. She was sitting in chair, using a spoon to scoop rice. She was very attentive and concentrated hard on what she was doing.

By the end of the session she could do it by herself! Several times we helped her bring the empty spoon to her mouth she said, “Hungry!!” I was happy to see her so engaged and vocal, but wasn’t surprised since she’s been able to say “hungry” for a long time. However, a couple minutes later she vocalized again, and this time it was definitely something new. I heard “do it” and Arlene heard “do it myself”. That would be so fitting for Abbie to say, since “Abbie do it” was her favorite slogan before she was injured.

She also did a great job visually today, really focusing on what she was doing, which was encouraging to see. Even Arlene mentioned that perhaps we ought to be videotaping the therapy sessions now since Abbie seems to be changing so rapidly.

This morning I was out helping Chase and Kyle wash my van (we’d forgotten it is silver.) I came in to get something and Crystal said, “I took a picture of Abbie—she rolled over by herself.” Abbie is pretty good at rolling from her side to her back, so I assumed that was what happened. But, Crystal said, “No she started on her back and brought both her arms all the way over…look!” And there was the photographic evidence of Abbie’s first independent roll from her back.

Last night the twins had a performance at school, which unfortunately RJ was too sick to attend. We just walked down rather than go through the drill of loading and unloading Abbie for a two-block drive. All the gates around the school were locked on the assumption that everyone would be driving and parking in the parking lot on the far side of the school. Running late, we didn’t want to walk the long way around on the sidewalk so we cut across the ballfield. The grass is very bumpy and I was a little concerned about Abbie’s head and neck…silly mommy…I should know better by now. For the smiles we got during that ride I would push Abbie on the “bumpy grass” all day. She was grinning so broadly I thought her cheeks may break. We always try to make things calm and smooth, when in reality Abbie is sitting there thinking “Bring it on!!”

The Botox shouldn’t be hitting its peak until next week, but it seems that it’s kicking in a little bit already. While she’s on her back and I can bend her knees way past 90 degrees without any effort. We can take a straight leg out to the side (“abduction”) to almost 90 degrees (they measured her at 30 degrees the day of the procedure.) Her heel cords seem a little looser, but I am hoping to see much more improvement there.

Last Friday we were incredibly blessed by a Casting Crowns concert, which was opened by awesome praise and worship led by a coalition of 15 churches. We were in an upper section, looking down on perhaps 5000 people, and I thought, “Wow! All these people are my family…how cool is that??” If you’ve never heard Casting Crowns, go buy their new CD “Lifesongs”..now! It is much more than music, it is ministry. Although the music is also very good, as their recent Grammy attests. (You can listen to samples at www.castingcrowns.com) I was encouraged, challenged, comforted and renewed at that concert.

And, we also came home with one more child than we went with. Three-year-old Malehloa lives with her mom and brother in Lesotho, which is a small mountainous country in southern Africa. My sister met her husband while they were both serving there in the Peace Corps, so I knew Malehloa was meant for us. Plus, if there were ever an African twin of Abbie, Malehloa just might be her. Casting Crowns works with World Vision to educate about the needs of children around the world and encourage sponsorship of children in need. As their lead singer put it, he thinks it should just be a part of becoming a Christian..”You said the prayer, you got baptized..now here’s your child!” I am ashamed at how long it’s taken us, and how many infomercials we’ve watched and not taken action…but, now we have a precious girl to pray for and support. Please visit www.worldvision.org/hope to find the child who is waiting for you.

At church Sunday I was thinking about the flame of God, and heat, and fire. Wondering why we have to go into the desert to really experience these things. A comfort verse for me is Isaiah 51:3, where the Lord promises to comfort Zion, and “ her desert He will make like Eden.”

This verse has been with me since a few months after Abbie’s accident, when it was becoming apparent that we weren’t going to get a quick recovery and were instead headed for a desert journey. And, He has been true to that word for me. He hasn’t taken me out of the desert, but His continued presence has made it a garden.

Still…why not send the flame in the garden?

I just finished reading The End of the Spear, and was imagining the Amazonian jungle of the Waodoni, and what would happen to it if fire came down from Heaven. It would smoke a lot, there would be fire, and it could cause some devastation, but eventually the jungle would reclaim what had been burned. In the desert, however, there is lots of sand…and when tremendous heat meets sand, glass is produced. Unlike a charred patch in a hungry jungle, the substance is changed forever. And if the heat is applied appropriately – the right temperature for the right duration, the glass will be transparent. Isn’t that what He’s trying to do in our trials – not punish, nor defeat nor shame, but to change us into a transparent image through which His image can come through?

I don’t want to smoke and flame and suffer and then become exactly who I was before the trial, I want this to change me forever for the better. And the only definition of “better” which holds up is to become more and more like Him. So, I will thank him for the desert and acknowledge that while He’s allowed me to receive the lessons and transformations of the desert, He has not allowed me to experience the true brutality of it…He came to make it a garden for me.

This photo,taken by my sister, captures the essence of this journey for me. Each day I am along for the ride as Abbie takes another step, and each day I sit back and look at her in awe.

Thursday, 6/1/06

Abbie’s Botox procedure could not have gone any more smoothly. She was bright-eyed at 5:15am as we were preparing to go to Shriner’s. I told her we were on the way to get the good medicine in her legs to make them nice and loose, but that it wouldn’t hurt at all. I got a big grin and flashing eyebrows for that comment.

I cannot say enough good about Shriner’s Hospital for Children. Their staff was wonderful, the process was smooth, and Abbie was cared for exceptionally. It also seemed like Old Home Week. The first family we saw were friend from Abbie’s speech group at UH; they were also there for Botox . Then, we saw a boy we knew from our PICU days; the nurse who took Abbie into the OR was from those days as well. I marveled out how much our world has changed when going for an OR procedure is like going to the neighborhood grocery store.

The effects of the Botox won’t really kick in for a couple of weeks, so at that time we will start doing PT three times a week. I am excited about what changes we may see during this summer. Abbie received injections in her calf muscles, quadriceps, and inner thigh muscles. The surgeon assessed her range of motion while she was under general anesthesia and was very pleased with what he saw. I also had him check her left should in the recovery room, while she was still very much “under the influence”, because I was concerned that it was coming out of the socket. I was expecting him to agree, and was trying not to be anxious about what that would mean. He said, “Yep, she’s lost some internal rotation, but I don’t feel anything structurally wrong.” I was relieved when he said it was an issue we can just work through with OT and PT.

It was fun to watch Abbie interact with things going on around her – when we told her that one of her wristbands was purple we saw a dimpled smile. I kept her “yes” switch in her right hand, but I programmed a song into it so it would play a line each time she activated the switch. That kept her entertained most during most of the pre-op waiting. It is so nice to be able to get a notable reaction just by talking to her.

I’ve also recently received the divine gift of another traveling companion/guide. Several brain injury families I correspond with had mentioned a physician in North Carolina who has researched focused electrical stimulation in coma patients. I was intrigued by this, but didn’t have the time to get in touch with him and explain our situation. Then, one day after visiting Abbie’s site, he emailed me. The protocol he has used in his research involves stimulating the right median nerve using conductive patches on the inside of the right wrist. I thought, “Hmmm – perhaps I can try this with the Biomodulator.”

Dr. Cooper’s research indicates that patients who are a year or more out from their injury require at least a year of two of this therapy to achieve results. I wasn’t expecting to see anything very quickly – but (here we go again) Abbie has proven me wrong. Earlier this week I was lifting her shoulders off a pillow to sit her up, and she just sat up on her own – right to a perfect vertical position without falling forward. I was in shock. In the prone position Abbie will usually push her hands down to her hips in an attempt to move, but this week she reached forward and opened her hand at the same time – totally new.

She is getting stronger with her right arm and hand, which is especially evident in her switch usage. I hesitate to ascribe all this to something we just started doing, but it’s the only new thing we’ve added lately. I think perhaps we are seeing results so quickly because we have spent almost a year working hard at increasing Abbie’s overall voltage.

So, life is good at our house tonight. As much as I knew the Botox procedure was minor and didn’t feel apprehensive about it, I find that now that it’s over there is weight lifted from my shoulders.

Last night I had many good dreams, which is a rare occurrence lately. The one that sticks with me was very vivid, and I think it’s because it was from the Lord. I was walking in a heavily wooded place and heard, “Sometimes you have to walk where there is no trail and leave a path behind you.” I could see that although there was no trail, I could still clearly envision the way to go and had no doubt about eventual arrival at the destination. Truly, I felt it was a confirmation that we are doing the right things for Abbie and just need to persevere. In that, not only we she be healed but my heart’s other desire will be fulfilled – Abbie’s journey will make a broader, smoother path for other families to travel in the future.

“Hope is hearing the melody of the future. Faith is to dance to it”– Ruebem Alves

Saturday, 5/27/06

Things are happening with Abbie so fast that I can barely keep up with her. Time to write was a little tight this week because the 7th and 8th graders from Kyle’s school went to Washington DC and Ray went along as a chaperone (no hazardous duty pay for him, though). We’ve been going back and forth filling each other in on all the great things about this week, from Mount Vernon to speech therapy to Gettysburg to Abbie reconfirming her status as a Daddy’s Girl.

Her speech therapy session on Tuesday was amazing. She has learned to differentiate her left and right hands for “no” and “yes” so much more quickly than we’d even hoped. We used her new expertise to allow her to play a matching game. Lisa, her therapist extraordinaire would show her a ball and then ask her to find the other ball she’d hidden under one of three cups. Abbie would have to ask to look under the cup by saying “yes” or choose not to look by saying “no”, she would then have to tell us if “yes” it matched the ball or “no” it didn’t. She did great at this!

Before we could really begin, though, Abbie would have to tell us she whether she was ready to work or not. This gave us a glimpse at just how “age-appropriate” she is. She completely ignored us and wouldn’t activate either switch. After waiting a while, I told her “OK, if you just want to take a break I’m going to talk to Auntie Lisa about something else.” Within a moment of starting my separate conversation, Abbie would say “yes”, she was ready to work. This happened more than once. She cannot stand to be left out or not be the center of attention and conversation.

During the last round of matching the ball I thought Abbie caught a peek at where Lisa put the ball and even kidded her, “No cheating, Abbie!” She told us she didn’t want to look under the first cup, and also said “no” to the second cup. When asked about the third cup she said, “yes” and there was the matching ball! I think it may have just been a coincidence, but we have learned never to underestimate Abbie.

On Thursday we went walking down the hall at PT for the first time in several weeks. She did a good job at assisting through the movements, and on the last few steps even pulled her legs through herself. With her Botox appointment upcoming (June 1) I am anxious to see how it may help with this particular activity.

As Debbie’s shift was ending on Friday she was so energized and said to me, “I don’t remember having a day like this with Abbie – she was so engaged, so communicative – she even picked out her clothes today.” I looked down to see Abbie in a dress, which really surprised me. I don’t recall the last time she picked out a dress to wear. Debbie was also a little curious about this unusual choice, so she questioned Abbie about it. It turns out that Abbie picked out the dress because her Daddy was coming home on the big airplane and she wanted to be extra pretty. She even picked out her hair pretty for the day, which complemented the dress perfectly, I must say.

It is wonderful to have the whole family together again, looking forward to the summer. This weekend though, we will join all of you in remembering the monumental sacrifice so many families have laid at the altar of freedom. The blood spilled, the lives given, the tears without number. To the families who have borne this burden for all of us – we don’t even know how to begin to thank you and only wish we could shoulder some of the weight for you. But, on this day we can tell you that your loved ones will not be forgotten.

Sunday, 5/21/06

It’s been a week of smiles and silliness. Abbie seems to be feeling much better these days, and I hate to admit I think it’s because I made a new batch of her vegetable mix with less greens and more squash which seems to be easier on her stomach. I suspect the poor girl may have just had a tummy ache for most of the last month!

We went to see her ENT last Thursday to suction out Abbie’s ears. That girl makes more wax than ten kids put together. I was amazed at what came out of those ears, and was happy to think it may make her more comfortable and better able to hear. But, the real blessing of the visit was having Dr. T. see Abbie in action with both of her switches. She stood back and said, “WOW! She is right there…I mean, she is just stuck in her body and all we have to do is get her out…she is right there!!” I believe I danced a little jig in the exam room. Dr. T. has always been so positive and supportive, but this went way beyond that. We moved from her encouraging us to stay positive to really believing herself. Glory Hallelujah and thank God for switches!

On Saturday we had the end-of-year baseball party for the twins’ baseball team, the Warriors. Actually it was as much an event for the “Warrior Princesses”, since almost every boy on the team had a sister, and the games were just an excuse for them to get together and play. They doted on Abbie all season, and truly saw her as one of them, not just a different little girl in a wheelchair. Abbie enjoyed all the action, and even lay on the grass with the girls for a while. Actually, I had laid her down to change a diaper, but pretty soon they gathered around her and spent time together looking up at a giant tree and the blue sky…what great friends.

There were many comments that day as well about how strong she looked, how responsive and engaged she was, and, unfortunately how frustrated she was by not being able to go in the bouncer or play the games. This baseball season was a complete blessing for us as we were surrounded by awesome, Godly families who shared their food, daughters, and hearts with us.

Abbie is so engaged now that we can get a grin just by telling her jokes or calling her funny. She is becoming quicker and quicker with the switches each day and is terribly cranky when she doesn’t have them in her hands…of course, I wouldn’t like someone taking my voice away either. She is absolutely relishing the ability to say “No!” over and over again. For the last 18 months she’s only been able to say “yes”, with her “no” being just the absence of a button-push, but no verbalization. It just seems like things are speeding up as far as her communication, interaction, and understanding, which makes every day fun.

Of course, not every moment of every day is fun, though. But, in some ways I think that is a good thing. It keeps my mind focused on the Lord and reminds me that He is my Strength, my Source and He sees the end from the beginning. I was driving to town earlier this week, thinking about things from an eternal perspective and what it will be like when we can truly understand it that way. I thought “What if what appears to be the greatest tragedy he could’ve sent our family turns out to be His greatest mercy??”

Abbie’s injury forced a sharp left-turn in our family’s life plan and path…what if it was for our protection? What did we not or will we not have to experience because of that left-turn? So many times it’s easy to assume that life would be wonderful if Abbie had never been injured, but that thought is certainly a mirage. Perhaps all would be terrific, it would almost certainly be easier logistically, financially, and physically, but in the things that matter…our hearts, our spirits, our character, our contribution…perhaps this trial is the kindest thing He could’ve done for us as we seek to become truer reflections of Him.

As I sit back and read what I’ve just written I think, “Oh..that’s sounds so very spiritual and pious!” The thoughts above are mine in my best moments on my best days. Please pray for me to stay in that place more often!

The twins are taking turns sleeping with Abbie, and tonight RJ is on duty. They are spoiling her rotten, and she loves it. They are being so fulfilled by the immediate reactions and varied responses they can now elicit from her. They know without a doubt that they are making a difference, making her happy, and making me proud.

One last thing…I can’t believe I’ve left this out of updates until now…please visit www.princessmadison.org. Madison is a twin, and has three brothers, so I have much in common with her mom, Gina. Madison nearly drowned on March 22nd and is now in the midst of the battle we’ve come to know so well. She will soon be headed home from rehab, and she and her family could really use your prayers!

Thursday, 5/17/06

Many things to update…we did visit the neurologist last Tuesday. She spent and hour and half with us, which was amazing. But, talking about Abbie’s brain for that long was not enjoyable. Dr. O. had last seen Abbie when she was in the hospital getting her Nissen, in Sept. 2004, so Abbie is quite different now.

During the exam she had great head control, was responsive and involved in the conversations, but her tone was higher than normal. She really does hate doctors offices. Of major concern is possible seizure activity that we have been noticing lately. There are times where Abbie just “checks out” for a few seconds, a so-called “absence seizure”. We cannot confirm exactly what these are, and so we are observing her and noting times of apparent seizures for one month. At the end of that month we will follow up with Dr. O. and most likely will then put Abbie through a 72-hour EEG to see exactly what is going on. The suspicious activity is not frequent or overwhelming, but seizures can cause damage to the brain so we want to get on top of this. Please pray that we would be wise, and that Abbie will not require medication.

As we were going through that exam I reminded myself that exactly two years earlier this same, very kind, physician gently counseled Ray and I that our options were to disconnect life support or watch Abbie die in a chaotic fashion. Oh, how far we have come! And now we can face these next steps holding the same Hand that led us through those dark days.

We went to OT directly from the neurology appointment, so by the time we arrived the conflicting feelings I’d been suppressing bubbled to the surface and I had a bit of meltdown. Arlene is so compassionate and I think she used that session just to encourage me. She said, “Let’s really break this down..I want to know exactly where Abbie’s challenge is.”

She gave Abbie a command to use her spoon. She felt Abbie’s shoulder and elbow relax as she attempted to follow directions. After observing her response, Arlene said, “OK, she clearly understands the command, she knows what she wants to do, which includes know where her hand is and what it’s supposed to do, she issues the command to her hand and it travels down her arm, but she just can’t quite complete the motion…so, basically all we are dealing with is a motor problem, not a cognition problem.” That was reassuring, because Abbie understands what we are asking her, understands what it takes to do it, and is trying, we just have to get the motor part of her brain working better. Much easier said then done, but just today I saw a quote that said, “Very often the impossible is simply the untried.”

Today we spent the morning at Shriner’s doing all of Abbie’s pre-op visits for her upcoming Botox procedure. On June 1st Abbie will have Botox injected into her gastrocnemius (calf), quadricep, and inner thigh muscles to allow them to relax and have a greater range of motion. I was so very pleased that Abbie chose to stay calm during all these appointments (we saw 3 doctors, 2 residents and 2 nurses) so that her muscle tone was beautiful.
She also did a terrific job of using her switches to interact with the staff. She is now using a switch in her right hand to say “yes” and a switch in her left hand to say “no”. This is a huge step, requiring a clear decision about how she wants to respond and then motor planning to use the correct hand. Her responses today were timely and appropriate. We always tell the staff that she is cognitively age-appropriate, but today she showed them herself. Hooray!

A quick update on “Big Ben” as Abbie and I call our Marine friend recovering from a traumatic brain injury. I spoke with his wife last week and asked if he’d gotten a chance to use the Passy-Muir valve on his trach so that he could try to talk. She laughed and said, “He kinda blew by that. They took out his 6.0mm trach, gave him a 4.0mm, and then capped it, all within a few days.” Those of you who’ve dealt with trachs know how phenomenal this is. This has allowed Ben to have conversations with his wife!! Absolutely unbelievable! Almost all of his comments are appropriate and he even talks differently when his friends call as opposed to when he speaks to his wife and mom. I told Carissa that it seems kind of backwards since his accident happened so long after Abbie’s, but Big Ben has given us a lot of reassurance that miracles do happen!

I was watching a travel show recently when the host, who was floating down a lovely river in India in a houseboat said, “And in the end, the journey is the destination.” No, no, no!! I know this is a popular saying, but it’s totally wrong. The destination is the destination, the journey only fits us for our arrival. I don’t think any parent sitting in an ICU or an oncology ward or a cemetery would agree that this sometimes very painful journey is our destination.

Lately, Heaven has become very real to me, as real as the barstool I sit on to type this. All this time I fear I am missing with Abbie, and my boys as well; all the hopes I think are dashed, all the plans that have changed, perhaps forever – they are miniscule in the light of eternity. This time will be redeemed and I will have a perfect Abbie in a place outside of time. This reality keeps my hands on the plow and my feet moving forward. The grips to my personal plow are attached to a wheelchair, and the row we have to hoe is not one I would have chosen, but I am thankful that the persistence this journey requires keeps me bound to my Yoke-mate daily. A huge knife through my heart is the thought that “we have lost her forever.” But, like most things that discourage us, it is a lie. We have only lost a little time with her, and what we do in this in-between time will matter forever. So, for now I bid you adieu, for I have plowing to do!

Monday, 5/7/06

Thank you for all the prayers sent our way on 5/3, the two-year anniversary of Abbie’s accident, we could really feel them. Some very special friends took me out to a beautiful and relaxing lunch, during which I shared with them how gracefully and tenderly God was carrying me through the day. That evening, as happens every Wednesday evening, our small group gathered in our home. It seemed so fitting, because this precious group of people met with us at the hospital for ten Wednesday nights in a row after Abbie’s accident. They were our safe place to decompress, to cry, and the gather our courage and hope again.

Ray has a harder time on Wednesday than I did. I had done most of my grieving on Monday, 5/1. Because the accident happened on a Monday, the first Monday in May is always much more reminiscent for me than the actual date. We saw again, though, that the Lord is true to his Word, and he carried us through yet again.

We capped the week with what we all agree may be our best weekend since May 2004. It was RJ and Matthew’s 9th birthday, and we hosted their first sleep-over birthday party. Just before the party was set to start, Ray looked at me and said, “Did we really think this all the way through??”

At 5pm 9 guests arrived, and by 5:15 Ray had them walking down the block to play football at the park. I stood back and took photos, but did a poor job capturing what was going on in front of me. The boys were a joy to watch, but what gave me the biggest smile was watching Ray, completely absorbed in playing quarterback for both sides, making sure every boy caught at least one pass, and laughing like I haven’t seen him laugh in ages. It was a moment to sit back and realize how blessed our family is to have him…he is an awesome dad and husband.

So, football, swimming, presents, cake, a playstation tournament and Chronicles of Narnia on TV wore out the crew sufficiently that all was quiet on the family room front by midnight. Then, Ray woke up at 6 to make French toast and entertain the troops until noon. They were all wonderful, and we were so happy to see what great choices of friends RJ and Matt have made. In talking about the weekend, Ray and I agreed that the first year after Abbie’s injury was all about survival. The second year, we became a family again – we moved Abbie and I back into our bedroom, we merged Abbie’s life and the family life, and tried once again to do things together as a family. This third year, though, this is the year we are going to thrive again as a family. We are excited to see Abbie blossom, but also excited to see our family experience happiness and joy together again. We do not have the flexibility or spontaneity that we used to take for granted; our first response to the boys’ request to go to Disneyland is “How fun!” and the second is “How in the world could we do that without splitting up the family?” But, we see God bringing the joy and happiness right into our home – no airplane tickets, no car rides, no grand scheme necessary.

Abbie had a tough week physically last week. She was obviously in pain, which caused much higher tone. Usually she’s good about letting us know what is bothering her, but this time was more tricky. It did seem to coincide with her feedings though, so I started to worry about her tummy and gut. Turns out, yet again, that her mother is just a little slow on the uptake. The poi I was using in her food had gotten a little to fermented. When I left it out of today’s feeds the difference was amazing. Please pray for her muscles to be nice and loose so we can do a lot of standing this week.

The biggest prayer request today, though, is about an appointment we have tomorrow. We are going to see the neurologist for the first time in 18 months. Can you tell I’ve been putting this one off? Please pray that Abbie will be feeling good so that the doctor can get an accurate assessment of what she can do. Please pray that we can have a good conversation and ask good questions. Most of all, please pray against discouragement and despair – they are both a choice, and I don’t want to choose them tomorrow. We will almost certainly schedule an EEG, but I am not sure what else could come out of the appointment. Please just pray that we remember what a little light Abbie is, how strong she is, and how far she’s come!

Wednesday, 5/3/06

Two years….two years that seem like forever. Two years that seem like the blink of an eye. Two years that don’t even seem real, two years of the harshest reality that we have ever known.

Abbie had the best babysitter in the world, Ashley. They spent every Friday evening together as Ray and I enjoyed our weekly date night. Recently, Ashley’s younger sister, Karri, called me about a paper she is writing for school. She has chosen Abbie as her subject and wanted to know a few ways Abbie’s journey has affected people. I asked for time to think about that, and promised I would email her an answer. After I was done typing, it ended up being a pretty good summary of the fruits of these last two years, so today I share it with you.
“It was such nice surprise to hear from you today! Here are some thoughts off the top of my head about the effect Abbie has had on people; I’m starting with the closest and working my way out:

1. Her family: We’d never even seen a child with a tracheostomy, or known a family with a child who used a wheelchair before Abbie. Now, we have met many families with children with very special needs — the families are heroic, the children are amazing, and our hearts have forever been changed. Abbie’s four brothers will grow up having much more compassion and understanding for people with special needs of any kind. The twins also have the coolest ride in school –they can ride their bikes up the ramp into our handivan — they always make sure their friends are watching when they do this.

2. Her family of faith: So many people have prayed for Abbie since the beginning of her journey. I have no doubt that is why she survived an “unsurvivable” injury, and was able to get off the vent, although they said she never would. Abbie is a testimony to the power of prayer. Her journey is also teaching us persistence and perseverance. She is now cognitively age-appropriate, locked in a body that doesn’t respond well to her commands and wishes. This is nothing short of a miracle, but it also calls for continued prayer to free her from the chains holding her now. I can no longer number the people who’ve called, written or posted on herweb site who have said that Abbie’s journey has either helped them find faith or strengthened that which they already had. This awes me, and helps me realize that there is a much bigger plan for Abbie than I can sometimes see.

3. Hawaii’s special kids: Abbie’s journey has and will improve things for all children with special needs in Hawaii. Through her Abbie’s Angels fund we’ve been able to purchase very special pieces of equipment to get kids walking and eating sooner. But, that is just the start. Because of Abbie I am deeply involved in starting the HOPE Project, which will address the needs of challenged children and their families. There are huge gaps in available services in Hawaii, and our non-profit organization is planning to open day-programs, provide in-home therapies and strengthen and support families. I was completely unaware of this portion of Hawaii’s population, let alone how deep the needs are — now, Abbie has shown us how much is possible when kids get what they need, which includes the assumption that all children have potential and are worthy of the very best shot we can give them.

4. Brain Injury survivors: Abbie’s journey has led us to the edges of technology, nutrition, and therapies — we are always pushing to find what will work best for her. She has taught us much these last two years, and now we are able to reach out to others travelling the same road and give them information and hope. The people she has touched this way range from toddlers injured in the same manner she was, to teenagers injured in a car accidents, to a 26-year-old Marine injured in a training accident. Every time we feel like we are hitting a plateau or a dead end, God will provide a new tool, method or person, and it’s now our privilege to share these things with others.”

But, what I didn’t share in that email was how profoundly this has affected our family’s grasp of how unbelievably blessed we are. We have the most incredible, thoughtful, caring, supportive friends and family – the way we have been carried through these past two years is a testimony to God showing his love through people. I always grin when people who follow Abbie’s site and pray for her ask, “How do you do it?” I grin because I am looking right at the answer as the person speaks – it’s your prayers, your caring, your help and most of all your sharing in our hope.

I’d be lying if I said I wasn’t a little apprehensive as this day approached. But, Abbie and I have been enjoying hour long walks each morning lately, and that’s a time of real enjoyment and encouragement to me. Just yesterday, strolling with Abbie I thought, “The grace of God is abounding in my life!” I knew that phrase would get me through this day, because it is true and it is powerful. God reminded me of how He completely carried and protected us through those initial frightening days, and questioned me about why I was scared of the anniversary, as if He couldn’t carry and protect us again. So, I find myself typing this with a smile on my face, Abbie’s legs across my lap, celebrating God giving her to us for a second time, instead of mourning a loss with tears in my eyes. God’s grace is truly abounding in our lives! Thank you for your companionship – I have never felt alone. Thank you for your prayers – Abbie’s name is well-known in Heaven. Thank you for sharing in our hope – hope never fails. And, thank you for your love – love always wins!!!

Abbie on her first real horse ride! I was blessed to get to go along for the ride as well. She really enjoyed the horse and was very relaxeduring the ride. She also like petting the other animals at the farm, but wasn’t as fond of the smell.

This is Abbie standing in her Walkable. We can adjust how much of her weight she bears while she is in it by raising or lowering the bar her harness is attached to. Abbie loves being in the Walkable and totally relaxes her legs as soon as we start putting the harness on.

Monday, 4/24/06

Thanks to so many of you for your thoughtfulness and kindness since my last posting. In the days that followed that update the Lord said “It has to be this hard.” I muffled my spiritual whining and was taken back to the 8th day after Abbie’s accident, standing at the lightbox, looking at her MRI and CT scans. As we looked at those heartbreaking images, He said, “It has to be this bad.” I don’t really like either of those statements, but I know the injury had to be this bad so that His power could be manifest more greatly. I was unsure about why it has to be this hard, but today provided me one big, sweet clue.

I was privileged today to meet Ben Tourtelot, his wife Carissa and mom, Lisa. Ben is a 26-year-old Marine, who was on rappel about a month ago when he fell 110 feet, landing on his head. As RJ asked me how in the world he survived all I could say is, “God is powerful”. Through mutual friends, we got linked up via the phone last week, and I was very much looking forward to meeting the two women who love him, and sharing with them how much hope there is. But, honestly, given the circumstances of his injury, I was very unsure what I was going to see when I got to the Tripler ICU.

I arrived as Carissa and Lisa were giving him a shave, so I had some time just to watch him. I realized how much I’ve learned over these past 2 years, as little details stood out and practically had me jumping with glee. He follows directions, licks his lips, moves his arms and legs on command, tracks with his eyes, and totally understands what is going on around him – absolutely unbelievable. After they had Ben looking handsome, we moved to a waiting room where we could talk openly. As I shared with them all the great things I’d seen in just that short time, their faces broke out in grins that lit my heart. Then I knew – Abbie’s journey has to be this hard so I could recognize all those little details and explain to them why they are so meaningful and hopeful.

After we talked, I took Abbie’s switch back to Ben’s room and introduced myself. I said, “Hi Ben, I’m one of Carissa’s friends, Tiffany. And, I brought something with me to help you talk to her and your mom. I’m going to put this purple button in your hand. When you want to say something, just press it.”

I’d already programmed a message just for him, but sometimes it can take a long time for a brain-injured patient to understand how the switch works. Carissa put it in his hand, and told him to just take his time and think about what he wanted to do. In less than a couple minutes he pressed the switch to say “I love you” to Carissa for the first time in a month. He pressed it about 4 times in the minute that followed. I was overcome with joy and said, “Oh Ben, you’re a champ! NO ONE learns how to use the button this fast – only you!!”

Please pray for Ben to recover with continued amazing speed – he and Carissa are expecting their first child in two months, and the man I met today has a spirit and heart driving him to be a part of welcoming his child to the world. He also has an amazing wife and a devoted mother – pray for their endurance, strength, and spirits.

On the Abbie front – it’s been a bit of a challenging week physically. Something is causing her pain, most likely her teeth, and that results in increased muscle tone and unwillingness to cooperate with her exercises. She is actually getting her first permanent tooth in front! I thought she lost those three lower baby teeth because of the trauma of intubation, but perhaps it was just time. It is emotionally painful for me when I can’t figure out what is wrong and make her feel better. Please pray that we would either “get a clue” or it would resolve itself.

Meeting Ben today was a fresh reminder that miracles do indeed happen, and that hope resting on Christ is never false. And, He has used you this week to remind me that I never, ever walk alone — thank you!


HE IS RISEN!! He is risen, indeed! Our whole family would like to wish you a very Happy Easter. It was a sunny day here, full of much celebration. And, right now I’m struggling in my heart about how honest to be in this update. Well, honesty wins…the sugar-coating will be saved for the candies in the Easter baskets.

Today was a very difficult day for me, and I cried more deeply than I have in a long, long time. I think there are many reasons. Easter is the last holiday we celebrated with Abbie before her accident. It was a wonderful day spent with special friends, and those memories are so clear. The realization that two years has passed since then is hitting me hard. Life has gone one, everyone’s children are so much bigger, and yet part of my heart is frozen in Easter of 2004.

It’s also difficult because little girls look particularly beautiful on this day, all done up it frilly dresses and hair bows. I told a friend this morning that it’s one thing to know you are hungry, but quite another to have to sit across the table from a jolly person gorging on a feast. That’s how I felt today. I can’t believe I’m writing this, but it’s the truth.

My heart was so crushed today that as I lay on my bed in the afternoon, I was screaming at God in my head. Not an angry scream, but an anguished one. I let myself give voice to all that I am feeling, which I never allow myself to do. There are so many needs I must meet, and I can’t do that if I’m sobbing on the floor in a puddle of tears, so it’s safer just to never even start down that path. For one moment I suspended all my rationalizations and realizations about how much we are learning through this, how many wonderful people have come into our lives because of Abbie, and what a huge plan He has for her. And, then I just allowed myself to admit how much this hurts. It was almost scary to face that, but it was good.

I don’t think I ever appreciated God’s grace and mercy until I had a need this deep. Yesterday, there were literally times I could not have taken a breath without Him helping me to do it. I am learning much about what it means to abide in Christ minute-by-minute, because I am unable to do anything else. And, perhaps that was His Easter gift to me.

Abbie did get to pet a bunny, lamb, goat, dog and cow at the petting zoo set up at the Pacific Club, where we had lunch. She soaked it all in, and then told me all about it when we got home. She is quite the jabberjaw lately – answering as best she can whenever we ask her a question, and very often giving unsolicited opinions about things.

I see her spirit, and her heart, and I rejoice. I was thinking this morning about brushing her hair on the morning of her accident, and how I gave thanks to God at that moment because I loved doing that so much. He gently said, “I never took that away from you.” I recalled brushing Abbie’s hair in the PICU, and realized He was right.

As honest as I’ve been today, I need you to also know that I am alright, in fact I am good. This is a time of sharpening and re-focusing for me, and those things are never pain-free. I was driving home one day recently and thanking God for letting me go through this experience in place as beautiful as Hawaii, where I can see His presence in every direction. In that moment He encouraged me with, “I will not allow you to suffer once more ounce of pain than what you need.” I cling to that today, trusting Him, and celebrating that today marks His victory – the victory that allows me to have the hope which will never fail.

SSG Brian Craig, en route to Afghanistan

“Greater love has no man than this, than to lay down his life for his friends”

John 15:13

Saturday 4/15/06

Today I want to use Abbie’s site to remember SSG Brian T. Craig, who gave his life in Afghanistan on this date in 2002. He is the beloved son of Barbara and Arthur, and the treasured brother of Elaine.

Barbara has been a ceaseless encourager to me along Abbie’s path, and just when I am hitting a low point a card will arrive from Barbara with tender words and a comforting “You are loved!” at the end. I know our hearts are tied together because of the grief they both hold, but also because of the Hope we are relying on.

It’s very easy to get dazed by the numbers in Afghanistan and Iraq, and never feel the profound sense of loss of each one. We are missing the chance to truly honor them if we allow that to happen. So, let me introduce you to Brian, who was 27 years old, and a member of an Explosive Ordinance Detachment – the brave guys who defuse munitions while every one else keeps their distance. He used his talents, intelligence and ultimately his life to make things safer both for the soldiers and the local civilians.

But, Brian was also a man growing in his faith, a son who loved his parents and his brother and sister. I invite you to visit his website, www.ssgbriantcraig.org to read one of his last letters home. It will leave you weeping, and also praying to be the kind of parents that Arthur and Barbara were to him.

I know without a doubt that Brian is someplace glorious, wonderful and perfect right now, and that is worth rejoicing over. But, please remember his family. As Brian alludes to in his letter, there is a God-sized hole in each of our hearts that only He can fill. But, in the hearts of his family now, there is also a Brian-sized hole, and they are relying on God’s grace to fill that as well.

Thursday, 4/13/06

It’s been a difficult week, but not because of our little Miss who is doing wonderfully. I spoke with Luke’s dad, Gordy, yesterday and he tearfully shared with me that the doctors are talking about putting a trach back in. Luke is currently in the PICU, intubated, and fighting the flu and pneumonia. Having just been in the hospital with Abbie because of pneumonia, this hits very close to home. As we were being admitted to the hospital, thoughts of the PICU and intubation lurked in my mind – so much so that I had to go to the restroom and repeat over and over “Perfect love casts out fear”.

Going back to having a trach would be devastating, both emotionally and because it’s much more difficult to care for a child with a trach. Please pray for Luke to rebound quickly so the trach discussion doesn’t have to proceed any further. Pray for wisdom, strength and boldness for Gordy and Sue, so that they will clearly know what is best for Luke and have the courage to stand for it. They are doing a great job at keeping his blog updated, so you can follow his progress at www.howsluke.blogspot.com

After I spoke to Gordy, my mom called to let me know that my Uncle Jerry will be having surgery to amputate his remaining leg. He was admitted to the ICU today because of several issues. I traveled to Oregon in December to be there for his last surgery, so won’t be able to go this time. Please pray that his body would handle the surgery well and that he will recover quickly and completely.

Then the phone rang again…by this time I didn’t want to answer, but saw the call was coming from Florida and correctly assumed it was Crystal’s dad. He didn’t sound quite right, so I asked him what was up. He answered, “I’m in the hospital because I had a stroke today.” I think I let out a little scream. The feeling has returned to his arm and leg, and the MRI looked OK, so he should recover completely…but please cover him with your prayers. Please pray for Crystal as well; it is difficult to be so far away from her dad when he is ill.

Whew! Thankfully, Abbie has given us much to rejoice about this week. On Sunday we were reading a book together and I noticed how well she was looking at the pictures. I’d ask her where the cricket was and she would scan the whole page. When she didn’t find it, she turned her head to look at the other page and scanned it until she found the cricket, which she announced by clicking her tongue. She continued this throughout the book. At the end I said, “Wow, Abbie! Your eyes are working really well today.” More clicking in agreement. At therapy on Tuesday we were waiting to go into the treatment room, and Abbie was watching kids across the hallway play with a toy kitchen. It was the longest distance over which I’d ever seen her visually engage. It is coming…

On Monday I walked her down to the elementary school to pick up RJ and Matt. I’ve taken her down there several times, but always in the jogging stroller. This time I took her in her wheelchair. Within one minute of walking onto the basketball courts with her there were a flock of kids around her asking a million questions, and then repeating snatches of what they heard…it was the ultimate game of “Telephone.” Once I stopped to sign the boys out a group of girls surrounded her chair. All of them were six years old and very curious about Abbie. After a few minutes of them talking to her and questioning me, Abbie started to cry. I explained that it was a cry of frustration because she wanted so much to talk to and play with them. She cried all the way home, and continued fussing even once we were inside.

I was desperate to calm her, so finally I said, “Abbie, don’t be frustrated…those girls are six, and you are only four. They are much bigger and older than you. When you are six you will be able to run around on the courts like them.” That was the end of the crying, and an “a-ha” moment for me. We now have a new, big motivator. When we need her to work with us, I remind her that big six-year old girls have relaxed legs, or they sit up straight, or that all her hard work will let her be like them. Hearing me talk to her about being six last night, Ray chimed in with, “Yes, Abbie, when you are six I think I will buy you a two-wheeled bike.” That got her excited, so then he wanted her to pick out a color. Pink was not interesting, but when he mentioned purple she about jumped out of bed. So..purple it is.

This has already been a very long update – but there is more I have to write. It doesn’t have to do with Abbie directly, but more with how God is moving through her and on her behalf.

For 18 months or so a couple of her phenomenal therapists and I have been trying to put together a private program for kids with multiple challenges, like Abbie. There is a dearth of appropriate services here in Hawaii, and we can so clearly see what needs to fill the gap. We found some vacant space that would be perfect, it even includes a therapy pool and whirlpool already outfitted with wheelchair lifts. But, the prospect of having to raise a couple million dollars for our “HOPE Project” is daunting. A couple months ago I prayed , “Lord, I know you want me to do this, but You also know I need to focus on my family and don’t really have the time. If You want this to happen, You are going to have to do it.” In the last 6 weeks people and opportunities have literally been falling into my lap. The UH Speech and Language school is moving into space vacated when the Medical School moved. There is apparently a large child development space in their building, and they want to partner with us to begin providing some of the services we’ve proposed. I was thrilled about that, but it was only an appetizer compared to the main course God was preparing.

On Monday I met with a woman, Wini, who works for a company that is building a long-term care facility for medically fragile children. She showed me the master plan and we talked through their vision and philosophy. Their building will have a large educational space they are willing to open up to day-program kids. They will have a therapy pool and a 1-acre garden, which is a true luxury in Hawaii. She was saying to me, almost verbatim, what our group had put down on paper. I almost didn’t know how to respond. The owner of the company has wanted to do this for twenty years, and Wini has been working on making it happen since 1999. She showed me photos of the buildings currently under construction…it is really happening! They are hoping to open at the first of next year. There is going to be a place for “HOPE” to bloom, and I am over the moon about it. Only God could orchestrate this, and I am so profoundly filled with thanks and anticipation.

On Sunday, Crystal’s good friend Jenna pulled me aside after church. She lowered her voice and said, “Can I talk to you?” I was a little worried, because she sounded so serious. We sat down and she said, “I’ve never really shared with you why I decided to become an EMT” Jenna is a recent graduate and just started working. She continued, “I didn’t really know you guys at the time of Abbie’s accident, so I don’t know why it affected me so deeply, but it did. When people ask me now why I decided to become an EMT, I tell them about Abbie.” On the way home I was just overwhelmed by that, by how all of this is such a chain. I know that someday Jenna is going to run through a gate to take a hurting child out of the arms of a panic-stricken mother, and Abbie’s angels will be smiling.

So, at the end of the day all I can say is that God is sovereign and He is good. Not only because of the wonderful things I see Him doing, but also because when those scary phone calls come and the days are dark, His Light is there.

Friday, 4/7/06

Abbie came off the oxygen yesterday afternoon and did great! I put her back on 1 liter during the night just to help her rest well, but she’s been off all day today and we are not planning on putting it back on tonight. She has really bounced back quickly, praise God!

Tonight I got her up in her Walkable, just to do some standing since she’s been laying down for a couple of weeks. I guess I shouldn’t be surprised at her anymore, but I am. She stood wonderfully, and held her head and trunk herself. She would tire and lower her chin to her chest, but when she was ready she would pick it right back up all by herself. Amazing.

Today she was also responding to commands immediately – things like “pick up your feet”, “now put them down”. So, she has come through this illness as strong as ever, continuing to move forward to our great delight.

Now that Abbie is through this tunnel, it seems that our dear friend, Luke is entering it. His mommy, Sue, called me on their way to the ER today, with Luke on 4 liters of oxygen. Boy, how familiar did that sound. Please, please pray for Luke and his family. It is so exhausting to be in the hospital, and Sue no longer has any nursing help so there won’t be any “catch up” sleep once they get home.

This has been a very fatiguing couple of weeks for me, and it’s always during times like this that sadness and despair can creep in. I am learning much still about that one word that changes everything, the one thing that is different about Christianity…grace. There are moments I can pray for nothing other than God’s grace to cover me, and to fill in the cracks caused by my exhaustion, selfishness or bad attitudes. And, He has been pouring it out thick and heavy – through friends, books, physicians, my family – every time I turn around there is an encouragement there for me.

Beth Moore, whose study “A Woman’s Heart, God’s Dwelling Place” prepared me for this whole journey, said on TV this week, “Are you in a dark place? Perhaps you are being covered by His hand. Are you in a tight spot? Perhaps you are in the cleft of the rock.” Thanks, Beth for readjusting my vision – the lack of light isn’t hopelessness, it is protection.

As I was struggling one day this week I picked up a devotional, and the title verse for the day was very familiar to me. Tears streamed down as I read 2 Peter 3:8-9. “Beloved, do not forget this one thing, that with the Lord one day is as a thousand years, and a thousand years as one day. The Lord is not slack concerning his promises as some count slackness.” God’s grace…raining down on me.

Wednesday, 4/5/06

Just time to write a quick note to let you know that Abbie is home from the hospital. She was admitted for seven days as a result of pneumonia. Abbie is still on a fair amount of oxygen (ranging from 1 to 2 liters), but her chest sounds much better. As always, out of this challenging time there have come blessings. Utmost to me is seeing how this illness has evidenced how much stronger Abbie has become. In the past, when she would get sick, we would see regressions in the skills we’d been working on, and a decline in her overall strength. Not this time. She still has great trunk and head control, and continues to reach with her arms. She also never looked really sick. She is happy to be home and is right back in the swing of things…using her potty chair, enjoying her brothers, and even running all over town with me yesterday to pick up the boys.

Please just continue to pray for her strength and for her lungs to become completely clear. She has come through this amazingly well, and we know it’s because of the power of prayer. I was a little exhausted towards the end of our hospital stay, and a little down, when her pediatrician gave me a good pep talk. She said, “This is the first time Abbie’s had pneumonia, and you realize that everyone around here is surprised that she isn’t in and out of here monthly…and, many kids end up on respirators when they get pneumonia, and she hasn’t come close to that!” What a blessing Dr. L. continues to be! One morning she and I were talking about another little girl who recently experienced nothing less than a miraculous recovery after her heart stopped working. Dr. L. turned to Abbie and said, “See Abbie, she got healed, and I know your healing is coming too!”. She then looked at me and said, “There is something planned for Abbie that is so huge I can’t even imagine it!” What a difference she makes to us!!

Abbie now needs middle of the night nebulizer treatments, and her coughing sometimes keeps her up for a good part of the night. So, we are all a little tired, as well. We could use your prayers for stamina and energy as we see her through this little bump in the road.

Saturday, 3/25/06

We had a good trip to the ER with Abbie yesterday…any time they let you come home instead of being admitted it’s a good trip. She had a slight fever and was subdued on Thursday, but seemed to be doing okay. That night her fever spiked to 103 and she required 3 liters of oxygen to keep her sats in the 90s. I also had to give her a nebulizer treatment for the first time since last summer. In the morning the pediatrician recommended that we take her to the ER so they could do the quick-results Influenza test.

We made it to the ER around 10am, and in short order Abbie was tested for Influenzas A and B, as well as RSV. She also had a chest Xray. All of these tests came back negative, praise God! So, it’s just some bug her brothers have generously shared with her. We were on the way home within 2 hours of arriving at the ER- amazing!! It’s wonderful not having her admitted, but she still requires round the clock care at home. Please pray for her to rebound quickly, and for us to have the endurance we need to care for her.

I’m sad this has happened during my parents’ one-week visit. I was so anxious for them to see how well Abbie is doing. At least my mom got to see one OT session with me. Abbie did very well rolling down a wedge – holding her head up as she rolled and initiating the movements herself. At the bottom, in true Abbie form, she decided she wanted to roll up the wedge. So, we helped her do one rotation and then moved to the “horsey swing” – a suspended cylinder the therapist sits on with her. It was another case of little things being big things. The swing was a little too low, so Abbie’s feet were dragging on the ground just a bit. Her toes were pointed down, so I said, “Abbie, we need to have walking feet instead of ballerina toes” and immediately she pulled her feet up into a more neutral position. Yipee!! She responded to the command right away, and pulling her feet up is not something that she’s been able to do very much…guess all I had to do was ask!

She’s resting comfortably today, as long as I have the appropriate movie playing…Nutcracker ran three times in a row until the DVD malfunctioned. I’m hoping that this week will bring our happy, smiley girl back to us. At times like this your prayers are more precious than ever!

Monday, 3/20/06

We are just back from a wonderful getaway to Maui, and have so much to catch up on! Two weeks ago the poor UPS man had to lug a very heavy box up our front steps, but hopefully the joy we greeted him with made up for it. He delivered Abbie’s very own Walkable! My live-in handyman, Kyle, had it all put together in less than fifteen minutes. That afternoon we used it to help Abbie sit at the piano by herself, something she was very clear about wanting to do. I helped her play Mary Had a Little Lamb, and she was very pleased with herself. Just this evening Ray, Kyle and I took her for a little stroll in her Walkable. Just telling her that we were going walking resulted in her entire body relaxing…her new nickname is “Lucy”, as in Loosey-Goosey. It’s amazing to feel the changes that are happening in her body. She did wonderfully during our walk tonight, bending her legs and bringing them forward herself several times. It’s so exciting to have this piece of equipment at home.

The next big thing happened on Saturday, 3/11. Abbie went for her first therapeutic horse ride. We traveled to “Da Ranch” in Waimanalo with our Easter Seals speech group, which is comprised of kids who use devices to communicate. There were at least fifteen people there volunteering their time to allow these kids to experience the farm and horseback riding, which really humbled me. We began by warming up on barrels, rocking back and forth, and even doing the Macarena. We then moved to a bareback blanket and then a saddle placed on a horizontal telephone pole. The idea is to move the kids off the ground in incremental steps so that when they get on the huge horses they are not freaked out by the distance to the ground. After these warm ups Abbie got to spend some time petting Sally the pony and feeling her mane and tail. After she got fit for helmet it was our turn! They allowed me to ride with her, so it was an incredibly special time for us. What a blessing to being doing “therapy” looking at mountains and green meadows, hearing birds and smelling flowers (along with a few other scentsJ).

Equine therapy is very unique in that it perfectly mimics the movements in walking, so it stretches and works the same muscles and helps the kids learn the motions. That one session was so good for Abbie that beginning in April I am going to try to take her riding every Wednesday. We have grown to be good friends with the families in our group. As each child circled around the ring a cheer would go up from all of us gathered around the fences. Later that same afternoon the twins had a baseball game, and I sensed that same spirit as we cheered for each batter and every good play in the field. At that moment I was thankful to Abbie for introducing us to a whole different kind of team, playing a whole different kind of game, but experiencing the same joy.

After horse-riding in the morning and a baseball game in the afternoon our very dear friends, the Suttons arrived that evening from Colorado. This past Wednesday all 12 of us loaded up and headed to Maui together. God answered our prayers for a break in the rain, and we had beautiful mornings each day we were there. Abbie was only too happy to share a big bed with Matthew and RJ, and I think she enjoyed just strolling around with me, being lazy and reading books on the bed, and especially watching the movie we found about little girls learning hula. We did get her down on the sand, and she liked that, and was very tolerant of the wind (not usually one of her favorite things). On Sunday we even took her down to the water. She really liked it, but I could not find a graceful, safe way to hold 42 pounds of princess, so we didn’t stay in the water long. It is wonderful, though, to see sun-kissed cheeks again.

The Suttons departed yesterday – it’s always too soon for them to leave. But it was so encouraging to hear their observations of how different Abbie is since they were here last March. It also boosted my spirits to here them note how our entire family seems to be in a better place now. We are figuring out how to live this new life while never settling for it, if that makes sense.

I know I probably don’t have to ask you to do this, but if you see postings in the Guestbook about other little ones recovery from injuries, will you join us in praying for them? I am thinking specifically right now of little Hunter, whose name was posted recently. He joins our list that includes Isabelle, Luke, AJ, Jonathan, Samantha, Cade, Ross, Seth, Brett Jr. and others whose names we don’t know. There is so much hope, and I want to reach those families who may be in the dark places we have walked – nobody can survive those places alone.

My mom and dad arrive from Oregon tomorrow, so it will be another fun week around our house. Please pray for my boys – they are all suffering from the flu. Matthew is the furthest through it and even went to school today, Kyle is almost back to himself but Chase and RJ are deep in the midst of it and are miserable. It breaks my heart when I can’t do anything to “make it all better.” But, I must admit I’ve appreciated the chance to be their mommy again, too.

You know in all your hearts and in all your souls that not one thing has failed of all the good things which the LORD your God spoke concerning you. All have come to pass for you; not one word of them has failed. — Joshua 23:14

Saturday, 3/4/06

We’re still on dry land, but this week we found out that while kids in Hawaii will never get a snow day off of school, they can get rain days. There were some areas on Oahu that got 18 inches of rain in a 24-hour period, which as you can imagine made some roads impassable. We don’t live on the wetter side of the island, so although we spent the week feeling like we were living in a balmy version of Seattle, we actually got off easy.

We loved having my sister Tara here with her sons Cooper and Oscar. I would program Abbie’s switch each morning so she could greet Cooper and then sing songs and count with him. I think the favorite for both of them, though was playing Hide and Seek. I would program in the counting, then “Where are you?? I ‘m going to find you” and then “There you are!” But, we do have to help Cooper learn the finer points of the game. As soon as we were done counting we would hear, “I’m right here, Tuff-ney!”

On the way to the airport Cooper said, “I want Abbie to come visit me at my house. Will you make sure she brings her switch, because that makes me happy.” It made me cry then, and is wetting my cheeks as I type.

Abbie got up in the Walkable on Friday at physical therapy. She is doing an amazing job at lifting and holding her trunk while she’s standing. She is not used to bearing a lot of weight on her feet yet, so would you pray that she will gain strength and flexibility as she practices? We then kept her in the harness and hydraulically lowered it so that she could sit on a chair. She again did a super job at holding her head and trunk without pushing through her legs, which means she’s holding herself up using her strength rather than her tone. We are really looking forward to her own Walkable arriving at the house in two weeks. We have been telling her that soon she’ll be able to walk all over the house again, and perhaps even sit down at the piano and play a song for us. She clucks her tongue so hard at that I worry she may pull a muscle!

Today we went to a workshop at Easter Seals for kids using communication devices. This session was in preparation for our group outing next Saturday to a therapeutic horse-riding stable. One dad in the group made a professional-quality video of the program, and seeing what they can do with kids of all abilities made me cry (I know, a lot of tears lately). I am so very excited to get Abbie up on a horse! We worked hard to day to make sure we can work in a lot of language opportunities during the experience. I’m sure she’ll have lots to say about the barnyard smell! And, yes, I’ll make sure we takes lots of pictures.
 We are pretty much without nursing for the next 2 weeks, so please pray for our stamina, endurance and juggling skills. During periods like this it is hard to give Abbie the time, attention and stimulation she deserves, so we’re just praying that life in general will be calm.

We had a good question at our small group on Wednesday evening…”How can you tell if something you are going through is a test from God or you falling into temptation?” I think we like to group the bulk of our challenges in category number one, which makes them not our fault or responsibility. Unfortunately, as I reflected on it, I think a majority of what we struggle with is actually in category number two. The best example I could give relating to Abbie’s journey is that yes, I do believe it is a test in the broad scheme of things. However, daily I can fall in to temptation, such as the temptation to despair, the temptation to covet, the temptation walk in my own strength…these things take a simple test from God and turn it into a convoluted trial for my heart. Simple doesn’t mean easy, but it does mean straightforward.

In most of God’s tests I think His two main questions are, “Do you love Me?” and “Do you trust Me?” If we can simply answer those with a “Yes”, much of the temptation is avoided. Again, simple doesn’t mean easy, but I think God really treasures the hard, heartbroken “Yes” more than anything.

Friday, 12/30/05

Ray tells me that his health may be endangered if I don’t write a long overdue update…So sorry for the delay, the past couple of weeks have gone a bit differently than I had planned.

On the morning of 12/19 my mom called to say that my Uncle Jerry was having a second amputation surgery the next day, even though they weren’t sure if he was strong enough to handle it. I knew it was time to go, so a couple hours later I was at the airport heading for Portland. It was good that it happened so fast, because I didn’t have time to ponder the fact that I was leaving Abbie for days in a row for the first time.

I madly wrote lists, recipes, schedules and directions before I left the house and then left Abbie in the capable, loving hands of Ray, Crystal and Debbie. She did wonderfully while I was gone, and it was good for me to learn that her world didn’t crumble completely because I wasn’t here. After a good time of catching up with my extended family along with my good friend Wendy, and meeting my nephew Oscar for the first time, I headed home on 12/23, just in time to celebrate Chase’s 15th birthday.

I am so happy to report that Jerry came through the surgery well, and was even joking with us a little on Thursday. Please pray for his continued recovery. I must admit that Christmas was more difficult than I expected it to be. We are in such a different place than we were last year, but we also are not where we had hoped to be this year.

I was tearing up during the Christmas Eve service as we began to sing “We Three Kings.” The video playing behind the lyrics showed camels plodding across a desert ridge, and I stared at them as I sang the words “Westward leading, still proceeding…”

Westward is the way home, the way back to the Garden, and I felt the Lord saying, “You’re still on the way – don’t despair – I am still guiding you and together we are still proceeding.”

Christmas morning was joyful chaos, and Abbie grinned, dimple and all, throughout the process of unloading her stocking. It was such a pleasure to have her be engaged and enjoy the morning. She took a little snooze while the boys unwrapped presents, but she soon awoke to begin catching up. I think her favorite gift of all was a pair of real ballet slippers from Auntie Tara.

I had noticed that she seemed a little withdrawn and not as playful, but I wasn’t sure it if was reality or my sadness distorting reality. Finally, on Tuesday we took her to the pediatrician to confirm what I suspected – she had an ear infection. Actually, I think she also had a bit of a sinus infection, too. As soon as the anti-biotic kicked in she returned to her smiley self, and I realized that my Christmas blues had been largely caused by her infection.

Abbie and I are much like E.T. and Elliot in the movie “E.T.” – you know the scene towards the end of the movie where they are both hooked up to monitors, and as E.T. declines, so does Elliot. When Abbie is not doing well, neither am I. As soon as she perks up, my whole world is brighter. This morning brought a check-up with the orthopedic surgeon at Shriner’s, one of my less-than-favorite things to do. You may recall that back in August he recommended a very drastic surgical procedure for Abbie which involves fixing the head of her hip bone into the socket with a pin, then removing portions of the femur and reconnecting it with screws.

We felt Abbie’s flexibility and tone had improved since the last visit, and the measurements they took indicated that they surely had. (For you therapists out there…both heels came to neutral, knees were about 130 degrees flexion, knees came almost to belly together, and then she could extend one leg fully. On her tummy she did not raise her bottom when they bent her knee and raised her heel back, and she had good internal and external rotation.) We were blessed to have Abbie’s PT, Lynette there with us for the entire 3 hours. She helped us work with the nurse practitioner to set up getting new, hinged foot splints to help Abbie when she walks, as well as hip splints for when she’s asleep. She was also wonderful at asking good questions that we may have missed. I now better understand why Dr. O wants to do that major surgery. Particularly on her right side Abbie’s hip bone is coming out of the socket, and in the process it’s transforming the socket from a nice rounded cup into a flat surface. Until the age of 6-8 years old the socket is fairly flexible, so if we get the bone back in there the socket should reform around it. If we wait too long, it will be very difficult for Abbie to ever have a normally-shaped hip socket.

But, that doesn’t mean we are ready to jump right into that. As a preliminary step we are going to have Botox injected into her hips, quads, and heel cord muscles. This will give us a window of time (4-6 months long) during which her muscles will be very relaxed and we can work hard at stretching and lengthening them. We will also be doing a lot of walking, because Abbie’s leg problems are really a brain problem, and walking is very stimulating for her. The more we can remind her brain where her leg muscles are and what they are supposed to do, the more we will be able to solve the underlying problem, her high muscle tone. It is very difficult to make decisions like this for her, knowing that Botox will require another round of general anesthesia, and that we will be injecting a foreign substance into her body – but sometimes it feels like you must choose the “least bad” option. Doing nothing really isn’t an option any more because we are confident Abbie will walk one day, so we want to set her up for long term success and comfort. We will schedule the procedure early next week, but I am hoping to delay it just enough for us to get some equipment at home that will maximize the benefit of the Botox.

We gave Crystal a nice digital camera for Christmas, and I have since deemed her the official family photographer…so there is hope that there will be more regular postings of new pictures. We pray that you had a wonderful Christmas, and that like us you are looking forward to 2006 with anticipation of big things to come. You have blessed us so incredibly this year with your prayers, your words of encouragement, your gifts, and your friendship. People are the only true and lasting jewels, and I feel like an incredibly rich woman because of the gems the Lord has place in my life!

Sunday, 12/17/05

A day of balance for us – joyful highs tempered by saddening lows. Our church family worshipped together in our new sanctuary for the first time today – what a huge blessing! The best part, I think was hearing testimonies from two people I don’t know very well. They both left me in tears at God’s goodness, and made me realize again that every person has an incredible story, if we will only take the time to listen.

This afternoon we decided to venture to Chronicles of Narnia as a family, Abbie included. Much like any normal preschooler, we were in and out of the theater with her for potty breaks and food. I had to cover her eyes and ears at the end of the movie because the battle scenes were scaring her — hooray!! Just as we left the theater I was stopped by a woman who seemed to know me, and I scrambled through my decrepit face-recognition mental software but couldn’t find a match.

She knew us through this site, and has been praying this whole time. I couldn’t say anything very coherent or intelligent, so I just hugged her and cried. I am still so overwhelmed at all the companions who’ve stayed with us during this whole journey, and wish I could hug each of you!

In the early evening my mom had the unfortunate task of being a bearer of sad news. She called to let me know that my grandfather passed away in Montana today. As I tried to absorb that news while memories of my childhood were flashing before me, she also let me know that my precious Uncle Jerry is back in the hospital. He recently had a lower leg amputation due to diabetes, and it’s not healing well. He is having other various complications and they are thinking that more of his leg will have to be amputated. I am desperate to be in Oregon with my parents and my Uncle Jerry and Aunt Hazel, but this is certainly a difficult week to contemplate traveling, both logistically and family-wise. Would you please pray for Jerry’s strength and health, and for my Auntie Hazel – she and I commiserate about the trials of being a caregiver, and she really needs stamina and peace right now.

Abbie’s nurse Debbie forwarded me an e-animation the other day because it made her think of Abbie. I cried as I watched it because it is so right-on. Here is the link: http://i.euniverse.com/funpages/cms_content/2529/4candles.swf What it says is so true – and Abbie has relit all of our candles with her feisty spirit that refused to allow Hope to be snuffed out.

I guess the small-talk question of the week is “Are you ready for Christmas?” No, my presents are not all purchased yet, and I have quite a bit of wrapping to do (kids, if you are reading this..it’s not all for youJ!) But, that’s not what I’m concerned about. This week I am going to try to prepare myself for Christmas…to hang stockings full of gratitude on the mantel of my heart, to string twinkling lights of joy in my eyes, and to kindle the fire of awe in the cauldron of my soul, to allow all the world to become hushed around me as I commemorate the arrival of the Hope that never dies.

Friday, 12/16/05

A mainland trip for Ray and the stomach flu for me have prevented a timely update – I am sorry about that! But, now Daddy is home and I am back in shape, so it’s time to tell you what’s new in Abbie’s world lately.

Because Abbie’s response time to questions has improved so much (it’s about normal now) it’s easy to have conversations with her via handsqueezing. The other day Debbie reported that they “talked” for about an hour in the rocking chair. She confirmed that Abbie definitely wants toys for Christmas, and that she also wants candy. Debbie asked her she wanted chocolate..no, that wasn’t it. So, thus began the long listing of every type of candy Debbie could think of – but still no response. Finally, she said, “Do you want peppermint candy?” and was shocked when Abbie answered “yes.” Then she realized what Abbie was really after…”Do you want a candy cane?” Another “yes”. So, of course, by that evening, Abbie was happily sucking on a candy cane!

Abbie has also evolved into a hardcore ballerina. The former Nemo-addict now throws a fit if we try to show her any movie other than “The Nutcracker.” She always responds well with her body when we prompt her with ballet terms like “ballerina hands” and “ballerina toes”. I asked her the other day if she wanted to go see the Nutcracker next Christmas and got a mild “yes”. However, when I asked her if she wanted to dance in the Nutcracker next Christmas she was so emphatic about her “yes” that she about came off the massage table. I asked her if she already had the whole thing memorized from the movie, “of course” she does!

She has gotten to use the Walkable the past two PT sessions, and once she’s warmed up she absolutely cruises. Because her arms and hands have relaxed so much she is able to use the support bars to help her upper body, which really aids in relaxing her legs. Yesterday we walked out of the therapy room , down the hall and back. Just as we were finishing up I thought back to early sessions in the Walkable where Abbie moved halfway across the room in 20 minutes, and that was considered a “good” session.

One personal message: to Abbie’s “Friends in the Firehouse”…we have wanted to meet you for so long. I know you were on second watch at the time of the accident, but it has been a long time. Would you email us (varasix@aol.com) so that we can arrange a time to get together? It would mean a lot to us.

Chase, Kyle, and Crystal are done with school for the semester, and the twins will be out next Wednesday. I am so looking forward to having all the kids with me for a couple weeks. This Christmas feels so entirely different than last year. Last year we were celebrating the birth of the King who came to heal our heartbreak – this year we marvel at the King who came to fulfill our hope!

The Lord has done great things for us, and we are filled with joy.”- Psalm 126:3

Friday, 12/2/05

Our amazement continues to grow! As so many of you, I’m sure, I’ve been incredibly busy as the holiday season shifts into gear, and thus have been prevented from sharing the great news that piled up all week. I am in shock, to a certain extent, but this time it is a wonderful thing.

In the last update I wrote about us figuring out that Abbie knows her colors. But, it took a couple days for that to sink in enough for me to realize that we haven’t been working on teaching her colors since her accident. So, that knowledge is from BEFORE her accident. She has memories!! And, identifying colors is a pretty high level skill to remember, so that gave us much hope as we headed to her appointment with her neurodevelopmentalist, Linda Kane, on Tuesday.

I was honest in the written evaluation that I did for Linda, and told her that we haven’t been completing the program that she designed for Abbie. Since the end of August our primary focus has been on Biomodulator therapy, which cut down the time we had for the program. And, with Crystal and Chase now in school I no longer have the luxury of helpers always at hand to do Abbie’s patterns. Of course, normal mom-guilt kicked in, and I hated to admit that we hadn’t been doing the program diligently. As always, Linda was very gracious and encouraging. She redesigned Abbie’s program to include exercises which only require two people to perform. But, the major changes in Abbie’s program were not based on logistics, but on progress!!

I shared with Linda that Abbie can identify colors. She was thrilled, and said, “Well, then..we’re going to move her right along. Time to teach her words.” My blank stare forced a more in-depth explanation. She said, “You are going to take large index cards and write words in red ink. You’ll introduce two new high-interest words a day until she works up to about twenty words. You’ll be amazed at what she’ll be able to do if you are consistent with this. She’ll eventually be able to identify the words by sight when you ask her to.”

It still took another minute for me to fully grasp that what we were talking about was teaching Abbie to read sight words. Teaching her to read!!! Just a couple days before I’d been looking through a catalog that had lots of learning-to-read programs and I felt a twinge in my heart because I’d looked forward to sitting on the couch with Abbie, teaching her to read, and had thought that perhaps that dream had been lost forever. I never imagined that it was only right around the corner!

Because Abbie knows her crawling pattern, even though she can’t do it independently, Linda feels that pattern has achieved its purpose of organizing Abbie’s brain at that level. So, she is fully supportive of us getting Abbie ready to walk, and added new exercises to prepare her. This is a huge step forward for Abbie! I explained to Linda that Abbie is not at all motivated by crawling, but rather is very anxious to walk, so I am very thankful that she is ready to move toward that.

I also spoke with Linda about certain times that Abbie seems very frustrated by her inability to move or speak which then transitions into confusion and fear. At times like this I sense she’s thinking, “What is going on? Why can’t I do what I want to do?” When this happens I calmly and gently explain what happened, even though I hate to talk about it. I ask her if she remembers that she got a big ow-ee in her head while she was in the swimming pool, and then I remind her that she is getting better every day. I asked Linda what she thought of this, and she related the story of a 14-year-old near-drowning survivor that she worked with. The first time she saw him he was in a wheelchair not able to do anything. After a year of program, he was reading a word list to Linda. “Dig, Dad, Deep….deep, deep, deep…” he paused, “deep…drowning.” She just looked at him and said, “Yes, you drowned. But, you are back and you are getting better every day!” She really feels, as do I, that it is best for me to talk Abbie through those moments, and not ignore what she may be feeling because we’d rather not remember it or talk about it.

When Linda looked at me and said, “She is doing VERY well!!” my spirit just soared. She is so familiar with neurological challenges and can observe and assess even minor changes, so when someone of her knowledge and experience says that I take it to heart. It think it’s fair to say I floated home from Kaneohe that day. Linda comes from the mainland twice a year to see kids here, and I told her, “You never know – perhaps in March Abbie is just going to walk in and tell you ‘hello!!’”

Yesterday we had both PT and Speech Therapy. She did great at PT..holding up her head for long periods as she and Lynette went ‘round and ‘round in a swing. But, then end of the session brought the sweetest gift yet, and one which made my blood run cold with shock (it sounds bad, but it’s a good thing!) We were getting Abbie back up in her chair, and she was cold and throwing a little fit. For just a brief moment I saw her…my old Abbie…she was right there in front of me. I just gasped and put my hands over my mouth as tears started to fall. The moment was over in a flash, but I SAW her. Even now the preciousness of that moment is making me cry. Oh, how I have missed her – that little feisty girl. It was such a reassurance that we are getting ALL of her back, as well as a breaking through the calluses on my heart. We’ve gotten so used to the new Abbie, and love her intensely, that sometimes the old Abbie seems like a completely different person. To see her again so unexpectedly just shattered me with joy, if that makes sense.

After lunch it was assistive tech therapy, with Abbie’s switch. Before the session we told her therapists about the recent breakthrough with color identification. They were thrilled and immediately changed the plan for the session. We started out with Abbie matching colored bears to the same color bowl. She did well with that. Then Lisa said, “Wow! Color identification is such a high level skill. Let’s back up a little and see how she does with some other things.” So, the next task was matching objects. Rebekah held up a plastic orange and then said, “Let’s find a match.” She held up a banana and asked Abbie if it matched..no response. Then came a giraffe…no response. Then she held up the other orange, and Abbie hit her switch to say “that’s the one!” She then matched the banana and a train engine. The next item was a little elephant. As soon as Rebekah held up the other elephant Abbie immediately recognized it and used her voice to tell us even before she hit her switch.

Her success at skills like this is good news on so many fronts. Her vision is obviously very good now because she can discriminate the differences in objects that are not very big. Observing her on Thursday Lisa said, “Her cognitive skills are at about the normal preschool level…we really need to start pushing her.” Normal preschool level!!! During this journey Ray and I have lamented losing the little girl who was as bright as a new penny, and so smart…turns out that we have not lost her at all. I told Abbie, “Wow! You are still a little Miss Smarty-Pants!” I am overwhelmed at the miracle we are seeing rapidly unfold before us. There is nothing more profound than the birth of a child…unless it’s the second birth of a child. I am grateful to the depths of my soul for the second chance we have received.

Our joy this week has been tempered by one thing that I must share with you. My friend Katie, who I’ve often written about, was diagnosed with Grave’s Disease this week, which is a hyperthyroidic condition. As you may recall Katie has six kids, ages 8 and under, to care for alone while her husband Walt is in Iraq. I saw her today and was shaken…her health is truly failing her and she is wasting away. I plead with you to pray for her, and if you know of a Christian young woman who would be interested in a “domestic mission trip” and would be equipped to care for the children and help Katie, please let me know.

This month it feels like each day is a living Advent calendar…we open up another door in Abbie and see another part of her come through.

Abbie’s very first pony ride! She did a great job controlling her body and her head and really seemed to enjoy being in the saddle.

Monday, 11/21/05

WOW! All I can say is “WOW!!” We’ve had a breakthrough tonight that has left me in a bit of shock, but it’s so great that I don’t want to wait to share it. My mom made Abbie some “looking mats” which arrived in the mail today. They are made of black fabric squares and bright fabric squares, and are beautiful. Abbie enjoyed looking at them this afternoon, but was especially drawn to another goody Grandma included in the box. She sent a string of black, red and white squares of different sizes that really drew Abbie’s eye.

This evening Crystal told me that she’d been showing the squares to Abbie individually and telling her what color they were. Abbie was intent upon what Crystal was doing. Curious to see what would happen if we combined her switch with this activity, I programmed it to say “That’s the color!”

First, I showed her a red square and asked her, “Is this orange?” No response. “Is this black?” No response. “Is this red?” Immediately she hit the switch to answer me with, “That’s the color!” Wanting to see if this was just coincidence I went through the red, black and white squares six times, and she was right each time. Ray walked in as I was showing her a Nemo blankie, and he was just in time to see her hit her switch when I asked her if it was orange. She correctly identified red, black, white, purple, orange, and green. Even as I type this I am stunned.

This means our little fighter is not only seeing well enough to differentiate colors, but has the cognitive ability to assess what she is seeing and then transform that assessment into a physical movement to give an answer. Her intelligence is finally finding a way out to all of us! This is such a big step I’m not sure it will all sink in tonight, but it proves that our little girl really is in there, and is working hard to make her way back to us!

I just want to scream “Thank You Jesus!!!” He has never left us, and His promises have made it possible for us to stand on faith when the world may think we’re crazy. Thank you for praying with us – nights like tonight are answers so grand that I am thankful the Psalms were written…my words fail me when I try to come up with praise profound enough to measure up to this night!

Friday, 11/18/05

Happy Friday! OK, so I’ve got great news and a good story. The great news is that Abbie continues to thrill and amaze us in therapy. But, I have to go back a few days to give you the whole picture. Right now Abbie’s biggest interest is the big, red slide at the park near our house. During our daily walk we have to visit the slide, touch it and talk about when her legs are strong enough to climb the stairs so she can slide down it. On Wednesday evening she was smiling while dreaming. When she awoke I asked her, “Abbie, were you dreaming about the big red slide?” She nodded, smiled and clucked her tongue to give an emphatic, “Yes!” I said, “Well, tomorrow at therapy maybe we can practice walking with Auntie Lynette to get you ready for the big red slide!” This evoked another emphatic “Yes!”

On Thursday morning, getting ready for therapy, I reconfirmed with Abbie that her agenda for the morning included walking. But, when we got to the PT room I saw that Lynette had a huge ball and a swing ready to go – no Walkable today. I didn’t want to say anything so I kept quiet about Abbie’s plans for the session. Lynette sat Abbie down on the ball and then began rolling her forward so that her toes could touch the floor. She kept going and eventually asked me, “Are her feet flat on the floor?” Sure enough, they were. So, I thought I should tell Lynette that Abbie was intent on walking. When Lynette asked her if this was true Abbie straightened up her trunk and head as if to say, “Let’s go!!”

So, off we went, without the Walkable. Lynette helped Abbie with her upper body and I helped Abbie with her legs. The most obvious difference we saw from the last time Abbie went walking at therapy was with her quads. The last time we used the Walkable we had to swing her legs a little to the outside to bring them forward again after each step because her legs were too tight to bend her knees well. This time, as soon as I would lift her back heel up her knee would bend nicely and the leg could just go straight forward. This made the whole process so much easier that we just kept walking until we ran out of room.

At the end of the session Lynette said, “Well, I guess we can move on to something other than the ankles now that her heel cords are doing do well.” Hurrah!! A few months ago the orthopedic surgeon said he wouldn’t even treat her heel cords with Botox because there wasn’t enough mobility left in her ankles. Now, she doesn’t need that treatment, thank you!

After PT we went to the cafeteria to have lunch and kill an hour until speech therapy. Abbie was tired, and should’ve fallen fast asleep after her tummy was full. However, she is far too nosy to nod off when there are people talking nearby. We had to take her back to a quiet hallway in the rehab department so she could take a catnap.

Then, we had a real breakthrough day using Abbie’s switch. We generally give her a choice between two things, like reading a book or watching a movie. This is how the session started out, and Abbie was doing well. There was a computer screen with big pictures of her choices, and she was doing a good job of looking at that. Then, when she would choose either the movie or the book she would shift her attention and focus well on those. After about 20 minutes Abbie quit hitting her switch so quickly, which often happens after she’s worked for a while. That is the hard part of therapy – sitting there waiting and hoping for something to happen, and often not seeing anything. Your mind can do funny things to you during periods like that. Even though she’d been doing well, it’s easy to start thinking, “Maybe she doesn’t really understand. Maybe her choices haven’t been as intentional as I thought…”

During a lull like that Lisa reminded the speech therapy student, Rebekah, that she had actually programmed the computer with three choices: “book”, “movie” and “no” so that Abbie could choose neither of those things. So, once again Rebekah asked, “Abbie, do you want to read a book?” No response. “Do you want to watch the movie?” No response. “ ‘No’ – do you want to do neither of these?” An instant response from Abbie confirmed that her silence hadn’t been non-participation, but had been her “no.” So, they gave her a new choice – to play with balls, and she quickly chose to do that! I just had to look out the window for a minute so that I wouldn’t cry. This was a huge confirmation of Abbie’s cognitive abilities and readiness to learn.

The skill they are teaching Abbie, auditory scanning, is very difficult. Because her vision is not dependable we have to rely on her listening skills. Imagine that you are walking a tightrope while crocheting a scarf and the lights keep going on and off. Then, a waiter comes up below you and starts listing the specials for the evening, telling you that you will have to make your choice while walking and crocheting. As you are thinking about what you want he often repeats himself, which distracts you. Perhaps he even becomes impatient because you take a while making your choice and says, “Well, I guess you’re not hungry anyway.” This is what it is like for Abbie to learn how to listen to choices, assess them, decide what she wants, and coordinate her body to hit her switch at the appropriate time. She amazes me!

And now, the story…you may recall that about a year ago a very kind dog breeder on Kauai donated a Labradoodle puppy to become a service dog for Abbie. A terrific woman named Susan brought the puppy, Odie, into her organization, Hawaii Fi-Do, to begin his 18-month training period. Early this year we met Susan and Odie at a park. Susan also had an adult Labradoodle with her. After seeing the size of the mature dog, talking about the ongoing training and discipline Odie would require, and thinking about how that meshed with our family we confessed our reservations to Susan. She was so gracious and said, “If you don’t think Odie is right for your family, don’t worry. I have a wonderful family on the North Shore that Odie would be great for!” The boys were sad that Odie wouldn’t be joining our family, but we knew it was the right decision.

On Friday we were at Abbie’s group speech therapy session, and the parents were discussing field trips we could do together. Someone mentioned Susan and Hawaii Fi-Do as a possibility. Then, this family I just love started talking about how Susan is currently training a Labradoodle for their precious son Kahiau. That caught my ear, so I asked what the pup’s name is…”Odie!” He could not be going to a more deserving or loving family! This is a family that drives over an hour on sunny days to bring their son to our group. On one stormy day it was an 8-hour trip for them. I was overjoyed to hear how well Odie has bonded with “his boy.” Odie can sense impending seizures and if Kahiau coughs in his sleep Odie is there instantly, sniffing and licking him to ensure he’s OK. It twirled me around for a while to find out how completely this circle has closed.

Will you please pray for my dear friend, Katie? Her husband is in Iraq, leaving her alone with their six children, ages 8 and under. As if this isn’t difficult enough, Katie has injured her knee and may require surgery. She is an amazing woman who had been shouldering a very heavy load with true grace – but she needs a healthy body to do it. We know Jehovah Rapha heals, so will you lift her up to Him?

I hope I can write another update before Thanksgiving, but sometimes the time gets away from me. So, just in case…have a great Thanksgiving! The list of what we have to be thankful for would fill pages and pages, but I’ve learned that it’s a very good thing to number your blessings one by one and be thankful for how long it takes you to do that!

Sunday 11/13/05

Aloha! I am back from getaway too wonderful for words! Although I live in paradise daily, visiting a neighbor island reminded me just how blessed I am. Kauai is so much quieter, calmer, and “country” than O’ahu, which are things I crave. I have never stayed in a nicer hotel than the Grand Hyatt – you can see for yourself at www.kauai.hyatt.com. Poipu Beach, the gardens, the pools…it was almost too much to take in. Plus, my sweet friend Sandra and I spent hours talking, and I got a chance to really unpack my soul and set some things down that I don’t need to carry anymore.

On Saturday morning I was reading the hotel Bible on the lanai (bless you, Gideons!) My Psalms cycle took me to Psalm 42. The first three verses read, “As the deer pants for the water brooks, so my soul pants for You, O God. My soul thirsts for God, for the living God; when shall I come and appear before God? My tears have been my food day and night, while they say to me all day long ‘Where is your God?’”
I paused and prayed that my soul really would thirst like the deer, and was thinking about where my God is in the midst of our longing for Abbie when a knock at the door signaled that breakfast had arrived. I rose to answer the door, leaving the Bible open on the outdoor table.

When the waiter asked where we wanted to eat, I told him “outside”, but he was past me before I could get the Bible out of his way to set the table. He picked it up, and instead of quickly laying it aside, he started reading it. I asked, “Do you read the Psalms?” He didn’t answer directly but said, “Psalm 123 for you, Psalm 123.

”Psalm 123:1-2 “To you I lift up my eyes, O You who are enthroned in the heavens! Behold, as the eyes of servants look to the hand of their master, as the eyes of a maid to the hand of her mistress, so our eyes look to the Lord our God until He is gracious to us.”

I read it several times, knowing God meant for me to understand something. Finally, I realized it was the answer to my question from Psalm 42. Where is my God? He is right here, and I have only to keep my eyes fixed on Him until He is gracious to me. Not if, but until. I thanked the man for blessing us, telling Him we have been waiting for a specific grace for a long time now and that he had encouraged me greatly with the Word.

I was I in awe that as I was reading my Psalms I wasn’t just sitting in a chair pondering to myself, I was actually having a conversation with God – and He answered the question I asked Him before I even had it fully formulated in my mind.

As I mentioned above, Sandra and I had lots of time to talk about pretty much everything that moms and wives and daughter of God think, care and worry about. One thing she encouraged me to do was to put some info on Abbie’s site about where all you lurkers, those who won’t email me, can get the plankton we’ve been using with Abbie. After seeing what it’s done in Abbie and I, and hearing stories of what it’s done in people with cancer, diabetes and other problems, I agreed with her that I should get these links out to everyone. You can go to www.whyplankton.com to learn about what plankton is, how the product was developed and why it’s so good for the human body, and then you can go to www.planktonblooms.com to actually buy the product we are using, which is called “FrequenSea.”

We flew in from Kauai this morning in time to make it to church, and I then came home to find Abbie happy and peaceful, watching football, just like a good little Vara. She did great while I was gone, with many thanks going to Crystal who really pitched in to make this weekend smooth for Ray. I am anxious to watch her play on the beach just like the little girls I watched at Poipu yesterday…but I know the day is coming, and I know just where we are going to celebrate. If you live on Kauai you will probably hear us praising God on your white sand beaches as we watch Abbie skip in the water.

Isn’t it strange/That princes and kings/,And clowns that caper/In sawdust rings,/And common people/Like you and me/Are builders for eternity/Each is given a bag of tools,/A shapeless mass/,A book of rules;/And each must make–Ere life is flown–A stumbling block/Or a stepping stone.–R.L. Sharpe

Friday, 11/11/05

Happy Veteran’s Day! We are praying that God would especially bless and protect the Veterans-in-the-Making who are currently overseas, as well as their families who wait anxiously for them.

It has ended up being a good week for Abbie after it started out with her suffering from a cold. She was pretty subdued over the weekend, which was disappointing to me because I was so enjoying seeing new things each day. She was coughing often on Monday and and a little on Tuesday, but by Wednesday she was completely clear, which confirmed to me that the plankton really is having an effect on her. We ran out last Friday and didn’t receive the new shipment until late Monday afternoon. Her decline and recovery matched that timeline almost exactly. When we’re trying so many different things simultaneously it is difficult to isolate any single thing to determine its true effectiveness, so it is nice to know for sure how relevant the plankton is to her recovery.

Carol came to give Abbie a Healing Touch session on Wednesday morning, and I took that opportunity to go in the kitchen and make Abbie’s food for the day and some chicken soup. I was glancing at Carol and Abbie in the family room as I sliced and blended, but wasn’t paying close attention. Then, I heard Carol gasp and became a little concerned. But, then she asked, “Does she move her hand and arm by herself??” Abbie was showing Carol how she moves her arm and hand to play with her toy. Carol was impressed not only by this but by how hard Abbie was concentrating on what she was doing. Abbie’s arms were so loose as she was laying on her side that we were doing circles with them, and each time her hand would pass in front of her face she would focus her eyes on it pretty quickly. Not bad for a girl who four months ago was termed “blind”!!

Carol then gave me a Healing Touch session on my bed, and by the end of it I was asleep. I must’ve been pretty tired because when Chase called a couple hours later to tell me that I needed to pick him up because he didn’t have a November bus pass I became very irritated with him, saying, “Why does that matter, Chase? It’s not even November yet – sheesh!” Um, yea…mom – wake up!!

Thursday brought our assistive tech session, where Abbie’s personality was in full display. As she worked with Rebekah and Debbie, Lisa and I stepped behind her to look through some catalogs and discuss new switches for Abbie. Abbie was not choosing to play with a ball or watch a movie, so finally Debbie asked, “Do you just want to eavesdrop on what Mommy and Lisa are saying?” She immediately hit her switch to say, “Yes, please!” That same nosey little girl is in there!

Thursday night brought another new/old step for Abbie. In the morning I asked her if she wanted to eat food through her mouth, and she gave me an enthusiastic nod. I haven’t been feeding her orally for a while now because it’s just not something we’ve been focusing on, but with the changes in her mouth and improvements in head control, I though perhaps we should try again. I didn’t get around to it until the last feeding of the day. I was planning on just giving her tastes of squash to see if she’d even let the spoon in her mouth. But, she wanted to eat, and so she did! The volume was not huge – perhaps 1 ounce or so. But, she responded quickly to the spoon, chewed and swallowed well, and didn’t aspirate anything! Praise God! I have been waiting for Him to tell me it was time to pursue this instead of trying to force it in my timing (which I did for the first year.) He gave me the assurance that anything from Him isn’t “sorta, kinda, half-way”, so that when it’s His time for Abbie to eat, she will and I don’t need to stress myself out about it.

But, today, I must admit, it is all about ME! Ray is sending me to Kauai for the weekend with a special girlfriend. We’re both busy moms so I’m sure the schedule will include plenty of napping, lounging, snoozing, and sleeping in – and I can’t wait! It’s big step for me to leave Abbie for two nights, but I am not concerned at all. Between Ray and Crystal she’ll be cared for perfectly and I will return much refreshed. I hope you have a terrific weekend as well!

Abbie after her favorite time of day – bathtime! You can see the beginnings of a smile that I wasn’t able to catch with the camera.

Thurs., 11/3/05

Not a lot of sleeping got done in our house last night. Abbie and RJ were up in the night with coughs, and both eventually ended up in my bed after Ray waved the white flag and moved to the couch. RJ slept holding Abbie’s hand, and then held her in the morning while I helped Matthew with some schoolwork. This would pay sweet dividends later in the day.

As soon as Debbie got here we were off and running to PT. We got the “good parking spot”, and so were a few minutes early for our appointment. As we were sitting in the hall Abbie began to babble using many of her new sounds and new sound combinations. Then, she hit on one that she kept repeating and which sounded very intentional. At first I thought she was saying “hungry” because she uses that word a lot, but as we listened more closely Debbie and I looked at each other and said, “RJ!!” She was saying RJ’s name – I couldn’t believe it! But, it came again and again until we confirmed it with her that that’s what she was saying. Nothing like brotherly (and sisterly) love!

Already grinning from that performance, we went on to have a terrific PT session. As I wrote recently, I am truly loving therapy now that we are seeing tremendous differences each week. Lynette was bouncing Abbie on a very large peanut-shaped ball, and then started slowing rolling her forward until her feet touched. No complaints, so she kept Abbie moving forward. Soon Abbie was standing flat-footed on the ground with nice soft knees. Her bottom was still touching the ball, which we kept bouncing. For the most part, though, she was standing straight up and down, bearing much more weight than she does in the Walkable or her stander, and she was doing outstanding! It amazed me to see how tall she really is now, and what a big girl she looks like. After her legs started to tire we sat her down in a position which allowed her legs to dangle. We were able to get her knees bent to ninety degrees, allowing her feet to touch the floor nicely. Lynette said, “I don’t know if it was that massage or what, but I absolutely can’t believe how much her quads have loosened up this week!”

After lunch we went to assistive tech therapy, where Abbie uses her switch. We have a wonderful student from UH, Rebekah, who is working with Abbie under Lisa’s supervision. Rebekah had created a picnic activity for Abbie, where Abbie had to choose what foods to take along on a picnic. There were very small pictures, no bigger than 1” square, for Abbie to look at as she made her choices. As they started out Rebekah’s first comment was how well Abbie was looking at each little picture, really focusing in on them. Then, we noted how quickly Abbie was using her switch to indicate her choices. After the picnic, Abbie got to do her favorite thing – watch a movie. She chose Ice Age, and then had to use her switch to start the movie and to keep it going. While she was busy with that Lisa gave me some new toys to bring home for Abbie. The first was a TV remote control switch. This will allow Abbie to change the channel on the TV. She only watches shows that are on three channels, which happen to be right in a row, so we could have a lot of fun with this new switch. The second device allows us to plug into it any appliance or other electrical item and then have Abbie operate it via her switch. For example, I can plug the vacuum cleaner into it and then ask her to turn it on and off for me, so she can help with chores. She can also turn on her VitaMix to help me make her food. Technology is amazing! At the end of the session, Rebekah looked up and said, “What I really see this week is a big improvement in head control!” I thought “Wow! When even a speech therapy student can see that, it means we’re moving along!!”

Every day is a good day in our house – and for that we thank our Lord who has never left us! If you were following my updates in the guestbook you know that sweet little Maggie May Williams passed away on 10/27 at the age of three after fighting a very rare form of leukemia. Please remember her mom and dad, Rick and Beth, and little sister Angelina in your prayers, as well as many others who loved her. And, there is another little one in need of our prayers – Kelsey is 9 months old now and was diagnosed with adrenal cancer two months ago. You can read her story and send an encouraging note to her family at www.prayforkelsey.com.

Updates will probably be coming more frequently now, just so I can try to keep up with Miss Abigail Faith. Thank your for your continued companionship and uplifting and empowering prayers! As I was saving this update I realized that today is 18 months since the accident. In some ways I can’t believe it’s been that long, and in other ways I really thought we’d be farther along by now. All that pales in comparison, however, to what I see when I look ahead, even to tomorrow. Wow! Is this exciting or what!?!

Tues. 11/1/05

Last night was a big night for our Cowgirl Ladybug! She had her first real pony ride at our church’s harvest festival! Thankfully, it was a balmy night since we couldn’t take any blankets up on the pony. But, I think Abbie was so entranced by what she was doing that a snowstorm wouldn’t have mattered. Crystal led the pony, I stood on one side and Joe, a member of our church, stood on the other. Abbie did a great job holding up her trunk, spreading her legs and worked hard on holding up her head. I was just thrilled to see her on an actual horse, since we always pretend that her bouncy ball is the fastest horse in the race.

We also saw, once again, how the Lord’s timing is perfect. Abbie shares a birthday with my precious friend Katie. We were going to have a little birthday get-together back in August, but because of colds and sniffles it didn’t happen, and we haven’t managed to reschedule it. Katie and her six “kittens” (they are the Cheshire family, after all) were also at the festival. As they were leaving Abbie and I accompanied them to their van so that they could give Abbie her presents. They had a beautiful white stick pony for her – what a perfect memento of this wonderful night!! Then, 7-year-old Katrina unfurled the poster she made for Abbie which read. “Love Never Fails!!”

So, there I was, blubbering in the middle of the road with little Darth Vaders and Snow Whites wandering by. 4-year-old Christa, who is very much a kindred spirit with Abbie, proudly showed off her poster as well, and I cried again thinking that perhaps this is what Abbie would color if she could.

As we parted I snapped a couple photos of everyone together to email to their daddy in Iraq. Today is his “half-way day” We thank God for protecting him thus far, and ask you to continue with us to remember Walt in your prayers

We had OT today, and I must say I LOVE THERAPY these days, because the therapists are wearing out their cheeks smiling for an hour straight. Abbie’s arms and hands were so loose that she was able to help push and pull a toy, while looking at it as well! This may not sound like much, but this is a huge step for our girl! I think she may have been so relaxed because of a wonderful 2-hour long massage she received from my friend Kristin on Monday. Not only is Kristin my friend and role-model of serenity and grace, she is also a world-class masseuse – she worked on the President and Mrs. Bush when they visited Hawaii. Abbie was a very good girl and let Kristin work on her pretty deeply. It has made a huge difference in her tone and comfort level.

But, the biggest breakthrough yet came in the afternoon. Even as I write this I am frustrated with my inability to express my excitement and gratitude. Spurred by Abbie’s terrific OT session I pulled out a toy that RJ had picked out for her birthday. It’s kind of like a ferris wheel with four spokes on it, each with a ball on it. I laid Abbie on her side, and her arm and hand were so loose that I could easily take her arm and place her hand on the ball (again, doesn’t sound like much, but for Abbie it is), then I told her to push the ball to the floor. She got stuck halfway a few times but was soon doing it quickly. I was so excited I was singing, I think. But, she had more…I turned away to tell her brothers to come watch, and when I turned back she was raising her own arm to reach for the ball on top, while focusing on that ball with her eyes. She can play on her own!!!

As Arlene put it in OT today, “It is coming so fast now! For a long time she was gaining slowly, but now..WOW!!” Wow, indeed. I think that the Lord has blessed us immensely by choosing the long road for us. Not only have we learned about the healing power of God, but we’ve also learned about His sustaining grace. And, perhaps Abbie will show that no one should ever be given up on, no one!

Weds. 10/19/05

This is just a day where the good things never stopped coming. Abbie awoke smiling and relaxed and we were off to an early start at physical therapy. Because she was so loose I was able to get her orthotics on her before we left, which surprised her therapist tremendously. This allowed us to get Abbie back up in the stander again. Lynette has built it up with padding to allow for Abbie’s height, and she did great! She was up on her feet for over twenty minutes before her legs got a little shaky. After we got her down Lynette spent quite a while working with Abbie’s hips; stretching, massaging, and assessing where the tightness is. She came to a bit of a different conclusion than Dr. O, Abbie’s orthopedic surgeon. After working with Abbie, Lynette feels that the muscle group really tugging on the hip socket is right under the skin, rather than a muscle that originates inside the pelvis, which means that if we ever want to consider Botox we should be able to use it where we need to. But, at the rate Abbie is improving, I don’t think we’ll be considering that any time soon.

In the afternoon we patterned Abbie for the first time in a couple weeks. It’s difficult to keep up with that now because it’s rare to have three adults (or big kids) in the house before Abbie’s bed time. I was apprehensive about how she would respond, but that little girl was a champ! She had practically normal tone in her body and just let us move her as we wished.

Just before our small group arrived at seven I was telling Ray that it had just been a wonderful day..but, it wasn’t over yet! As we were beginning our meal one of our members said, “Is that Michelle Lutjen at the door?” What?? They moved to Florida a year ago. But, sure enough, there were Bobby and Michelle – in town on an unplanned visit because of Michelle’s mom’s unexpected death. When you love people, you never miss a beat and we laughed that evening away as if they’d never left. Michelle is our steadfast webmaster for this site, and we owe her so much. Would you please just pray for her and her family during this time?

The Lord gave me a neat picture on the way to therapy this morning. I was just turning to get on the freeway when I saw a Chevy compact pulling into the Shell station, followed closely by a Rolls Royce. “That’s just like all of us,” I thought. Doesn’t matter whether we’re driving a leased economy car with the Scotchguarded cloth interior, or we’re cruising in the hand-tooled leather, silver-winged symbol of prosperity – on the inside we all need the same thing.

“All births of things are weak and tender, and therefore we should have our eyes intent upon beginnings.” ~ Michel de Montaigne

Sunday 10/16/05

I’ve been spending the past couple of weeks getting to be Kyle’s mom while he had a two week break from school. We’ve hit every skate park nearby to give him a chance to play on his new BMX bike. Abbie has also been doing some great things.

On Wednesday we visited her GI for a checkup. It has been a couple months since Abbie’s last visit, which was when we noted how much weight she was gaining. Dr. W. walked into the room, looking at her file, and exclaiming, “Way to go!! You have really stabilized her weight!” In fact, Abbie has lost a little over a pound, mostly from her face and her almost-gone spare tire. I told Dr. W. that we had switched Abbie to a blenderized diet and started her on the plankton, which really seemed to normalize her metabolism. She was much more supportive of the diet than I had expected, since generally physicians like the precise calorie and nutrient counts available in canned formula. We don’t need to have another check-up until April!

When we had Abbie up on the table in Dr. W’s exam room, she started to really fuss. Dr. W. asked, “Is she going through a stage where she is more stressed now?” I said, “No, she is going through a stage where she believes she needs to be rocked every afternoon.” Dr. W. leaned over her and said, “Oh, do you want to be rocked?” At the mention of the r-word Abbie turned to look at her and began clucking. Dr. W. was modestly surprised and said, “Oh, wow…I see you know the word ‘rock.’” I just smiled and thought, “Oh, she knows many words!”

The day before her GI appointment we had OT and PT assessments, which we do every three months to measure her progress. In PT she met every single goal, except the one involving a stander because she has outgrown the one they have. One of her goals was to be able to sit with her legs straight and elbows supported on a bench by herself for ten seconds…she did this for minutes rather than seconds! We are also starting to see good things like her moving her legs in succession, first the right and then the left. She knows what she needs to do, it’s just a matter of loosening and then strengthening her muscles. In OT we are working relaxing her arms and hands, which she is definitely improving at doing. Like most of her body, we are finding that the tightness in her hands and arms is more under her control than it may appear. If you just want her to open her hands and relax she may or may not, but if you ask her to make ballerina hands it’s almost a guarantee that you are going to see beautifully soft hands and flexible arms.

Another highlight of last week was Abbie losing her first tooth! One of her lower front teeth had been wiggly for a while, and was barely hanging in there when Debbie helped it to exit gracefully. I had been trying to do this myself but couldn’t work up enough courage to just pluck it out. Abbie was very excited about the Tooth Fairy visiting her house. When she is happy about something she will nod with both her head and her eyes at the same time. She was doing this heartily when we told her about the upcoming night visit. She had two shiny quarters in her tooth holder the next morning, and kept them in her hand all day.

I have tried to become more diligent about getting my Psalms cycle done every day, and the blessings have abounded. Sometimes when you’re reading you can just feel something quicken inside you and you know that verse is for you. I felt this as I was reading through Psalm 34. Verses 19 and 20 read, “Many are the afflictions of the righteous; but the LORD delivers him out of them all. He keeps all his bones, not one of them is broken.” I knew that was for Abbie, especially the part about keeping all the bones, which is a strange thing to say unless you are someone facing a surgery where they want to remove parts of each leg! I know Abbie will grow to be tall, keeping the entire length of each leg intact; this song of David was written for her!

The other thing I have been utterly convicted of (again) these past couple of weeks is just how wretched I can be, and how much I need the awesome grace God so freely gives. I don’t mess up in big, splashy, newsworthy ways, but rather in the little drip-drip-drip of the small mistakes and wrong attitudes that pile up over time. One night as I laid Abbie down to sleep I began to pray with her as I always do, but was then overcome with the feeling of “How can I even presume to raise these prayers to a holy God?” The Lord answered, “That’s why I taught you to pray in Jesus’ name…not because it’s a magical password, or mystical chant, but because on your own you cannot come to me and you know it.” For a dark, quiet moment God let me see myself as I truly am, which drove the preciousness of His grace and mercy to the center of my bleeding heart.

Psalm 39:4-7

LORD, make me to know my end, And what is the extent of my days, Let me know how transient I am. Behold, Thou hast made my days as handbreadths, And my life is as nothing in Thy sight, Surely every man at his best is a mere breath. Surely every man walks about as a phantom; Surely they make an uproar for nothing; He amasses riches, and does not know who will gather them. And now Lord, for what do I wait? My hope is in Thee.

Tuesday, 10/4/05

Another week where we are seeing exciting new things from Miss Abbie. A couple nights ago I was sitting on the floor, leaning on the couch with her between my legs. She was resting on me at about a 45 degree angle. Then, she decided, “enough laying down already!!” and began to try over and over again to sit up. She made it to almost-vertical several times, and then I said, “Abbie, you need to use your arms to help pull yourself forward.” A couple more tries, and I could see her doing that. Soon she was not only pulling herself to vertical but also catching herself with her arms if she went too far forward. She could then purposefully stretch and reach toward her toes, which she loves to do. I also saw really good head control during all of this. My football-fan voice came out as I cheered each attempt and her growing success!

On Sunday I was trying to sleep off a migraine, and in the grogginess that comes before alertness, the Lord gave me a vision of a steely little thread coming toward me through a jumble of chaos. He said, “I have given you a filament of hope…”

“Well, yes, You have given me hope, but why just a little thread? Sometimes I need so much more than that to hang on to!” I thought. But, knowing that the choice of words makes profound differences with God, I meditated on the word “filament” which I though was a strange choice when talking about hope.

“Yes, Tiffany, I have given you a filament..now think about what you most associate that word with, and perhaps it will make more sense.”

The only time I have ever used that word is when explaining light bulbs to my kids. “Aha!” said the Lord, “Now you are on to something. I gave you a filament of hope because you are not supposed to be a static, stationary object at the end of that thread. Life is not a game of Crack the Whip where you just hope to hang on. I gave you a filament to light your way as you go! In your hoping, even in your waiting, you are not to sit still and wait for all your answers, hopes, and tomorrows to come to you. Come, walk with Me…and bring your light! And, haven’t you noticed by now, that the more the darkness presses in on you, the brighter the Light is?”

This little chat with the Lord has changed my posture this week from one of hanging on to my thread of hope and praying it would swing in the right direction, to grasping it firmly and setting off in pursuit…of God, the future, and things that I want to change. I have also learned that changing one’s posture doesn’t necessarily mean moving at warp speed, as I have yet to get rid of that migraine and it has been dragging on me for many days now. But, changing your stance sure does change your outlook!

Please keep praying for Abbie’s healing process to move quickly. The muscle tone in her heel cords is quite a bit higher than it has been, but this, too, falls right in line with what we were expecting, even hoping to see. Her stoma continues to look better each day, and she is hardly coughing out of it at all now.

Psalm 94:17-19 (amplified) Unless the Lord had been my help, I would soon have dwelt in the land where there is silence. When I said, “My foot is slipping,” Your mercy and loving-kindness, O Lord, held me up. In the multitude of my anxious thoughts within me, Your comforts cheer and delight my soul.

Thursday, 9/29/05

I’ve been trying to write this update since Sunday, but time has been elusive. The message that Pastor McDaniel delivered last Sunday really pierced my heart, and elicited the tears that I usually keep way down in my toes. He was speaking about how God is the God of the impossible (and how thankful I am for that.), but also talked about how a broken heart is an acceptable sacrifice to the Lord.

He used a quote from one of my heroes, Elisabeth Elliot: “If the only thing you have to offer is a broken heart, you offer a broken heart. So in a time of grief, the recognition that this is material for sacrifice has been a very great strength for me. Realizing that nothing I have, nothing I am will be refused on the part of Christ. I simply give it to Him as the little boy gave Jesus his five loaves and two small fishes–with the same feeling of the disciples when they said, “What is the good of that for such a crowd?” Naturally, in almost anything I offer to Christ, my reaction would be, “What is the good of that? The point is, the use He makes of it is none of my business; it is His business, it is His blessing. So this grief, this loss, this suffering, this pain–whatever it is, which at the moment is God’s means of testing my faith and bringing me to the recognition of who He is–that is the thing I can offer.”

(Elizabeth Elliot, Worldwide Challenge, January 1978, pp. 39-40)

I so identified with what Elisabeth was saying that I wept, realizing that although I can often compartmentalize it, my heart is still broken. The first week after Abbie’s accident I heard God asking me to offer heart as a living sacrifice. He says that still, and I offer it all, in many, many pieces.

Well, that message so moved me that I was emotionally drained and wanted to must get out of church and to the car as quickly as possible. I didn’t think I had the energy to make conversation with anyone. I ran to the bathroom quickly as Ray was brining Abbie down the elevator. On the way out, the first in a string of angels met me that morning.

Kim, whom I’d never met, stopped me in the hallway, saying that she’d heard about Abbie from our mutual friend Katy. She told me about how she had fifty friends on the mainland praying for Abbie, and that Abbie’s journey had truly impacted her life and faith. Those words were the balm that my soul needed. I just hugged Kim and thanked her for being God’s angel to me when I so badly needed it.

I walked about two steps and then met Ruth, Kim’s mom. She told me she was just visiting from California, but wanted me to know how deeply Abbie’s journey had affected her daughter, especially in causing her to seek to deepen her walk with the Lord, and to search for a church home. I felt God impressing on me, “Look what I do with a broken-hearted sacrifice!”

As soon as Ruth stepped away, Ethel, another woman I’d never met, came up to me. She said, “I have two churches here and three on the mainland that I want to pray for Abbie. Many of the people don’t have computers, so could you just tell me what we can specifically pray for?” I was overwhelmed with the outpouring of God’s love through strangers. I think I told her to pray for Abbie’s vision and muscle tone, but I was so in awe at this point, I can’t be sure what I said.

I thought I’d make my way to the door at that point, but then I was stopped by Zane and Dianne, who were visiting from Georgia and staying at the home of our precious friends, the Bosgras. They, too, told me they had been praying for us all this time, and then Dianne shared a story that made my heart stop. She said, “Our daughter drowned when she was three, and now she is 29 and expecting her second child.” Through Dianne, God said to me “Look way out there..great things, wonderfully normal things will come!!” That girl’s daddy still choked up when describing how he gave her CPR 26 years ago, but he said, “She made it, and so we can believe with you for Abbie, and we do!”

Five angels whom I ‘d never before seen met me that morning when my heart was shattered. “I will never leave you nor forsake you” has never been so real to me!

Now, as for Miss Abbie…lots of good stuff to tell you! The day after I asked you all to pray for her to stop coughing up junk all the time, she did! She has been very clear this week. The combination of your prayers and the new blenderized fresh food diet we have her on is making a huge difference. Her stoma is often sticking together now so that it looks completely sealed, so we are moving in the right direction!

At our last Vital Stim session last week, Abbie’s therapist told me how to treat her face with the Biomodulator to improve her facial muscle tone. We are incredibly blessed that Shau Jwo is not only a therapist but also the mom of a three year old special girl, Teresa, who also uses a G-tube. Shau Jwo also recently purchased a device and went to Dr. Tennant’s conference, so she is very supportive of using it with Abbie. I followed her directions, and in three days we saw a huge difference. Abbie’s lower lip used to droop a little, and kind of rest on her chin. Now it is up in the proper position, looking beautiful, and cutting down on the drooling greatly! The change was very apparent to her PT on Tuesday. She is saying more sounds now as well as the tone in her face improves.
 Her PT session on Tuesday was great! Her muscle tone is still a bit high as she continues through her energetic healing process, but we saw some exciting things. She got to bounce on the ball for a while, which is a favorite, and then got to go down the slide many times. We noted much improved head control, with Abbie being able to lift her head without tensing her arms or legs. She is able to isolate just the proper muscles needed to lift, and use only those, which is an exciting advance.

Overall, she continues to become more alert, aware, engaged, and animated each day. She is moving her eyes to objects much more quickly and tracking even better! We see her blossoming daily, and it’s a thrill to have daily progress after taking a leisurely pace for so long.

My Psalms cycle took me to 119 today…I always seem to get really busy on the days when 119 pops up and have never read the whole 176 verses in the same day. Today I committed to doing it and was so blessed. I already knew many of the stand-alone gems in 119, but I discovered a repeated theme that I didn’t know was in this Psalm. Many, many times the psalmist says, “Renew and quicken me, give me life, renew me, according to your Word, ordinances and promises.” (I condensed many verses there). I read this Psalm as I was treating Abbie with our device knowing that I was watching renewal take place, not because of technology but because our God is true to His Word and it never changes or fails. I told Abbie today, “When you are all better, just make sure you always tell the story of how God healed you, and what He did for us.” I can’t wait to hear her spin on the miracle of her renewal by God’s grace.

Friday, 9/23/05

After all these months of moseying along this path I feel like I am watching Abbie blossom moment by moment in front of my eyes! Yesterday she got to “read” her computer books again. We saw several encouraging things. She is starting to track more consistently when something interests her. She was doing a good job making choices with her switch. And, my favorite, when she chose to click on the grasshopper to see what he would do, she grinned as he sang a silly song. She was engaged and even entertained by what she was doing.

Another huge difference this week is Abbie’s temperature sensitivity. The slightest breeze has always set her off, and we have to bundle her up to go outside even on balmy days. She often looks like a little orphan, all wrapped up in colorful blankets with just two eyes peeking out. I wanted to get more sunshine onto her skin this week, so I dressed her in shorts, loaded her in the jogging stroller, and headed out for a walk. Not one complaint, even as the breeze kicked up! I’ve done this several times this week. Yesterday we rode to therapy without Abbie wearing a sweatshirt, and with the air conditioner on. The AC has always been a bone of contention between Abbie and everyone else in the car. We would all be about to pass out from the heat, yet even the lowest setting of air conditioning would bring gales of complaints from Abbie. This normalization of her thermostat is a huge praise, and a significant sign that she is getting better!

She had her last session of Vital Stim yesterday – I have decided to take a break for a while, which her therapist fully supports. We saw a big change in her yesterday in response to the electrodes. We couldn’t turn up the level to anything close to what we have used in the past. She was far too sensitive for that!! So, it seems that on the inside and on the outside, Abbie is regaining normal sensation and control.

Our PT/OT session was interesting this week. We didn’t get to do anything fun like walking because Abbie’s muscles were far too tight. Her legs most closely resembled a pair of pale telephone poles. It may surprise you, though, to hear me call that a good thing. Her entire body has been degenerative (low energy) since her accident. To get back to normal she has to go back through the inflammation (high energy) phase. When I measured her levels that day they were about off the charts, as inflamed as it gets. So, what we are doing with her is working, and we are making progress! As I’ve continued to work with her this week her legs have loosened up and been almost floppy at times. The one highlight of that session was when Arlene was working with Abbie’s arms, using her hands to bring an object towards her face and then out again. She said, “Look! Her pupils are reacting when I bring it closer and then take it away..she is trying to focus on it! She is seeing it!” Praise God for answered prayers!

And, speaking of prayers, I feel very pressed to once again ask you to join me in praying for a specific family among the multitudes who are in the midst of the storm. But, this time it is a church family. Champion Forest Baptist Church in Houston has ceaselessly encouraged me during this journey. I have often received cards from their “prayer room” where they have a 24-hour prayer ministry, as well as personal notes from their members. Please just cover them with prayers for safety, protection, and preservation as we remember all who are in Rita’s path.

I have one more personal request to make. In July of 2004, as we were preparing to finally take Abbie home from the hospital we ended up next to the Afandor family on the general peds floor. Donna was a Godsend, because she was a “been there, dealt with that problem” special needs mom, as well as a fellow homeschooler. Her daughter Alejandra, who is about Abbie’s age, had been born with complex needs which were still unclear. Donna gave me little tips like “Make sure to ask for the bag that goes with the suction machine” and “Here’s how to get through a month with only ten trach ties”. Alejandra also had a trach, and would plug it with her finger to make herself heard. That spunky little girl is now at Stanford for treatment and her lungs are not doing well. Donna has set up a page for her, www.caringbridge.org/visit/alejandraafandor. If you have a moment would you send up a prayer for her and her family?

The last new thing we have added is real food! The more research I’ve done the more I’ve realized that even though we got the best possible formula for Abbie it still has a lot of ingredients in it that are bad for Abbie, and actually work against what we are trying to do. So, last night I got out my VitaMix and tossed in some free-range chicken, organic yam, steel-cut oats, blueberries, banana, mango and poi. Yum, right? I was a little apprehensive with the first feeding this morning, but Abbie did terrific. I am excited by the healthier diet we will be able to offer Abbie, as we try with each step to use more and more of what God has provided for us.

I pray that peace, comfort and joy are yours today, no matter where you may find yourself.

Monday, 9/19/05

I am writing with joy to tell you that I got to see Abbie be a little girl again last Friday. Her phenomenal speech therapist, Lisa, coordinated a new program at the university for kids using switches to communicate. It will give the speech therapy students a chance to work with this technology and the kids who use it, as well as providing a chance for parents to meet each other and talk about our common challenges. I was curious to see how Abbie would respond to other kids who are similar to her. Honestly, I wasn’t expecting much. But, they rolled a little boy named Mark up to her chair, and he hit his switch to say, “Hi! My name is Mark.” Abbie immediately responded by hitting her switch to answer with , “Hi! My name is Abbie!” Once she heard what the voice output device said, she was off and running! I must’ve heard “Hi! My name is Abbie” five times in the next 30 seconds. She was excited to meet the third child in her group and greeted him as well. Tears sprang to my eyes as I observed her caring about other kids and wanting to interact with them – and having a means to do so! When the student took her switch away to reprogram it to say something new, Abbie got upset and gave her “the look!” She really understands now that the switch can give her a voice, and she is VERY determined to be heard.

After a half-hour with just the three of them, the second session kids, four more, joined the crew for story time and music. The parents went right next door to observe through 2-way glass since the room was too small for all of us to fit. It was so refreshing to talk with moms and dads who have many of the same issues, struggles, hopes and joys. Many of the families were already acquainted, so the afternoon was full of, “Wow! Look how he’s grown!” and “Look at how great she is doing now!!” – much like baseball team parents getting together for a new season.

Watching Abbie enjoy this session prompted me to get much more aggressive with how often we use her switch. She pretty much has access to it all the time now, if I can help it. As she lies on her stomach for a treatment or massage, she “sings” to me. I program in her favorite song, and she has to hit her switch to play each line. She has gotten so good that I am truly sick of hearing the “Wiggle” song, and I suppose other shoppers in the market think I’m strange when I burst out with “I can wiggle my elbows and even my nose…”

Her trach hole is so tiny now, but she is still coughing out junk daily, which prevents it from closing completely. Would you just pray that she would not have any sinus drainage and coughing? It would only take a day or two of being completely clear for her stoma to seal up.

The Carvers will be returning to New Mexico on Wednesday. We are so thankful for the time they’ve been able to spend with us, and pray for a safe and smooth return to Los Alamos. It will seem strangely quiet to have “only” six kids in the house after they leave.

One of the kids had a rough day at school last week – kid stuff that is normal but still really hurts the heart, especially the heart of a mom. As I was talking at length with him, the Lord said, “Don’t worry. It is always hard to watch a heart of compassion being made.” I’m so thankful that we don’t ever suffer for nothing, and pray for the eyes to see the blessing in the midst of the hurt. I also thought of how many, many hearts of compassion are being carved in our country right now, in the Gulf states. We continue to pray for you!

Abbie working with her switch. The ball hanging down off the gooseneck is her switch, which is connected to the voice output device (with the purple top). She just has to move the ball slightly to activate the voice output device. She uses a different type of switch right now, and is getting better at it each day. Technology is such a blessing in this area!

Wednesday, 9/14/2005

My hands are raised, I’m standing still…don’t shoot! I know I’m way overdue on an update. We have the blessing of houseguests right now – the Carver family from New Mexico is here, adding seven more to our joyful chaos!

Much has happened since the last update. The first thing I want to tell you about has very little to do with Abbie, but everything to do with my travels with God. In the last update I told you about our dear friends, the Garguilo family. Like thousands of others, they have been tragically impacted by Katrina. Two weeks ago our small group prayed specifically and insistently for them..two days later Fred called Ray and said, “You’ll never guess what just happened!!”

Fred had decided to withdraw his Army retirement paperwork, and the Army had issued him new orders making him the chief medical operations officer for Joint Task Force Katrina, based in Mississippi! So..Fred would be reunited with his family, in his home state using his skills to bring help and healing! The speed and completeness of this answer to prayer is a large granite marker on my road with the Lord. I laughed aloud with joy as Ray told me what had happened, until the joy bubbled over and I danced around the house. Like all of you, I am sure, we continue to pray for those displaced, separated, hurting, and grieving in the wake of the storm. Katrina has issued a personal challenge to each of us, to be the hands and feet of Christ. May we not fail.

We started Abbie on the phytoplankton that I told you about in the last update.Between that and my improved treatment skills with Biomodulator we are seeingimprovements! During her last assistive technology session Abbie was “reading” a computer-based book. To turn the page she would have to depress her switch, which connect to a voice output device that was programmed to say “yes, please.” Then, within each page she could select items to look more closely at. Of course, on the page where she could choose between the mommy and the daddy…she chose the daddy! She did very well, and at the end her therapist said, “She’s just..it’s like..I don’t know how to say it.” And I said, “Well, I am just seeing faster processing.” Lisa heartily agreed. We are also seeing much more smiling, especially in response to stimuli like tickling or favorite songs.

As a result of everthing I learned at the recent Energetic Medicine conference I have been diving deep into research about nutrition, to try to figure out how I can give Abbie the best nutritional platform to stand on. It would take me pages to explain all I’ve learned, but the best resource I’ve found is a “cookbook” called Nourishing Traditions by Sally Fallon, which I bought at Amazon. It has lots of good recipes, but more than that it is full of information and research about nutrition. My boys, including the biggest one, are a little scared about mom’s transitions in the cupboards and refrigerator, but even in just a short time we can see the changes with improved eating habits. Just one more way that Abbie is pulling all of us along on her path.

It has been nice to have the Carvers here to see Abbie’s changes. When “outside eyes” can tell when she is mad, upset, hungry and happy, then I know I’m not just seeing things. Yesterday, as we were getting her in the harness for the Walkable, she told her therapists, “hungry, hungry!!” She was clear enough that even they understood her! It was still 30 minutes until eating time, so up she went.

Abbie walked for about 25 minutes to get to a slide. Since she clearly stated that she’d rather be eating than walking we thought we’d better give her an incentive. It is very hard work for her to be upright, trying to coordinate the relaxation and movements of all her muscles, so we all cheered when she made it across the room. As she sat at the top of the slide in victory, she held her head up so tall and proudly.

Our sleeping angel is wearing a hat brought to her by our special friend Cheryl Desko. Cheryl, a surgical nurse, went on a two-week mission trip to Guatamala that ended the day before their family vacation to Hawaii began. She bought this hat from villagers in Guatamala and brought it all the way across the ocean to Abbie.

Her vision is also improving..she will look up and down now to see parts of a movie, and will focus on what is going on. She also seems to be paying attention to her movies even when the screen isn’t right next to her face. She is blinking much more when she is alert, which is a sign that she is trying to adjust her vision. Today we had Vital Stim, Abbie’s eating therapy, for the first time since early June. She was sleepy, but still participated. Her therapist noted that her tongue is much stronger now, another evidence that God is always at work, even (especially?) when the therapies cease. When I was brokenheartedly praying for those affected by the hurricane, I was led to Psalm 30. It pierced me so deeply that I spent time memorizing it – the words continue to encourage me daily.

Psalm 30:1-6 “I will extol Thee, O Lord, for Thou has lifted me up, and hast not let my enemies rejoice over me. O Lord my God, I cried to Thee for help and Thou didst heal me. O Lord, thou hast brought up my soul from Sheol; Thou hast kept me alive, that I should not go down to the pit. Sing praise to the Lord, you His godly ones, And give thanks to his holy name. For His anger is but for a moment, His favor is for a lifetime; Weeping may last for the night, But a shout of joy comes in the morning.”

Tuesday, 8/30/05

I realized this evening that I’ve been procrastinating writing an update because I don’t know how to condense all that has happened lately into a sensibly-sized update. So, I’ve given up on the Shrinky-Dink effort, and will instead break this into several parts.

Part I: A birthday and a gift

Thank you all so much for your birthday wishes for Abbie. We had a quiet, simple celebration at home with her. She really enjoyed helping open her presents! We didn’t have a cake this year, partially because it just didn’t get ordered but partially because we want to wait until next year when she can eat it with us!

Right before Abbie’s birthday the Lord gave our family a gift. As much as we’ve cried out to the Lord to heal Abbie, and the dark hours we’ve spent wondering why He allowed this, when we experience a “near miss” we truly know what we have been spared.

Chase has recently taken up cycling after getting Ray’s old racing bike tuned up. He really enjoys it and is finding that he has a great natural ability for it. Last Sunday he was on a ride to prepare for The Century, a 100-mile bike race scheduled for next month. I knew something bad had happened as soon as I heard the tone of Ray’s voice after he answered the phone.

Chase had been hit by a car not far from our house – again, our worst nightmare was coming true. But, I must tell you just how benevolent God was…there was a police car sitting at the intersection of the accident, because there had been an auto accident there just one hour before and the officer was completing his report. He heard the collision, saw Chase fly through the air, and was there immediately.

Shortly after the accident some very good friends of ours happened upon the accident. The “God” part of it is that they live on the other side of the island, in Kailua, and had simply missed the turn to Diamond Head, and Tom just “happens” to be vascular surgeon. So, even before we left the house we had Tom on the line telling us that Chase was OK. He was very shaken, but only had bumps and bruises.

I felt especially bad for the man who, through no fault of his own, hit Chase. He was very kind, and obviously very affected by the accident. Chase could’ve, and actually should’ve been injured much more seriously, but the Lord protected Him and I thank Him for that every day. We know how it feels to take a grim ambulance ride and have the tests return with poor results. We know the smells of the PICU and the cold fear of the unknown and uncontrollable. God saved us from all that this time, and I must praise Him with the same intensity with which I cry out to Him on Abbie’s behalf!

Part II: Incredible Hope

As I’ve written about previously, we have been using something called a “Biomodulator” device with Abbie. It was invented by Dr. Jerry Tennant based on a Russian device called the SCENAR. The Biomodulator works with the energy in the body – our bodies are wired much like our houses, with circuits transferring energy from one place to another. You see the body’s energy in action in an EKG of the heart or an EEG of the brain.

Although I purchased the device and began using it with Abbie back in June, the training conference was this past weekend, 8/25-27. I thought it was going to be a “let’s show you how to use the device” seminar. I got infinitely more than I bargained for! There were people from around the world and the US there, as well as many professors from the UH nursing and medical schools. I only wish I could condense the 20 hours of lecture, but there was not one wasted minute. I learned so much that I am still processing it. But, the bottom line is that I feel rearmed and renewed for the battle to save Abbie from the scalpel, as well as the wheelchair! And, God has used the trials of others to provide means of restoration for Abbie and others.

Back in June Dr. Tennant sent me a long email with a lot of specific advice for Abbie, including nutritional advice. Abbie needs to build new, healthy cells, and to do that she needs lots of the right kinds of fats. And, we also need to restore the voltage in Abbie’s body. You can think of our bodies like batteries, and when voltage is low you can’t heal. If you don’t have the right amount of water and minerals you can’t hold a charge, just like a battery. So, he recommended that we give Abbie eggs, because they are a complete food that is very high in one certain compound needed to build healthy cell membranes, as well as minerals and fat. We tried for a few days, but they made Abbie nauseous, so we had to stop. While listening to his lecture about how important the nutrients in eggs are, I was getting depressed because Abbie’s liver cannot handle those fats right now, which is why she was getting sick with the eggs. In the midst of that frustration came a “But, God” moment.

Another “complete” food is sea plankton, the microscopic food that some whales feed on, but there had never been a way to harvest it for human consumption. But then…a shrimp farmer in British Columbia wanted to feed plankton to his shrimp and created large ocean-fed tanks. All was going well, and then he was diagnosed with a rare and fatal cancer, mesothelioma. There are only 2000 cases in North America every year, and the survival rate is zero. As his health was declining, for some reason one day he stuck his finger into one of his tanks and ate the plankton. His adult daughter was very mad at him..as if cancer wasn’t enough to make him sick, now he was eating plankton!! He kept doing it though, and eventually the growths in his chest were benign. His physicians surmised that maybe he never even had cancer, because no one recovers from mesothelioma.
 His plankton has been available commercially for just a little while now, and Dr. Tennant has been using it in his clinic for about a month. When I spoke to him on Saturday he said, “I’ve only been using it month, and don’t have a tremendous number of cases yet..but, the results I’m seeing are astounding.” Needless to say, I ordered some for Abbie that very night, and await its arrival anxiously. I thank God that He truly, truly has provided all we need for health and healing…even a little microscopic organism!!

The other therapy we have had in the back of our mind for many months is Cranial Sacral therapy..too long to describe it here, but it require manipulation of the cervical spine and head to get things in alignment and allow the cranial sacral pump to function again. As I was listening to Dr. Tennant talk about how important proper alignment of the C-spine and skull are, and the role the pump plays, I felt that I was getting a confirmation of the need to pursue that therapy. That was Thursday. On Friday, he asked for a volunteer from the audience, and a local man went up on stage. We could see that one ear was higher than the other, as well as one shoulder and one hip –he was out of alignment. Dr. Tennant took the Biomodulator and treated this man for one minute on a specific spot on each side of his neck. After moving his head, shoulders, and back, and walking a few steps, the man’s ears were level! The device accomplished in 2 minutes what would’ve taken months of Cranial Sacral therapy to do! I was astounded, and so happy to cross one more “to do” off our list! I came home and “zapped” (as we call it) Ray, Chase and Crystal. The younger set thinks they have a crazy mom with a cattle prod, and won’t come near me for a treatment!

We’ve tried, and are using many things with Abbie that I don’t really write about or publicize, but I can’t keep this to myself because the potential it has to help people heal and be well is too great. Dr. Tennant is based in Dallas, so he often lectures there but is also traveling to Orlando this fall and will be back in Honolulu this January. Do whatever you can to see him, the nutritional advice alone will change your life! There were some tears and grumbles when I trashed every single thing in our house containing Aspartame (a potent neurotoxin) or Splenda (basically a pesticide), but I want my family to be well! Dr. Tennant lectures for Senergy Medical Group, www.senergymedicalgroup.com. It is not cheap to buy a device or attend his lectures, but it’s a whole lot less costly than being sick or having to take prescription drugs forever!

Just like the plankton farmer, Dr. Tennant’s vision is borne from trial. He is a brilliant physician, graduated college at 19, and medical school at 23. He pioneered outpatient opthalmalogical surgery, and then invented the lenses that are implanted in patients after cataract surgery. When he started doing these implants he was the chair of the department in a teaching hospital. He was fired for doing the implants, because anyone “crazy enough to do that shouldn’t be teaching”. It’s now a common procedure. He then went on to help test the excimer laser that is used for Lasik procedures, doing 4000 cases or so.

What they didn’t know at the time is that in each case dust came up off the cornea with each cut and penetrated their masks. The dust contained live viruses, and Dr. Tennant ended up with viral encephalitis, an infection in the brain. For seven years he slept 16 hours a day, able to mentally function 2-3 hours per day. There was “no hope” and he declined to the point where it was thought he would certainly die in the summer of 1999.

“But, then..” he had a friend with a lymphoma in her neck who had failed all treatments at MD Anderson, and was told there was nothing else to do. She went to Mexico, and through a circumstance ended up being treated with methods utilizing and aiding her body’s energy system. Within four days she went from nearly being choked to death by the tumor to normal. That stoked Dr. Tennant’s quest, and the results of desire meeting brilliance have produced an approach that will bring hope to the hopeless!

I know I’ve just written perhaps a lot more than many of you wanted to read, but to me this is one way that Abbie’s journey may bring tangible help and hope to others. I have already seen noticeable changes since this weekend when I started using the device in the most effective ways on Abbie. She tried to talk to our friends, the Latimers, who were bidding her farewell today before moving back to Canada. She said “go” several times, as we talked about our family going to see them next summer (we have a camping date in Kelowna.) She also tried to say other things that came out garbled. We also got to share with them Abbie’s unique nod. When she heartily agrees with something she moved her eyes up and down very quickly. It was obvious even to Warren and Jody that she understood what we were saying and was communicating as best she could.

Part III: Heartbreak

I have learned this week what I suspected all along. It is actually easier to be the one going through the trial than the one watching someone you care about go through it. When you are the one being tested, God carries you and pours His grace upon you. When you are the spectator the heartbreak and frustration of not being able to do anything are overwhelming.

We have some special “Army-days” friends, Fred and Michelle Garguilo. We were thrilled when they were stationed here not long after we moved here ourselves. After Abbie’s accident I think Fred and Michelle took the boys for about 10 straight weekends. We joke that now our kids know them better than we do. They are just exceptional people.

Since this is Fred’s last assignment they bought their retirement home on the way to Hawaii, and rented it out while here. Fred moved Michelle and the kids to the house in July so the kids could get started in school there while he remains here until February. Fortunately, they moved to the town where three of Fred’s brothers live, so Michelle would have plenty of handymen if she needed them.

Unfortunately, Fred’s brothers live in Gulfport, Mississippi. Ray talked to Fred today, and because no one can get in they are uncertain of things right now, but their neighborhood is under ten feet of water so they assume the house is a total loss.

The magnitude of what has happened on our Gulf Coast is impossible to absorb, and the suffering of thousands upon thousands must drive us to our knees. It is all we can do. I am so incredibly frustrated that, after all the Garguilos did for us in our hour of need, we cannot do anything tangible to help them now. But, I have met God in the pitch black and I know that is where He is most powerful and most tender. Please join us as we lift up the many, many whose live have been obliterated. If you are in that area, please know that prayers are converging upon you from all over, even way out here in the Pacific.

Saturday, 8/20/05

Much has happened since the last update, and it’s taken me a while to mentally digest it and come to terms with it before I could even think about distilling it down into an update. Last weekend Abbie’s right leg began to swell, and on Saturday evening I noticed that her toes were bluish around her nails. The coloring was fine again on Sunday, but I measured her thighs and found that her right thigh was 1 ¼ inches bigger than her left. I thought that perhaps we had injured her knee or her leg, and kept an eye on her until our therapy session on Tuesday.

Her PT checked her leg very closely and couldn’t find an injury or a cause for the swelling, which was still obvious in her right leg. Because Abbie clotted on that side while she was in the PICU, that was a concern. So, immediately after the session we took her downstairs to the ER to be assessed. An ultrasound was performed which showed no clotting, and Xrays were taken to rule out a femur fracture. Abbie’s bones are weaker now since she hasn’t been bearing weight for so long, so fractures can happen easily. Praise God, those films were clear! I took a copy of the Xrays with me so that we could take them to our Shriner’s appointment on Friday. I glanced at them quickly and to me her hip joints didn’t look any worse than they had in June, but I’m just a mom and we’d have to wait three days for the orthopedist’s thoughts.

Friday morning we had more Xray’s taken at Shriner’s because they wanted a slightly different view. We were concerned about Abbie’s muscle tone, which has been increased since she got sick back in June. I was even willing to talk about intrathecal Baclofen, which requires implanting a pump into Abbie so that medication can be delivered directly into her spine. This allows for the muscle relaxation but avoids the systemic sedating effects of the oral Baclofen.

Abbie was particularly tight during the assessment there, not even allowing her ankles or left knee to bend, which are things she does easily at home. The nurse practitioner got two Baclofen pumps for us to look at. I was taken aback by their size and weight. The old style is the size of a tuna can, but heavier. The “new and improved” style is the same size but half the width, and still very heavy. It is difficult for me to imagine how that device would fit in Abbie’s little body. I was reeling from this when the orthopedist showed us her new Xrays next to her Xrays from one year ago. Her right hip is now 75% dislocated, with her left about 60% out. I was so sad to see how much she had changed from that little body that was so strong from running and playing.

The bright spot that we tried to cling to that morning is that Dr. O said, “If she was not making progress, this wouldn’t be an issue..we would just let the hips dislocate and not worry about it. But, I see that she is making progress, so there are three options we need to talk about.” There are two main muscle groups who are the culprits in pulling the hips out. The least invasive option is to inject Botox into one set of muscles in the inner thigh, and then brace Abbie for several weeks to get those muscles stretched out again. But, the second set of muscles can’t be reached by Botox injections, so this solution is incomplete, and really only buys us time.

I started going numb on the inside as he described the second option. It involves actually cutting the muscles in both of the problem groups. He said that Abbie will not lose function, and that they eventually grow together again, but that this would release the tension on her hips. I hated the thought of her being opened up and cut apart, but it was about to get much worse.

The third option is called a “bony procedure” and is by far the most major operation. Dr. O. would open her up and actually take a portion out of each femur to shorten her legs, which would release the tension in her muscles. He will also have to reconstruct the head of her hip bone and the cup it fits into because they are being deformed during this period of subluxation. I could not bear to even fathom doing this to her, but he looked at me and said, “She will have to have a bony procedure, it’s just a matter of when.”

I held it together until the parking lot, when I just broke down by the side of the van. Ray held me and reminded me that it was a “good appointment” because these things are necessary because Abbie is making progress. We prayed together as I leaned on the door of the van, and then I drove home to begin wrestling with the decisions we need to make. We will see Dr. O in two months to discuss our plans and timelines.

I must admit that this was the first day that I really had moments of anger toward God. “How much??” I asked..”How much does she have to go through and suffer??” I got mad when I went back in my mind just two days, and remembered a quick trip I’d made to Gymboree.

Abbie has outgrown most of her clothes and I wanted to get her some new pants. My sister made a Gymboree run with me last summer, just before Abbie was discharged from Kapiolani. At that time I found a beautiful size 3 ballerina dress, complete with tutu. I wanted to buy it, but Tara said, “Don’t buy that yet, it will just make you sad right now.” I agreed and put it back.

A couple months ago I had a dream about that dress, knowing that I should’ve bought it because Abbie is going to need it. But, they were long gone from the stores. Well, on Wednesday, there were two lonely little ballerina dresses on a rack in Gymboree, and one of them was a 5/6. It was time to buy it. On Thursday I hung it on a hook right by Abbie’s bed, because this is the dress she is going to dance in. I felt that very clearly as I prayed, and I wondered how in the world that dress corresponded to discussions about removing parts of Abbie’s legs.

I lay on my bed a long time Friday afternoon, wrestling with the decisions, my fears, and my sadness. I felt as if a huge brick had been added to the weight we have been carrying for so long. In my mind I saw a big weightlifter, straining to raise the bar, struggling, shaking…then finally bringing his foot up even with the other and standing tall. Just about the time he was looking smugly at the audience, I saw the two huge hands that were really holding the weight…it wasn’t the man after all, it was God. In that moment God said to me, “All I am asking is that you make the motion to stand, I will bear the weight. I am not even asking you to stand under it, just make the motion to stand.”

And so I did.

The motion He wanted was for me to remember all I have learned of Him and from Him in these months, to recall His faithfulness and His promises. Once again He was asking me to believe His Truth over facts on a film. We are not going to sit down and accept that Abbie must eventually have this gruesome surgery. We are going to stand on His promises, and we are going to fight using the tools and methods He has given us. We covet your prayers for her muscle tone and her hips as this specific battle begins in earnest. We are thankful that He has already provided all we need to win this one: her program, her supplements, the Biomodulator device, terrific therapists, our wonder-nurse and teammate, Debbie, and above all, the power of prayer!

The Lord confirmed His word to me about the weightlifter amazingly today. I picked up RJ’s Bible, which is a New International Reader’s Version – the language is simplified to a 3rd grade reading level. I was doing my Psalms cycle, except that I thought today was the 21st. So, I landed on Psalm 81, and verses 6 and 7 stunned me. “God said, ‘I removed the load from your shoulders. I set your hands free from carrying heavy baskets. You called out when you were in trouble, and I saved you. I answered you out of a thundercloud. I put you to the test at the waters of Meribah.” The simple language allowed the message to sink deeply into my heart, and realize that my image of the weightlifter wasn’t just my imagination, it was an encouragement and comfort from God!

We also saw Abbie’s ENT, Dr. T. this week. After two rounds of a powerful antibiotic for sinus infections, Abbie was still having lots of mucous drainage. I asked if perhaps it could be allergies, since I and two of her older brothers take allergy meds. Dr. T. thought this may be the case, so we started her on Zyrtec. Here’s just one reason I love Dr. T. – she thought Zyrtec syrup would be better than Claritin because it tastes better, and eventually we will be giving it to Abbie by mouth rather than g-tube. Having a physician not only allow optimism, but encourage it is a true blessing! We started on Thursday night and it has helped tremendously! I am now very hopeful that Abbie’s tracheostomy stoma may finally close since she isn’t coughing mucous out incessantly.

This was a very trying week for us, as we continued our rollercoaster ride with Abbie while also trying to be available and involved parents of five other kids. RJ blessed my heart today, though, when we saw a poster of Rosie the Riveter from WWII. As she points to her bicep, the caption above her head says, “We can do it!!” RJ looked up at me and said, “That’s you mom – that’s you about Abbie! And that’s Abbie, too!” In their own ways, they know we are in the fight of our lives, and they realize deep down that the sacrifices they make are so that we can win. Brave and true little soldiers.

This week will bring Abbie’s fourth birthday on Tuesday, the 23rd. We are so grateful to be celebrating this day with her. She is very aware that she is going to be four, and I cannot wait to see what this year brings. If you remember her on Tuesday, please just sent an extra praise up to God for allowing her to be here and to be blossoming again. Thank you for your prayers – I cannot begin to describe the comfort they bring during weeks like this one!

This is the Litegait Walkable that we used with Abbie this week. She loved it, and hopefully we’ll be able to post pictures of her using it soon!

Friday, 8/12/05

This has been a crazy week with two school orientations, and many appointments! Abbie did get to go walking again, but this time we took the Walkable away from the treadmill, and instead we strolled down the hall! Abbie was on her feet for 45 minutes, which thrilled her therapists, because that is a long time for someone who generally never bears her own weight. She worked hard the whole time, and took at least one step all by herself. I just love this piece of equipment, as does Abbie. She starts clucking in the morning when I tell her we are going to play on Auntie Lynette’s Walking Toy that day.

After her PT/OT session we went to see her gastroenterologist because I felt that Abbie was putting on too much weight. Her thighs and and tummy are looking plump, and our backs are feeling an extra strain when we lift her. Well, yes, I suppose 4.5 pounds in three months is a little excessive! That’s how much she’s gained since her last GI visit in May. She now weights 43lbs 6oz…and is just a few milkshakes away from catching up with the twins! So, we are cutting her calories again, and hope that this reduction, combined with an increased activity level now that she’s healthy, will help to stabilize her weight. We don’t want her to lose weight, we just want to stop her here and let her height catch up with her weight.

On Tuesday night, after walking that afternoon, Abbie was again lifting her legs all night. I had her on the potty around 11pm, which is her “bright and shiny” time (if only we could have therapy then!) and she was raising her legs incessantly. I was talking to her about her brothers going to school, and she was very interested in this. So, I said, “Would you like to go to preschool, Abbie?” Out came her dimple as she grinned in agreement. We spent the rest of the night talking about fun things big girls do at preschool, like painting, swinging, coloring and singing…and she would smile with each new idea.

I congratulated her for using her potty, telling her “That’s what big preschool girls do!” But, I also told her that to go to preschool she has to be walking and talking, which prompted more leg raising and clucking. We don’t intend to send Abbie to special-ed preschool, and that was not what I was talking to her about. In my mind I pictured her with her friend, Sophia, who just started at a great co-op preschool. The bottom line is that right now Abbie is all about going to preschool, so we are using that as a big motivator for her. Our small group was praying over her on Wednesday evening, and after we finished, I told them about Abbie’s preschool dreams. They were thrilled to see Abbie respond when they asked her about going to school, and I was happy to have others share our excitement.

I found out again this week that the internet is a wonderful thing, as it brought two special blessings to us. The first is the story about a woman named Marlene, who, as the result of being born very prematurely had Cerebral Palsy as a child. That’s not a typo – she had it, but at the age of twelve she was miraculously healed. Isabelle’s mom, Annie told me about the story and I searched for it online. Here is the link to this amazing and encouraging story.

The second blessing started at Google (what would we do without that?) A woman in Georgia, Tammy, had a new baby granddaughter named Abbie, so she googled that name to see what she’d find. She found Abbie’s site, which is not so incredible, but the amazing part is that Tammy is also the mother of a miracle girl. Her daughter, Megan, survived an anoxic brain injury at 14mos, while in the process of getting a new heart. Megan has made terrific progress, which you can see at http://www.babiesonline.com/babies/m/miraclemegan.

Although I believe Abbie is healed on the basis of what the Lord has said in His Word, He was gracious this week in sending two stories of what He has done for two other girls. I felt Him saying, “See..it DOES happen!”

Honestly, this has been a week when I have felt stretched to my very limit, and have clung to the fact that His grace is sufficient for me. If you would, please pray for wisdom for Ray and I as we reorganize our lives now that all the kids are in school. And, the other thing heavy on our hearts right now is Ray’s Uncle Chuck. He is awaiting open heart surgery after two recent heart attacks, but slipped into a coma yesterday at the Cleveland Clinic. He regained consciousness today, but they have to monitor him for a few days before even attempting the surgery. Please remember Chuck, his wife Jetta, son Dana, and Ray’s mom Sandy and his grandma and granddad in your prayers. It is difficult for us to be so far away at times like this.

“When we pray ‘Give us this day our daily bread’, we are in a measure shutting tomorrow out of our prayer…They pray best who pray for today’s needs, not for tomorrow’s which may render our prayers unnecessary and redundant by not existing at all!” — E.M. Bounds

Friday, 8/5/05

First, I want to apologize for how long it’s been since I’ve been able to post new pictures of Abbie. The computer I use to download images from my camera was functional for about 10 days before it crashed again, and I missed that window. Ray took my long-dead laptop to the computer doctor today, so hopefully I’ll be able to show you soon how well Abbie is doing.

We got to use a brand-new piece of equipment at PT on Tuesday. We have been waiting for months to get Abbie into the Litegait Walkable, and it finally arrived at the hospital last week. Abbie is not the child in the picture, but this is the exact set-up we used. We put the harness on her and then once we clipped her straps to the apparatus, we used the electric lift to raise her out of her chair to a standing position. She loved being upright without having to bear all of her weight. I got her left foot and her therapist, Lynette, got her right foot while Debbie helped with her head. We then turned on the treadmill and helped Abbie take steps! She did pretty well with her legs moving back, but we had to swing her legs around to get them forward again at first. After about ten steps it “clicked” with her, and her legs relaxed quite a bit, making it easier to move them forward again after she stepped. The standard first session on the Litegait is only three minutes, which is what we did. I was sad it ended so soon, but I didn’t yet know that I was going to see effects through the next day!

Every time we laid her on her back that night, up her leg would go. Each time she sat on her toilet, up her leg would go. Any time she had a moment when we weren’t doing something with her, she was practicing her steps. I saw the same thing the next day. She’s kept that up all week, although not with the same frequency.

We have another big praise from this week. On Tuesday we met with Abbie’s new case managers from the program she will be transitioning to because she no longer has a trach. I have been worried about this transition for months, ever since we started seriously discussing decannulation. We have been told that this new program does not authorize RN-level care, and since Debbie is an RN we were worried that we were going to lose her. We were also told to be prepared to have our nursing hours cut each month until we got down to zero. I was worried about that because with everyone in school now I wouldn’t have the help I need to take Abbie to appointments and therapies. About a week before this meeting, while praying about it, I finally came to the long over-due point of just giving it up to God and trusting fully in His provision, trusting that He would provide exactly what we need. On Tuesday He showed Himself yet again as the God of exceedingly abundantly.

At the end of the meeting Ray just asked directly what the transition means about keeping Debbie. The answer was, “Not only do we agree that Abbie needs to keep Debbie, but we think that you may need more nursing hours than you are currently getting.” WHAT?!? Yes, exactly what we’d prayed for and more. I don’t know that we need that many more nursing hours, but just knowing that we can keep Debbie lifted an enormous load from our shoulders!

I was reading a devotion yesterday and the Scripture reading was Matthew 18. I read in the amplified version, and verse 10 brought joy to my heart. It says, “Beware that you do not despise or feel scornful toward or think little of one of these little ones, for I tell you that in heaven their angels always are in the presence of and look upon the face of My Father Who is in heaven.” Abbie has an angel in heaven, standing right now in the presence of the Father! I then thought of all the little ones like Abbie, restrained in bodies that don’t work, living in a world that largely doesn’t understand..but to God they are so precious! They are never overlooked, in fact in His kingdom they have a very special place.
 Abbie’s vision is something we are still working hard on, and we covet your prayers and praise in that area. Her antibiotic is making her feel so much better, and one of the sweetest fruits of that is the abundance of smiles we’re getting from her. Again..hopefully soon I will be able to show you how beautiful she looks with her dimple!

Sunday, 7/31/05

There’s so much to write about I don’t know where to begin, or even how much to include in this update. It’s like God has transitioned me from a dial-up connection to DSL with Him this week. He has been speaking constantly and deeply, and it’s all been good!

But first, Abbie…I took her to see her pediatrician, Dr. L. on Saturday morning because she had started into the same trend of lower sats, lots of mucous when she coughed, low-grade fevers, and fussiness. We decided to put her on a 3-week course of Levofloxacin, the antibiotic she was on most recently. We debated whether to extend the course of the last one, but decided to wait and see. She got the first dose last night and is already so much more comfortable and relaxed. A much happier girl makes for a much happier mommy.

Going to see Dr. L. is always a treat for me, as strange as that sounds, because she has been, and remains such an encouragement to me. She had spoken to Dr. K., the ophthalmologist about our recent visit. She was very happy to hear that Abbie’s optical nerve, while a little atrophied, is intact and viable. We talked about Abbie’s lack of response and agreed that it doesn’t mean Abbie never has sight now and will not in the future. We also agreed that we should be stimulating Abbie as if she doesn’t have sight, but working with her vision as if she does. Dr. L. also shared another encouraging tidbit with me. Abbie had a contrast-dye study done on her stomach in June, by the same radiologist who read her CTs and MRI the week of her accident. When Dr. L. saw him after the recent test he was a little “puzzled” by Abbie’s responsiveness and ability to move her legs during the test. The pictures he saw last May caused him to say, understandably, that Abbie would not survive, but if she did she would remain vent-dependent and unresponsive. The fact that even during a short test he could see that Abbie is already doing so much more than most ever hoped for made me smile all weekend!

Ray and I had a great date night on Friday, and it gave me time just to be quiet and meditate. And, don’t you know..when you do that, God speaks. About a month before the accident the Lord said to me, “You are not loving your children with abandon..you are holding back a corner of your heart because you are scared something will happen to them. You need to trust Me.” It took me a little while to comply, and I agreed to “love with abandon and without fear” only days before the accident. Well, I have learned a lot about what “trust Me” means. It didn’t mean nothing bad would ever happen, it meant He would make a way and carry us through it. On Friday night He said, “Last year you knew nothing about trust, but you have learned. Now I’m telling you that you know nothing about rejoicing…and you are about to find out!” Oh, Praise God! That’s the kind of message I long to hear!

This morning our pastor, Dr. Duane McDaniel, gave an awesome message about spiritual warfare. I wish I could quote it verbatim here, but there was one point that really stood out to me because I learned something new. Pastor McDaniel was preaching about the armor of God found in Ephesians 6. The last one he talked about was the Sword of the Spirit, the only offensive weapon we have. Actually, the sword is the Word of God, but pastor went to the original language to delve deeper (which I love doing.) There are two words for “word”: “logos” is the general word of God and “rhema” is a specific word of God. The passage in Ephesians uses “rhema”…we are to fight the battle with the specific word of God. Yep, that means we’ve got to know some verses, we’ve got to read and study. We’ve got to be able to respond to attacks with “It is written”, just as Jesus did. That one piece of knowledge, that He has called us to use the rhema word of God as a weapon, has stoked my desire for study all the more.

We had a potluck at church today, and Abbie was a trooper. Huge blessings came from this for me. One of her little friends, Keanu, was holding up a little red elephant for her to see. She turned her head, and looked down directly at it several times. Keanu’s little sister, Abbie, was in her stroller next to Abbie’s chair, and when “Baby Abbie” started fussing, “Big Abbie” looked over and tried to reach for her. The reason for our potluck today was to pray in our sanctuary, which is currently under construction. As we gathered in the stripped out shell, looking up at framing and duct work all I could think was “This is just like Abbie – everything was stripped away, and something even better is coming..soon!” I have to admit to saying “Glory!!” as I looked up at the new air-conditioning system, since it’s a “new and improved” feature, and it made me wonder what new qualities we are going to see in Abbie.

Abbie’s vision has been apparent as we’ve been working more intensely with her this week. She is seeing. Finding new ways to do old things, like turning her portable DVD player on its side so that the screen can be very close to her face, have rejuvenated our efforts. Please just continue to lift her occipital lobe up to Jehovah Rapha, the God Who Heals. It’s the part of her brain that processes all the images her eyes send. Thank you for your continued faithfulness and never-ending encouragement!

Psalm 107:19-21 “Then they cry to the Lord in their trouble, and He delivers them out of their distresses. He sends forth His word and heals them and rescues them from the pit and destruction. Oh, that men would praise the Lord for His goodness and lovingkindness and His wonderful works to the children of men!”

Wednesday, 7/27/05

Time for a long overdue update…sometimes when I get delayed in writing, God just pours it into me in one big rush, which is what just happened..so I have to sit down and write before life delays me yet again.

We took Abbie to the opthalmalogist today, for the first time since the accident. I didn’t have high hopes for this appointment, because we have been working with her vision for so long, and know very well that she isn’t seeing normally. But, it was still painful to hear Dr. K. say that unfortunately he didn’t see a visual response. Her optic nerves and eyes are fine, it’s just the optical processing part of her brain that is not working. He did say that he puts a lot of stock in what parents say because they are with their kids all the time opposed to the short time he sees kids in his office. I feel like she does see sometimes, and other times she does not see at all. So, we are not giving up on her vision, this is just the point we are at today. The first thought that came to my head when he gave us his assessment was, “Well, Helen Keller changed the world…”

Of course, on the way to the car Abbie watched the lights in the ceiling go by, and then squinted as we went into sunlight…things she didn’t do for the doctor. I allowed myself five minutes to be sad, and realized during that time that I wasn’t crying because I fear Abbie will be blind, because I don’t. I was crying because of the comfort she could gain by seeing us well, and seeing her surroundings. I was crying because I was imagining what it must be like to want to speak and have the words come out garbled, want to move and have your limbs not respond properly, want to eat and not be able to use your tongue correctly..and then to be sufferering all of that in the dark. I was overwhelmed with how distant from us her vision impairment may make her feel.

Ray rescued me by taking me out to a wonderful and relaxing lunch, which gave us time to really talk out our feelings. On the way home, thinking about Abbie’s suffering, I was just overcome by the fact that my Heavenly Father know my pain intimately..He knows the torment of watching His Child suffer. I found comfort in that, but my heart also broke as I thought about the multitudes of people who turn away from the fact that Christ suffered, as God watched, and how that would make the pain even more profound.

I have prayed for over a year about when to write this next portion. I knew the time was nearing as I watched a precious friend lose one of his best friends suddenly, with absolutely no warning, this month. The agony on my friend’s face as he wondered where his buddy is now, because they didn’t really talk about Christ – that picture will be with me forever. I write this because I need to return the love we have received from so many of you, and because I would feel that same agony if you had followed Abbie’s story, even prayed for her, and yet never heard from me about Christ. I don’t know exactly who I am writing to, although there are some names on my heart, like J.K in Japan. I don’t want to tell you about traditions, religion, or rituals – -those always give folks a lot to fight about. I want to tell you about a person and describe a relationship.

You are a precious and totally unique person, created in the image of God Himself. Created to be perfect and be in perfect relationship with God. When Adam and Eve disobeyed God, sin entered the world – sin meaning that we miss the mark. We have all sinned, and in God’s eyes there are not really degrees of sin – a white lie takes us away from God in the same degree that murder does. It’s like being pregnant – either you are or you aren’t.

God is holy, and cannot coexist with sin – so that there is no way for us to be in relationship with Him. But, He loves you so much that He couldn’t stand the thought of spending eternity without you. He knew you could never measure up on your own, so He sent His son, Jesus, down to save you. Jesus sought only to do His Father’s will, which was to save you – he obeyed to the point of being beaten beyond recognition and nailed to a cross. He died on that cross, was buried, and on the third day he rose again, having conquered death. His sacrifice was given so that your sins could be forgiven, and your relationship restored. He has laid forgiveness and restoration on the table for you, but you have to pick it up and receive it. I know it doesn’t make sense, I know it sounds implausible…but it’s true.

If you were the only one on Earth, He still would’ve sent Jesus to die for you. And, He promises that when you accept His gift He makes you new from the inside out, sends a Helper to aid you in getting to know the Father and doing His will, and gives you eternal life with Him.

I didn’t pick up that gift and open it until I was 25 years old, and I think if you asked those who’ve known me a long time, the difference is obvious – God is true to His word. It’s not a physical gift, it’s a spiritual one, and you receive it by prayer…it’s a simple prayer, something like, “Dear God, I know that I have missed the mark, I know that I have sinned. I ask your forgiveness and I accept Jesus’ sacrifice in my place. I know that He died for me, and rose again. I want to be in relationship with you from now on.”

I promise that He will lead you gently, and that He is patient and kind as you seek to get to know Him. Heaven, Hell, and eternal life may sound like mythical phrases, but they are real…and I cannot go to my Father knowing that I may have allowed any of you to be separated from Him because I didn’t speak up. I always pray before I write an update (often quicky prayers, thrown up as I sit at the keyboard, I admit). I ask God, “What do you want me to tell them?” The answer is always, “Tell them I love them”..but it is spoken with a passion I cannot convey in words. If you have questions about any of this, please email me at varasix@aol.com or, if today is the day that you met Christ, please let me celebrate with you and pray for you..will you let me know?

As for the last week around our house…Friday night was the date night to end all date nights…Norwegian Cruise Lines just brought a new ship, The Pride of America, to Honolulu. Before their maiden Islands voyage, they donated the ship, staff and food to charities for a one-night benefit. One of Ray’s hospitals was among the charities blessed by NCL’s generosity. So, at 1pm on Friday we boarded with some of our best friends, and spent the entire day eating, visiting, eating some more and seeing Honolulu from a whole new vantage point.

It was the first time I have left Abbie and could not get back to her. As we pulled out of port I could physically feel a weight lift off my shoulders. We had our former youth pastor and his wife, an ER nurse, staying overnight (is that a dynamic duo or what?). Because it was a charity event rather than a normal cruise, we knew many people aboard, so it was one long party. We had a wonderful dinner, played darts, danced late into the night, and then Ray and I got to sleep in the same bed at the same time by ourselves (a true miracle!) “Fun” is too weak of a word to describe that cruise. I was completely blessed and refreshed!

We saw Abbie’s PT on Monday for the first time in 7 weeks. She wanted to assess Abbie to see how her muscles had responded to being in bed for so long. Lynette was very pleased, as was I. We talked through what exercises we need to do to help with her hips, and discovered that they were all already included in Abbie’s program..so we are back in the routine of doing the full program each day – to Abbie’s chagrin I might add. She had gotten used to rocking most of the day. She is talking to me quite a bit lately..I can’t make it out most of the time. It sounds a lot like “GG-nn-u-nnn—ff-ffggg”. But, she is definately trying to communicate more each day.

Last week I had just bathed Abbie and was brushing through her hair. It has been a source of heartache to see her sun-bleached hair turn brown – a marker of her “new life” that is spent indoors. As I brushed her wet hair though, there were abundant curls – large and beautiful ones. They are her “new hair” that has grown in since in the accident. God gently whispered, “I am replacing that which you miss with something beautiful..trust me!” And I do.

Saturday, 7/16/05

Just a quick update to let you know we have rebounded from our down days! I just threw myself into God’s Word intensely this week, and like always, it rescued me from despair. I realized it was really sinking in when Kyle told me on Thursday that he didn’t want to go to water polo practice because he was tired. My first impulse was to say, “Verily, verily I say unto you, thou shalt proceed unto thy practice with a cheerful countenance..”

We are learning that Abbie’s muscle tone is usually not involuntary now…it has become her way of giving expression to her stubborn streak. She is perfectly relaxed until you want her to do something that she does not want to do. In fact, today I found myself speaking to her as I would any other defiant child of mine. I was trying to fit her feet into her brand-new orthotics. She is perfectly capable of relaxing her feet and tendons to allow for a nice fit, but was not interested in doing that for me today. I finally said, in my best stern-mommy voice, “Abbie, you need to obey me right now and relax your feet.” She complied, and I slipped her feet right into her “boots”.

She is responding very well to her current antibiotic, which will be finished on Monday. The best part is that she is sleeping deeply all night, without any coughing to disturb her sleep (and mine). She has also begun to sleep in until seven or so in the morning. I feel like we may actually have a somewhat normal life returning to us!

I continue to study the Bible hard, and am learning new things each day. I am convinced I will be able to say that until the day I die. The more I study the more I am convicted deep in my soul that her healing has already been provided, and am thus more bold in standing on that. Tonight I was encouraging Abbie to stand on it as well, literally. I had her boots on her, which were custom made from casts of her legs and feet. They also have soles on them for standing. She was enjoying standing up and feeling her own weight. I told her to thank Jesus for healing her, at which she straightened up and stood tall. I then held her on my lap, and told her that if she wanted to stand up again she needed to show me some steps. At that she lifted her right leg a bit. I said, “Aw, come on Abbie, that was a whimpy one..you can do better.” She immediately lifted her right leg high, so up we went, back onto her feet. She tried to take a step with her right foot, but the weight of her boot made it a little tricky.

God can do in one second more than man can do in years..so while Abbie may look like she needs months of therapy before taking steps on her own, I am convinced she will be walking across the room very soon. We are understanding more each day the precious value of what Christ suffered in the Praetorium, before He carried His cross to Calvary…by the stripes He suffered there, Abbie is healed.

Wednesday, 7/13/05

Yesterday was Crystal’s 18th birthday, my dad’s XX birthday, and my nephew Conner’s 3rd birthday..what a day! We decided to get Crystal something special since it was her eighteenth birthday, but she’s not much into pearls. So, we got her a moped instead! After I rode it around the block, Ray said, “I can’t remember the last time I saw you smile like that!” Crystal seems to thoroughly enjoy it as well, and it will make parking at school so much easier….well, anything’s easier than a Suburban!

I’m always a little torn about what to share when I have a rough day. I don’t want to be perceived as doubting the outcome when I have a down day…but, I guess it doesn’t make me a doubter, it just makes me human. Yesterday was very, very difficult. I read part of a book about the Bush family, where for the first time I learned details about the death of Robin Bush at the age of 3. I knew that Barbara and George had lost a daughter to leukemia, but yesterday I read about Barbara “brushing her hair one last time” just after Robin died in her arms. This shattered me because it was so close to home. The sweetest time I had in the PICU was when they let me wash Abbie’s hair and put her pretties in it. I just ached for Abbie the way she used to be. It didn’t help that when I later took Kyle to a sports store there were little girls in dresses, picking out training wheel bikes with streamers on the handles.

Late in the afternoon, my precious friend Katie Cheshire sent me the third installment of a devotion by Nancy Campbell titled “The Terrible Wilderness”. The first verse listed was Song of Solomon 8:5. I am not that familiar with Song of Solomon, because it’s not one usually studied in Sunday School, if you know what I mean. But, 8:5 says, “Who is this who comes up from the wilderness leaning on her beloved?” “ME!!” I answered. We are still on our way up, out of the wilderness, but this journey has been very hard, and I am not going to emerge singing, dancing, and doing flips (that will be at the celebration party later on). I am going to come out of this valley spent, scarred, and exhausted, leaning totally on my Beloved Christ. Rest, and restoration will come, but for now I am comforted by the picture in the verse, knowing that I am leaning on everlasting arms.

It turned out Ray was also having a hard day, missing his little girl. We talked at length about how she used to be, what we missed about her, and what we missed about life in general, like having laughter in the house. Sometimes it is good just to be honest and sad together. After we prayed over Abbie, Ray went to bed and I climbed up next to her to read some Scripture to her. As I began she turned her head toward me and then directed her eyes until she was looking right at me. I started weeping again, but for joy this time.

Her vision has been heavy on my heart lately, and I felt as if God was saying, “I hear your cries!” But , He also said, “This is why you are so sad. You know very well what you lost, but you cannot imagine the joy to come. This one little thing – her turning her eyes toward you, has caused you to weep deeply with joy. You cannot imagine what is to come…your joy will be boundless!”

I was comforted, but I’ll admit, I was still sad when I laid down to sleep. The verse “Jesus wept” came to me. It is my kids’ favorite memory verse (2 words!!). This verse, in John 11, is in the midst of the story about Lazarus, who at the time is laying dead in a tomb. His sisters, Mary and Martha are overcome with grief and disappointment. Mary even says, “If you had been here, my brother would not have died.” Now, Jesus knows he is going to raise Lazarus, and in fact they are only moments away from seeing him again, but that knowledge doesn’t make Jesus react to their grief in an abrupt or impatient manner. No, seeing their heartache, he weeps, too. As “Jesus wept”came to me boldly I knew I could just fall before him and cry, and I felt Him join me. His heart breaks because mine does, even though we both know that He’s already healed her. Sometimes I feel that only by unwavering faith will I see Abbie’s healing come, but last night Jesus made room for my tears, too.

This morning I was clinging to the vision of leaning on Him, so I wanted to read more about the Song of Solomon verse. I read 8:6-7 in the amplified version which says, “Set me like a seal upon your heart, like a seal upon your arm, for love is as strong as death…Many waters cannot quench love, neither can floods drown it.” I often whisper in Abbie’s ear “Love always wins!” In these verses, God said to me, “YES! It does…and nothing can drown love!”

As for Abbie, she continues to get better. Her sats are wonderful (97-100), and her muscles are getting looser each day. As I inclined her bed last night she got a huge grin on her face, and looked just like her brothers when they “ride”on her bed – like, “Wow! I have a fun bed!” Her trach stoma is getting quite small again after widening a little due to the suctioning while she was sick. Most days, I would say that she is a lot stronger than her mommy

Sunday, 7/10/05

Yet another surprise from Abbie tonight. I was doing a leg exercise called leg unlocking with her that was part of her normal program before she got sick. I hadn’t even attempted this exercise in over a month, because it requires pointing her toe, bending her knee and then moving her through a range of motion that looks like a frog leg. I was so pleased to have her complete the entire motion – she hasn’t relaxed her legs that much in weeks. But, at about the fourth repetition I realized she was helping me. So, I began just supporting her leg and letting her move it – and she would!! Sometimes it would be very slow, but she’d do it. And, the curious thing was, as soon as one leg was done, the other leg would begin quivering, getting ready for its turn. So, she knew the pattern, she knew what was coming, and she was trying so hard to do it all herself.

After after ten minutes of doing the exercise, she was looking drowsy and worn out, so I thought I should give her a break. Right. As soon as I left her alone, her left leg started shaking as she attempted to point her toe and lift her leg. I called Ray in to the room, and we both just giggled with happiness. He told her how proud he was of her, calling her “the strongest girl in the world.” So, of course, she redoubled her efforts. Her muscle impulses are getting more and more coordinated, and she certainly knows what she wants to do…Abbie’s freedom from her bed and her chair is on its way!

Watching her do this tonight was like watching life trickle back into long-dry streams. While Abbie is not a quadriplegic, because her spinal cord is intact, she is currently a “quadraparegic” because she doesn’t have the use of her limbs due to her brain injury. I thought of Christopher Reeve, and how incredible it would’ve been to see him move his legs like Abbie did tonight. I then realized it’s no less of a miracle for Abbie. I said to Ray, “Although we are absolutely convinced that Abbie will be totally restored, steps like this are still so overwhelmingly sweet!”

It’s like God has given us a package with many, many layers of wrapping paper. We’ve chosen to believe that there is a miracle inside that package, and are anxious to get there. He’s decided to ensure we enjoy each layer instead of ripping off all the paper at once, and the beauty we uncovered today took our breath away!

Abbie was off oxygen all day, and I am not planning to put it on her tonight. She was relatively calm today as long as she was being rocked, played with, or paid attention to. I am even setting an alarm clock tonight for the first time in weeks, since I am actually anticipating getting some sleep tonight. Woo-hoo..now, THAT is progress!!

Isaiah 58:8

“Then your light will break out like the dawn,
 And your recovery will speedily spring forth…”

Friday, 7/9/05

A wild week around our house, with ups and downs and special days. Yesterday marked one year since we brought Abbie home from the hospital after her accident. In some ways we are not nearly as far along as I’d hoped we would be, but as I was started to become glum about that, God tapped on my shoulder and said, “Ahem, I believe that when you brought her home last year she had a tracheostomy tube in her throat, right? And, if I recall, she was not yet saying any words, using her toilet, eating any food, or answering questions. Her muscles were so tight that you couldn’t bend her knees or elbows, have you forgotten that? You had not yet seen her dimple or her smile again, and you certainly hadn’t heard her laugh.” So, actually, we do have many steps to celebrate, and look forward to what the coming year will bring!

God has been so gracious to me when I ‘ve cried out to Him this week. On Thursday I was showing Abbie some flashcards and she just wasn’t tracking. I finally stopped and starting crying, “God, you know I fully believe you’ve already healed Abbie, but you also know how much it hurts my heart when I work with her and it looks like she’s not seeing. Please, let me see some progress with her vision!”

Four hours later I showed those same flashcards to her, and she tracked better than she ever has. It’s still not the full-range and sometimes she doesn’t play along, but I was amazed! That afternoon, bolstered by such quickly-answered prayed, I decided to do something we haven’t done in 5 weeks..try to feed Abbie.” As she was beginning to get sick, we were really down to just tasting foods because swallowing any volume was hard with her cold. I got same baby food bananas for her to taste, but she ATE them! She grumbled at me for about ten minutes, but I just told her, “No, we are going to do this.” Finally she settled down, and ate for 25 minutes. Now, that amount of time doesn’t mean she ate a ton, but she did take in a measurable volume and just the fact that she was willing to swallow for half an hour was thrilling! I fed her again that evening, and she ate about the same amount..polishing off the entire rectangular container.

So, on Friday, I thought, “Great! Let’s start the day off with bananas for breakfast. But, as soon as had her up and ready to eat I noticed that she had a fever again, and that the left side of her face was swollen. Within the hour she went from being off oxygen to needing two liters. I phoned her ENT, who we had seen on Tuesday because one of her ear tubes came out. At that time she’d taken a sputum sample so we could see if the MRSA in her trachea was gone. Well, no, it wasn’t…so we had a long discussion about what to do.

The best plan was to talk to an infectious disease doctor to figure out how to attack it. The final phone call of this hectic day was from Dr. L, her pediatrician. She’d spoken to an infectious disease specialist who said that we need to stop treating the MRSA. It is an organism that is common in open tracheas, and that by continuing to treat it we may only accomplish making certain drugs ineffective in Abbie because of overuse. Dr. L. surmised that she has a sinus infection, and we began a new, broad-spectrum antibiotic at 9pm last night. That single dose allowed Abbie to sleep through the night for the first time in weeks, and today she is off oxygen with sats higher than they’ve been since she got sick! We may be finally emerging from this tunnel of illness.

I have been reading the first chapters of Deuteronomy over and over again this week. I have felt the nudging to do that for a while, but finally complied on Wednesday. Wow!! Those chapters are all about the end of the journey!! There was a phrase that stuck out boldy, and if you’ve read about our lap around the peds ward, symbolic of our lap around the desert, almost being complete, you’ll know why…Deuteronomy 2:2-3 says “And the Lord spoke to me saying, ‘You have circled this mountain long enough. Now turn north,” Turn north!!! We only needed to walk about 50 feet north in the hospital for our lap to be complete, and I know that God is telling me our circles in the hill country are over!! The Israelites still had 2 years of walking and battling to do before they crossed the Jordan, but they were headed in the right direction, and that is how I feel! The journey may not end tomorrow, but we are headed in a new and exciting direction.

I was holding on to another portion of the second chapter as Abbie became ill yesterday. In 2:13 the Lord instructs the Israelites to cross over the Zered valley (NIV)..I only picked that up the third time I read it, and the Lord said to me, “The last valley before the Promised Land..note that it even starts with a Z..the last valley.” So, although I was worried as Abbie’s condition worsened, I was smiling inside knowing that this is our Zered Valley.

I also smiled today when I read an email that said, “We have now moved Abbie’s name from our church’s prayer list to our church’s praise list!” Praise God! I realized one reason why that is so powerful…anyone can pray, even if they know very little of God, but to praise Him you have to know Him. To praise Him requires a recognition and a relationship. Your praises are rolling back the curtains of Heaven and I am watching the manifestation of Abbie’s healing descend. God bless you!!

Monday, 7/4/05

Happy Independence Day!! We celebrated this day of freedom’s anniversary with a few firecrackers at home and watching the New York fireworks on TV. It was nice, though, not to lose the meaning of the day in the hoopla that can accompany it. How fortunate we are, and what a price has been, and is being paid!

I haven’t posted in the past few days because I have been doing the night shift with Abbie, and trying to catch up on sleep during the day. We brought her home from the hospital knowing that she wasn’t better yet, but feeling we could manage it at home. It has been a tiring juggling act for Ray and I, as we have truly become ships passing in the night, or very groggily in the morning. He is carrying the entire load besides Abbie, making sure each child is where he’s supposed to be, with the right equipment, and then feeding the hungry troops in the evening. But, yesterday Abbie turned the corner!

We are no longer fighting fevers or suctioning constantly. Her lungs are clear for the first time in several weeks, and she is able to sleep deeply. Yesterday she was doing so well that I turned down her oxygen flow down to 1.5 liters. At 7 this morning I turned it down to 1, at 8am we went to .5, and at 10am she came off oxygen! She’s done well all day, even holding her sats up while she’s sleeping

After more than a year, I feel prompted to share something that the Lord spoke to me very early on in this journey. On May 17th of last year, as Abbie lay virtually comatose in the PICU, He told me, “She is already healed..I am just working My will.” I have learned much about our Heavenly Father as we’ve walked through this together, particularly in the last few weeks. I believe that the way we are going to see Abbie’s healing manifested is to praise Him..it’s time for us to transition from prayforAbby.com to praiseforAbbie.com. So, to help her healing break forth quickly would you just praise Him every chance you get? Of course, you can praise Him for what He’s done for Abbie, but also for what He’s done for you, for your loved ones…for Who He is! The question is not “if” Abbie will be healed, it’s a matter of when we are going to see her walk before the Lord in the land of the living.

Which, by the way she is working on…we haven’t done any therapy in weeks, but in the midst of intense prayer this evening, I felt led to stand her up on her feet and tell her to walk. She enjoyed being upright, and then…when I told her to take a step her left quadricep began to quiver, and then her foot slid forward! She then bent her right knee and attempted to move her foot, but ended up sliding it forward as well. I had her do this several times to ensure I wasn’t just imagining it. Abbie, too, knows she is healed, and is determined to walk in that promise. After her steps, I put her up in bed to rest. She spent the next ten minutes working on sitting up..it’s almost like watching someone try to do one more sit-up after they’ve reached the point of muscle exhaustion. She gets her head and shoulders up and then strains every part of her body trying to get the rest of the way up. So, yet again, we are seeing her make gains in the absence of every intervention and therapy we’ve used this past year.

Psalm 41:3

The Lord will strengthen him upon the bed of languishing.

Wednesday, 6/29/05

Prayer changes everything!!

We are home, after spending only 24 hours in the hospital. Although she sounded bad and had to work really hard to breathe, Abbie’s chest Xray came back clear, which is huge praise! We think it may just be something viral, or that the last round of antibiotics didn’t quite cover what she had, and the new round has now kicked in. But, what I know is that your prayers for her through the night gave her the first good rest she has had in many days. And, thanks to my angel-nurse, Sarah, I got some sleep as well.

We still have her on 2 liters of oxygen, which is very high for her, but she is much, much more comfortable with heart rates down in normal ranges now. She still has a fever, but we are able to control it with Tylenol now, so we are headed in the right direction.
 One big blessing of this short stay is that she was able to have PT and OT in her hospital room. We have not gone to any therapy for three weeks now, and have not been able to see her therapists since we found out her hips were subluxated. Rita (PT) and Arlene (OT) came together, which is a luxury, and spent quite a bit of time with Abbie. I was curious to hear their assessment since Abbie’s been in bed for over two weeks.

“Amazed” was the best summation. Abbie was incredibly loose, and helped when prompted. She was in such bliss, it seemed as if she was getting a spa treatment rather than therapy. I am so encouraged by seeing yet again, that when we can do nothing, God is doing everything and her healing is continuing even as she lays in bed.

We were right next door to the room we were in a couple weeks ago, so you know I have a story about the view. We got to the room around 5 pm and I noticed a rainbow out the window, but didn’t get a chance to go pull the curtain fully open until 6:30. That very same rainbow was still there…it had remained the whole time, which was unbelievable to me since they are normally so transient – disappearing as quickly as they appear. I was smiling about that when I noticed that not only was it a complete rainbow, but it was a double rainbow! The words “double portion” came to me, and I received the assurance that Abbie is going to receive a double portion of blessing for all she has had to endure! These window stories are almost enough to make me like being in the hospital…almost.

One last thing – I don’t have all the details, but a woman posted in the guest book about a little boy in Ohio, Mitch, who recently drowned. His family has been told that he has a 10% chance of survival…but we all know better, don’t we? Please, please pray fervently for Mitch and his family – as I said in the beginning of this update, prayer changes everything!

Tuesday, 6/28/05, 11 am

A quick post to let you know that we will be heading to the ER shortly. Abbie is utterly exhausted, not having slept longer than one hour straight in the last three days. She is working so hard to breathe, even with the increased amount of oxygen we are giving her. Her lungs sound much worse than yesterday, so although we do not want to take her to the hospital, because I am afraid the only extra measure they can provide is intubation, Abbie needs to rest and recover. Please just pray for her comfort and strength. She is so brave and strong, but so tired. I will try to to keep you posted as best I can from the hospital.

I have to add, though, that God always balances out challenges with blessings. I have a new nephew!!! As-yet-unnamed Little Boy Clark was born to my sister Tara, and her husband, Nathaniel yesterday evening in Seattle. A big healthy, eight pound brother for Cooper!! God’s timing is perfect…their moving truck is arriving today from El Paso, so this DEFINITELY gets Tara off the hook as far a moving stuff in! They have so much going on right now, would you please pray that all with go smoothly and they will have time to relish these first few days with “Please Name Him Anything But Gus” Clark!

Sunday, 6/26/05

Abbie has been off oxygen for a day and a half now! We have started giving her nebulizer treatments of albuterol to help her clear her lungs more easily, and it does seem to be making her more comfortable. She is sleeping much better at night, which help everyone! Her pediatrician was pleased with Abbie’s progress at her appointment on Friday, which was encouraging. We will be seeing her GI doctor this week to work out a new feeding plan as we try to transition off of continuous feedings.

As I was working with her last night she kept pulling her head forward off her pillow and trying with all her might to sit up. I poked her tummy muscles and reminded her that she needed to use them to help her sit up, so she took a break and then kept trying some more. I find myself now never walking away from her bed without putting the railing up, because she is going to surprise us one day soon.

Her muscle tone is much improved – thank you for all the prayers! Debbie said last night, “We did passive range of motion exercises and she did beautifully,” and then she added with a twinkle in her eye, “we also did assisted range of motion…” That had to sink in for a minute before I understood what she meant. “Assisted” obviously meant that Abbie was helping! Debbie said that she would tell Abbie what to do, in girl-friendly terms, like “ballerina arms”, and Abbie would move her body with help from Debbie! Debbie also commented on how different Abbie’s face is looking lately. I just reinstalled my digital photo program after a crash, so hopefully I will post some new pics soon. I have been delaying because I really didn’t want to post pictures of Abbie feeling under the weather.

Yesterday we saw one more way how God’s grace has filled in the cracks in our family caused by Abbie’s accident. To say that I homeschooled Chase last year is a stretch, actually, it was more like he independently schooled himself. We have been so blessed to have him accepted at a wonderful private high school for the coming year, and enrolled him in summer school to ease the transition. He had already taken a math placement test, the results of which gave him credit for two semesters of Algebra, which is exactly what he studied at home this year. We thought that English would be the best choice for summer since I felt it was his weakest subject. It turns out that his summer school teacher is the grandmother of one of the twins’ baseball teammates. After the game yesterday we talked for a long while, and she told us that she is going to recommend that Chase be placed in honors English for 9th grade. I don’t say this to brag about Chase, although we are very proud of him. I spent most of this past school year gnashing my teeth and feeling very inadequate because of all the things I couldn’t do with him, and the studies that we didn’t quite get to together. Once again, the Lord has provided more than we could’ve asked, in ways we couldn’t have imagined last summer. His teacher said that the first thing that struck her about Chase was his maturity..Ray and I both smiled silently for a moment before we explained to her the price at which that maturity has blossomed. The painful seeds planted last May continue to bear some very sweet fruit!

Thursday, 6/23/05

Abbie continues to get stronger, and was able to spend most of the day off of oxygen. She is sleeping very peacefully now, at almost midnight, and holding her sats up just fine without help! We thank God for bringing her back to health so quickly. We have a follow-up with her pediatrician tomorrow, so please just pray all would go smoothly and we would get a good report.

What has been amazing this week, though, is that as Abbie recovers from this recent infection, God has been at work healing her injury. The stroke effects on her face are now gone with the exception of a lazy eye blink on her left side. Her mouth looks wonderful, and for the first time I can see cheekbones, even on her left side! Her face is looking more and more normal each day. And, Ray and I both have both seen a big change in her eyes this week. Her pupils have been very dilated, which is somewhat normal for our family, but was also an indication of her vision impairment. Yesterday I noticed how much smaller her pupils had become and how much more she was looking around and looking at people, and Ray said he’d started noticing it that day, too!

I haven’t been working with her right leg too much until we see her orthopedic surgeon at Shriner’s to figure out what to do with her hip, but today her left leg was more flexible than it has ever been – even though she’s been in bed for almost two weeks! Her muscle tone is only high now if she is upset about the normal things, like wanting to use the potty or wanting to be rocked.

One theme in my life is that I always end up becoming what I laugh at. The best example happened when Ray and I were Army captains stationed in Alaska, both working for the same lieutentant colonel, Gordy Lewis. His wife homeschooled their six children, and I could not fathom why. I worried about her sanity and the poor sheltered life those children were leading. Well, a few years, a lot of growth and many prayers later there I was…a homeschooling mom of five. If I ever meet the Proverbs 31 woman I am going to purposefully double over in a side-splitting howl of laughter and hope it works.

I share all that to let you know that the “laugh at your own risk” experience happened again yesterday, and the results were very powerful. There is a woman, Carol, in our church who is a Healing Touch practitioner. Abbie had one session of this while in the hospital last fall. The volunteer came in and basically ran her hands just above Abbie’s body for twenty minutes or so. I didn’t expect much of it, but at the end the woman (who knew nothing of Abbie’s injury) said, “The only problem spot I sense is right at the back of her head.” That surprised me since that was the location of the occipital lobe of Abbie’s brain, which has sustained a major injury. I didn’t think much about again it until last Sunday when Carol called wanting to come over and give Abbie a Healing Touch session. I put her off because Abbie wasn’t feeling well, and did so again on Monday and Tuesday. On Wednesday she just showed up! I was rocking Abbie, so, like the past fall, I thought, “What could be the harm?”, but didn’t really expect any benefit.

I just looked at Abbie as Carol began to move her hands around, trying to calm her as she intermittently fussed. Once she settled down, I closed my eyes to take a rest. I began to feel heaviness pressing against my head. I thought I was just over-tired so I opened my eyes to get my bearings and look at Abbie. As I looked into the beautiful eyes that were looking right up at mine, the Lord began to speak to me. He said, “I am healing you of that image you endured on the pool deck when Abbie was staring up into nothing. Look into her eyes now…she is here. And, I am healing her of the panic and desperation she felt in the water. She couldn’t find you then, but she sees you now, and feels herself safe in your arms. I am healing you of things you have never even felt the full weight of this past year, because I carried you through them…the first time you saw Abbie in the PICU, the waves of realization of what you had lost..all of that – you are healed.”

I just closed my eyes as silent tears streamed down my face. When Carol finished I could not say anything except, “You have brought some very profound healing to me.” She left me quietly sitting in holy silence, knowing that, on the inside, everything was different now, for both Abbie and I.

“Call unto Me, and I will answer you with great and unsearchable things which you do not know.” Jeremiah 33:3

Tuesday, 6/21/05

Abbie is feeling better. She is still limited to clear liquids, but I have been able to add two of her most important supplements to the Pedialyte with no complaint from her. So, I think we will start giving her a little bit of formula later today. We are only having to suction her rarely now, and her chest is sounding much better. Abbie is still on continuous oxygen, but we are being cautious about that just to make it easier for her body to heal.

Fortunately, Ray had planned to take this week off to catch up on house projects, like the dreaded garage. It has been great to have him around to help keep the other kids occupied or out of the house so that we can keep it quiet for Miss Abbie. She is much too nosey to be able to ignore voices going in and out of her room.

In the dark of the night I am learning much, but honestly I am too tired right now to write sensibly about it. Please, just know that your prayers and support minister not only spiritually but physically to us as well.


It was a trying weekend for our family. We now have much of the equipment back that we had been rid of for months. Abbie needed oxygen on Friday night for the first time since last fall. She needed it on and off on Saturday, but was on it continuously on Sunday. So, the oxygen concentrator is humming away as I type…boy, there’s a sound I surely didn’t miss. We also have her feeding pump back. She is on continuous feedings now so that we can give her tummy a break by keeping just a little bit in it all the time rather than filling it all the way up five times a day. Sunday we had to switch her to just clear liquids because her formula was causing her so much pain.

We did visit the orthopedic surgeon on Saturday morning because of the hip dislocation that was found incidentally during Abbie’s tummy xrays last week (Romans 8:28 again!) I spent most of Friday night trying to prepare myself for what he might say. I envisioned Abbie being in a double-leg cast most of the summer, and mentally rearranged our life to accommodate that. But, that’s not the news we got on Saturday. Dr. D. felt that her hip is not dislocated, but rather in subluxation…meaning that it wasn’t a traumatic injury and that it is not all the way out of the socket. He said that what is happening is that Abbie’s muscle tone is gradually tugging on her hip, trying to pull it out of the socket. Her tone has been incredibly high since she got sick, and so his analysis made a lot of sense. He thinks that our main focus needs to be getting her well again and then dealing with any residual muscle tone. No surgery, no casting…hallelujah!!

So, that is our major prayer request: please pray for Abbie’s comfort and for her muscle tone to decrease. Her heart rate is soaring to 200 bpm several times a day as she shakes in pain. You can imagine how this breaks our hearts. She has only been able to sleep for 30-40 minutes at a stretch since Friday, so she is absolutely exhausted, and Ray and I are wearing a little thin as well. Please just pray that God would heal whatever is causing her such pain.

I have to tell you though, that in the midst of all this, she is her same feisty little self. She is still demanding to be put on the potty, even with tubes, wires, and oxygen mask. She scolded both Debbie and I today for not fast-forwarding the “scary shark part” in “Finding Nemo, and she has been very bossy about wanting to be rocked.

I’m typing this at 3:30 am, and as I finish peace is flooding in because I know you will pray. That always means so much to us, but especially at times like this when we are so weary. Thank you for your faithfulness that allows us so much comfort!

Friday, 6/16/05

Part I:

It has been so long since I’ve been able to post update, and so many wonderful things have happened in the interim. I don’t want to overwhelm you with a novel, but I also don’t want to neglect sharing how gracious God has been to us.

Today is Ray’s birthday, and we were blessed to have the most enjoyable family dinner that I can recall. There was lots of laughter, plenty of good food, and unrestrained giggles as the waiter induced the entire room to join him in singing a bad opera version of “Happy Birthday” to “Roy”. Then, on the way out of the restaurant I rounded a corner and almost ran into a woman who stopped in her tracks and said, “I know you.” Even though my memory can be untrustworthy at times, I was pretty certain that we’d never met. I just said, “I’m Tiffany..” Her eyes widened and she said, “You’re Abbie’s mom! I’ve been praying for her since the day after her accident!” I rejoiced in being recognized as Abbie’s mom – what a precious gift! And to meet a woman like Emily, who has been so faithful in lifting Abbie before the throne of God, was like a huge gust of wind in my sails. It astounds me still that there are so many who are walking with us, patiently and expectantly.

To catch up properly I have to go back in time a couple weeks. Sunday, 6/6 was a daylong session of God speaking into my life, especially about attitude. That morning we had a guest speaker deliver the message at church. He used Scripture that I had studied intently while preparing for my Women’s Luncheon talk a couple weeks earlier..Joshua chapter 6. He focused in on the very verse that had stood out to me, Joshua 6: 10 “But Joshua commanded the people, saying, “You shall not shout nor let your voice be heard, nor let a word proceed out of your mouth, until the day I tell you ‘Shout!’ Then shall you shout!”

I never had noticed before that while circling Jericho those seven days the Israelites were commanded to be silent. It wasn’t because it was a stealth mission. They went in broad daylight, and the priests were blowing trumpets. I can picture the ridicule raining down from the top of the wall as the children of God silently walked in faith. They were not to respond. More importantly, they were not to give voice to the thoughts bubbling up as they walked…”This is crazy”, “Like walking in circles is going to bring down this huge wall!”, “I’m hot, dirty, and tired of being mocked..”. Keeping their mouths closed prevented these thoughts from being spoken into reality. Silence prevented negative thoughts from invading the group and becoming a negative attitude and low morale. I distilled this verse down into “Zip it and keep walking.” I’m sure that’s not in any translation thus produced, but it’s what God spoke to me.

Ray and I attended a banquet that evening honoring twelve high school seniors who are outstanding athletes, and as became obvious during the program, exceptional people as well. As we were walking to our seats I noticed a man in a wheelchair with a portable ventilator, and wondered if perhaps he was a relative of one of the honorees. It turned out he was one of four “old-timer” honorees – men who had contributed to Hawaii athletics.

Charlie Wedemeyer was a stellar athlete, but was diagnosed with ALS (Lou Gherig’s disease), which explained his condition. What was unbelievable, however, was the date of his diagnosis – 1977. Charlie has been living with a disease for 28 years that normally takes the lives of people in three years or less. I was busy marveling at that when Charlie and his wife Lucy took the stage. Since Charlie can no longer vocalize, he communicates through Lucy. It was then that I learned the real lesson of that evening. Lucy’s face absolutely radiated with joy, and she joked with Charlie as any long-married spouse would. I know that their life is complicated and difficult, but they have chosen to walk through it with JOY (capital letter joy!) that is so abundant it overflows to all those around them. I saw in them the attitude and the qualities that I want to grow in as I walk the path God has chosen for us.

“Attitude” was the theme of the guest speaker’s address. Norm Chow, former offensive coordinator for USC among other things, gave us a nugget of wisdom that I passed on to my kids the very next day. He had us assign numeric values to the letters in the word “attitude” based on their positions in the alphabet, like A=1, T=20, etc. When you add the numbers up they equal 100. No coincidence. 100% of what we do is affected by, and sometimes dependent on our attitude.

The next day Abbie had her first full-length SCENAR treatment, with a nurse named Luci. The session lasted almost two hours, with Abbie sleeping for a good portion of it. At the end of it, her hands were completely relaxed. Normally they are somewhat fisted, not as tightly as they used to be, but definitely not open and relaxed. Abbie also likes to flex her wrist so that her hands pull up, but after the treatment her wrists were also relaxed and in a nice, neutral position. I was very excited by this change, but was also curious to see if it would last once Abbie woke up. It did! She remained relaxed all day and into the night. She was also moving her head around much more and was more interested in what was going on around her.

We had Luci come back for a second session on Wednesday. Abbie had just eaten so we weren’t able to put her on her tummy like we had on Monday. Since we weren’t able to treat her spine the results weren’t as dramatic, but it still relaxed her quite a bit. Luci was heading out of town for three weeks on Friday, and I didn’t want to delay further treatments that long. So, while she was at our house she called Dallas, TX and helped Debbie (Abbie’s nurse who is now really her hanai-grandma) and I each purchase a unit and sign up for training. We are very fortunate that the physician who is pioneering this technology in the US is coming to Honolulu to hold a training seminar in August. The great thing is, though, that I can’t hurt Abbie with the Biomodulator, as the device is called, so I can go ahead and treat her using the patterns Luci taught me even before I receive the in-depth training.

As the weekend arrived I was looking forward to receiving the device on Monday, but soon Abbie’s declining health pushed that to the back of my mind, and takes us to Part II of this update.

Part II

Abbie had been vomiting intermittently since Sunday, 6/6, which is a little odd given that she had a Nissen fundoplication surgery (wrapping part of the stomach around the esophagus to prevent chronic reflux). On Friday, she began to vomit after almost every feeding and began to run a low grade fever. By Sunday afternoon (6/13) she was coughing out green secretions and I began to grow more concerned. As evening neared I realized that since we no longer have a pulse-ox machine at home I wouldn’t be able to monitor her well through the night. I also recalled that when Abbie got a respiratory infection back in September she went from “sort of sick” to being transported by ambulance on a high rate of oxygen in matter of just three hours. So, at 8pm I reluctantly loaded her in the van for the trip to the ER. We had packed all the things we’d need for a hospital stay “just in case”, but I was really thinking they may just give her some antibiotics and send us home.

As the lab tests to confirm the simple explanations like a urinary tract infection kept coming back negative, the scope of what we had to consider broadened. Around 11pm the ER physician said that we needed to think about meningitis, but the only way to rule it out was a spinal tap. Before we could do this on Abbie, she needed to have a CT scan of her brain to see if there was pressure building in her head, since spinal taps done on patients with excess fluid in their heads can have very bad outcomes. My heart stopped. We hadn’t done a CT on Abbie since the week of her accident, and I had opposed any further scans after that, saying “She is going to do what she is going to do, the pictures can’t tell the story.” Truth is, I was scared – I didn’t want to see pictures that I knew were not going to be normal. God whispered gently, “Do you trust me? Trust me now.” That calmed me, but I also really wanted Ray there when we looked at those films, so Crystal headed home to tag off with him.

They took us to radiology before Ray arrived, and what happened in that room negated anything the test would show. As they lifted Abbie onto the machine and put her head in the brace to hold it still, she looked intently for me until she found me. During the test I had to hold her head and reassure her as she began to cry with fear at the loud noise. In other words, she responded much as a normal three-year-old would. It was just the booster shot I would need to face that light box with the pictures of Abbie’s brain.

The doctor waited until Ray was there to really talk to us about the scan. He said that they wouldn’t be doing the spinal tap because there was fluid in her brain and the radiologist couldn’t determine if it was only because of the brain atrophy. Ugh! I hated those two words “brain atrophy.” But, that is exactly what the CT showed. There are large areas of fluid in Abbie’s brain where grey matter used to be, and that’s just the difficult fact. But, as I told the women I spoke to recently, “Facts don’t always mean truth!” The truth is that God has promised healing for His children, and that is what we believe despite the pictures. Also, while there is fluid, there is also brain left! And, Dr. G. told us what we already knew to be true, you can never look at a picture of a brain and predict what a person is going to be able to do. He said, “I’ve looked at scans where I would’ve surmised that the person was vent-dependent or very low functioning, only to then walk in the room and see him sitting in a chair talking.

Abbie did have to be admitted, and we finally got settled around 4am. She hadn’t slept much since the previous evening and was exhausted as Monday dawned. As she was finally resting around 6, I went into her bathroom and opened the curtain. I caught my breath as tears came to my eyes. I had a wonderful view of Central Union Church, a beautiful old stone church adjacent to the hospital. That building brought me immense comfort during the initial weeks of Abbie’s journey. They always leave the light on in the steeple, and I felt in the dead of the night, it was God saying to me “While everyone sleeps I am awake and with you.” Some of my first ventures out of the PICU were to the grounds of Central Union to quiet myself, breathe fresh air, and experience God’s creation. As I was thanking God for that view, three doves flew up from behind the church and circled around momentarily before flying around the steeple and disappearing into the morning light. I felt the presence of God descend on me in a heavy and palpable way. I was just standing in the middle of the bathroom, looking heavenward, overwhelmed, when He reached back many months to continue a message.

When Abbie was moved from the PICU to a normal Peds floor her roomed faced north. When she came back three months later to recover from an infection and have a surgery, her room faced west and was around the corner from the previous room. In my journal dated 9/9, I wrote, “Looking out the window today at the much lovelier view, God said, ‘You are around the corner, because Abbie has turned the corner. Rejoice!” Boy, did I! Although, at that time I thought God meant that our race would be speeding toward the end.

The night before we took Abbie to the hospital this time I had the luxury of talking to Sue, Luke’s mommy, for a long time. I told her about how I felt that during the first week of Abbie’s initial hospitalization I fainted a bit, and while I knew God was able to heal her I wasn’t sure if He would choose to. I told Sue, “I think God said, ‘Well, you have quite a bit to learn about me – take a lap around the desert.” We laughed about how our paths are longer than we thought they were going to be, and that “lap around the desert” phrase was fresh in my mind as God was speaking to me in that hospital bathroom, in our new room that faced east.

He said, “OK, now stop looking at the church, and look to your left.” As I did, I found myself looking down the wall of the hospital to the area where the PICU is located. I was probably 50 south of that wing. He said, “Look, Tiffany..you are almost back to where you started. Your lap is almost complete!” What can you do at a moment like that but weep?

But wait, there is more..I know I am writing a lot, but you just have to hear how much God ministered to me during a trying time! The confirmations just kept coming, and used similar words. Last fall, a good friend of our, Gary Chun, gave me a book called “Above the Clouds- the Miraculous Healing of a Little Girl.” Megan Moeller had been a healthy, athletic 8-year-old when after a sudden onset of juvenile diabetes she went into a coma because of massive swelling in her brain. 90% of kids with that condition die, and the others never regain function. After two months of screaming in pain 24/7 and being unresponsive, Megan miraculously recovered. Her dad’s book was searingly honest, and included his thoughts of driving himself and Megan off a bridge into a river just to relieve her suffering.

This book had a big impact on me, and in the middle of the night on Tuesday night, I flipped the channel to see the Moeller family being interviewed. As Mike talked about his impulse to drive off the bridge he said, “But what I didn’t know as I was considering that is that Megan’s healing was right around the corner.” There was that corner thing again! As he said those words something happened that I’ve never experienced before. I felt this weight just drop on me to the point were I couldn’t lift my head off the sleep chair, and I began to cry uncontrollably. “Right around the corner..Abbie’s healing is right around the corner.” God was using this hospitalization to get me alone, not to teach me but to encourage me! I drove to the ER with a seed of fear, but in the hospital I realized that while Abbie’s body was being cared for, my soul was being ministered to by the Spirit himself…wow!

Part III

Because we couldn’t do a spinal tap on Abbie to rule out meningitis, they treated her as if she did have it. Abbie was put on Vancomycin, which is an incredibly powerful, “last line of defense” antibiotic. The first dose she got in the ER turned her so red that her eyelids began to look purple. This is a not-uncommon reaction that we later controlled with Benadryl and slowing down the infusion. She was also put on Rocephin for her respiratory infection and anything else that might’ve been brewing.

Her oxygen stats really varied and at times dipped into the mid-80s. But once I worked with her, readjusted her and encouraged her she would begin breathing better and never even needed supplemental oxygen. My Biomodulator device arrived on Monday and Crystal brought it to me in the hospital. I commenced covert treatments at once. I did one pattern with her and immediately saw her sats go to 100 while she dropped off into a deep relaxed sleep. Astounding to see her numbers changes in response to treatment!

By Tuesday she was looking better, and all agreed that she really didn’t look as if meningitis was an issue. The Vancomycin was stopped Tuesday afternoon. As we were getting ready to leave the hospital on Wednesday I told the nurse, Roxene, “OK, I went down the pharmacy and picked up her antibiotic, so we’re all set.” Roxene paused for a second, then said, “Actually, we’ve had to change her medicine because her sputum samples just came back from the lab. MRSA showed up.” I didn’t grasp the import of this until she explained that is it a resistant staph infection, and most antibiotics are powerless against it. The only reason that Abbie rebounded the way she did is because she got the Vancomycin in response to the meningitis concern. How like God is that to take something that was challenging for us because it required that dreaded CT scan and use it to help Abbie? Once again we see that “all things work together for good!”

And that brings us to today – we are current again! Kyle and I settled into our new routine of being the only ones home in the morning. I am going to relish the time we have together! He was my big helper as Abbie vomited a couple times in the morning. Because her stoma is still a little bit open, vomiting episodes are always stressful as we race to prevent her from aspirating what is coming up. Please continue to pray for complete healing. We are once again in the anti-biotic circle…she takes it to feel better, it gives her diarrhea, which results in a painful diaper rash, so she tries to hold out as long as she can before going to the bathroom.

This is going to be a big summer for Abbie and as I “expectantly watch” I feel the anticipation rising within me. All I can seem to say is “God is so good..all the time!”

Thursday, 6/2/05

End of the school year activities have kept us quite busy lately – I apologize for the lapse in updating Abbie’s progress. I know I am beginning to sound repetitive, but every day is a good day! Abbie still is fighting a head cold, so her runny nose makes certain things, like oral eating, difficult. Yet, we see little steps each day. We haven’t been feeding her very much food by mouth at home because of her cold, but this week her tongue movement at feeding therapy was greatly improved. This will not only make eating possible, but will also make speaking easier for her. She is beginning to experiment with many more sounds.

We have not been able to do any more SCENAR treatments since the last update, however it looks like we will be getting on with things next week. The plan, since our friend Tom is heading out of town, is for us to work with another practitioner here in town for a few days. If we see the device making a difference for Abbie, we will go ahead and buy one so that I can treat her at home. I felt God further close the circle on this one when I received an email from the physician who is one of the American pioneers in this technology. Tom sent Abbie’s patient history to his office to get some input and advice, and this man responded personally the very next day. I was so excited to read what he wrote, but it took a while to get past the first line. He said, “I am so sorry that you are having to go through this. My daughter was five when she was found floating in a pool.” My heart broke as I learned that he was my brother in this painful club that no one signs up to join.

Last week I was looking out the French doors in my bedroom that open onto a patio lined with anthuriums. There were some huge, red, glossy mature blooms and many young, small white blooms. The flowerbed is under the eaves of our house, so to get sunlight the mature flowers had stretched, arched, and reached out into the light, so that their stems were shaped by the journey and their entire “face” looked into the sun, while the young ones sat just a few inches away in the shade. I thought, “That is so like me sometimes…I sit in the shade lamenting that there is not enough light, when what God wants me to do is stretch and grow to reach the light.” I pray that not only will we bloom where we’re planted, but that we’ll also grow up in Christ as we reach out for Him.

We covet your prayers for Abbie’s health – she will be so much more comfortable if she can just kick this cold. And, her molars are back in action again, much to her dismay. Her trach stoma is getting very small but the opening still gives her fits while she’s eating. Even as I write those requests, I feel that we are speeding towards her recover at this point – it may not be obvious physically yet, but spiritually I feel that we are moving at warp speed – and the fuel is your prayers. God bless you for going on this journey with us!

Monday, 5/23/05

It’s been another exciting week around our house, with new people and new things coming alongside to help Abbie on her way. Last Wednesday a woman named Patricia joined Abbie’s regular assistive technology therapist, Lisa for Abbie’s session. We tried a lot of new ideas and discovered that yet again, we were aiming too low for Abbie and boring her into non-participation. We had been programming her voice output device with very simple words or phrases like “more” or “yes, please.” Patricia did fun things like program alternate pages of “Cat in the Hat” into Abbie’s device so that we could read a book together. I would read a page to Abbie, and then she would hit a switch to “read” to me.

Abbie’s device allows numerous messages to be programmed in sequence. So, once we discovered she was much more interested in conversation and communicating in sentences rather than issuing simple commands, the fun began. On Thursday I programmed in lots of messages for the car ride to therapy, like “I like riding in the car!” and “I am ready to go eat!”. She was a Chatty Kathy all the way there. I reprogrammed it before we headed for the elevator, and you should’ve seen the faces of our fellow elevator-riders when Abbie hit her switch to say “I like riding in the elevator!” On the way back up after therapy she said, “I’m going to the car!”, which again resulted in raised eyebrows and curious looks.

Thank you for your prayers about the talk I gave at our church’s Women’s Luncheon on Saturday. I waited, and waited, then waited some more for God’s leading about how to distill what we’ve been through into a short speech. He was faithful, and gave me a good framework to insert my memories, thoughts, and experiences into. I wanted to be focused on the lessons I’ve learned about Him, and I think I was able to do that. I was also very glad to make it through the whole talk without crying – I came really close once, when talking about my small group, and even grabbed a Kleenex – but, I made it! Thank you for lifting me up as I prepared for that.

The weekend before last there was an interesting article in the Sunday paper about something called the SCENAR device. It almost sounds too Star Trek to be true, but we have been stretched this past year by trying things with Abbie we would’ve scoffed at before, and really, by seeing results from these things. The SCENAR was developed by the Russians for use with their cosmonauts, and was approved by the Russian government for civilian use just ten years ago. The device works with the energy fields in the body, particularly with the focal points along the body’s meridian line – which we are already working with to help Abbie. The device measures the energy output and varies its electrical response accordingly. It was enough along the lines of what we are doing to pique my interest, but still enough “out there” to scare me off, until I read the end of the article. The writer quoted a local physical therapist who uses the SCENAR in his practice, but, like us was a little on the skeptical side. For traditional medicine minds it’s hard to accept things like “energy blocks” and “energy asymmetries” having a large impact on bodily functions, but it’s hard to argue with the results this PT was seeing – positive effects in 90-95% of the people he treated. Then, as we say here in Hawaii, it was a chicken skin moment – the PT quoted was a good friend of ours, Tom. He is an elder at our church, and he sat right beside me the night of Abbie’s accident, with his hand on my knee, praying for Abbie. What a full circle!

After researching madly all night, I called Tom the next morning. He said, “Oh, man – I never connected the dots about SCENAR and Abbie because I thought you guys were sticking with a totally traditional medicine path.” We laughed about how your perspective changes once your child is injured, and that if we thought it would help her we’d go to Antarctica and sit in the mud. Tom brought lots of information and his SCENAR device over to the house yesterday. We talked through the theory and application, which was simple to understand because of everything we are already doing with Abbie. God prepared us in advance to receive this. Then, we did a diagnostic session with Abbie.

The SCENAR is about the size of a television remote control, and Tom simply applied it to each of her vertebrae and took an energy reading. Her numbers were very low at all measured points, which was to be expected after in injury like hers, bit still hard to see. Tom said, “Wow! I am really excited by that.” I guess my questioning look forced an explanation because he continued, “If she was in this condition and had normal numbers, there would have to be another explanation, but with numbers this low it opens a huge door for improvement with treatment.”

We then gave her about twelve minutes of treatment at a very low intensity setting. We just rubbed the device over her back and occasionally it would really drag across one portion, which meant that was an area needing treatment. As soon as we were done Abbie had a bowel movement. I was apologizing for the lovely aroma, and Tom just laughed because it was such a textbook reaction to a treatment. Her arms and legs moved more all evening, and even this morning in the tub she was kicking her legs in the water whereas she is usually pretty still. We are going to do a few more trials with Abbie and then we will probably buy a device so that I can treat Abbie at home. That’s part of the blessing – -this is something I can do to help her without driving somewhere for an appointment!

One more thing about Saturday…on the way out to church I had a sense that as I and my family are exiting the dark tunnel and dawn is arriving for us, someone else was just entering, but I had no idea who. After my talk I saw my friend Katie, and her new baby Isaac. He was born two months ago and I hadn’t seen her since, so I was excited to see him and catch up with her. When I finally made my way over to her I saw she had tears in her eyes and all she could say was “Walt’s gone!” Her husband is an Army Lieutenant Colonel and they moved here so he could be an Inspector General – -a position that I assumed, as did they, that he would not get deployed in. Wrong. Ten days after Isaac’s birth, Walt broke the news to Katie. She is now here alone with six kids, the oldest being eight. I cannot imagine the sheer exhaustion she faces each day, in addition to the worry and fear that come with being the spouse of a deployed soldier. Katie is the one just entering the tunnel. She is so dear to me, would you please cover her and Walt with your prayers, and use their story to remind all of us to continue to lift up our troops and their families?

John 6:63 “…the words I speak unto you today, they are spirit and they are life.”

I hope you talk to Him today, and hear Him speak to you in his Word. Be blessed!

Monday, 5/16/05

Just a short note to ask you to pray for Abbie’s ears. After two antibiotics and two types of ear drops her left ear is still draining colored fluid. We’ve had to stop working on eating because it’s too hard for her to manage while she has a cold. Despite that, her facial tone keeps improving, as does her tongue movement. Just another reminder to me that her recovery is dependent on God, not on the things we do with her each day.

Today is Isabelle’s Re-birthday – she lives in Oklahoma and her mom Annie is my Surfing Sister. Right, I know, there are not a lot of good waves in Choctaw, but last summer Annie and I committed to each other that we were going to surf the tops of the ups and downs that come with brain injury recovery. On this anniversary date of Isabelle’s near drowning, I sat down to read the Psalms thinking of them, and God made me smile with His assurances for them, which are also for all of us. Psalm 16:1 “Keep me safe, O God, for in you I take refuge.” Psalm 46:1-3 “God is our refuge and strength; an ever-present help in times of trouble. Therefore we will not fear, though the earth give way and the mountains fall into the sea, though its waters roar and foam and the mountains quake with their surging.”

Abbie and Isabelle have come so far in the past year, and both we and Isabelle’s parents are bursting with anticipation at what the Lord is going to do this coming year.

One last thing…I will be speaking at our church’s monthly Women’s Luncheon this Saturday. This will be the first time I have spoken about our journey, and while writing about it has been a natural and cathartic thing for me to do, I am a little daunted about speaking in public about this past year. Mostly, I am anxious about making sure I convey God’s faithfulness, promises kept, and the love we have experienced. I would covet your prayers as I prepare for this – so, yes – that means I haven’t really gotten any notes together yet. If you are on Oahu, I would like to invite you to join us (provided you are a female-type). We’ll be gathering at 1pm at Hawaii Kai Church on Lunalilo Home Road in Hawaii Kai for a salad potluck (Kitty-corner from Taco Bell and across the street from the library).

Abbie just got out of her bath and is busy talking to Debbie, making sure everyone knows she is cold – although she’s doing it with a smile on her face and a dimple on her cheek. It’s the start of another great day…

Wednesday, 5/11/05

Amazing things are starting to happen so often that it’s difficult to make sure I write them all down. Last Friday we had a team meeting with all of Abbie’s therapists, the director of rehab, and a developmental pediatrician. The discussion turned to Abbie’s cognition, and I went out on a limb, describing a recent event that I felt demonstrated more cognition than even I’d thought was there. I was working under the blacklight with Abbie to help her begin to track more consistently. She was bored with looking at the various shapes I had, so I grabbed some day-glo index cards that happened to be laying nearby. The cards were actually math flashcards that I’d used with the twins. As soon as I said, “Look Abbie, here’s 8 plus 3..what does that equal?” she perked right up. Her interest level and responsiveness remained very high as we talked about numbers and math problems.

Upon hearing this the therapists and even the pediatrician agreed that perhaps we’ve all been talking down to her, and thus boring her. We are now going to treat her like she is a normal 3.5 year old, and speak to her accordingly. We are now assuming normal cognition!! Because of Abbie’s motor challenges and her impaired vision looks can be very deceptive, and I think we’ve all fallen into the trap of believing that what Abbie can do is a good representation of what she understands. She is showing us that is not true at all, and we are so filled with hope and celebration.

Abbie can say the “g” sound very well, and often is able to say “go, so we have been training her to use that to let us know when she needs to go potty. She woke me up yesterday morning by saying “go”, and also woke up from two naps during the day to say “go”. She used the potty chair each time. She is verbally communicating her needs to us!! Another HUGE step.

After church on Sunday we were in the fellowship area between services, chatting and catching up on the week’s happenings. It can get pretty loud with every one coming and going, which can be overwhelming for Abbie and definitely makes it difficult for her to hear one person or follow directions. One of her little girlfriends, Kaitlyn, came up to say hello, and Abbie reached out her left hand towards Kaitlyn’s hand. It wasn’t a huge movement, but it was unprompted and completely voluntary. It also had to be in response to seeing Kaitlyn, because of the background noise. I know I scared poor Kaitlyn with my joyous reaction. Abbie then reached out for Kaitlyn’s little sister, Brianna. At this point I am sure I was jumping up and down…I sensed Kaitlyn looking at me with a “this lady is crazy” look, and just explained to her that this was really big stuff for Abbie! Praise God, she is breaking out of her cocoon!

Monday brought our weekly PT session. It was mostly going to be just an assessment time, for continued authorization purposes. But, Abbie wasn’t satisfied with that. I laid her on her back and almost immediately she raised her left leg. Lynette, her PT, looked at me with shock. I told her, “Yea, she’s been doing that now and then at home.” I guess Abbie took that as a challenge, because she did it five more times in the next five minutes. Her body is starting to listen to her again!

I keep telling Abbie that…”just keep talking to your body Abbie, it is listening better now.” I was encouraging her with this while she was on her tummy Tuesday evening. Every time I would say it she would make a face at me and then redouble her efforts to move. Her brain is working, and the brain-body connection is getting stronger every day!
 Please just pray for her health. She’s had a cold since Friday. I always get nervous when her secretions turn yellow and green, because if it moves to her lungs we could end up back in the hospital. She seems to be fighting it hard, no surprise, but we’ve had to cancel therapy a couple of times this week.

We are beginning to see with our eyes – and hear with our ears – the things we have been claiming by faith all these months..what an amazing adventure!

Thursday, 5/5/05

I’m sorry that I wasn’t able to write an update on Abbie’s Re-Birthday, 5/3. This has been a whirlwhind of a week, between many doctors visits, therapies, the blessing of houseguests, and the twins’ birthday tomorrow.

God’s grace just rained down on us leading up to the anniversary of Abbie’s accident. On Saturday the Duke family from Los Alamos arrived to visit. Their daughter, Emily is one year and one day older than Abbie, and was such a treat to have around. On Tuesday morning I was sitting between Abbie and Emily on the couch when Emily decided that she wanted waffles for breakfast. As soon as Abbie heard that she started smiling. Each time I asked Abbie if she wanted waffles too, we saw her dimple as she grinned in agreement.. Guess we know what the new motivator is during feeding therapy!

On Sunday, we met Shawn, Rita, Elisha, and Gabriella. They were on vacation from Seattle, and had emailed our church secretary to get directions to our church. They have been praying for Abbie during this past year, and just wanted to say hello. Well, I know that when I am on vacation, rousing the kids early, getting all dressed and out the door at 7:30am doesn’t usually fit into the plan. I was overwhelmed at the effort they made to meet us on Sunday.

Rita shared with me a vivid dream she had about Abbie – Abbie was a perfectly healthy 4-month old in her current body. In other words, all she is doing is starting over. Astounding encouragement from a woman who didn’t even know us at the time, but felt such a burden to pray for Abbie.

Sunday was very painful for us because we recall each detail of the Sunday before Abbie’s accident…what she wore, the craft project she did in Sunday school, where we ate…but Rita came along to remind me that I have never, ever been alone. All this time there have been so many that I’ve not even met – I don’t even know your names – and yet you have prayed for us. That soothed my heart more than I can describe.

Monday was a challenging day as well, because the accident happened on a Monday. So, the 2nd was actually more reminiscent for me than the 3rd. We ended up going to the pediatrician because Abbie was draining green fluid out of her right ear. It was about the same time of day as the accident. I could feel myself slipping down that bottomless slope, replaying the accident in my mind. But, as I parked the van at the doctor’s office I realized, “Hey, last year at this time we didn’t even think she was going to survive, and now we’re seeing a doctor for an ear infection!! How gloriously normal that felt! I just thought, “Wow – what a difference a year can make…I can’t even imagine where we’ll be a year from now!”

Abbie rarely has doctor’s appointments, but this week she’s had four. Looking forward to this week I kind of wanted to crawl under a rock and wait for it to pass. I couldn’t understand why it was this week, of all weeks, that we had so many appointments..until today. With each visit came more good news.

During this week last year each time we saw a doctor we got grim or discouraging news. On Monday her pediatrician, Dr L. (the angel who walked us through those dark days) was impressed with her. On Wednesday morning we went to Shriner’s for her 4-month evaluation by the orthopedic surgeon. He noted how much her muscle tone and range had improved, and was astounded that she is using the toilet so reliably. His last words to us were, “She is doing very well!” That afternoon we saw her Gastroenterologist, who was also very encouraging. She said, “She has already done so much more than we ever thought she would, and she looks great!” Then, today Abbie had her second scoped-swallowing study. Unfortunately, she pretty much slept through it, even though the camera was threaded through her nose down to her larynx. So, she didn’t do much swallowing, but we saw all we needed to see. Even I, with my untrained eyes saw great improvement. I pointed to the TV screen and said, “Last time this part wasn’t closing over that part all the way.” (I know, you are amazed at my medical terminology!) The ENT agreed that the epiglottis (a flap) was completely covering her trachea (windpipe) so that when she eats nothing goes into her lungs – which was a noticeable, concrete improvement! Dr. T. said, “I know that she is absolutely not aspirating…all she needs to do is improve her tongue movement and she will be eating again!!” WOW! Her tongue movement has been improving day-by-day, so we are on the way! All this good news absolutely negated any reliving of events last year. God is so gracious to us.

And finally, we drankly deeply from the ever-reliable spring of encouragement in God’s Word. My precious friend Sandra sent me an email on May 3rd which described her children’s devotion that morning. The verse was Luke 8:50, “’…Don’t be afraid. Just believe, and she will be healed.” No coincidences…never, not ever! I felt like it was an anniversary card from Heaven. And I received it with joy.

Tuesday, 4/26/05

Sometimes Abbie’s changes are so subtle that they sneak up on us and are better noticed by people who see her infrequently. Last week, however, her changes were noticeable even to Ray and I. On Saturday we looked at each other and said, “This is not the same girl we had on Monday.” It is difficult to quantify, and thus difficult to describe to you. Things like how her face looks, how she uses her mouth when she eats, her attempts to sit up, and how responsive she is to her surroundings all improved this week.

The tendons in her heels are lengthening again, and she is able to stand flat-footed. This is a big deal! Now we just have to correct the rotation of her feet when she stands. She likes to rotate her ankles inward and put all her weight on her arches, but that is improving as well.

Abbie will now wake up from a nap to use the toilet, and once her business is done, she’ll go right back to sleep. What a big girl! This is just one indicator among many that Abbie’s awareness continues to increase.

I was reading through Luke today, looking specifically for passages on healing when I wound up in Luke chapter 8. As Jesus was on his way to heal the only daughter of a man named Jairus, he was surrounded by a crowd. One woman in this crowd, who had been dealing with a health problem for 12 years, reached out and touched his garment. Luke 8:45-46 records the following: “’Who touched Me?’ Jesus asked. When they all denied it, Peter said, “Master, the people are crowding and pressing against you.” But Jesus said, “Someone touched me, I know that power has gone out from Me.”

It hit me that there is a huge difference between “crowding and pressing against” Jesus, and “touching” Him. Most of us are content with the former – we stand in His presence, we try to get as close to Him as possible, and we think that proximity is all we need to have His power work in our lives. But, His power did not go out to the crowd around Him, only to the woman who touched Him. What made her different from all those around her? Certainly, there were many others with a need for healing in that crowd. She did not stand out because she was wealthy, educated, or noble. She had no special relationship with Jesus that gave her preferential treatment or an inside track to healing..so, what was it?

Luke 8:48 gives the answer, “Then He said to her, ‘Daughter, your FAITH has healed you. Go in peace.” We transition from crowding Christ, from simply pressing against Him to actually touching Him through our faith. And, in that transition is also a transaction – a transfer of His power into our lives. Reaching out to Him is not enough, reaching out in FAITH is what transforms us.

Weds. 4/20/05

We have spent the last week learning the primary dance of brain-injury recovery. It’s called “Two Steps Forward, One Step Back.” I had so recently written about Abbie’s improvement in eating when, last Thursday and Friday she aspirated food during her feeding therapy. This means food was going down the wrong pipe, and could’ve ended up in her lungs resulting in an infection. Abbie has never had this problem before, and her therapist was so concerned that she called the ENT who managed Abbie’s trach. After I scheduled a Saturday appointment with the ENT I had a good talk with myself. I refused to let myself slide down the slope of defeat and dire predictions, like “She’ll end up trached again if she gets pneumonia at this point,” or “Maybe she will never eat again…” I recalled that God was had been so near all week, and told myself that this was not a huge event – it was more like a yellow light than a stop sign.

So, we went to the appointment on Saturday with my heart at peace with any outcome. If the findings meant that we needed to stop feeding Abbie for now, we would still work on strengthening her swallow and trust God for Abbie’s return to Pizza Hut in the future. I tried to remain focused on the fact that protecting her health is so much more critical than the timeline of her eating.

The doctor gave me better news than I had hoped. She said that since Abbie had been eating, this wasn’t a structural problem – so, it wasn’t something that was going to prevent Abbie from ever eating. She looked in her mouth, saw four emerging molars, and concluded that ongoing teething was causing so much extra drool that it was hard for Abbie to handle it during feedings. I asked her if it meant we needed to stop feeding her and she said, “No, just suction her mouth before you start.” WOW!! The yellow light turned back to green! I fed Abbie on Sunday following these instructions and it went very well. The doctor also noticed great improvement in Abbie’s tongue movement and control, which was encouraging.

The other thing we keep drilling down into is just how much prayer changes things. Abbie’s entire left side is more affected due than her right side, which shows up primarily in her face and her foot. The tendons in her lower left leg have become quite a bit shorter while she’s not been walking. This causes her foot to point down and makes it difficult to get her foot back up into a neutral, straight up-and-down position. Well, not “difficult”, “impossible” is more like it. Last Saturday I spent a long time praying over that foot specifically, even to the exclusion of her right foot.

Tuesday at physical therapy we put Abbie in her stander. Lynette, her PT remarked, “Wow, now if we could just get this foot to look like the other one…” I answered, “I know, that left side is just so tough. She has a much easier time with her right foot.” She gave me a confused look which caused me to look down at Abbie’s feet. Her left foot was all the way down, while her right heel was still in the air a bit. Her left foot had become her “good” foot! I just laughed aloud, and eventually explained to Lynette that I had spent a long time in prayer for that foot. Although I know to the depths of my soul that God hears and answers prayers it still amazes me when I SEE him answer mine.

One special request this week – would you join our family in praying for little Luke? (www.howsluke.blogspot.com) He nearly drowned on August 30th, and his mom, Sue and I have become companions, partners, and sisters through this journey. He is scheduled to get his trach out April 26th. This will be a huge milestone for him, just like it was for Abbie. Please pray for health, protection, encouragement for his family, and a good hospital stay.

Thank you for your steadfast support during this journey – I keep telling Abbie that she has many, many friends to see once she is all better. We are both looking forward to it!


It still surprises me when things in Abbie’s journey come full circle. During her first week in the hospital, when things were very uncertain and her condition changed hourly, friends of ours called on a powerful prayer warrior to come pray over Abbie. Ray and I didn’t know he was coming, and were out of the room when he arrived. The story related to us is that as he prayed, he stopped, looked up and said, “This is a very strong girl!” Our family friend smiled and said, “You have no idea!” The man continued to pray, and as he was finishing said, “This little girl is coming back.” We clung to those words even as, just a few days later, we were faced with the decision about continuing life support.

Last Sunday we had a guest at church, an architect named Charles, who was there to do a presentation about an upcoming renovation of our facility. After the service, I went back to thank him for coming, and he looked at Abbie and I and said, “You know, my church has a healing service every Monday night.” God had been working on me to get together a group to physically pray over Abbie, but I didn’t know on whom to call. God had simply said, “Wait.” Then, Charles just dropped the answer into my lap.

So, Monday evening came. It had been a hectic day, and the twins had a ballgame. It would’ve been so easy and “understandable” to stay home. But, I knew I was supposed to go, so Crystal and I loaded Abbie and headed across town as the sun was setting.

The pastor was teaching a group of about 50 people when we arrived. Abbie decided to accompany him with her singing voice, so we listened on the porch. As the group broke up into prayer groups the pastor approached me and asked, “Are you needing prayer for your daughter? What is going on with her?” I barely got the words, “She nearly drowned..” out of my mouth before he started to smile. He said, “I prayed over her when she was in a coma. May I pray for her again tonight?”

I couldn’t believe I was face-to-face with the man, Pastor Dean, whose prayer and whose words had sustained us through a very dark time. I followed him into his office, holding Abbie, feeling flutters of anticipation in my stomach. As he began to pray over her, Abbie’s entire body started to shake and she cried out. She continued this way for the duration of his prayer. When he was through, I explained that I feel that Abbie’s battle is almost 100% spiritual now, and that sometimes I feel such resistance when I pray. So, he asked permission to try one more thing. Again, he laid hands on her and began binding any and all spirits that may be hindering Abbie. She was instantly calm and peaceful. Now, I am a good, conservative Baptist girl and God is really stretching me with this healing “stuff”. Monday night He showed me how powerful and available the Holy Spirit is. I felt with my own hands and heard with my own ears the effect of the Spirit on Abbie. Pastor Dean again left me with words that seared my soul. Of course, I was hoping Abbie would walk out of there, but he gave me a perspective change. His assessment of Abbie had nothing to do with her physical or neurological abilities. He said simply, “She is powerfully anointed. I feel the Holy Spirit so strongly all over her.”

I heard God whisper, “Remember, she is Mine. Get your eyes off her body and behold what I am doing in her soul and in her spirit!” I left there knowing that Abbie will be truly and completely healed, but also knowing that her physical recovery isn’t the important part of what is happening.

There is a big praise in the physical arena, however. Abbie is eating, really eating, again! For months we have been “tasting” but last week she started eating measurable amounts. One of Abbie’s favorite baby foods is Plums and Apples. The first day she really started eating she had about 2 tablespoons in the morning and in the afternoon. By that evening Abbie was complaining about a bellyache and the gas caused by eating so much of the plums. Hallelujah! We still need prayer about the muscle tone in her cheeks and lips, but she has turned a big corner.


I’d love to tell you that because of God’s grace and His promises, we are able to stand in hopeful faith each day. But, saying that would make me a big, fat liar. And, it would give too much credit to our own strength, diminishing just how much we are carried each day. Last week was a rough one. No particular reason that I can pinpoint, except that Terri’s Schiavo’s death took much more out of me than I realized at the time.

I rarely feel like weeping in church, and hardly ever actually allow tears to flow, but this past Sunday I was a mess. I was doing OK at keeping up the façade until the opening chords of “Come Thou Fount of Every Blessing”. Fortunately, my sobbing was covered by the music, I think. I’m not a public crier, but it did my soul good to just let it go in God’s House.

Still stuck in this fog, I was driving home from therapy on Monday when Charles Stanley, one of my favorite teachers came on the radio. He said he was going to be speaking to those who felt surrounded by darkness – darkness that had been lasting for a while, and seemed would last forever. I almost punched a sunroof into the van by raising my hand so hard, yelling, “That’s me!! He’s talking to me today!!” Unfortunately, the drive home was shorter than the message, but I heard enough to be directed to the story of Joseph in the book of Genesis. I was confident that there would be a message in there for me.

So, I turned to Genesis 37, and there, at the end of the chapter, was my note of encouragement. This chapter tells about when Joseph’s brother’s sold him into slavery and then showed the bloody coat to their father, implying that he was dead. Verses 34-36 read:

“So Jacob tore his clothes, and put sackcloth on his loins, and mourned for his son for many days. Then all his sons and all his daughters arose to comfort him, but he refused to be comforted. And he said, “Surely I will go down to Sheol in mourning for my son.” So his father wept for him. Meanwhile, the Midianites sold him (Joseph) in Egypt to Potiphar, Pharoah’s officer, the captain of the bodyguard.”

I can so relate to Jacob’s pain. I, too, feel like my soul is in Sheol at times, overwhelmed with the grief of our loss and the size of our battle. My children try every day to comfort me, and some days even that cannot pierce my heart. Economics doesn’t apply to grief over children. Five healthy kids do not make it OK to have one very hurt one – the scales will never balance that way. But, what was encouraging to me, and what has so radically changed my outlook this week, was that one little word, “meanwhile.”

Jacob was overcome sadness thinking his son was lost forever. But, MEANWHILE, Joseph was alive and God was beginning to work a long and complex plan that would result in the saving of countless lives, including Jacob’s family. I realized that there is a “Meanwhile” in the plan for Abbie, too. While I am heartbroken, God is at work in places that I can’t see, for purposes that I can’t imagine. What I see and feel are not the sum total of what is going on here, in fact, they are probably a very poor representation of actuality. I trust in the meanwhile, and rejoice that after the meanwhile comes the rest of the story!

As soon as I’d realigned my heart, Abbie made some big steps forward – wouldn’t you know? One of the areas I’d been discouraged about is her eating. She was progressing, but slowly. Since Monday she has been eating and swallowing as well at home as at Vital Stim, with the electrodes on. She swallows as soon as you take the spoon out of her mouth and you can hear her swallow from across the room. These are both significant improvements. Her vision is also improving, which is especially noticeable when I show her fluorescent shapes under a black light. She tracked consistently last night, and even moved her head up and down to follow an object. Every day she is getting better, and this week I have the eyes and heart to see it!

Easter 2005

We dressed alike just because we could! Easter is the last major holiday that we remember Abbie from “before”, so this was in some ways a bittersweet day. Seeing all the little girls run about in their Easter dresses could’ve easily stoked jealousy, but our gratitude for just having her with us was too powerful to allow for envy. When this photo was taken it was breezy, which Abbie absolutely hates, thus the cranky look. There was a petting zoo at the Pacific Club, where we went for Easter dinner. She had a llama lay its head right in her lap, and then try to eat her blanket. She also got to pet a baby goat and a big rabbit. She went to the car at the end of the day clutching the pink egg that RJ had given her from his hunt. All in all a wonderful celebration of the Resurrection and the eternal hope it brought!

Kyle, with Odie, the Labradoodle in training to be a therapy dog. She has been offered to Abbie — and act of incredible generosity. However, after seeing the grown dogs, which Ray thought resembled small ponies, we know our home won’t work for Odie. So, we played with him, hugged him, and sent him off to the family he is sure to bless.

Friday, 4/1/05

Yesterday morning I awoke with Abbie in the early morning, just before the sun came up. As I was holding her, I prayed for Terri Schiavo and the Schindler family, as I so often did while holding Abbie. But, it was an especially intense time of prayer. At last I sensed in my mind that off to the left side was a brilliant light, but I couldn’t exactly focus on it. I just heard, “She is in such glory now that you cannot even look upon her.” My emotions were so mixed. I took this to mean that her journey on Earth was ending, but that it should not be a sad day. A couple of hours later we flipped on the news to see that in fact, Terri had passed away earlier that morning. We continue to pray for her family, as their exhausting fight to save Terri now gives way to grief.

Abbie received some new devices this week that will help her recovery. On Tuesday she was fit with FM amplifier hearing aids. She does not need these because she is “deaf” or because she needs the volume of sounds increased. The amplifiers help filter out background noises so that she can concentrate on what I am saying (kinda makes me want a set for all my kids…). Whoever is working with Abbie wears a special microphone on a necklace that can adjust how much sound input we want her to have. We can limit her to just hearing the person wearing the necklace, or we can allow her to hear the whole range of sounds in her environment. She has responded very well to this. It helped us keep her awake and involved in her assistive tech therapy session yesterday, and also helps her better respond to commands and directions. During a therapy session today, during which Abbie was loudly complaining, Ray called on my cell phone. As soon as I put the phone to the microphone and let him talk to her, she calmed down. Very much a Daddy’s girl!

Speaking of who owns her heart..her big new move this week has been to lift her head off the pillow and pucker up to give Daddy goodnight kisses. Lifting her head while lying flat is a lot of work for Abbie, and we were excited to see her do it over and over. She has also made huge progress with the slide this week. On Wednesday evening the entire family ended up rallying around the slide because it was so exciting to see her moving on her own. She has enough range with her arms now to really push, and is using her knees and hips, as well as lifting her head. Her intentions are very clear, now it is just a matter of making her body do what she wants it to do.

Current prayer requests include the complete closure of Abbie’s tracheostomy stoma – it is very tiny, but it still allows air through which is very disconcerting to her, especially when she is trying to eat. Her feeding therapist, while extremely pleased with her progress, feels that swallowing will become even easier for her once the stoma closes. Please also continue to pray for her muscle tone. She is doing very well in this area, considering her injury, but there is just enough high tone left to prevent a full range of voluntary movement. Her vision is something we continue to really work hard on. There have been improvements, but we are anxious to see a real breakthrough!

The passing of Terri yesterday, and the Pope’s failing health make this a week to reflect especially deeply on the value of each human life, and the dignity of every person. While I am not Catholic, I respect that Pope John Paul II never waivered on either of these two points. Terri represents what happens when a country doesn’t show the same fortitude of character that the Pope did.

Sat. 3/26/05

Having all the kids home for Spring Break this week kept me busy indeed – a joyful kind of busy that prevented me from getting to the computer. In reflecting back on the week, though, it was more than than the vacation that has preoccupied me.

It has been incredibly difficult, on so many levels, to witness the unfolding of the Terri Schiavo case. I find myself talking back to the television, as I sit and rock Abbie while people who obviously know very little about brain injuries blabber on and on. I can only pray now for Terri’s comfort, and for peace for her parents whose distress I cannot fathom. We, too, have been told that there was “no hope”, and that all the “thinking, feeling, appreciating parts” of Abbie were gone. We chose to believe our Father instead of MRIs, CTs, and EEGs. We decided that while there is life, there is hope.

I need to describe to you how ridiculously simple a tube-feeding is. Abbie has a port in her stomach that resembles the cap on a beach ball. I simply open it up, insert the tube, and pour her formula into a syringe attached to the tube. Gravity then drains the tube into her stomach. It takes no electricity and no technology beside the button on her stomach. I heard one “commentator” say that a tube-feeding is much more technologically complex than a blood transfusion. Well, I certainly can’t give Abbie a transfusion at home, but I feed her myself five times a day. I just want you to know one piece of truth in the maelstrom surrounding Terri.

Ray and I attended the most beautiful wedding I have ever seen tonight, and it gave me a much needed chance to catch my breath and reason with myself. Being that it’s Easter weekend, I realized that I am “stuck in my Saturday”. Christ was crucified on a Friday – a day of unimaginable grief and horror for those who loved and followed him. He was resurrected on a Sunday – a day of overwhelming joy and awe. But, in between came Saturday..a stretch of sorrow and heartache with no end in sight, at least not in the minds of those left behind.

Today, for the first time since the accident I watched video of Abbie and again felt the overpowering emotions of our “Friday”..May 3,2004. To see how funny, lively, spirited and stubborn, not to mention beautiful, she was just about broke my heart. At the same time, hearing her voice was a sweetness I cannot describe. It hit me how accustomed we’ve become to life without that voice, how time has numbed us to the pain that is still there deep inside. I felt adrift and hope faded, until I remembered that God has promised a Sunday for Abbie. Christ’s disciples could not have imagined how glorious His return would be, and I think that Abbie’s recovery will be even more miraculous than we have hoped for.

When I was growing up my mom sang in the church choir. I vividly remember the Easter song that went, “It may be Friday, Fri-day..oh,but Sunday’s a-comin’, Sunday’s a-comin.” I just pray for the strength and faith to walk the path until the sun rises for Abbie. She continues to gain strength each day, but her lower molars are really giving her trouble this week. Because she is not chewing on solid food it seems to be taking longer to completely cut those molars, and the pain is extended for her. Please pray that they would come all the way through. Her trach hole is still healing nicely, and will hopefully close completely in the next several weeks.

I wish you a joyous celebration today! Easter means that the grave doesn’t matter anymore, and because Christ has conquered all things, through Him we, too, can be conquerors. While Christmas celebrates the birth of Hope, Easter celebrate the victory of Hope. He gave Himself willingly so that we would never have to be hope-less, and I am incredibly thankful for that tonight!

God bless!


We are back from our Big Island excursion, with lots to catch up on! I tried to keep current in the guest book while I was unable to post updates, but I’ll summarize that week again here.

Abbie’s trach came out on March 3rd, and she breezed through it. I knew life would be much easier for all of us without a trach, but I had no idea HOW much easier. The supply company came to pick up the pulse-ox machine the day after we got home, so Abbie now sleeps with nothing connected to her. Which means Abbie now is back in her spot in my bed! The upside for her and I is that we get to sleep in our comfy bed again. The downside is that we only have a queen-size bed, which means the queen and the princess often crowd out the king.

Abbie’s stoma, or the hole where her trach was, is healing on it’s own at a rapid rate. The hole has shrunk to the size of a pin-head already. We simply put a thick square of gauze over the hole and cover that with some special tape. She looks so different with out her “necklace” on..I am already forgetting how she looked with a trach, praise God!

We have now weaned her off of the last medication she was on, Robinul. This medication helped control Abbie’s secretions. Once the trach came out she didn’t need so much help anymore, and finally we noticed that the medication was actually making it harder for her to cough up what she needed to. So – not only are we mechanically free, we are medication free as well!

This has been a big month for Abbie!

Abbie had her first follow-up visit with her neurodevelopmentalist, Linda Kane, on March 10th. We felt like Abbie had made some real progress since her evaluation in November, but were very curious to hear Linda’s assessment of her. I soaked in words like “unbelievable”, “incredible” “sooo encouraging!’

At one point Linda turned to me and said, “I know it doesn’t feel like it to you, but Abbie’s recovery is happening so much more quickly than can be expected after an injury like hers!” To see her progress annotated and measured in black and white was like trading an old, used-up fuel cell for a brand-new one! We are ready to push hard through this next leg of the journey. We got to delete some of the activities we were doing and add new ones because of her progress. The one thing that stood out to Linda the most is the astounding improvement in Abbie’s awareness level..nothing slips by her now!

Our family was still floating on all that great news when, the next day our good friends, the Suttons, arrived. We have been very close since we lived near each other in North Pole, Alaska. Much deep bonding can happen during Alaskan winter nights spent at a McDonald’s playland.

On Sunday, 3/13, we loaded our caravan and headed to the airport. We were very much looking forward to a few days at the Hilton Waikaloa on the Big Island. I was a little nervous about getting Abbie through security, but it was a snap. Ray and I looked at each other with teary eyes as the plane took off. Many months before, with Abbie on a ventilator, a well-meaning nurse said, “Don’t worry, for vent-dependent kids one week of full-time respite care is provided each year, so that you and the rest of your family can travel.”

“Ha!” I thought, “As if I ‘m ever going to leave my little girl to go on vacation!” I was settled in my heart that I would live and die on the island of Oahu if Abbie couldn’t go with me. As the plane gained altitude, one more “never” was scratched off Abbie’s list!

The Hilton is a family paradise, with pools that go on and on, slides, a lagoon, and a beautiful setting. RJ didn’t get to take Abbie down the slide this time, as he had written about recently. But, it was special just to have her there in the sunshine with us. She really enjoyed spending time outside. On Tuesday I was relaxing on a chaise lounge holding Abbie when all of a sudden she just sat up from a reclined position. I looked at Rick, he looked at me, and we both said, “Where’s Ray?? Can you believe she just did that?” That was a big first for Abbie, and shows that she has strength in her abdominals, and is able to coordinate the flexion required to sit up. Another huge step…

As I was talking to another old Alaska friend, Gordy Lewis, on the phone Wednesday, I told him that the trip felt like a pit stop for us. Abbie has come a very long way, and has a long way yet to go. We got off the track for a few days, recharged, and are now ready to zoom again.

At the airport I put a luggage tag on her wheelchair that said simply, “Miracle In Progress….Psalm 103″ We can surely trace God’s hand now in these past months, and look forward to how He will work in Abbie’s future. What is boldy apparent to us as well, is that prayer has made all the difference for Abbie. This “miracle in progress” is one you are helping to bring to fruition, and the gratitude in our hearts is larger than the sea that we marveled at on the Big Island.

The day Abbie got her trach out! 3/3/05. It was taken out about 30 minutes prior to this picture. She sailed through decannulation, and if anything, was relieved to finally have that tube out. A huge victory for Abbie


Here we go!! Bright and early tomorrow morning we will take Abbie to the hospital, and when we return home on Thursday she will be trach-free! I was telling a friend tonight that it feels a lot like having a baby…we’ve waited for months and months, and anticipated this so greatly, and now that it’s here it seems like a surprise. “Wow! It’s happening tomorrow!!”

My dear friend, Michelle (aka The Webmaster) will be moving this weekend, so I will post updates in the guest book.

As I was cleaning up last night God brought to mind a vivid dream I had during Abbie’s first week in the PICU, nearly ten months ago. I was inside an encampment, with lots of other people. It was civilized – there were small buildings, but life was simple. We were all slaves, but not unhappy. There was a wall surrounding the camp and none of us had ever seen the other side of it, in fact, for many, any curiosity about the other side had vanished. We thought the wall was thick and impenetrable, so we just went about making life as pleasant as we could on the inside. Suddenly, I was on the outside of the wall. It turned out it was only the thickness of a 2” x 4”, and I was screaming out for others to join me. God pulled me aside and said, “The slave master is sin, but I have made a Way out for you. The ONLY thing that matters in your lifetime is how many people you can help to the other side of this wall. How many people can you help set free?”

The details of this dream didn’t slip away as so often happens, I can visualize them as if I‘m watching television. I was surprised that after so long I randomly recalled that dream. Ha! Nothing is random. Less than an hour later I sat down to read the Psalms, which I haven’t been getting to these last few days. Psalm 118:5 took my breath away. “In my anguish I cried to the Lord, and He answered by setting me free.”

He wrote about my dream thousands of years ago. It was reconfirmation to me that the Creator and Sustainer of the entire universe stoops low enough to speak to me. That thought is so incredible that it is too easy to dismiss. I was mentally chewing on this today when it took me back to another memory.

In the Army we used simple code words and letter-number combinations to ensure that while on the radio we were talking to who we thought we were talking to – we had to authenticate their identities. Before we could give any credence to a message received, we had to verify the source. The Bible is our code book (and I’m not talking DaVinci). It verifies Who God is, and if we use it as we should, it can authenticate the messages we receive. To act on a message without verifying the source leaves us open to the wiles of our enemy. So, I know I sound like a broken record, but…buy it, dust it off, leave it open, memorize it..do whatever you have to do have the Word of God be a part of your life.

Abbie will be getting her trach out on March 3rd, ten months to the day of her accident. This is the first 3rd of the month that something positive will happen. The monthly accident anniversaries have found us in the ER (twice), and struggling with depression many times. The tide is turning this month!!

Thank you for your continued prayers and support. It is overwhelming to be stopped by strangers who recognize Abbie because they having been praying for her. This huge step forward is a victory won by the perseverance of God’s people – Abbie’s “team”. As her coach, manager, and wardrobe assistant, I want to say a big “Mahalo” for her and for our entire family.

Weds. 2/23/05

There’s lot of good news about Abbie, but that is not why I am writing tonight. As most of you are probably well aware, time is running out again for Terry Schindler-Schiavo and her family. I sat listening to a Focus on the Family broadcast today that was dedicated to explaining her current situation and the outlook for her future. As I listened I was working with my own brain-injured, tube-fed daughter who is more precious to me than anything in this world. It is impossible for me to comprehend how a judge can label Terri as unworthy of life, and approve of her being starved and dehydrated to death.

Please, please, please if Abbie’s story has touched you in any way do these things: PRAY for Terri, her family, Judge Greer, the Florida Legislature and Governor Bush – our God is an awesome God who can make a way where there is no way; SPEAK OUT – contact Gov. Bush at jeb.bush@myflorida.com, if you live in Florida, contact your representatives. Tell everyone you know about Terri’s plight; you can also find out more at Terri’s official site www.terrisfight.org – it’s down right now because of overwhelming traffic, but keep checking back.
Terri’s story is Abbie’s story, except that since Abbie is still my little girl, I get to make decisions for her, in her best interest. I cannot imagine the heartbreak, desperation, and frustration that Terri’s family is experiencing. If her guardian is allowed to terminate Terri’s life a bar will be placed determining the value of life, and people like Terri, and our beloved Abbie, fall below that bar. The fear that places in the hearts of parents of special kids is impossible to describe.

Terri is not in a vegetative state, nor she on life support – she simply needs a tube to eat because she cannot swallow. Last April I was just an observer of this, and now I am living it. I say that to remind everyone that your family is also only one accident, incident, or stroke away from joining the Schindlers, the Varas, and thousands of other families in the brain-injury boat. There are many blessings in this journey, but the threat of changed lives not being valued enough to be sustained is not one of them. Please help save Terri, in whatever way you can. In doing that you will be helping to protect so many more, including Abbie.

“Now we who are strong ought to bear the weaknesses of those without strength….” – Romans 15:1

Sat. 2/19

I found out that I am not the only one who has been making plans around getting Abbie’s trach out. RJ’s teacher sent a note home, attached to a copy of his journal entry yesterday. She wrote, “I just had to share this with you – brought tears to my eyes.” Here’s RJ’s journal entry for February 16th:

“Dear Journal,

I am happy now because my baby sister came home. So we can go to different places like Hawaiian Waters Adventure Park and it’s really fun, and Chuck E Cheese. And, soon she’ll get her trach out so we can go on a trip to the Big Island. I will go down the big slide with Abbie on my lap and we will go sliding into the pool with my baby sister.”

The depth of his love for his sister is “hard-core” as Ray put it yesterday. For a seven-year-old boy to be constantly thinking of and caring about his little sister who cannot play and interact very much with him right now is such a picture of unconditional and unstoppable love…I can’t wait until she can read this herself and know how much he loves her.

Please pray for Abbie’s lungs. During her bath last night some water trickled through her tracheostomy opening. I think I got it all suctioned out, but would really hate to see her get an infection this close to decannulation.

Thurs, 2/17

Today I got the call I have been waiting, praying, and holding my breath for! We have scheduled the date to take out Abbie’s trach. She will be admitted to the hospital on the morning of March 2 for a bronchoscopy (with Abbie under sedation, her ENT will look at her entire airway with a scope.) Abbie will then spend the day and night in the hospital with her trach capped. If all goes well, we will leave the hospital without a trach!! This has been such a deep desire of our hearts for so long, that just having a date on the calendar has caused me to dance through the afternoon.

I have been growing impatient about getting Abbie’s trach out, and once I had the date I realized one of the major causes for this. We have some very close friends coming to visit the second week in March. One of their sons is Kyle’s best friend in the entire world, Ben. I want so much for our families to be able to get away for a few days together, to play on the beach, to just hang out…and now, with Abbie decannulated, we will be able to. It will be a reward for my boys, who have given up so much during these months, and I was worried that we weren’t going to get the trach out in time. Praise God! He knows how much the other kids deserve this, and once again, we see how perfect his timing is!

Each of Abbie’s therapists have noted this past week how different she seems..more aware of what’s going on around her, more expressive, more sensitive..on Wednesday her therapist and I were laughing because Abbie did the exact opposite of what Arlene had asked her to do. Abbie started crying – her feelings were hurt. I just get the sense that the precious bud we have all been praying for is getting ready to blossom!

Please join us in praying to protect Abigail’s health during these last two weeks before decannulation. A serious cold, infection or the flu will derail the plan. Thank you for praying us this far down the path — a trach laying by the side of the road as we march on will be serious evidence of the healing God has done!!

Sunday, 2/13/05

I’m typing at 10:30pm, and Abbie’s trach has been capped off now since yesterday morning at 9:30am! Her sats are so much better, and she is so much more comfortable with it capped that we have just left it covered. In fact, she cries when I remove the cap! We will see her ENT on Feb 22 to determine when we will actually remove the trach, and I am hoping since Abbie is doing so wonderfully, we’ll get to be free of it before the 2nd week of March as currently planned.

Certain things have started to happen with greater frequency that just confirm to us that Abbie can hear and understand everything that is going on around her. Friday was the last day of work for her physical therapist, Jayna.

We first met Jayna when Abbie was in the ICU, still pretty much in a coma. I will never forget the day Jayna sat Abbie up in a chair, and to get her legs to bend we kept telling Abbie to go down and find the stuffed Nemo with her feet. Abbie followed these directions, and Jayna became the first therapist to concur with our belief that Abbie was going to be more than a shell of a girl. Obviously, because of that, and because of these many months of sharing her talent, enthusiasm and constant encouragement with us, Jayna is very special to our family. On Friday we were bidding each other farewell, and looked down to see big tears rolling down Abbie’s cheeks. She wasn’t audibly crying, as she does when she is complaining or scolding someone. And, tears never appear randomly on Abbie’s face. Although we weren’t speaking directly to her, she heard and comprehended what we were saying. Those are the most precious tears yet shed in this journey!

I must thank many of you who have told me since my last posting that you are joining me in banging on the gates of Heaven for Abbie. There is so much strength that returns when I remember, and when you remind me, that I am not alone in this.

“My flesh and my heart may fail, but the strength of the Lord is my portion forever.” Psalm 73:26

Weds, 2/9

Time to type a long over-due update while Abbie naps. Not many days of nursing, houseguests, and focusing on completing Abbie’s program each have kept me away from the computer. Some exciting things have happened in the last week or so.

Last Friday we began the Vital Stim therapy with Abbie. This involves taping electrodes on her left cheek (because it is her weaker side) and under her jaw. She was not a fan of this, and began fussing before we even started the actual therapy. The electronic stimulation did help her to have more effective swallows, however. We had a second session on Monday, and a third today. During today’s session we did not place the electrodes on her cheek, only under her jaw, and she did great. With no fussing, she swallowed quite a bit. She is sensitive to the electrodes, and they need to be turned up much higher for the best therapeutic value, but we are taking it slow to give her a chance to get used to it. I am very optimistic that this therapy is really going to help her.

We downsized Abbie’s trach again, to a 3.0mm, the smallest size! Her ENT asked us to begin capping it at home to get her ready for the overnight capping trial. She suggested we start out at 30 seconds per trial, since Abbie might panic when the airflow through the trach is cut off. Her first capping was yesterday, and almost as soon as I put the taped-over Passy Muir on her trach her heart rate slowed and her oxygen sats went up. She got very calm and relaxed. So, instead of 30 seconds, Abbie went for 33 minutes! Praise God, she is more than ready for life without a trach! Later in the day I capped her for almost an hour and did normal exercises with her. Again, she did beautifully! We have an appointment with her ENT on Feb 22, and the target for decannulation is the first or second week of March, just to ensure the flu season is over.

I must admit that sometimes I don’t write updates because I am struggling through a valley, which was the case early this week. Impatience, more than disbelief, is my biggest enemy. I don’t doubt that God will heal Abbie, I just want it NOW! Recently, it was during a really rough day that I felt like Hansel and Gretel..only, God doesn’t throw crumbs, He scatters jewels to help us find the way home.

I was getting Abbie ready to go for a long day of therapy and HBOT, and a woman came on TV talking about the preciousness of life. She said that it is not up to us to decide if a life has value, the Creator, by bestowing life on a person, has already decided that. She illustrated this by showing a picture of one of the 24 children she and her husband have adopted. He had a condition which resulted in him being born with only a brain stem. He was not supposed to “be anything, do anything, or have any ‘value’”, she said. But, then she called this little boy up on stage, that same little boy in the picture, and he spoke about his fourth grade class and how he liked his teacher. Yes, his head was shaped just a little bit differently, but he was a beautiful, intelligent, handsome boy. I felt so encouraged, but when the pastor said that this woman’s husband was a hospital administrator I began to weep – I felt like the story was told just for me that day. When I am starting to lose heart and fatigue colors my outlook, my gracious Father arrives with the jewel I need to find the next step on the path.

I have been very convicted lately to move beyond asking and seeking. Matthew 7:7 says, “Ask and it shall be given to you, seek and you shall find; knock and it shall be opened to you,” Knocking is the most insistent, proactive thing in that list. I have persevered in asking God to manifest His healing in Abbie, and I continue to seek Him, but now I am knocking perpetually, even aggravatingly, at His door until He answers. I know it has been a long time now since Abbie’s injury, but will you join me in banging on the door and rattling the gates? It is time.

Sunday, 1/30/05

It’s actually already early Monday morning, but there’s so much good stuff to write about that I don’t want to lay down without finishing an update. Friday was one of those “Where’s my camera when I need it!?!” days. We saw Abbie’s first true smiles. She has been “smiling” for a long time as indicated by her evident dimple and her little mouth that would screw up on the right side, and we treasured those. But, on Friday we saw smiles that showed off her top teeth and used both sides of her mouth. It was stunning to my mom and I, as well as Abbie’s therapists. She looked so happy playing with the toys, and her beauty was breathtaking!

Today, Ray was napping after working a good part of the weekend. I had Abbie on her potty chair and was so pleased to see that her legs were bending enough on their own that her feet touched the floor. I started playing with her feet in celebration, and noticed that each time I tickled her foot her toes would point down. Another tiny thing that is HUGE. This is called the Babinski reflex, and since the accident Abbie’s toes have either not responded or have gone up instead of down, an abnormal response. I did it over and over and made my mom be my witness. After I was satisfied that it wasn’t an illusion I ran into the bedroom and literally jumped on the unsuspecting napper. In his groggy daze he couldn’t understand why I was so excited about someone named Babinski, but eventually awoke to share my glee.

Sometimes when I explain that I am standing on the promises that God has made me about Abbie, people ask how I receive those promises. My feelings are too fickle to stand on, and my desires are obviously too self-centered to be called “promises”, so…I pray and I listen. I listen to God by reading His Word every day. When the Scripture repeats something , it has special significance, as if God is saying, “Now, listen to this part really closely..don’t miss it!”

There were two special repetitions in my reading this week, on successive days. I cycle through the Psalms based on the date, so on Wednesday I read 26,56,86,116 and 146. God didn’t repeat Himself in a single Psalm, He lead me to the same verse in two different places, making it a very special message. “that I may/shall walk before the Lord in the land of the living.” (Psalm 56:13c, 116:9) My soul quickened as I knew these verses were meant for Abbie…and I know without a doubt she truly will WALK before the Lord in the land of the living! The next day the repeated verse was “I will sing, yes, I will sing praises to the Lord.” (Psalms 27:6c, 57:7) Scripture always amazes me in how it can be new every single time I read it!

Ray and I had a wonderful time Friday evening. I feel so fortunate to be married to him, because we truly do enjoy each other’s company, and can have fun together doing nothing. I’m so thankful that I’ve had a steady and true hand to hold during this journey.

“O LORD, my God, I cried to Thee for help and Thou didst heal me.” Psalm 30:2

Weds. 1/26/05

A quiet day for Abbie, except for a trip to the pediatrician. She has an ear and sinus infection, so is back on antibiotics. Please pray that these will clear quickly. I will be holding off on hyperbaric therapy until she is better, and may even skip her Friday physical and speech therapy. Kyle is also sick, and has joined his sister on the antibiotic bandwagon. Being home from school, though, has afforded him some special time with Abbie. Before the accident, Kyle was Abbie’s “Bubby.” She was extremely attached to him, and after invading my bed around 2AM, she would move on to Kyle’s bed once the sun came up. These past months have been very difficult for Kyle, and he has dealt with it by withdrawing a bit from Abbie. It has been sad to see, but completely understandable. Just this week though, he is beginning to interact with her more, and volunteered to do her tube-feeding while we are at the hospital today. He now sees that there is a special role for him in Abbie’s healing, and he is taking it on in his typical good-natured, cheerful, tender-hearted way.

My parents arrive tomorrow, to see a very different Abbie than the last one they saw. My dad had to return home when Abbie was still in the ICU, and my mom left shortly before Abbie was released from the hospital. I am anxious for them to see how far our little girl has come! Then, on Friday night Ray and I are getting a night away! For Christmas, Debbie said she wanted to come spend the night with Abbie at some point so we could have a night off. So, with Grandma and Grandpa here to look after the boys, this weekend seemed perfect. If you happen to be strolling Waikiki this Friday night, I’ll be the one with the goofy grin, dancing down the sidewalk. And yes..for those who live here….I KNOW it’s only around the corner from my house, and not very exotic, but those five miles are like a trip to the moon for us!

I hesitate to write this only because when Abbie does something new, it doesn’t mean she’s doing it every day. She may do something one day, and then not do it again for weeks. But, on Sunday Abbie got her laugh back!! There is usually a point in the late evening when she awakes from a nap and is very alert and smiley. On Sunday, when she was like this, I kept wondering , “What is that sound she is making?’ As I listened and watched her facial expressions, it became clear that she was laughing. Praise God!! I love to hear new sounds, but especially such joyful ones! One more step…

Sunday, 1/23/05

Another whirlwind weekend that leaves me feeling like, “Wow..Monday, already??” I imagine I’m not the only one whose clocks move twice as fast during the weekend. Yesterday morning I went to a meeting of the homeschool leadership here in Hawaii. I haven’t been able to continue leading my support group since Abbie’s accident, but I really just wanted the chance to see old friends. What a renewing and encouraging time it was, especially since the opening presentation was based on Galatians 6:9, “And let us not be weary in well doing; for in due season we shall reap, if we faint not.”

We did hyperbaric therapy on Saturday and Sunday, since the clinic was going to be open. It was good to get a couple “extra” sessions in, but I am feeling a bit drained. Each dive takes a little bit out of me, but nothing a good nap can’t fix. Abbie continues to do well during the therapy. She stays awake the whole time, and is generally content. She only gets fussy when she’s congested and can’t breathe well. I would complain about that, too!

Abbie continues to work hard at rolling over, and at scooting. When she is on her tummy every muscle from her waist to her ankle is just quivering with effort as she strains to move forward. She has been very happy that RJ has a four-day weekend, and has been able to sleep with her every night since Thursday.

We got a special mouse for the computer that attaches to her switch, so she was able to play a computer game this weekend. She had to hit the switch to select a song and make it play. She did really well, which encouraged me, since she seems to go in spurts with the switch. I will try to get a decent picture so you can visualize what I am talking about. There are scads of different types of switches, but the one Abbie is using right now is called a “wobble switch”. It’s a little ball at the end of a fairly sensitive spring, which is mounted on a gooseneck so that we can position it in an endless variety of ways. She has to hit the little ball to activate the switch. Again, something that sounds so simple, but which is a big victory for Abbie each and every time she does it.

Debbie will be coming back to work in the morning, praise God! We appreciated her before she had to take some time away, but now…I think we are all going to kiss her shoes when we see her tomorrow!

“Prayer which takes the fact that past prayers have not been answered as a reason for languor, has already ceased to be the prayer of faith. To the prayer of faith the fact that prayers remain unanswered is only evidence that the moment of the answer is so much nearer. From first to last, the lessons and examples of our Lord all tell us that prayer which cannot persevere and urge its plea importunately, and renew, and renew itself again, and gather strength from every past petition, is not the prayer that will prevail.” – William Arthur

Thank you for persevering with prayers of faith for Abbie…the answer is so much nearer!!

Wednesday, 1/19/05

Abbie and I got the first full night of sleep that I can remember – glory halleluja!! Sleep truly is one of God’s miracles, I think. A few hours in a row of it and everything looks and feels better. We are just plugging away at our daily routine of HBOT and working on her program. Her eating is improving each day. Not so much the volume she is taking in, but how she does it. Her lips now close around the spoon and will often remain closed while she chews and swallows. Another little detail that’s so easy to take for granted, but which Abbie has had to work hard to regain.

We have nursing today!! A new nurse, Sam, is coming to take care of Abbie. He took care of her in the hospital, so is no stranger to our family. He is a great nurse and a good guy, so we feel blessed to have him come to help us. I also think you can judge much about a person after hearing about his family. Sam said, “I used to be the oldest of three, now I’m the oldest of eight.” After he and his sisters were out of the house his parents recently adopted five children, four of them siblings, whose drug-abusing parents could not care for them. To take on raising a second family, especially one with complex issues, is heroic in my eyes..so, Sam comes from good stock.

Last night I put on a CD that we hadn’t listened to much lately. It’s a children’s praise CD that I bought as soon as Abbie’s pediatrician told me we could start stimulating her again after the accident. It played almost constantly while we were in the PICU. So many nights I sat by Abbie’s silent bed, listening to those songs, and listening to the other children on the floor who were not too sick to cry out for popsicles, play-doh, and mommy. Oh, I was so envious and I prayed to God that Abbie would be able to cry out loud again one day, and perhaps even say my name. Last night, I had trouble hearing those precious songs because Abbie was upset and giving me a good scolding. God gently reminded me, “See, I didn’t forget your prayer of so many months ago…I hear and answer them all…”

Sunday, 1/16

After midnight seems to be the only time to get to the computer..so please ignore typos and misspellings! This week has been a rollercoaster, although not because of Abbie. Someone we care very much about was widowed on Friday rather suddenly. It is so painful to watch someone you love be enveloped by the darkness of grief and shock. Once again, the lesson of “every day is a gift” was driven deep into our hearts.

But, God also brought medicine to our souls this past week or so. My sister Tara was visiting from El Paso, along with my just-turned-two-yesterday nephew, Cooper. Having a little person in the house, mimicking every word, excited to see each person who came through the door, and giving rounds of good night kisses was a sweetness we have been missing so long that we’d almost forgotten the joy of it. When Abbie would be sitting on her potty, Cooper would sit right beside her and hold her hand or “tickle her piggies”. To Cooper, nothing was wrong with Abbie, and there was no look of concern as he saw her trach or her feeding tube. There was just the instant acceptance and love that only a little one can give.

Abbie does continue to progress each day. As we were massaging her today she started to reach up to touch the mobile of black-and-white pictures dangling above the massage table. I thought it was an accident, or involuntary movement at first, but she continued to do it all day. She even tried to push the pictures along so that they would keep moving, which excited me not only about her arm movement, but also about her vision.

RJ slept with her last night, and is snoozing with her again as I type. No matter how I place her, I wake up to find her turned towards him with her hand on him. They don’t need words to communicate.

We were able to do hyperbaric therapy each day this week, and Abbie has become a “model patient” as the technician put it. She is comfortable and quiet the entire time, even when she doesn’t nap as much as I hope. I noticed adult patients taking books with them into the chamber, so on Friday I took a Gideon New Testament/Psalms/Proverbs in with us. I try to read the Psalms and Proverb for the day out loud to Abbie, and I thought it would be a great way to use our “underwater” time. I laughed hysterically when I got to Proverbs 14:4, “Wherever no oxen are, the trough is clean; but much increase comes through the strength of an ox.”

There are many times when Ray and I feel like we are living in a barn, and perhaps are raising farm animals who are masquerading as boys. This verse encouraged me that it is worth having a dirty trough (or, a trough I can’t keep full and a dirty house) because much increase will come, to the Kingdom of God I hope, if we raise our young oxen well.

I know I’ve forgotten a blizzard of hope-filled details in the blur of this week. But, we can see Abbie coming back a little more each day, and it is humbling to be allowed to see God at work up close.

Then the Lord answered me and said, ‘Record the vision, and inscribe it on tablets, that the one who reads it may run. For the vision is yet for the appointed time, It hastens toward the goal, and it will not fail. Though it tarries, wait for it, For it will certainly come, it will not delay.” Habakkuk 2:2-3 (a gift to me from Sue Searles, Luke’s mommy)

Monday, 1/10/05

Yes, I have been lazy – this is the first update of the new year and there is SO much to catch up on! We had a wonderful couple of weeks with the kids home from school, but having quickly gotten back to living life at full speed. We are currently without any nursing support. Since the beginning of December we only had one nurse, Debbie, who I’ve told you so many wonderful things about. Recently Debbie’s husband has become very ill, and the outlook is not positive. Would you keep her and her husband in your prayers?

Now, as far as Abbie goes..she continues to have a twinkle in her eye and is gaining new skills on almost a daily basis. Some of the most exciting ones since the last update involve moving on her own. She can now help herself scoot down her specially-made slide (thanks Uncle Jack!), and last week she rolled from her tummy to her back several times. Today during OT the therapist rolled her onto her tummy and Abbie tried to pull her knees under her body, which shocked Arlene and changed the course of the session. She is trying so hard, with crinkled forehead, quivering legs, and straining arms, that crawling is just a matter of time. It won’t be long until she is getting around on her own, causing trouble and adventure just like normal.

Last week I spoke with the director of Rehab at Kapiolani (the hospital where Abbie receives her therapies) about a new therapy we are going to try with Abbie call “Vital Stim.” It involves using electrodes to stimulate the muscles in her mouth and throat to assist with relearning swallowing. I researched it at vitalstimtherapy.com and was astounded at the results of the clinical trials. The success rate difference between this therapy and traditional therapy is staggering, and we are hopeful that Abbie will be greatly helped. But, there was another blessing in that conversation. To provide Vital Stim the hospital needs to purchase a machine costing $1500. I told Susie that I thought Abbie’s Angels Fund had around three thousand in it, so we shouldn’t have any problem paying for it. She smiled and said, “No, Tiffany, there is more than six thousand dollars in the account.” I sat in stunned silence. Your generosity is overwhelming! The exciting thing about the Vital Stim machine being the first Angel Fund purchase is that it will immediately be able to help many kids here in Hawaii, in addition to Abbie, which is exactly what we had in mind when we set up the fund. So, a big mahalo to all who have contributed to the fund; I will keep you posted on the good things we are able to accomplish through your support.

Current prayer requests include Abbie’s ears becoming totally clear, Abbie moving on her own more and more, and her ability to eat by mouth improving. Would you also lift up all of our other kids? Without any nursing help we are edging towards total chaos, as opposed to the manageable chaos that typifies our life. They really need Ray and I, and we are trying to be there for them as much as possible, but there’s only so many hours, hands, and laps.

God has been so faithful in giving me kernels of encouragement each day, usually through my Bible reading, but sometimes in other ways. A song by Selah stuck in my heart until I looked up the accompanying verse, Acts 16:25, “But about midnight Paul and Silas were praying and singing hymns of praise to God, and the prisoners heard them.”

Some of the lyrics to “I Bless Your Name” are:

“In prisoners’ chains

with bleeding stripes

Paul and Silas prayed that night.

And in their pain began to sing

Their chains were loosed

And they were free….

Some midnight hour

If you should find

You’re in a prison in your mind

Reach out and praise

Defy those chains

And they will fall

In Jesus’ Name.”

What stood out to me, in both the song and the verse, is that Paul and Silas weren’t freed because they were humming to themselves and thinking pious thoughts, the prisoners heard them. God calls us to shout our praises when we are bleeding and seemingly bound. We aren’t to wait until after our rescue comes to praise Him. And if the gift of a singing voice isn’t one bestowed on you (I am in that boat), then sing your praises with your life – let your actions be the harmony, your words the melody, and the reflections of your heart the meter. The very moment when it seems that you have no reason to praise is the exact moment when your praises are most powerful, both for you and for the prisoners of whatever kind who are within earshot.

One last thing – thank you to all who have prayed for Luke’s mommy, Sue. She and her family welcomed little Lily Joy on 12/20. Please continue to remember Sue with prayers for rest and stamina.

The updates may become infrequent (again!?!) while we are without nursing. I will try my best, but please understand that whatever time I do not spend typing is spent helping Abbie get better each day. Thanks for your unfailing support – it is working a miracle!

Tuesday, 12/28, 11pm

A day of incredible, unpredictable blessings that continue to come to us because of this adventure we are on.

The phone rang around noon, and on the other end was Eddie Spier. Eddie is the brother of a friend of my brother-in-law’s brother – but, more importantly, he is a brother in Christ who has been praying for Abbie since the first day her website was up. He and his family were winding up a vacation on Maui, and would be passing through Honolulu later in the day. He asked if they could rent a car and come visit us during their layover. I laughed at that proposal…the rent-a-car part, I mean.

I met the Spier family at baggage claim and within one minute I knew that our kids would hit it off. Their oldest son, Tal, was wearing the same brand of skater shoes that Kyle wears. And, I was right. The evening passed much too quickly. An observer would’ve thought that our families had been friends for years. By the time they were heading back to the airport our kids were already asking when we could go to Colorado to visit them, and Ray and I were wishing that they could spend the night.

Eddie almost didn’t call because he felt that he knew so much about us, but he was a stranger to him. As he put it, he felt like Abbie was kind of like a rock star and he didn’t want to be a stalker. I am so glad he called, not only for the chance to meet them, but in a way they were representatives of so many of you. We have not yet met you, but you continue to faithfully lift Abbie up in prayer. We were glad for the chance to thank at least one family face-to-face.

And, it was a blessing to see Abbie through the eyes of others, especially Autumn, who is six. She was pushing Abbie around the house in her wheelchair, and doing a very good job, I might add. She suddenly stopped, turned to me and said, “Boy, am I lucky! This is really good practice in case I have a baby like Abbie some day.” I wanted to cry, but worried that she might think I was sad. We were amazed today, in a very tangible way, at how God knits His family together. Among those who love the Lord, there are no strangers.

Monday, 12/27, 8pm

It has been far too long between updates, and I apologize. As we were reading the Christmas story in Luke I noticed that twice it talked about Mary treasuring things in her heart…watching and listening, and meditating on what God was doing, but not saying anything. That’s kind of where I’ve been for the last couple of weeks. I have much to treasure this Christmas, and much to reflect on.

Looking back on what has happened not only in our family this year, but also in many families at Ray’s workplace, this seems like a year of “taking away.” Cancer many times over, aneurysms, Abbie’s drowning…lives were changed permanently in an instant. Yet, as I looked deeper I saw that this was a year of more giving by God than I have ever experienced or witnessed.

Ray and I agreed that we would trade anything to be able to reconstruct the events of May 3rd. But, if we were allowed to do that, we would lose so much in the deal. We are different people now. We know to the depths of our souls that all of God’s promises are true. The fears created in a parent’s imagination hold no power over us anymore. Something dreadful actually happened, and you came alongside us, God carried us, and miracles still happen. You can never truly know your substance until you are tested, and I have found that although I am made of dust, the God who fills me is powerful, bold, trustworthy, and compassionate. The more I get myself out of the way and rely fully on Him the more this turns from a journey of survival into a journey of transformation.

Christmas was a joyful celebration of the birth of Christ…the birth of Hope. If He had not been born and lived His destiny, we would’ve had no hope to sustain us through this year. This has always been true, but we perceived it in a deeper way this year.

On Christmas Eve I cried as I wrote Abbie’s name on a gift tag. So thankful that her name does not signify only a precious memory in our family, but a growing, feisty, loving little girl who has an amazing life yet to live.

I wrote about our Christmas miracle in the guest book, but it’s worth writing about again. I prayed all month for a something special to happen with Abbie for Christmas. God delivered early. Last Tuesday Ray had just finished helping to pattern Abbie when he leaned down and spoke to her very intently. “Abbie, do you know how much I love you? Daddy loves you soooo much!” She then lifted her head and answered, “I love you.” Her articulation wasn’t perfect – she sounds like Scooby Doo when she talks, but there was absolutely no doubt in Ray’s mind about what she said. He and I shed tears of wonder, joy, and thanksgiving at God’s graciousness. I was sad that I didn’t hear it myself, but then realized that it was her Daddy who really needed to hear her voice.

On Christmas Day Abbie ate 60cc of applesauce without gagging once. This not an insignificant amount, and it seems that we are moving past the “tasting” stage, into really learning how to eat again. She responds well to lots of encouragement. I just have to remind her, “Abbie, you are a great swallower. You are doing a fantastic job. I KNOW you can do it.” In one way it seems strange to celebrate her eating a total of 4 tablespoons of food, when the goal is to eat normally. But, when I remember that last month she really wouldn’t swallow anything, the progress is astounding.

Having the kids out of school has afforded time for some sweet luxuries. Abbie’s favorite is having RJ sleep with her each night. He has such a tender spot for his sissy, and is pleased to know that he matters so much to her. Last week he told her, “Abbie, I think I’m going to sleep in with the brothers tonight, but I’ll sleep with you again tomorrow night.” She promptly commenced throwing a fit which ceased only when he relented and promised to sleep with her that night.

Today, Ray and I received the most thoughtful and meaningful gift we’ve ever gotten. A package arrived from Los Alamos, where we lived until 2002. I thought my dear friend, and ardent scrapbooker, Linda, had sent me a blank photo album to record Abbie’s recovery. Instead, I opened the cover to find “Love from Los Alamos” on the first page. The pages that followed were filled with letters and pictures from people we so dearly love. It was like a long-distance family reunion, and our tears flowed.

One letter really pierced our hearts. It is from a precious man, Loring Cox, who Ray first got to know as Loring’s wife Ruth was spending her last days in Ray’s hospital. We have loved him ever since and were excited to hear from him, but the story in his letter was especially riveting…”In a small measure I am able to appreciate what you are experiencing. I have a grandson who as a youngster had a wonderful voice and spent four years with the American Boy Choir, and traveled all over the world in concerts. When he was 17 years old he suffered a stroke due to a ruptured blood vessel in his brain. He almost died. With expert medical care he recovered, but it was a long process. There was a question as to whether he would ever sing again. He had to learn all over again how to eat, swallow, walk, talk, and function as a complete human being. But, this spring he was graduated from St. Olaf College – with a major in voice!”

I just praise God for how He knits us together, and how what one of us endures can so encourage another. The “Love from Los Alamos” album just reminded me again that once God binds hearts together, nothing can separate them…not the Rocky mountains nor the Pacific Ocean, nor any other created thing.

Please pray for Abbie’s left ear. It is infected and actually bled a little bit on Christmas Day. We have held off HBOT waiting for it to clear. She is also cutting a molar on her lower left jaw, so she’s uncomfortable to say the least.

“Shout for joy, O heavens; rejoice, O earth; burst into song, O mountains! For the Lord comforts His people and will have compassion on His afflicted ones.Isaiah 49:13

Tuesday, 12/14, 11pm

Abbie passed her trach test today!!

This means we have the green light to begin the process that will end with the removal of her tracheostomy device. Abbie’s trach is 4.5 mm in diameter. The plan is to downsize her to a 4.0, then a 3.5 and then a 3.0, spending a couple weeks in each size. Once she tolerates the 3.0 the trach will be capped, and if she handles that it will come out. Her ENT doesn’t want to decannulate her before flu season is over.

I asked her what that meant for a timeline and she said, “February…early March would be even better, but February is OK.” At first I was disappointed because this seemed like a delay, but when I counted up the weeks we’ll spend downsizing her trach I realized we’ll end up in February anyway.

So, tonight we put her in a 4.0 and she is sailing right along. Thank you for your prayers about this! They were answered today as Abbie was scolding all in attendance while the camera was threaded through her nose and down to her throat. She protected her airway despite her histrionics, and showed she’s ready to get on with things.

My Christmas present arrived yesterday during Abbie’s oral motor therapy session. I was holding her on my lap and she was eating applesauce for the therapist. I was so excited to have her actually see Abbie doing this. We have spent much time sitting through sessions where Abbie didn’t do much, so this was a session to savor. But, that wasn’t the present. Ray called early in the session and asked me to meet him at the ER entrance. To say I was “aggravated” would be polite and proper, and a severe understatement. But, I left Abbie and hurried downstairs. I didn’t even see him outside, and became even more “aggravated.”

Then I saw a van pull up that looked like the one we ordered. A moment later I saw that Ray was driving it, and pause, pause, pause….then it finally clicked. Hey!! That’s our handicap van! I started screaming and jumping up and down. The group of younger guys outside with me looked at me like “What is her deal? It’s a MINIVAN!!” Ray had been setting me up for weeks by telling me it wouldn’t be here until the 19th or so. It is so much easier to transport Abbie, and a lot easier to drive than my beloved Suburban. Now, if we can just manage to keep the boys from breaking the ramp…

I must ask you to pray for a family that has become very dear to my heart. I have mentioned their little boy, Luke, before. He drowned on August 30th when he was 18 months old. His journey is so similar to Abbie’s that his mom, Sue, and I have formed quite a bond. Well, Sue is due to have a baby very soon, this week most likely. Would you just lift her up..pray for extra strength, a smooth delivery, a healthy baby, and comfort. I know how agonizing it is to wonder if you are doing all you can to get your child better, and Sue is going to be very busy soon. Please just pray for confidence in the Lord to cover the gaps when Sue can’t work with Luke. I know how you have carried me, and I want more than anything to be able to carry her in the same way.

I pray that this day will bring joy to you..despite single digit shopping days until Christmas, despite it almost being a sure bet that at least one person in your house is sick, despite whatever burdens may be weighing on you…the birthday of the King is near – proof that sometimes the most profound things happen in the most ordinary places, and a reminder that God entered our world as a baby, who grew to be a man that gave His life to save us — not because we are worthy, simply because He loves us that much.

Sunday 10/3, 10:30pm

Abbie marked 5 months since her accident by visiting the ER, just as we did on the third of last month. This trip, however, was much less eventful. Abbie has been generally uncomfortable for the past few days, vocalizing when in pain and crying sometimes. I was concerned that perhaps she had another UTI, and after speaking the on-call pediatrician, I packed her up for the trip to the ER. The test came back negative for a urinary tract infection – Praise God! But, they also tested her stool since she’s now had diarrhea for five days..we’ll get those results tomorrow.

We have slowed down the rate of her feedings this evening, and that seemed to help. It may just be that her tummy needs some time to adjust to its new configuration.
Even though she hasn’t been feeling up to snuff, Abbie has done some exciting things in the last couple of days.

On Friday we had eight graduate students from a multi-disciplinary program come to see Abbie in her home environment. Among the group there is a pediatrician, a social worker, a special education teacher, and a physical therapist. We had a good conversation, but the highlight was when the PT put Abbie through a little workout for the others to observe. We awoke Abbie from a nap, yet she still responded with interest to those around her and attended well to a story book – especially when her audience played along by making animal sounds. She responded to questions with clucking, moving her hands, and even twitching her whole body for an emphatic “yes!”

The therapist then started working with Abbie’s arms and legs, which bent nicely. She got Abbie up on her hands and knees, during which Abbie held her head very well. By the third time in this position, Abbie was pushing with her arms, trying to bear some of her own weight. This was unbelievable for many reasons…Abbie hasn’t been on her hands and knees since her accident, because it requires flexibility in both her arms and legs, as well as head and trunk control. It was amazing she was able to control her head after being in bed for a month, and her attempt to help with her arms was VERY encouraging. In the back of my mind I was silently celebrating because “hands and knees” is a milestone towards walking on “Abbie’s Roadmap to Victory.” We still need to shore up some of the foundational milestones so that she can become proficient in the hand and knees position, but she sure gave us a lot of of hope!

She is becoming more consistent her communication through clucking. She obviously knows what she wants and is answering “yes” by clucking and “no” by silence. This has included questions about whether she wanted to read another story or just rock in silence, and whether she wanted to lay in a certain position. It’s also helped me better ascertain when she is in pain. Another big step was when she opened her mouth on command so that her nurse could clean her tongue. This is a huge milestone towards being able to eat (again – it’s listed on Roadmap!)

We have been working on this for a long, loooong time, so it was a big victory. Now we just have to work on consistency. Every day, even in the midst of her discomfort, Abbie is showing us new signs that she is still our girl – like the time this Saturday when she gave her emphatic, eyebrow-raising, body-twitching “yes” to her Daddy when he asked her if she’d like to rock with him and watch college football. No girly-girl stuff for her (except the 50 hair ribbons she now owns!), she is still our ball-obsessed tomboy! She cried when Ray told her goodbye as we were on our way out for Date Night – heartbreaking and heart-soothing at the same time.

It’s been kind of an emotional weekend, as outside things have uncorked long-suppressed emotions in me. For date night, Ray and I went to see “Ladder 49”. To “Abbie’s Friends in the Firehouse” – if you are reading this, please know I thought of you throughout the entire movie, and through my tears was even more in awe of what you do every day.

I came home that night and just cried and cried…I realized that I had to start suppressing my emotions the instant that the accident happened so that I could be able to give Abbie CPR. I’ve never stopped. I’ve remained focused on today, tomorrow, therapies, trying to be Mom to my other kids, trying to be a wife to Ray, fixing my eyes on the Hope that I have, and attempting to absorb the pain and sadness of those closest to me.

Late in the movie there is a scene where they are trying to resuscitate a girl in the back of the ambulance, and it isn’t working. It physically and emotionally took me back to that day, but in a place of safety so that I could experience the emotions of that day and let them go. Friday night, for the first time, I finally cried my own tears, for me.

Saturday we went to the UH football game, where the 29th Brigade was fare-welled before they begin an 18 month deployment to Iraq this week. Seeing the ranks of soldiers march by, singing so proudly and beautifully in Samoan, broke my heart. Seeing the soldiers at the game later I could smell the sweetness of the farewell lei around their necks at the same time that I watched them pushing baby strollers and holding the hands of little girls too young to know what is coming.

It all comes down to who we love, and how well we love them. Thinking about the impending separation of so many families (as well as the current separation of so many more), and the very possible fact that some of those families won’t be reunited, made me hold my kids a little tighter and pierced that place in my heart that Abbie’s arrow found – the place where nothing else matters but the hands we hold.

Thursday, 9/30, 9PM

This week has flown by! We saw Abbie’s pediatrician on Tuesday, and the Dr. was so pleased with Abbie’s recovery that we don’t have to go back to see her for two weeks. We discussed again the EEG report. She told me that when she went back to look at it again, the actual wording was “partial seizure activity”. Based on that, and the fact that there are not really physical signs we can track, her seizures are not something that we are really able to, or desire to , medicate.

have been able to wean Abbie down to one-fourth of the oxygen that she was on when she came home. She should be completely off of it by tomorrow, or Saturday at the latest. If things go well, I would like to take her to church on Sunday.

Her nurse, Linda was ecstatic at the improvements in Abbie – tonight is the first time she’s cared for her in a month – and although Linda visited Abbie in the hospital, tonight has been their first chance to play together. She was thrilled when she asked Abbie to find her nose, and Abbie stuck out her index finger. Abbie was very happy that Linda brought her favorite jack-in-the-box tonight. She would cluck away when Linda asked if she wanted to play with it, and was very reactive when the bear would pop out. She also helped to hold the box and turn it, which seems minor, but is actually a good commentary on both her muscle tone and hand strength.

Abbie and I burned a little midnight oil last night, rocking and reading books. It is easy to tell which are her favorites..”Polar Bear, Polar Bear, What Do You Hear?” and “5 Little Ladybugs.” What’s encouraging is that these were her most favored books before the accident. We also sang many, many off-key rounds of “This Little Light of Mine” last night, since she was very proficient at raising her index finger when I asked her where her little light was. The key to everything in recovery and rehab is consistency, in other words can she do something a number of times in a row rather than just once. Her little light was going up and down over and over last night, and I rejoiced with just how brightly it is beginning to shine.

Today I worked her harder than I have since she left Rehab. Chase and I got her standing up, and she did beautifully. Her knees used to hyperextend and lock when she would stand, but today they were nice and soft. In fact, when she wanted a break, they would “melt” and she would almost end up in a sitting position, until we reminded her to stand up. She was very irritated with sitting with her legs straight in front of her – I think her muscles are tight – would you please pray for her to work back into her normal exercise routine comfortably?

Please just continue to pray for her health and healing ..she now seems to be battling diarrhea. Well, no “seems” about it, she is. I am praying for wisdom to know if we need to adjust her feedings, which are now including significantly more water. It is so hard to know what to do sometimes.

As I was dozing this evening, a snippet of a show kept me from falling asleep. The narrator was talking about the day Chuck Yeager broke the sound barrier. It wasn’t supposed to happen that day; the planned flight was scheduled for 0.97 mach. As his plane pushed toward the barrier it started to shake violently. At that time many theorized that a plane would be vaporized when it passed the sound barrier. The shaking intensified the closer he got to passing the 1 mach mark, and he had no assurance about what would happen if he did. As he unexpectedly set the record that day an amazing thing happened. As soon as he passed the barrier, all was calm. The last few clicks on the speedometer were the most difficult, but once the hurdle was overcome, he was cruising peacefully where many thought he might have been destroyed.

When I feel our little airplane start rocking and rolling I just hold fast to the thought that more resistance means we are getting closer to a breakthrough. As opposed to Chuck Yeager’s adventure, the true Pilot in our unplanned flight has assured us ahead of time about the calm on the other side of this test, and so we press forward expectantly.

Monday, 9/27, 10:30pm

A great birthday for Kyle, although Ray and I have determined that Dave and Buster’s is really more Kyle’s style than is Morton’s We came home after dinner and Kyle unwrapped his presents with Abbie on the floor in the midst of all the joyful chaos. She is really doing well today.

Her nurse this evening, Debbie, is now a treasured part of our family. She takes such wonderful care of Abbie, and for some reason after 8 hours of caring for Abbie the entire room is neat and organized. I am more of Florida school of care management- in other words, it looks like a hurricane has hit the room every single day. It was so encouraging to hear Debbie’s remarks about Abbie this evening.

She was astounded at her muscle tone, saying “That girl was doing the splits!!” Right before she left tonight she looked at me, hesitated slightly, and then said, “You know, I think she is starting to come around…” I just grinned and said, “Yes, I know.” Debbie explained that she asked Abbie to cluck if she wanted her diaper changed. No cluck. Then she asked if her diaper was dry and she wanted to be left alone – Abbie started clucking. Debbie checked her diaper to find it dry as a bone. Earlier in the day Debbie was doing exercises with Abbie, and one particular exercise was really ticking Abbie off. Debbie told her that if she did one movement then they could stop…and she did. This matches what we are seeing on a daily basis from Abbie, it is just exciting to hear it from another person!

Tonight with Kyle I felt I reaped a harvest from some of the seeds sown with tears. He went on and on describing a movie he saw this weekend – every little detail and plot twist. You know the situation, eventually you just start nodding and mentally making a grocery list. But tonight I was transfixed by every word he said. I could not have cared less about the movie, but just listening to the sound of his voice, watching the expressions on his face, and not taking one single second of it for granted was a gift that will be etched on my memory. Not all of the heart changes of this journey are heart aches, some of them are very profound treasures. Being able to be fully present in the moment and praising God for little details I so quickly brushed by in the past are changes that I am grateful for, and they will remain after this passage is complete and we are telling victory stories around the campfire.

Monday, 9/27, 1:25pm

HAPPY 12th BIRTHDAY KYLE!! It is so wonderful to be a complete family on this day! We do something special for our kids’ 12th birthdays, and allow them to pick the restaurant of choice for an “alone dinner” with just Mom and Dad. So, tonight we’ll be treating Kyle to Morton’s – see, there is a bonus to having five kids, knowing that I’m guaranteed that molten Godiva cake at least four more times!

Abbie is doing well today, although she is having noticeably more secretions. She was able to sit up on her own a few times after bath time today, which thrilled her Mommy’s heart. She particularly enjoyed having Chase up on her bed with her, and demonstrated this with a maraca concert.

So many of you have inquired about how to donate to the fund we’ve established in Abbie’s honor. To be honest, it’s humbling and exciting at the same time. Humbling to think that you care that much about our sweet little girl, and other kids like her; and exciting because I really think we can make a difference. There is now a new section on Abbie’s site called “Abbie’s Angels” where you can find all the information about her fund. There is already a working group focusing on pediatric rehab in Hawaii, and I will be joining them for a meeting in a couple of weeks. I will keep you posted so that you will know concretely what we are aiming to do, and how “Abbie’s Angels” can help make our goals reality.

In fighting my “I don’t care about tests/I hate tests” schizophrenia last week, God revealed something to me that has put it all to rest, I believe. I was thinking about Abbie’s MRI, and how devastated her brain appeared. White is a color you do not want to see on an MRI because it indicates cell death. There was one particularly snow white area of Abbie’s brain, and the neurologist explained that it was the lobe where the vision functions were located. She prepared us for the seeming certainty that if Abbie survived, she would be blind. Well, I’m not saying she has 20/20 (yet), but that little girl is looking out her window right now enjoying the flowers and leaves, and boy, does she know the people she loves. So, if the worst injury was to her vision area and she is now seeing, what does that say about the other areas of her brain that were affected? What is says is that God is still a God of miracles, and they don’t show up on film.

Sunday, 9/26, 11:30pm

I am sorry I am so overdue with this joyous update – as I’m sure you can imagine, things have been a little busy around our house this weekend. Abbie is home!! We got her home around 8pm on Friday evening, and have fallen right back into the routine of caring for her. It would take pages to describe all the evidences of God’s goodness that we have seen just since Wednesday, so I’ll quickly go through the medical highlights first.

Abbie is doing very well after her surgery. The G-tube site is still tender, but we have her on just plain Tylenol today, after having her on Tylenol with codeine on Friday and Saturday. She is handling her feedings wonderfully, and is so much more comfortable. One easy way to tell this is her muscle tone. There is a tremendous difference since the surgery. I would almost call her arms floppy, in a good way. Her hands are beautifully loose, and she will give me “spaghetti legs” whenever I ask for them. This will make many things, from using assistive technology and sign language, to completing a physical therapy routine so much easier for her.

The ENT surgeon who placed her trach came to her hospital room on Thursday and scoped Abbie’s trachea. It looks wonderful down there, with no irritation or extra skin growth. That was very good news, but I liked the follow-on conversation even better. The surgeon said that all she needs is to hear from the Gastroenterologist that Abbie is handling her feedings without reflux or aspiration, and then we can talk about decannulation (removing the trach)! Since we went ahead with the Nissen procedure we are very confident that Abbie will pass that test, and are hoping to ditch her “necklace” by Christmas. This would be a major step forward for Abbie’s comfort and health, and for ease in caring for her. Would you join us in praying for this to happen?

Abbie is still requiring extra oxygen, so we have some new equipment at home. We are hoping to wean her off of this soon, and her sats and secretions have been very good since we got home. Her need for the oxygen and constant humidification have limited our ability to move her around the house – she is pretty much limited to the family room where her equipment is. Please pray that her lungs will bounce back to normal soon so that we can go out and about and so that she can start wearing her talking trach valve again.

Of course, one of the best things about her recent surgery is seeing her entire face again! I got the first real smile on Saturday – it was just a flicker and passed quickly, but I saw it. When she had the tube and tape on her face the best we could get was a little, crooked, closed-mouth smile. She is also moving her jaw and opening her mouth much better since the surgery.

I’d forgotten to write about her EEG results. On her recent test there was some seizure activity. We think this may correlate to little staring spells she has. We are going to try to determine this definitively, and if we can do that, then her neurologist will start her on medication to control the effects of the seizures. We are not that discouraged by this news, as seizure activity is very common after a brain injury, and it is mild in Abbie. On the up side, overall the EEG showed improvement in brain activity over her last EEG. Again, little steps forward add up over time.

Right now Abbie gets six feedings a day, including one from 12-1am and one from 4-5 am. We really are on a newborn schedule now, so I would truly appreciate your prayers for stamina for Ray and I. We will take Abbie to see the surgeon for a follow-up on her Nissen in 3 weeks. I am hoping at that time that we will be able to drop one of the night time feedings.

I wish I could sum up the kindnesses we’ve received this week as succinctly as Abbie’s medical condition, but there have been so many. For example, on Wednesday I was running home for our small group Bible study and stopped at the store to pick up soda and ice. There is a song that has been a theme song for Abbie and me through this journey. I often sing it to her while we are waiting for therapy or rocking in the chair – it’s “Blessed Be the Name of the Lord” by Tree63. As I pulled into the store parking lot this song came on , and I was just overwhelmed. So I parked and put my face in my hands, praying and praising and crying. Just as I was finishing a woman opened my car door, and said, “Are you alright?” I was kind of stunned, but answered, “Yes, No, Yes – I was just praying.” She lit up and said, “Oh! I have a prayer group – that’s what I do, I pray! I have lupus, and it reminds me to pray for people. Can I pray for you?” I quickly told her about Abbie and then we parted ways after a hug. I was humbled by her boldness and caring. I know if the situation had been reversed, and I’d seen her crying in her car I would’ve driven away whispering silent prayers for her, but would’ve never had the courage to approach her…what a lesson in what it means to truly love people.

On Thursday Abbie’s pediatrician came to see her and brought me a gift, a book called, “God Always Has a Plan B – For Women”. Like she doesn’t have a bazillion things to do – here she is bringing me a book, for the second time! Of course, I read the whole thing that day, and there was one part that made me think of you all. It was about a woman diagnosed with terminal cancer who decided that if she was going to die she was going to eat all the chocolate she wanted on her way out (no, that’s not the reason I thought of you, just the reason I felt such affinity for her). At the end of the story, in which she overcame the odds, Sue Buchanan wrote “Dear Lord, don’t let me become frantic when I hear the statistics. The computer doesn’t know me – doesn’t know how much I laugh and cry, how well I’m loved, who my friends are, or how I’m prayed for. It certainly doesn’t know that you have a timetable for my life and your timing is perfect. Amen” I feel like Ray and I are on the end of such a one-way street of receiving so much love, support and prayer for Abbie…we cannot imagine how to begin to thank all of you.

One last thing..we met with the rehab team at Kapiolani Women’s and Children’s who will be working with Abbie twice a week. Prior to that meeting on Friday they asked me what our long-term goals for Abbie were. They didn’t even give me strange looks when I said, “Walking, talking, eating, and doing all the things little girls do.” They are incredible people. They took those goals, and where Abbie is now, and produced a chart showing all of the major milestones between here and there in all the areas we will be working. We are calling it “Abbie’s Roadmap to Victory.” Seeing it in black and white makes it look even more possible, and I am itching to get started. Please pray for them (Lisa, Jayna, and Arlene) as they bring their talents, training, and positive attitudes to help Abbie in her journey back. It is “when” not “if”!!!

Thursday, 9/23, 7:10am

Abbie continues to impress us with her ability to bounce back. Yesterday we were able to double the amount of formula she is fed to 150ml/hr. This is much more than she could ever handle over an hour before the surgery. She was also transitioned back to room air on Tuesday night, and did not receive any extra oxygen on Weds. She was more subdued though, and Ray just called to say that she desatted quite a bit through the night, so we think she may still need the supplemental oxygen. Please pray for her lungs and her ability to breathe adequately.

She is still uncomfortable, which is to be expected. If I had undergone what she did, I would be a big baby, screaming for the morphine pump. We are hoping that each day will find her feeling better.

As far as we can tell she is still on track to come home on Friday. All of us are so excited to have her with us again, since we have again been separated for two months. It’s almost hard to imagine what life will be like when I can be here for the other kids during the day, and still be with Abbie-girl.

There is lots more to write, but no time this morning…I am not yet a professional at the get-ready-for-school shuffle, and it is showing this morning. I most likely won’t be home again until Abbie is with us! So, I will try to post her “Homecoming- Round 2” pictures this weekend. Thank you for your continued prayer support – please keep it up, it is making all the difference!

Monday, 9/20, 7pm

Abbie came through the surgery brilliantly!! She ended up being the first case of the day, so we took her down to pre-op around 7:30 am. It was almost noon when the surgeon came to the waiting room with a smile on his face, just what I was waiting to see. He was very pleased with how things went, and gave me a sheet of four pictures from the laparascopic camera for Abbie’s scrapbook. It was strange looking at the inside of my little girl, but I praised God for how fearfully and wonderfully made she is. And, how tough!

As soon as I walked through the recovery room door I could see that she was not on a ventilator. She was already breathing on her own despite having just had some Versed. Wow! So, she did not have to go to the PICU after all, and is back in the room she left this morning. Which, thankfully, still has the sleeping chair for mom!

She is in quite a bit of pain, however, which we are controlling with morphine. Please, pray for her comfort through this night and tomorrow. We are hoping that the pain will significantly decrease by Wednesday. We will start feeding her through her G-tube tomorrow at noon, and are planning to give Abbie five one-hour feedings per day. This will give us a lot more flexibility through the day as opposed the the two-hour feedings she was receiving previously.
I spent all evening praying over Abbie last night, and it was a joyful time for me. Finally, I just looked at her and said firmly, “Abbie, you are all better now, so it is time to sit up.” Almost immediately she straightened and lifted both of her arms forward and pulled her head forward….she was straining to sit up! My faith and belief have been growing throughout this journey, but this was a thrilling surprise! God is in the midst of revealing his miracle in Abbie!

Saturday, 9/18,10 pm

What a whirlwind day! Crystal came down to the hospital early this morning to assume Abbie-duty so that both Ray and I could attend the benefit for Pediatric Brain Injury Rehabiliation this morning. It was a gorgeous morning at Common Groundz, the café hosting the benefit. We were right on the water, sun beaming down, with nice trade winds cooling things off. FM 95.5 The Fish was broadcasting from Common Groundz, so Ray and I were able to share a bit of Abbie’s story and the need for more rehab resources.

The hosts, Kim and Dave, were so kind, but the first question was tough. “Tell us about Abbie…” How do I condense a heart full of love into a few sentences? I just said, “She’s a little girl with four big brothers – that gives you a good idea of what she’s like. She’s a firecracker, who has been the light of our family since the day she arrived.” Then Kim gently asked me to tell her about “The Day”..I tried not to stumble or break down, but it was hard.

We are so grateful that they allowed us airtime to broadcast the needs of children like Abbie here in Hawaii. Pastor Rob and Robin Moore, owners of Common Groundz were giving away free Icees in return for donations to support Peds Rehab (although I think our boys may have consumed enough Icees to cut into the amount collected!) We so appreciate them kick-starting our efforts with a fun day like today! Ray and I are in the process of setting up a formal account, to be administered by a foundation. If you are interested in helping improve pediatric rehabilitation opportunities for Abbie and kids like her, we will have information on the website soon about how you can do that. We are so grateful for the many inquiries we’ve received!

Abbie had a wonderful day as well. Our friends the Knapps stopped by to visit, and Abbie was doing a lot of good looking at us and responding to our questions while sitting in her new wheelchair. I later got her up in bed for a good workout. She was able to sit all by herself for over 5 seconds, which was a big surprise given how long she’s been sick and in bed. She had very good head control in a lot of different positions, which was also encouraging. She then opened her hands when I asked her to, which is a task we have been working on for a long time. She is also able to raise her little index finger so that we can sing “This Little Light of Mine.” Overall, she just looks different a lot of the time…just more aware and interested in what’s going on around her.

We had a big meeting at the elementary school yesterday to discuss Abbie starting school. We have tentatively planned for her to start on October 12. She will be going a couple hours a day to begin with, and probably only three days a week initially. Abbie will be receiving physical, occupational, and speech therapy at school. She will only have two classmates and will have a full time aide. She will probably also have a full-time Mommy accompany her for a while as well! The staff is very kind and very motivated to help Abbie. We are looking forward to seeing how she responds to this new phase in her recovery.

Please pray for the staff as they prepare for Abbie, as she will present some new and unique opportunities for them. And, please pray that it would be a positive experience for our girl. I am home tonight while Abbie gets some Daddy-time. She was very excited to hear that her Daddy was coming to see her, and I’m sure the feeling was mutual. Ray is just looking forward to getting her home and into the rocking chair with him!

We are in a very hopeful and optimistic place right now…thank you for lifting us there with your prayers! And, most of all, thank you for you continued commitment to pray for Abbie’s healing. We know that God loves to hear his people pray, and that He truly loves to answer.

Friday, 9/17, 5pm

Just time for a quick note before I head back to the hospital. Abbie’s EEG went fine today, at least the test-taking part of it. We won’t have results until tomorrow. But, she laid down and went to sleep with all the probes on her head just like she was supposed to. She also did well at physical therapy today, where we were able to get her into a nice “criss-cross-applesauce” sitting position. She is still needing extra oxygen, so we probably won’t be bringing her home tomorrow.

Speaking of tomorrow…the benefit in Abbie’s name will be at Common Groundz in Hawaii Kai. Many of you have inquired about donating through the mail. We are in the process of setting up an account in Abbie’s honor to be used for pediatric brain injury rehabilitation in Hawaii. Once we have the fund set up I will put information about it on the web site. We are touched by your generosity, and want you to know that you will have a big impact on the children of Hawaii who need the services and equipment your donation will buy.

Ray got to spend some time with Abbie yesterday, which is difficult during the work week. I was so glad to hear the excitement in his voice as he said, “She is just so THERE, Tiffany, she is just so there!” I have been seeing it for a long time, but it’s different for him to see it with his eyes rather than hearing about it from me.

Ihope that you have a great weekend! We covet your prayers heading into the surgery on Monday. We’ll post a “clear face” picture on Monday night!

Weds, 9/15, 8:30

Abbie is out of the PICU today! We moved to a general pediatrics room around 2pm since she no longer needs vent or CPAP support. She made it through the night with just the trach collar giving her humidified air and some extra oxygen. She is only getting a small amount of oxygen (7% more than normal air), but we were unable to wean her off of this today. That will hopefully come tomorrow. If we are successful at that there is a chance that she could spend the weekend home with us before her surgery on Monday.

She was very alert and awake for much of the day, and was following directions that were physically difficult for her to carry out, which really encouraged me.

I am home tonight with a migraine that has been simmering for a couple of days. Please pray for Crystal as she spends the night with Abbie. She has been such a blessing to us.

Frank, the paramedic who scooped Abbie up off the pool deck, came by to see her today. It was the first visit in a couple of months,so her progress was very evident to him. Standing there, hearing him call her a miracle baby, I was just so convinced that she is coming all the way back. He echoed these thoughts. It’s just a matter of “when” now, not “if”, and that really helps in the patience department. I haven’t posted any new pics because I want to wait until after her surgery, when we can see her entire, beautiful face.

Tuesday, 9/14, 7pm

We are excited to invite everyone who lives on Oahu to a benefit for Pediatric Brain Injury Rehabilitation in honor of Abbie! It will be this Saturday,9/18, at Common Groundz, a new coffee shop on Keahole Street in Hawaii Kai (near Pizza Hut.) A fellow homeschooling family, Pastor Rob and Robin Moore, have blessed us with including Abbie in their grand opening celebration. Stop by from 9-11 am for a free Icee in return for a donation to support improving pediatric rehabilitation in Hawaii! Through Abbie’s injury our family has become acutely aware of the shortages of equipment and services for brain injured children, and we are committed to doing something about it – not just for Abbie, but for all the children who will be traveling this road one day.

It has been a great couple of days for our girl. I covertly started feeding her baby food Sunday night. She did very well. It is truly like starting over with a baby. Sometimes she pushes the food out that she intends to swallow, and other times it goes right down. But, she definitely knows what to do when that spoon hits her tongue! She was intrigued by the whole process, and seemed to like the bananas, even though she can’t taste things very well because of her trach. I told the staff and the therapists the next day, half-expecting a scolding. But, they seemed pleased with what she is able to do!

Abbie also got new wheels today. She has outgrown her first loaner-chair, and we are fortunate that the hospital has another one in a bigger size. And, the frame is hot pink – very important! She sits much higher in the new chair, and looks at least a year older.

When the therapists asked how long we’d have to wait for her own chair, I answered, “Six to eight months…hopefully that means we won’t be needing it and can turn it right over to you guys to become a loaner!”

While we had her up in the chair Abbie got to play with a computer again. She did great at using the switch to activate the videos. She was especially adept at the “Kittens Who Lost Their Mittens” clip, proving once again that motivation is everything. What is exciting about her using the switches is that it demonstrates her understanding of cause and effect, which is a big deal!

She has seemed much healthier and stronger in the last couple of days. She is going fourteen hours with just humidified air and not having any problems at all. She is more alert and aware with each day. Yesterday the ICU Dr. came in to talk about her meds because we’d had to remove her IV line. She was looking at me as we started talking, but when she heard his voice she turned to look at him and her chin started quivering. I assured her that he was a very nice doctor who wasn’t going to give her any more pokies.

I was thrilled today when she demonstrated a new trick for her PT that I ‘d noticed yesterday. Often when I tell her therapists about something new, Abbie just lays there, probably laughing at her silly mommy, thinking, “gotcha!” But, today when I said, “Abbie, let’s roll over,“she immediately turned her head, lifted her arm and twisted her body. She can’t do the whole movement yet, but she sure knows what she wants to do, so it’s just a matter of time!

Abbie’s new surgery date is next Monday, 9/20. We will be having both the Nissen and G-tube procedures done at once. We covet your prayers for her strength and immune system, as well as for her time under anesthesia.

She will also be having an EEG this Friday. This test measures electrical activity in the brain, and was scheduled a couple weeks ago just to ensure that Abbie is not having seizures that we can’t see. This is the first neurological test of any kind that we have had since the first week of Abbie’s journey, and it makes me feel sick to my stomach. I pray that I won’t care what the tests show, since all that matters is what Abbie is showing us each day.

Even though it is over a week away now, I am greatly anticipating having my family all together again. What a difference that will make for all of us! I think that Abbie truly will blossom at home now that she is aware and responsive…she certainly won’t be lacking for stimulation! Please know that as I am privileged to see all these little miracles from my front row seat, I thank God for each of you with every little step – it is ONLY the power of prayer that preserved Abbie’s life and that is bringing her back to us each day!

Sunday, 9/12, 8:30am

Abbie continues to get a little stronger each day. She is on the trach collar, receiving just humidified air with some supplemental oxygen during the day. Abbie is still using the vent at night to give her body rest. I know we have lost some ground in the physical abilities she had been working on, like trunk strength, but cognitively she seems at least the same as before she got sick.

One of her home care nurses, Linda, came to visit her last night and was singing Old MacDonald to Abbie. When she got to the duck saying “quack, quack, quack” Abbie would answer with her little “cluck, cluck, cluck” of her tongue.

She continues to search out faces, particularly if that person is trying to do something to her like take a blood pressure or temperature.
Yesterday there was a period where she seemed very lucid, so I got near to her face and just started talking to her as I would’ve before the accident. I said, “Abbie, I know this is hard, but you WILL get better…you’ll be able to run and play and ride your bike again.” As I finished saying that big tears rolled down her cheeks. My heart broke for her frustration and pain, and rejoiced at her response. Please continue to pray for the restoration of her health.

We are being conservative in weaning her off the vent this time, not wanting to push her too fast and end up back at square one. We have decided that we will combine the Nissen procedure with her G-tube surgery, but do not know when this will be scheduled.

Please also pray for her muscle tone..we’ve been able to maintain her flexibility, but I do think she is stiff and sore from laying in bed for 9 days, as any of us would be. I must mention a little girl that many of us have been praying for since early in Abbie’s journey…

Baby Isabella in Seattle, born very early, needs another miracle. She had made amazing and encouraging progress, but her lungs are struggling once more. She is at 100% oxygen with high pressure settings, and she is having problems with fluid in her lungs. Medically, there is not a lot more that the staff can do, so it is up to all of us to pray her through this!

Thurs, 9/9, 9pm

No surgery today. Abbie’s pediatrician stopped by to see her this morning. Dr. L. has been a voice of reason and an advocate for Abbie since the beginning. She has had misgivings about the timing of the surgery since Tuesday. When she came in today and saw that Abbie had gone back on the vent last night, we discussed again putting off an elective surgery until Abbie is stronger. My impatience finally gave way to wisdom, and I agreed that we should put off the surgery until at least Monday. What a relief. I was questioning my judgement about going ahead with the surgery, and am glad that we made a safe decision for Abbie.

She rested well today, and looks good. She attended well to the story books I read to her, and fell asleep from the effort. Just before coming home for a while this evening I put a maraca in Abbie’s right hand. I asked, “Abbie, can you make some music for Mommy?” I could see her little hand moving, testing the weight of the maraca. She finally figured out that she would have to move her hand strongly to get a sound…and she did, each time I would ask her.

Another family has joined this tortuous trail with us…a family very similar to ours. They are a homeschooling family with six children, and one on the way, whose youngest son, Luke, nearly drowned in their pool on 8/30. They live in Tacoma, WA, where Ray and I met and married. Luke’s condition seems very much like Abbie’s in the early days. Fortunately, his family is also anchored by great faith in the Lord Jesus Christ, and has been surrounded by so many loving people, as we have. But, little Luke can use every prayer and petition that we can offer. Please lift him up with Abbie tonight. His pregnant mom is especially on my heart, as this journey is so taxing and exhausting. Please pray for her as well.

I am hopeful that this will be a smooth weekend for Abbie. I am not anxious for her to come off the vent. I would rather give her all the time and support she needs to completely heal. This will be a heartbreaking weekend for many families in our country, and, in fact, the world, as they remember a sudden and devastating loss three years ago. Let’s all pray for comfort, peace and hope in abundance for them, and let them know that their loss is not forgotten.

Weds. 9/8, 11pm

A day of hard work for Abbie. She came completely off of CPAP last night, and never had a problem keeping her sats up today – they were always between 97 and 100. However, she kept her sats that good by concentrating on her breathing all day, and working hard at it. For most of the day she was breathing two to three times the normal rate. By evening, she was exhausted and I was worried. The ICU Dr. came in to assess her and decided to give her a breathing treatment followed by CPAP again. When the respiratory therapist had done those things it was obvious to her that Abbie was still working much too hard to breathe. She went ahead and turned the vent on to a rate of 10 breaths per minute. Within three minutes Abbie was noticeably more comfortable, gave a big sigh of relief, and started breathing at normal rates (20-23/min). I was so relieved to see her feeling better. She will need to be vented for her surgery tomorrow anyway, so this is really not a backward step. I am glad she will be well rested for tomorrow. I told her today that we are piercing her tummy even before she has earrings…what a rebel she is! I am anxious to see her beautiful face without tubing and tape!

She was visited by old friends today…the therapists who worked with her during her first stay. It was encouraging to have familiar people getting reacquainted with the much-improved Abbie. We are hoping to continue seeing them on an outpatient basis once Abbie is discharged. We also determined that Abbie’s wheelchair is a little too small for our Big Girl, so we’re going to check to see if we can “adopt” a donated chair until Abbie’s own chair arrives in 6-8 months.

Her surgery is scheduled for roughly 4pm Hawaii time. We covet your prayers for a smooth procedure and no problems with the anesthesia. For many of you on the mainland, if you would just include her in your bedtime prayers the timing would be perfect!

This week I have been learning a little of the obedience that I expect of my kids, and sometimes actually get…I often tell them that when I give them instructions there is one correct answer, “Yes, mom.” I don’t need a discussion or an exposition of all the reasons why the instructions are not applicable to that particular child..just two little words that we are training them to say even when they don’t “feel like it.” The Lord has been training me this week in my one correct answer, which is, “Blessed be the Name of the Lord.” I cannot understand His purpose, ascertain His timing, or comprehend His plan. But, none of that matters. What He requires is the simple obedience of a faithful and trusting child. It’s given me new appreciation for what I ask my children to do. It is hard, but it is right.

Tues. 9/7, 7:30pm

It was a good weekend for Abbie. She showed continual progress and looked much better each day. Today she came completely off the vent and CPAP, and is back to wearing just the mist collar to give her humidified air. Her cultures came back yesterday which allowed the Dr. to fine-tune her antibiotics, stopping one and starting a different one, to deal with the specific infections Abbie has.

Her neurologist stopped by to see her yesterday and noted how stiff Abbie was. Boy, was she right! Abbie was back to having legs of steel. I was concerned until I realized that we hadn’t really moved her much in four days. I announced to her that the vacation was over, and it was time to get moving. In just a few minutes I had all of her limbs moving through a full range of motion.

Abbie’s surgeon told us today that he would feel comfortable doing her G-tube surgery on Thursday since she is progressing so well. We are very excited by this because we thought we would have to take Abbie home for a while to recover from the infection and then admit her again for the surgery. This way, we will get to take Abbie home with a clean slate and no future planned admissions!

We are looking forward to bringing Abbie home on Saturday or Sunday if all goes well. Our family hasn’t been all together since the end of July, so we are all greatly anticipating this new step. The Abbie we bring home this time will be so vastly different than the one we brought home from Kapiolani in early July. When it is difficult for me to see the progress she has made, I just look back at those homecoming pictures and the ground she has covered since then is very obvious.

If you would, please just lift our entire family up for the restoration of our health. It seems that whatever hit Abbie is now working its way through the rest of us. God has truly protected us over these last four months and given us the health we need to be there for Abbie. We just need to make it through this final week of hospitalization.

I’m searching my mind for something poetic to say, but fatigue has stolen away anything witty I might’ve recalled. He continues to be my hiding place, my shelter in the midst of this storm that still rages..although now it seems we are better outfitted, no longer standing in the gales in our summer shorts and T-shirts. Sometimes I wonder if it is getting more bearable because I am slowing forgetting the details of the Abbie we used to have, which makes me sad. I know, however, that any easing of the sorrow can only be God’s grace, poured out through your prayers…and we thank you for that!

Sunday, 9/5, midnight

A day of plusses and minuses for Abbie. On the plus side, her Xray today shows that the infection remains concentrated in the trach area and has not moved down into her lungs. That is a HUGE praise. Please pray that the infection does not spread. On the minus side, they had to put Abbie back on the vent last night. CPAP alone wasn’t giving her enough relief. It’s hard to see her mechanically ventilated again, especially when she fights it so hard. Her irritation with the vent along with the exhaustion and agitation caused by her infection required some doses of Ativan today. I hate the fact that she needs that med again, but am thankful for the rest it provides her. Her fever spiked a couple times today, but was brought under control with Tylenol. Her muscle tone, even when not influenced by Ativan, is a beautiful sight. I bathed her tonight and moved every limb with no resistance! Her diaper rash is beginning to heal. So, overall I would say it was a good day. We just need to string a few more of these good days together and she’ll be back to herself again.

I realized how far she had come when I had to ask the nurse if I could position her on her side with the vent tubes attached…duh – of course I could, we did it all the time in the PICU during her first stay. I had just forgotten. I celebrated the fact that I had forgotten some of the techniques of caring for a critically ill child!

Abbie’s room is on the second floor, the same as the room she was in after the PICU. But, this one is around the corner from the last one and has an entirely different view. Instead of looking out over the freeway and across to condos, we see the green lawns across the street at Shriner’s, Punchbowl, palm trees, and the mountains to the west. It is beautiful. God impressed on me, “Yes, it is beautiful, because Abbie has turned the corner!” That whisper made the ups and downs of today much easier to handle with grace.

Please continue to pray for her comfort. She hates being vented, but has so much junk in her chest that breathing is a lot of work. She’s on three very strong antibiotics, please pray that they will knock this out quickly. And, lastly, please pray for the staff. We are in the luxury of a private room only because the third floor PICU is full, and now they have many patients on the second floor as well. This is an exhausting and challenging time for the staff. I pray that God rains down his blessings upon you on this Sabbath!

Sat, 9/4, 10am

Just talked to Ray…Abbie’s fever spiked again last night, so they gave her some Tylenol with codeine to help with that as well as her coughing. She was working so hard to breathe that they put her back on CPAP (continuous positive air pressure.) It’s kind of hard to imagine having a machine help her breathe again, but I am so glad she is able to get some relief and rest. They took another chest Xray this morning. Based on her temperature spikes and trouble breathing, the doctor was expecting to see something much worse. Abbie still doesn’t have much fluid down in her lungs, so they are not calling her infection “pneumonia’.” She does have an infection in her tracheal area. So, the Xray brought good news! Please just pray that we can keep her fever under control, and that she can really rest well today.

It’s a big day in our family because it is opening day of football! Ray will take the kids to the game while I assume Abbie-watch. It makes me realize how far we’ve come when I can count on the fact that they will actually be able to enjoy the game (and particularly the tailgating beforehand.) I’ll try to post an update late tonight if anything changes. It’s such a comfort to know that you will be praying for Abbie as she passes through this challenge!

Saturday 9/4, 8:20am

Yesterday, four months to the day after Abbie’s accident, found me once again riding in an ambulance with my little girl.

She had been a little sick for the past three days, but through the night on Thursday it got markedly worse. She desatted a number of times and couldn’t keep any of her morning feeding or meds down. We had a chest Xray and some blood drawn in the morning, with many calls to the pediatrician to determine if we were going to transfer her to Kapiolani Women’s and Children’s. At lunch time we started Abbie on supplemental oxygen for the first time since June. One liter wasn’t enough, so we turned it up to two. That really seemed to help, and after a while we turned it back down to one. I started to wonder if perhaps I’d overreacted when I pushed to get her transferred. Chase and Crystal were on their way back to Rehab after taking a load of Abbie’s things home. The plan was for Crystal to drive us to the hospital while I sat next to Abbie and suctioned her. Before they got back Abbie was on 5 liters, and I wasn’t sure if driving her ourselves was wise. The doctor helped in the decision by calling the ambulance. After she was loaded and hooked to their pulse-ox I could see that she was satting at 93. I was pretty happy with this until I asked how much oxygen she was receiving…10 liters.

It didn’t hit me until the EMT asked when her accident had happened…four months to the day. I almost got sick. I was torn by both thankfulness that this ride was so much less traumatic—I got to sit in the back this time and hold her little pink head—and by the brutal memories of that first ride. I had really hoped never to see the traffic on the freeway part again for our passage. It also made me think about Frank and Bruce, the two men who worked on Abbie during the first trip. Being in the back , holding her made me realize how stressful that trip must have been for them, and how thankful I am for their skill and determination.

We arrived in the ER to see Erin, our angel nurse, on duty again! Abbie was moved to the PICU overflow, which is a blessing. We are in a private room with a sleep bed, but Abbie is being covered by PICU nurses and doctors – the best of both worlds! Her chest Xray didn’t look too bad, so it’s not full blown pneumonia, praise God! She’s on IV antibiotics which will hopefully knock this out in a few days. Around 8 last night I noticed some unusual activity in Abbie – eyes rolling up in the head and staying there, tremoring in her arms…I was afraid it was a seizure. She hasn’t had a problem with these, and I admit, I was fearful that this was a first one. Nope—just a spike in her fever..some Tylenol, ice packs and a shot of Ativan after a very long and stressful day, and Abbie was feeling much better.

I am relieved the she’s where she can get the care she needs for her medical conditions, and believe that this will give us a chance to get a handle on all the issues that have been bothering her lately. It is also REALLY fun to tell the PICU nurses who already know Abbie that she is using the potty now! We are so proud of her.

Because she had one-to one nursing last night, Ray was able to stay with her. I slept at home for the 4th time in three weeks. I was a little exhausted to say the least. Chase laid down the law, “Mom, when we get home , you are not getting on the computer, you are going right to bed!” He and Crystal were such a help in the transfer process –what a blessing it is to have older, tenderhearted kids. I kinda LIKE having teenagers around!!

Please pray that Abbie would respond well to the meds. We are going to try to being her tube feedings again today. Please pray that she would be able to handle this without vomiting. She has been coughing almost incessantly at times, and with much effort. Please pray for comfort and rest for her.

As we were hurrying to get her things packed up at Rehab (it was like emptying an apartment!), I came across a tiny card a friend had given me months ago…it simply read, “May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13. I don’t know why it ended up in Abbie’s things at Rehab, but I consider it just a little message from Heaven.

This was a few weeks back. Abbie’s 1st day at church, with her friend Evie, and her brother, RJ.

Tuesday, 8/31, 4pm

Abbie continues to take little steps forward, but what we really need prayer for right now is her general health. She has another urinary tract infection. The antibiotic for this makes her very queasy, and she has to fight to keep her feedings down. It also gives her diarrhea, which is the last thing she needs right now in light of her raging diaper rash. Overall, she is just very uncomfortable. We are working on many different things right now, and sometimes they seem to contradict…we reduced her fluid intake to help lower her blood pressure. This worked, but reducing fluid is the last thing you want to do for a UTI.

I asked her doctor today what else needs to happen before we can try capping off her trach. He told me that she only needs to get her G-tube in and then we can give it a shot. He increased the medication that helps control her secretions because she is having more while she is sick, and we’re trying to see how well we can keep her “dry” looking forward to taking the trach out. But, again, dehydration is not optimal for her UTI. It can be very confusing and worrisome. The best solution is just for her to get healthy again, so we covet your prayers for the restoration of her health!

Last night I saw some independent leg movement for the first time in a long while. Her muscle tone makes independent movement much more difficult, but she is getting more and more wiggly in bed lately. Her goal in life right now seems to be sitting up in bed by herself. She continues to pull her head and shoulders forward, and she seemed to be moving her legs trying to help herself up.

Her visual activity was better than ever today, with the delay in looking for a picture on a storybook page getting ever shorter. She was turning from side to side very well, and looking down to search things out. This is a definite improvement. She continues to be my Big Girl Potty champ, which is always encouraging.

We are settling in to the school routine around here. The mornings are a little rough for my not-so-early risers, but they’ll get used to it. Kyle is being very diligent with his homework, which is a blessing to me.

This loss our family has experienced, like all traumatic losses I am sure, doesn’t come all at one – it arrives in layers. Transitioning the boys to school has been another layer of loss for us. We all long for the way things used to be. Not necessarily because school is not a good and right thing for them at this time, but just because we miss each other and our simple, ordinary routines that brought us so much happiness. Our life now seems to be continual adjustment, but we know that God can use it to shape us if we allow it.

At times I feel like Gumby, and wonder if I can stretch and twist any farther. Then, I realize I ‘m not Gumby at all, because he always returns to his original shape. None of us will ever be the same after this, and that is not necessarily a bad thing.

Sat. 8/28 9pm

Just a few minutes until I have to leave for the hospital, but we have big happenings to share…At the team conference this week the Dr. leading the team said that Abbie urinating in the toilet may just be a reflex. We were a little disappointed at that, but he continued by saying that if she had a BM in the toilet that would be an obviously intentional event. Well, that’s all Abbie had to hear..she delivered her first “package” in the toilet this morning. I know it is usually rude to talk about potty habits, but this is truly exciting. It is confirmation that she is THINKING about what she is doing, and is aware of what is going on around her. Praise God!!

Pool therapy was awesome again today. She did a lot of weight bearing by standing up, and kept her knees nice and soft. She also followed an object side to side as well as up and down. We have to move the object slowly, and she is inconsistent at times…but it is coming!

Last Sunday the message contained one line that has been stuck in my head all week. “The foot of the Cross, where suffering and grace meet.” In thinking about that (all week) I have new appreciation for the relationship between these two. It’s been obvious to us all along that without grace this suffering would be unbearable. Through His grace God has delivered Abbie from death and is restoring her to life. Beyond that He has brought all of you into our lives to walk with us, a blessing beyond measure. But, grace without suffering…I’d like to sign up for that one!

Unfortunately, I don’t think you can perceive grace clearly in the absence of suffering. God’s grace is always in abundant presence, but when things are moving along well we either don’t perceive it or choose not to acknowledge it. Suffering gives us new lenses through which to see grace. The prism of tears opens up new insight into grace the same way that prisms of glass open up light to reveal a rainbow. At the foot of the cross these two came together for eternity, as Christ suffered so that we would never be separated from His grace. It is sometimes difficult to be thankful for pain and to rejoice in suffering, but the deeper revelation of His grace and of Himself is recompense beyond what I could ever ask.

Thursday, 8/26 8pm

I’m finally spending the night at home tonight, much needed rest for me and time with the kids. Abbie continues to press slowly forward. Her progress comes in drips and drops, but it is coming and that’s what counts to us. I read a study recently that found that the strongest predictor of the length of rehab was not the severity of the brain injury, as I‘d expected. The researchers found the strongest correlation was between rehab length and the length of stay in an acute care setting. Abbie was in such a setting for over nine weeks, and didn’t really being rehab until 12 weeks post-accident. This is a long time relative to other cases like hers. So, we are prepared to mosey along a road that others may be zooming down without letting the speed of her progress dim our hopes about the eventual outcome. Sounds so logical and rational doesn’t it? It holds up pretty well in the light of day.

Ray and I have both had some difficult nights lately. I feel farther and farther away from the Abbie we used to know as it becomes hard to remember details from life “before.” He, too, struggles with missing the sweetness that a little girl brought to a house full of boys.

Abbie tolerated her Gastric Emptying Study very well, which is a big praise. She is usually fed 180ml of formula over a two hour period. For the test we had to feed her 100ml in ten minutes and then lay her flat. I thought that the test was going to be 70 minutes of fighting her secretions and possible vomiting. She only had one episode during the entire test, which kicked off when Dad came in the room to say “hi” and stroked her head. The test confirmed that Abbie does have reflux, as we’d suspected. We will be consulting with a surgeon soon to ask more questions and determine the best course of action.

We lowered her Baclofen a smidge yesterday, so her dosage is now exactly half of what it was when she was admitted. Her muscle tone remains OK, but would you please pray for her shoulders? We’ve focused so long on her legs, and they are doing pretty well, but her shoulders and elbows are really tight sometimes.

The biggest change for the past couple of days is that Abbie will look down to follow an object of interest. She isn’t really tracking with her eyes, but will lower her head to get the view she wants. This is progress we’d been hoping to see. In this vein, would you pray for her eyes to begin tracking independently of head movement…this would be a big step forward. It is so difficult to tell how much vision she has, but some of her responses over the last couple of days show us that she does see something at least some of the time.

Abbie has also started really trying to pull her head forward to sit up in bed. For a normal child it would look like such a slight movement, but it is a lot of work for her. Seeing her initiate movement on her own is exciting, too.
She enjoyed pool therapy today, and so did I. It’s nice to be over the emotional hump of getting in the water with her again. It relaxes and stimulates her at the same time. I always notice an increase in her head movement after water therapy.

We had our family conference today with her team, and Abbie will remain an inpatient through 9/3. We are working on a discharge plan for her, but finding appropriate resources in the community may be a challenge. Please pray for the next steps to be the right ones. Ray and I could use an extra dose of wisdom as we plan for post-discharge rehabilitation.

Although our small group is finishing up a study on James, our discussion took us to John 16 last night. After I returned to the hospital I spent some more time meditating on it, and found comfort in the words Jesus used to prepare his disciples for the time when He would leave them. “’In a little while you will see me no more, and then after a little while you will see me.’ I tell you the truth, you will weep and mourn while the world rejoices. You will grieve, but your grief will be turned into joy. A woman giving birth to a child has pain because her time has come; but when her baby is born she forgets the anguish because of the joy that a child is born into the world. So with you: Now is your time of grief, but I will see you again, and no one will take away your joy.”

God has clearly impressed on me that whatever qualities of the old Abbie that do not remain in the new Abbie He is saving in a precious box..they are not gone forever. We will see Him, and Abbie again, and grief will be turned to a joy that can never be taken away. I also feel that this is the second time I am giving birth to Abbie – this time the pain is in my heart instead of my body. We don’t know yet what the new Abbie will be like, but we will receive her with joy and thanksgiving just as we did the first time.

Tuesday, 8/24/04 5pm

Yesterday is mostly a blur now, but it was the purest celebration of life I have ever been a part of. Abbie didn’t feel too well last night, as you may be able to see in her picture. She had kind of an upset tummy yesterday and was moaning off and on. Not a fun way to spend a much-anticipated birthday, but it didn’t stop her from helping to tear the wrapping paper off of her many presents. Her PT, Heather made cupcakes, and Abbie got to taste some of the chocolate frosting, which she really enjoyed. You could almost see her thinking, “Well, if you’d use this all the time, THEN I’d cooperate in speech therapy!” She has enough helium balloons in her room now to ride to the moon if she’d like. And, she now has a beautiful ballerina tutu hanging in her closet, waiting for her first dance.

We were all pretty light-hearted and enjoying the moment until Ray decided that we should end the party by gathering around Abbie to pray. I knew it was going to be rough when Ray opened up the prayer in tears. A mixture of such intense emotions…the kids all prayed such sweet prayers for her that by the time it came for me to close the prayer I could barely speak. Abbie knew we were all praying for her and followed the voices around the circle.

Abbie slept very well until around 3am, her oxygen sats have been staying noticeably higher at night and her lungs are totally clear for the first time since she was admitted. She ended up making it almost all the way through breakfast before the majority of it came back up. I hate seeing how it exhausts her to go through that!

She did well in her normal therapies today, and then we got a treat…pool therapy. I got in the pool with Abbie and the therapist, and it was another one of those devastating moments that just sneak up on me. I should have seen it coming…duh! She’s a near drowning survivor and this is the first time back in the pool.

But, I was so focused on how good the warm water would feel to her, and was so excited for her to get to float and relax that I didn’t stop to consider the emotions that would be dredged up once we were on the pool steps. As I held her tightly in my arms all I could think was, “If I would’ve been this close to her on that day, this never would’ve happened.” I just kept taking deep breaths and tried to focus on the immediate task of ensuring her trach stayed above the water line.

She seemed calm in the water, and it had to feel good! The therapist said she did very well. It’s not uncommon for patients to be tense and agitated during the first session, but Abbie remained very calm. Once we got her back in her wheelchair I noticed an immediate increase in the amount and range of her head movement, which was exciting. She struggled through lunch, moaning again and then headed straight to afternoon therapy. No rest for healing girls!

Despite being tired she had an awesome afternoon PT session, showing good head control, trunk control and flexibility. It was great timing, since the neurologist stopped by to see her. He assessed her right before we admitted her, but hasn’t seen her since. It was exciting to tell him about all of Abbie’s advances, and even better for him to see some of them! He seemed pleased with her progress, and labeled it “dose-dependent” – meaning that she is making these gains because the therapy is so intense, so we don’t want to change what we’re doing.

Please pray for Abbie’s comfort. I am so glad that she is able to vocalize and tell us with her voice, as well as with her expressions, when she is in pain. But, it is difficult to know what to do for her.
Thank you for all of the heartfelt birthday wishes for Abbie…she will be tickled when she reads them someday!

I do need to share a story about the boys with you. Today was their first day of school. We went to the school yesterday to find out who their teachers and classmates would be. Kyle, the most apprehensive of the bunch about this whole transition, found only one familiar name in his class. He happened to be a boy Kyle played baseball with, and they didn’t particularly “click” with one another. Kyle’s nervousness quotient immediately doubled.

After Abbie awoke at 3, I spent the rest of the night praying about the boys and school. Mostly, I prayed for Kyle and this boy. I was praying, “Please, Lord, don’t let this boy be mean to Kyle on the first day. Let Kyle get along with him, too. Don’t let anything bad happen.” My heart just ached. Along about 4am I realized that this was the wrong prayer, so I started again. “Please Lord, let this boy be excited to see Kyle. Let them start out as good friends. Let things go great today.”

Ray called mid-morning and said, “We got to within 20 feet of Kyle’s class when this boy called out. ‘Hey Kyle! Let me help you carry your stuff! I saved you a place in line so we can sit together…” And off they ran, with no time to say “bye” to Dad. I just wept. God answers prayers about very sick girls as well as the first day of school…He cares about it all!

Monday 8/23, 5am


I remember standing in the PICU the first night thinking “I can’t believe that this is how her story is going to end…I can’t believe that He brought something so precious into our lives to take it back so quickly.”

Abbie came barreling into the world before the doctor could even get there, doing things her own way from the very beginning. We are so thankful that we have her on this day!

On May third when I thought about this date all I could see in my mind was the numbers 8/23/01 engraved on a granite marker. We praise God that we will have birthday cake and presents, and not flowers in a cemetery today, for only He has brought Abbie this far.

Psalm 139:16 says “All the days ordained for me were written in your book before one of them came to be.” We are so thankful that there are more pages in Abbie’s story, and look forward with anticipation.

She had a great day at church yesterday, as always. At one point I was trying to move her arm into a different position, and she vocalized to let me know that it was just fine where it was. The noise surprised me and shocked those around us, I think. But, it was fun to hear her “vote” on things happening to her.

We both slept through her morning feeding. I was astounded when I was awoken by the feeding pump beeping, because I am NEVER able to sleep during her breakfast because she needs lots of suctioning. This seemed like a big step forward for her. She then topped that by using the potty again. So, yesterday she voided in the toilet 5 out of 7 times that we put her on it. I think I would’ve taken that percentage when I was training ANY of my children!

Her hands are moving a lot more lately, and she’ll open her hand to receive a toy. We are seeing big differences in her mouth as well. It’s one of those things that are hard to pinpoint, but just make her “look” better. She is holding her mouth in a more normal position rather than allowing her bottom lip to hang open and low.

Ray and I both feel that Saturday was another turning point day for Abbie, or another stage of waking up more. She just seems to be more “there”. In everything from improved muscle tone to attentiveness to wanting to be rocked to sleep, she is more like our little girl every day.

A couple of days ago, during my Olympic-watching marathon (the only kind of marathon for me), I saw the wrestler Rulon Gardner speaking about winning a gold in 2000. He said, “For me, winning was just a process of learning through a lot of losses.” It hit me that Abbie’s journey is much the same way. Her progress is the result of many repetitions of a task with no response. I am finding it easier to sit in therapy and watch her “fail” to do something, because I know that given time, it will come. She is too tenacious to quit, and has too much potential for us to stop pushing her.

For this week the specific prayer requests are: more independent hand movement, more consistency in turning her head side to side, less suctioning needed, more relaxed muscles, and we would love to hear more babbling. Please also pray for her vision – it is so hard to tell how much she has and how well she can see, if at all.

She gets to go in the pool for therapy this week! We are all excited to see how she responds to this. She also will have a test on Weds to see whether she really has reflux or not. We are relieved to be finally getting a definitive answer to this so we can more forward to making her more comfortable.
Thanks for sharing our joy at being allowed to celebrate this day with our Big Girl, who is very aware that today is her special day and that she is 3!

Ooh Cherry is my favorite.

Saturday, 8/21, 9pm

So, so much to catch up on and just a couple minutes to do it. I will try to write a more eloquent and complete update tomorrow, but here are the highlights for the past few days. Abbie’s Baclofen reduction trial was a success!! Her muscle tone at the lower dosage is at least as good, if not better than at was earlier this week at the higher dosage. This is an incredible praise, and a good sign that she is healing! Abbie is being consistent about going to the bathroom on the big girl potty, erasing any doubt that the first time was just a lucky accident. When I stop and think about that one I am blown away. I remember back in July, still in Kapiolani, putting her on the potty, with her stiff legs sticking straight out. Back then I was thinking it would be a miracle if she ever went, and not being very confident that it would ever happen, let alone so soon.

Today in therapy she was sitting on the bench and her body kind of slumped to the side. She brought it back up to midline, and I assumed the therapist had helped her – but, no, she had done it all herself. This was a new feat, and a very significant one involving lots of different skills to accomplish. She also had an exciting speech therapy session today. The therapist was reading her a story and Abbie turned all the pages herself. This involved her straightening her arm herself, which is difficult for her, and then bringing it across her body, which is a big deal. The exciting thing was, Ray got to see all of this for himself since he joined us today. There is a big difference between hearing it second-hand from me and watching it with his own eyes.

On Thursday Abbie got to play with some toys and assistive technology devices, like grips and switches. She did very well and obviously had some intentional manipulation of the devices. At the end of the session the therapist said, “I want to try something with her that may be a little out of her age range developmentally…but let’s give it a shot.” She had a laptop computer that she hooked up to a switch that worked well for Abbie. When the switch was depressed part of a cartoon would play on the computer. After about five seconds it would stop and prompt Abbie to press the switch to see more.

The first big thing about this experiment is that Abbie found the screen with her eyes and then paid very close attention to it. She was able to run through the entire program, depressing the switch each time the video stopped. The switch was such that it required volitional, intentional manipulation to work…it was no accident. The therapist said she was “very impressed!” I am looking forward to seeing what Abbie can do with assistive technology, and I think she is looking forward to playing more computer games!

The past couple of days have been painful in our house…just missing Abbie. One of the boys broke down on Thursday, and just said, “I miss her so much…all the funny things she says, all the crazy things she does.” Ray and I just cried with him. We all just want HER back. I tried to think of markers that would show me we were getting a little bit of her back. For some reason, I thought of her dimple. In her pictures you can see a very evident dimple on her right cheek. I prayed to see this again because it would make me feel like we were getting a little more of our Abbie back.

Today in therapy I almost missed it. I was so concentrated on her sitting technique that I didn’t know what Ray was talking about when he said, “There it is!!!” I looked at him, and he pointed to her face…sure enough – the dimple!

We saw it a few more times in therapy and then again when she was in bed later. God is so faithful. We have been wavering and fainting this week, but also persevering and persisting in our hope. Today showed us again that when we turn the desires our hearts over to Him, He answers.

God has blessed me with a fellow companion on this difficult journey. Annie Pettigrew’s daughter nearly drowned 13 days after Abbie did. The girls are working on similar tasks right now, and Annie and I have had similar weeks emotionally. I think her emails were my lifeline this week, so I would like to ask you to pray for her and her daughter, Isabelle. For all of us would you pray for hope, comfort, perspective, peace and joy in the little steps? Sometimes it is hard to see the progress when we are so close to the situation, but we know that our God is an awesome God and we do see Him at work daily.

Wednesday, 8/18, 4:45pm

I’ve come full circle today – a difficult but joyous passage. Dawn broke to find me in a melancholy mood that slid into misery. I was just missing Abbie terribly. Each little memory that comes back is like another death, and the grief just wells up in me. Each time it happens I have to let her go all over again…and repetition hasn’t made it easier.

I turned to the only refuge I have – God’s Word. Many verses stood out, but particularly “’No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him’ but God has revealed it to us by His Spirit.” 1 Cor. 2:9 It just reminded me again that I can’t ever comprehend His plan, I just have to trust Him, knowing that He is always good, faithful, and loving.

Finally, I just cried out to Him in honesty, asking for Abbie back. I rarely give voice to this thought, trying to stay focused on daily progress and leaving the long term picture up to God. But, it was good to let the tears out, and as the sun came up, Abbie awoke looking bright-eyed and beautiful…the start of another amazing day. We rocked and read books during her feeding, which went very smoothly today for the first time in almost two weeks!! We had a peaceful morning with time even to sit on the potty for a few minutes before therapy.

Lately, I’ve been walking down the hall to therapy very briskly because the anticipation of new accomplishments is so great. And, Abbie has come through every day! As I posted yesterday, side-to-side head turning is a big goal for this week. During speech she did it a couple of times, even though it wasn’t exactly what we were working on. Her tongue was better than ever, too. As I look at that sentence in a detached manner I can’t believe I’m writing about Abbie’s tongue…but all these little steps are going to add up to a huge victory.
Her PT/OT session brought a new joy to Abbie’s life…a merry-go-round, sort of.

Mary Rose (OT) has been canoodling for a couple weeks about how to get Abbie spinning around. Last night, her daughter, Alex, provided a Eureka! moment when she spun around in the office chair. So, Abbie sat on Mary Rose’s lap and went ‘round and ‘round in the chair. Her response to this was utterly incredible. This one motion seemingly turned on a switch in her brain. Every time the chair would stop she would turn her head to the other side in a very appropriate manner. All the while she was holding her own trunk and head. It totally relaxed all of her muscles and kicked off a great session. I was thrilled just with the side-to-side head turning, but Abbie had more in store.

First, she stuck her tongue out at Mary Rose – a fine thank you for the merry-go-round. It didn’t quite make it to her lips, but it was way past her teeth and was the farthest it’s been. Abbie swallows, gags, and coughs, so her tongue is the biggest challenge left before she can eat orally. Then, we sat her on a little bench. Jason (PT) and I held her feet flat on the floor to keep her knees bent at 90 degrees. Mary Rose sat behind Abbie to stabilize her. Abbie got so good at raising her trunk back up to sitting and supporting herself that Mary Rose let go. Abbie sat on the bench all by herself for 10 seconds!! I cannot describe what a big step this is! She repeated this feat in her afternoon PT session even though she was tired.

Her feedings have been amazingly smooth today – her secretions are much, much less, and she is keeping all her food down. In fact (sorry, this is gross but exciting) she was able to cough a good bit of mucous up through her mouth (a big effort with a trach) while she was eating, and still didn’t throw up. I would not have thought this was possible just yesterday.

Please keep up the prayers – it’s amazing what specific petitions produce!! We will not really see the effects of the Baclofen reduction for a couple more days because it takes a while to taper in her system. It would be a huge step forward if she tolerates this trial! Please pray that her muscle tone would not increase.

We have enjoyed watching the Olympics, and I was thinking of all those amazing athletes as I walked back into the hospital last night. This is their brilliant moment, and we feel right there with them as we cheer them on, sharing their “thrill of victory and agony of defeat.” But, there is a wide chasm between their experience and ours—and not just because they are the ones actually competing in the Olympics.

We were not there during the long workouts, the injuries, the meets that didn’t go well, and the moments when quitting seemed like the “rational” thing to do. We are celebrating the zenith with them, but we have not shared their journey.

Abbie will have her brilliant moment someday – I hope a lifetime of them await her. But, between here and there we have a lot of patience, endurance, perseverance, and irrational hope to practice. Thank you for sharing these terrible, wonderful, hopeful, discouraging, painful, amazing days with us. When Abbie rises, and walks away from this trial we will all be able to cheer her on as ones who have walked with her, and it will be a victory anthem like none other.

Tuesday, 8/17, 3:30pm

I regret that I didn’t get to write an update yesterday because I have been bursting at the seams with exciting happenings! Yesterday’s morning therapy session was incredible. She continued to exhibit amazing head control, as well as being stronger in her trunk control. She was very attentive and tried to follow directions, such as when Mary Rose told her to roll from her side on to her back and put her head on the pillow behind her, and she gave it her best effort. With her birthday coming right up (8/23) we thought we’d better practice the Birthday Song. As we finished singing, Mary Rose said, “Abbie, you’d better blow out your candles!” At which point, Abbie took a big breath and blew it out. Amazed, we tried it again – and she repeated the feat! Boy, we were having fun now!

So, when Abbie “tooted” as we bent her legs up to her chest we though perhaps we’d put her on the big girl potty. She eventually bent both of her knees to 90 degrees, held her trunk straight, and relaxed her arms. While she was sitting there Mary Rose tried to get her to suck on her thumb – three times in a row Abbie said, “Tu-gu-nu-nu-nu.” We weren’t sure what it meant, but she said it exactly the same each time, so it obviously meant something to her. She wanted nothing to do with her thumb in her mouth, so I told Mary Rose that she was actually binky girl. So, we tried for a while to get her to open her mouth wide enough to get her binky in, but she wouldn’t. So, Mary Rose said, “OK, we’ll just put this away now.” Abbie started to cry out loud. Poor girl, we all laughed at her misery because we were so excited to see that response.

We were all so pleased with her, and then it came time to get her off the potty and get her dressed. The sight of urine in a potty has never excited me so much– she actually WENT!! And, it wasn’t just a happenstance of timing…her diaper was wet when we took it off, and when we put her on the potty and told her to go she strained and beared down, we just didn’t think anything happened. Abbie used the big girl potty – if I didn’t know Who was orchestrating this whole thing, I would find it unbelievable!!

We are using this week to try to deal with Abbie’s reflux medically before we pursue the surgical option. We changed her feeding routine somewhat and she was able to keep her breakfast down this morning for the first time in over a week! She still has lots of extra secretions when she’s being fed, so that’s a big prayer request this week. Her doctor has lowered her Baclofen (muscle relaxant) dose by 40% today…this is a big drop and we are all anxious to see how Abbie handles it and how it affects her in many arenas. I am hoping that she will not have significantly higher muscle tone and that she will be able to maintain her range of motion. The doctor wants to see if perhaps, since the medication relaxes muscles, it is actually contributing to her reflux by relaxing the sphincter at the top of her esophagus too much. It would be great to see her reflux symptoms decrease as we lower her dose! One of the side effects of Baclofen is drowsiness, so I am also hoping that a lower dosage will allow Abbie to be even more alert and responsive. This is a four day trial, so we would especially covet your prayers for this issue during these days!

Some other specific prayer requests are: for Abbie to be able to stick her tongue out to lick her lips (it is heartbreaking to see her want to taste the popsicles and pudding and not be able to do it); for Abbie to improve at turning her head side-to-side; for her legs to stay relaxed when bearing weight; and for overall stamina and endurance to allow her to get the most out of her therapy sessions.
Abbie met all of her goals for last week – which was thrilling for us and her therapists – so she will remain an inpatient for at least one more week. We are so thankful for this opportunity to have such intensive therapy!

With the younger kids starting school a week from today there is a little light at the end of this chaotic tunnel, and I am feeling great about where Abbie is at and how incredibly hard she is working to get better. I tell her about all of you every night as I stroke her forehead. I tell her to sleep peacefully because so many people are praying for her. I tell her that we’re all so proud of her (she really likes that one.) In ways that I can’t imagine, she knows how hard you are pulling for her, praying for her, and cheering her on.

Grandma Sandy tickling my chin….I LOVE it!

Sunday, 8/15, 5pm

A beautiful and blessed day. Ray came to pick Abbie and I up for church this morning and greeted me with a gorgeous lei fresh from Chinatown for my birthday. His thoughtfulness during this time of craziness was all I needed for my birthday!

Abbie had another good day at church. She was easily finding faces with her eyes and going between faces with no delay, which is a big improvement. She sat upright in her chair with her arms comfortable bent at 90 degrees and her hands relaxed. Her knees were relaxed and her feet were resting on the foot tray. What a difference from just a few weeks ago!

Ray and I took her back to the hospital and spent some “just the three of us” time. At one point Ray started rocking her and she arched her neck to look for her Daddy. Once she found him she just gazed at him like, ‘Ahhhh, there’s my hero!” While he was rocking her I had to leave the room to check on something, and I was telling Ray about it as I walked out. Abbie heard this and snapped her head and arm around to look for me – we were both very surprised! While putting her to bed Saturday night I gave her a little Hamburgler beanie baby that RJ had gotten in a Happy Meal, just for his sissy. When I told her about it, she bent her elbow to raise her arm and then looked over at it. I sat there stunned. She didn’t let go of the Hamburgler all night.

We have a wonderful pastor, Duane McDaniel, who noticed that many families in our fellowship are going through trials right now. He decided to do a message about walking through valleys yesterday. I know it applied to many who were listening, but I felt like it was a birthday present to me.

There were many great points, but I want to share the deconstruction of Psalm 23:4 “Yea, though I walk through the valley of the shadow of death I will fear no evil; for thou art with me; thy rod and thy staff they comfort me.” A very familiar verse, but I took three new things away from the message. “Walk through the valley”…my valley, or any valley, is not a permanent destination or a dead-end. There will be an end to it, even if that end doesn’t come until Heaven. “Will fear no evil” implies that fearing evil is a choice – we can control whether we fear or not. Now, I don’t think he’s saying we can always control our emotions, but we can control who carries the fear. 1 Peter 5:7 says “Casting all your cares upon Him, for He cares for you.” Christ died to set us free from carrying our own fears, and He lives to help us walk in that freedom. “Shadow of death”: A shadow is always bigger than the real thing. It can’t actually harm you. As Pastor Duane said, “Have you ever been knocked over by a shadow?” And, the presence of a shadow requires the presence of light. We can choose to focus on the shadow, or we can choose to focus on the Light.

This message came right after we sang “Be Thou My Vision.” I bawled through the entire song because the conference room full of people who gathered on the first night of Abbie’s journey sang this song, which was my heart’s cry, with me that night. We didn’t get through all the verses, although after singing the last stanza yesterday, I wish we had. “Heart of my own heart, whatever befall. Still be my vision, O ruler of all.” I pray that even now.

Saturday, 8/14 6:30pm

After a difficult week, I am finally typing with a smile again. Abbie had a GREAT day in therapy today, with big improvements even from yesterday. Seems that the Abbie-girl we know and love is back! She did lose her entire breakfast this morning, including her Baclofen (muscle relaxant), so I was a bit nervous about her muscle tone and responsiveness to her morning sessions. During OT she was very relaxed, even in her hands, which was surprising given the assumed lack of Baclofen in her system. The HUGE advance for the day came in the area of head control.

Abbie has been pretty good about lifting her head when it drops forward, but she likes to pull it all the way back until her head is resting on her neck and back. She’s never been able to pull her head out of this position..until today!! She did it over, and over, and over…to command! Not only did it look like she had better control over her muscles, but it also looked like she’s getting a better idea of where her head is in space and where she wants it to be. It is difficult to overstate how exciting this step is! She was also doing a very good job of finding her therapist and and then focusing her eyes on her in order to get to bounce on the ball.

She demonstrated this new head trick for her PT, Heather, in the afternoon. Heather was holding her on the ball in a position she used yesterday. Yesterday, however, Abbie’s nurse had to help Heather because Abbie couldn’t hold her head and trunk up enough. Not today!! Heather stabilized Abbie, and Abbie was able to hold her own head and worked on her trunk control. We were both thrilled! Then, at the end of the session Heather rolled Abbie down the ball until her knees were bent past ninety degrees while she was bearing weight on her feet. What was amazing about that is Abbie didn’t scream at us or resist, and Heather hadn’t warmed up her knees or worked with them during the session.

Sometimes I don’t realize how dense the fog is until I am out of it…it was a very foggy week this week. The sun is out again, and we ALL feel better. She is so much more responsive, alert, and relaxed. We are still determining what the best solutions for her medical problems are, so would you continue to pray for that decision?

Yesterday I finally did my full Psalms reading for the morning..lately I’ve only read one or two. Since it was the thirteenth (happy birthday Uncle Jerry!), I read 13,43,73,103 and 133. When I hit 103 I realized the blessing of doing the whole circuit. The opening passage reads, “ Praise the Lord, O my soul; all my inmost being, praise His holy name. Praise the Lord, O my soul, and forget not all his benefits – who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle’s.” In the early, critical days of Abbie’s journey praises rolled off my tongue and overflowed in my heart. Lately, however, praises seem to have been replaced with worry and fear. Seems backward, doesn’t it? When I didn’t know if she would survive, I could not stop praising God – now that she is healing it’s so much easier for me to take my eyes off of who He is, and Who is in charge of Abbie..(what? It’s NOT me??) In the beginning, the gravity of the situation stripped away any other hope I had, other then the character and nature of God. Now that things have settled down my correct view of the Lord relies again partially on the discipline of reading and meditating on His Word.

I am so looking forward to taking Abbie to church tomorrow. Each Sunday service is a distinct marker, and they help us to assess how much Abbie is changing. I have moved her wheelchair seat from a slightly reclined position to fully upright, which makes her take more responsibility for her head. I can’t wait to see how Abbie responds to the music and people in this new position!
Thank you for your prayers this week – they carried us, and I wish that I could describe how that feels sufficiently enough for you to know how precious your prayers are!

Thursday, 8/12, 10pm

Abbie’s Upper GI test went well today – it showed normal gastric anatomy, just like we thought if would. The tough part came about an hour after the test. We were just on our way to the car when Abbie began coughing so hard that she vomited up all of the test liquid. It wasn’t a big deal for us, but it happened right in front of the pediatric and OB/GYN outpatient clinic waiting areas. I think the waiting patients and families were much more troubled by the incident than we were. It made me realize how much our “normal” has changed. Before Abbie’s surgery I had never seen a child with a tracheostomy. Today, Chase and I were suctioning her and carrying on like we were tying shoes or wiping a runny nose.

The trip to Kapiolani gave Chase and I a little alone time. It was nice to reconnect over a cup of tea (for me) and a Spam musubi (for him). BTW, for Mainland readers, a musubi is Spam (very popular in HI) and rice wrapped with a band of dried seaweed. We made it back to Rehab in time for Abbie to have a feeding and a nap before afternoon therapy. Unfortunately, Abbie lost her lunch right before that session, and just as I finished changing her shirt I realized that she also had an explosion diaper, due to the antibiotice that she is taking. So, therapy today consisted of helping Abbie to change her clothes a couple of times, with lots of good bending and stretching. She was understandably stressed, and so she also got swaddled and rocked, which she loved. We did note that she has very appropriate eye movements when being rocked in different directions, and that her reactions correspond to the direction immediately – which is a change from when she was admitted.

We had our meeting with “the team” this afternoon to discuss Abbie’s progress and the future plans. It was a tough week for her between her tummy problems and her bladder infection, so she didn’t quite meet her goals of more consistency in head control and turning her head in response to stimulus. Please pray for these two areas in the coming week. We did note improvements, however, in her hand, wrist and elbow movement, as well as in her eyes. So, she will be an inpatient for at least another week – praise God!

Ray’s mom and her friend Joanne came last Thursday from Ohio to help us with the kids. This evening Joanne made the kind of meal that you remember for years. I am known to have an emotional reaction to good food, including a “happy food dance.” Tonight’s dinner was worthy of a Rockette kick line! She made home-made, simmer-all-day spaghetti sauce with sausages and meatballs.

As we were raving about it she explained that it’s the first time she’s made it in five years. She hadn’t been able to bring herself to make it since her husband, Rich, passed away suddenly, because it was his favorite. I was almost too stunned to take another bite (I overcame that feeling!). What a profound blessing she shared with us– not only the food, but the part of her heart that held the recipe and the memories. Calm, quality family time is a rarity these days, but with nine of us around the table sharing stories and Joanne’s gift, tonight was very special

Please continue to pray for Abbie’s health. She fights her way through almost each feeding right now, and is often uncomfortable. We feel that once we get her healthy and comfortable she will be able to focus all of her energy on recovering, and we’re excited to see what a focused Abbie can do!

Thursday, 8/12, 5:45am

Yesterday was a day of a bad thing being a good answer. We found out yesterday morning that Abbie has a bladder infection. This could have had a lot to do with her being so lethargic and unresponsive during therapy the previous day. It could also have been part of the reason that she wasn’t able to keep down any of her first feeding yesterday, which is always a wonderful way to start the day. She started on a seven day course of antibiotics yesterday, so I’m hoping that she’ll be feeling better soon.

We included RJ in Abbie’s therapy sessions yesterday, and it was fun to watch her respond to her brother. During speech therapy she turned her head in both directions to find him. She also seemed to respond well to commands from him after we convinced him to use his “bossy” voice. In PT/OT it was obvious that Abbie remains the two year old little sister, and that sometimes she just needs the right motivation to do something. Mary Rose took Abbie’s hand and rubbed it through RJ’s hair. She then pulled it back and said, “Abbie, do you want to pull RJ’s hair??” Almost immediately we saw more action in her wrist and elbow than we have ever seen! Boy, did she ever want to pull his hair!!

RJ and I had some nice together-time between Abbie’s sessions. As focused as I’ve had to be on Abbie, the other kids and I are really missing each other. We stayed for her first session of the afternoon because it involved pudding. We are working really hard to get Abbie to stick her tongue out. If you kids stick their tongues out at each other, praise God for allowing them to do this without effort! We have gotten Abbie to bring her tongue out to right between her teeth, but can’t get her to stick it out and lick her lips. It’s obvious that she really wants a taste of the pudding that is smeared on her lips and is covering her fingers, she just can’t quite get it yet. It is exciting and heartbreaking at the same time. She is progressing every day, but the amount of frustration in it for her is sizeable.

We’ll be back at the Women’s and Children’s hospital for several hours today for her Upper GI testing. I am praying that it goes smoothly — particularly that she won’t have any difficulty keeping the barium down. I am exhausted, but right now that doesn’t matter. We are seeing Abbie get a little better each day, and for that I would endure anything.

Many of you have asked about visiting hours and what our days are like. Visiting hours at Rehab are 4:30-8:30pm, however Ray and I are usually at home during those hours because Abbie’s pediatric nurse is there to give us a break. So, she really can’t be visiting because the staff can’t tell who actually knows us and Abbie, and who would have our permission to visit her. Saturdays before 2 are the best time, and if you go to Hawaii Kai Church, you’ll see her on Sunday mornings. Either Ray or I go to the hospital around 9 pm and stay the night with Abbie. I then stay with her until the afternoon. It is relatively like caring for a newborn during the night. She does sleep, but not for more than three hours, and sometimes there needs to be a lot of care provided in the way of suctioning, repositioning, and soothing. We covet your prayers for endurance and strength, since we are hoping that her stay at Rehab will be lengthy.

Tuesday, 8/10, 8:30pm

A day of ups and downs, mostly of my own creation. Abbie was sleepy during therapy today, and so it wasn’t the best session on record. Tuesday happens to be the day of the week that her team of therapists meet to discuss her progress and recommend whether or not she remains an inpatient. I was overly discourage this morning because I felt like Abbie’s opportunity to stay at Rehab and receive the terrific therapy was hanging in the balance during the non-eventful session. This was a misperception on my part – but isn’t that how we usually create most of our own problems? She had a very short session this afternoon because we had to go to an appointment, and she did much better.

Her appointment this afternoon was with the Gastroenterologist who determined, after hearing how Abbie responds to feedings and other things, that she has reflux. There are two options: we could feed her through the night at a low rate and then spread out her feedings during the day so that she could manage them, or there is a surgical solution called the Nissen procedure. We are going to opt for the surgery for several reasons. I have worried about this for two months, but I am relieved now that we have made the decision.

I just want Abbie to be more comfortable so that she can focus on getting better, and I think dealing with her reflux will really help in that effort. She has to have two tests done before the surgery. The first, an Upper GI test, is scheduled for 9am on Thursday. Would you please pray that it goes smoothly and that Abbie tolerates it well?

As I was muddling my way through this day, I heard, “Believe what you know, not what you see. Believe what you know.” All I could do was to immerse myself in the Truth that I know. I spent lunchtime reading a book made up strictly of God’s promises. I meditated again on the passage God took me to last night, Isaiah 56-58. I thought about how faithful He has been throughout this whole journey, and lifted my eyes from all that I could see and focused on what I could not see, but know with all my heart is real.

Since it’s been a down day for me, I want to balance it out with a thrilling report about Baby Isabella, for whom many of you have joined us in prayer. Recall that she was born three months early, and that her family had to stand in faith for her life when all the staff was recommending removing life support. Well, she is moving from the NICU to the PICU (she’s a big girl now – over seven pounds!) She is tracking with her eyes, and cooing at her mommy. And, when the neurologist came to examine her she finished the exam with a puzzled look on her face. She said something like, “I cannot find any neurological deficits in Isabella – I don’t understand it.” WE understand it, don’t we? What an awesome, powerful and gracious God we have!!

Squishy fun. Abbie learning to open her hand.

Sunday, 8/8 8:30pm

What an incredible weekend! Ray was with Abbie during her therapy session yesterday. Barely one hour after I’d written the prayer request about Abbie’s head control, he called and said, “Abbie held her head up for 8 seconds..well, actually it was 10, but she was solid for 8.” I just laughed aloud at God’s faithfulness. He also told me that the therapists could tell that she liked some songs more than others, and felt that she was trying to sing along with “Baa-baa Black Sheep” (my new favorite song.) When her nurse, Debbie, arrived she asked Abbie, “Should we get you out of that bed and into your chair.” Abbie, who had been silent up until that point, vocalized very loudly in a manner that Debbie and Ray assumed meant, “no!” Is Abbie really starting to try to answer questions??? It seems like she may be.

Ray and I went to a beautiful wedding on Saturday evening, a ceremony that was designed as a worship service to honor God – and boy, did it ever. As the bride came forward between both of her parents, and paused before meeting her delighted groom, the sun broke through the clouds and streamed through the skylight. The sunlight illuminated only Erin, not her parents, nor any other thing in the room. It was as if God was smiling upon her and showing her husband-to-be, Kurt, what a precious gift he was about to receive. I started crying thinking back a couple of months to the day the father-of-the-bride came to see me in the ICU.

He wanted to share some Scripture verses with me, but it was difficult to visit because Erin’s life had started out in a precarious manner, and the ICU brought back vivid, painful memories. She overcame what the doctors said where insurmountable odds to become a strong young woman looking forward to sharing her future with a godly man. While conducting the ceremony, Erin’s uncle mentioned that her tenacity is what had brought her to this point in life, and what would continue to carry her, and I couldn’t help but think of another tenacious little girl who will make a beautiful bride someday. I also thought back to May 3rd, when that radiant bride, Erin, was the angel God sent to our family in our darkest hour. You see, she was the nurse on duty in the ER who received Abbie when she arrived by ambulance. Her familiar face was a gift from God when everything was one horrendously frightening blur. Yesterday, as she glowed at the top of the stairs I could almost see her wings peeking out behind her veil.

I spent the night with Abbie last night, and she slept like a rock. Her body was so relaxed and her knees remained bent at least 60 degrees all night. This morning she seemed kind of agitated. I did all I knew to do in order to calm her down with no luck. Finally, I just got very near to her and said, “Abbie, you got a big ouchie in your head. You are getting better every day. We are in a place where they are helping you to get all better. Mommy and Daddy are right here with you.” Her heart rate dropped 30 points.

I wondered if perhaps we are entering a new level of consciousness. The rest of the day confirmed to me that Abbie is even more alert and aware than every. She really enjoyed the outing to church, and was particularly interested in all the kids who talked to her. Her eye movement and blinking is getting more and more normal each day. Her body was very relaxed, even while she was awake – no more legs sticking straight out in front of the wheelchair! When we returned to the hospital she was very agitated again – that is until Grandma Sandy, Ray’s mom, started rocking her. Her heart rate dropped 40 points almost instantly, and she studied Grandma’s face intently. Except for the heart sticker and the NG tube on her face, when you look at her now you see Abbie – it’s in her eyes, especially

I am excited as a new week of therapy begins because I have a strong sense that very big things are right around the corner. For this week, please just pray for continued improvements in head control and muscle tone. We would love to see more evidence of Abbie answering questions and interacting. Thank you for your tireless companionship on this journey – your prayers have paved each step Abbie has taken!

Saturday, 8/7, 9am

Long days with Abbie have prevented me from writing each day – but they have been good days! We had our first team meeting on Wednesday with all of the therapists and the physician taking care of Abbie in Rehab. I wish I could put into words how incredible these people are, but you would have to see them in action to know how much of themselves they are putting into Abbie’s recovery. She met all of her goals for the first week except having head control for five seconds while sitting, so it was an exciting report. After that meeting, Dr.C., Abbie’s physician, asked Ray and I to meet with him privately. He wanted to check and see how we are doing, and how the family is handling this new phase of Abbie’s journey. He is one of the most tender-hearted men I have ever met, and we had a good discussion. Towards the end of that meeting I asked him, with the understanding that no one can make promises or concrete predictions, if full recovery is a possibility for Abbie. He answered that it is a possibility!!! Abigail has a very long way to go, and a lot of hard work ahead, but at least there is no limit in anyone’s mind about how far she can go!

In the picture above Abbie is playing with strawberry pudding. She is now able to close her hand to hold a brush, but opening her hand is much more difficult. The stimulation of the cold, squishy pudding was enough for her to open her right hand, a big accomplishment for her. She was making happy little sounds as she played. And, it’s also noteworthy that she is sitting in a straight back chair at a table, and her legs were not hyperextended!
Yesterday when I got ready to leave I gave her a kiss and told her that she needed to give me a good-bye kiss, too. After a couple seconds she puckered right up! She also had good head control during her speech session on Friday. Of course, she was then tired out in time for PT/OT where we are really working on her head control, and so was a little floppy. But, at least it’ it’s coming.

There have also been big changes in Abbie’s feeding schedule this week. When we admitted her she was on a continuous feed at a pretty low rate. We have been transitioning all week, and yesterday we moved her to four two-hour feedings, plus a lot of extra water. She is tolerating it very well. I asked her other physician, Dr L., if her tolerance for the much higher rates and volumes was a good indicator that she may not have reflux. He agreed that it is now more likely that she does not have it! I am excited, but still anxious to have the testing done to confirm it.

Earlier this week, as we were on our way back to Rehab from Abbie’s surgery consult I was rejoicing about all of her progress so far, and thinking of so many friends who have children who are born with challenges. I wished so much that it was possible for a child with chromosonal differences or autism to go to a rehab hospital like Abbie. I wished that they could have the hope that we have. God then said very clearly, “Tiffany, your hope has never ultimately been in the doctors or the therapists. It has been in me, and that is the hope that you CAN share with anyone, if only you will open your mouth up and speak!” It was a good reminder for me to adjust my perspective and remember Who my anchor is. It was also a reminder for me to give credit where credit is due. As wonderful as the people surrounding Abbie are, the glory goes to God for all that is happening.

Please pray for Abbie’s head control. In the spirit of “exceedingly abundantly” I have been praying for ten seconds of control! She did sit almost independently this week, with Mary Rose just holding down her left hip. So, once she gets control of her head I think a lot of good things will begin to happen. Please also pray for her tolerance at feeding time, as we will be moving her to one-hour feeds this coming week. I know I’ve forgotten many exciting details, but she is looking better each day. One funny thing that just came to mind…her nurse, Linda, was playing our “Where the Sidewalk Ends” CD for Abbie, when the poem about selling a little sister came on. She said Abbie got a very concerned look on her face, and she had to go calm her. It makes me think that she may be understanding much more than we think.

Weds., 8/4 5pm

Abbie had her best night of sleep in a long time last night, and I think it helped her do well in therapy today. It was nice to see her relaxed and getting the rest she so badly needs. She is getting a break from feeding through the night and it makes her much more comfortable. So, the new things in therapy today include Abbie sitting Indian-style, sitting with her knees bent to her chest and her arms hugging her legs, and sitting on her knees with her bottom resting on her heels. These positions were unimaginable just a week ago when her legs resembles beams of steel. She did cry today as her knees were being bent, but calmed down as they loosened up. After we got her on her knees we took her forward onto a big stuffed Hippo that we all named “Harry.” As we would rock her forward and then back she sounded like a fire truck, “Ohhhh-oooooh”. The great thing was, this vocalization wasn’t so much just a pain response, it was more like Abbie figuring out how to use her voice again. It is such a blessing to see (and hear) her respond to activity.

During speech therapy she did a great job at moving her arms from down by her side towards the middle of her body – a greater range of independent movement than we’ve seen before. Her speech therapist also noted how much more quickly she is responding to things, which is exciting.

She slept deeply between therapy sessions, and so did I. In fact, I awoke to find Abbie gone. The nurses had taken her down to therapy and let me sleep. When she returned, her nurse said, “Man, she was making a lot of cooing sounds during therapy.” I just smiled..one step closer to saying “mmmmm- ah-mmmmmm”. We have some new positioning tools to help her look like she’s sitting in a chair even when she’s in bed. She is not particularly excited about this, so would you please pray for her comfort?

Our small group will be finishing up our study of James tonight, so I was reading through chapter 5 this afternoon. I caught my breath when I read verse 7 , “Be patient, therefore, brethren, until the coming of the Lord. Behold, the farmer waits for the precious produce of the soil being patient about it until it gets the early and late rains.” I thought of the image I got yesterday of the flowers beginning to poke up through the soil. The early rains of our tears came in May, and today it was pouring outside– the late rains are arriving and the “precious produce” of Abbie’s healing is beginning to appear!

Tuesday, 8/3 8pm

So many nights in the PICU I sat by Abbie’s silent bed, listening to the sounds of other patients cry out in pain, confusion or fear. I envied the parents who were struggling to calm their sick children, soothing them with songs, stories and popsicles. I clung to my hope that one day I would be telling Abbie, “Shhhh – it’s OK, Mommy’s right here.” Today’s therapy session brought back those memories that already seem so distant because I had to get down right into Abbie’s face and say, “Shhhh- it’s OK, Abbie..I know it hurts, but Mommy’s right here.” She is crying with a full-voiced, intentional cry that includes the appropriate mouth and facial gestures. It is thrilling to have her interacting with us again, even if it’s not the sound I would choose for her to make. I’m thinking more along the lines of “Hello, Mommy!”, but the crying will do for now!

She didn’t have her morning therapy today because she threw up twice. It is a little exciting when a child with a trach and NG-tube starts throwing up, since an open airway is right below the exit door for the vomit. Luckily, both Ray and I were there and muddled through it together. After the second incident within 30 minutes, I asked if we could put Abbie back on the Zantac that was stopped last week. It has made a big difference and she is noticeably more comfortable. It’s exciting to even know that because of her facial expressions. We can now SEE when she is in pain because of the look on her face!
She had her appointment with the surgeon who will be doing her G-tube eventually, if she still needs one. He commented that because she is making such rapid progress that perhaps we ought to give her one more month with the NG tube. This will allow us to do the diagnostic testing to confirm whether or not she has reflux, and it will also give Abbie the time to see how far she can go in four weeks time. He was very positive, which encouraged me. Abbie now needs to see the Gastroenterologist about the reflux, and we’ll go from there. If it is an issue, we may be looking at doing a Nissen after all (the surgery to constrict the esophagus). The surgeon is hesitant to do a permanent procedure on Abbie too soon since she may not need it in the long run. It is such a blessing to have a surgeon looking down the road with hope, as we are.

Her therapy session was, again, the highlight of the day. Although, today I think it was the bright spot for everyone on Abbie’s floor. Once her therapists got her into a nice sitting position they put her on a little scooter – the kind that is a square of wood on top of four casters. Mary Rose (OT) and Heather (PT) then took Abbie for a ride down the hallway to her room. If only I would’ve had the video camera! Not only to document Abbie’s nice position, but to record the grace and effort of the therapists huffing and puffing down the hall as the mostly elderly fellow patients looked on! Her head control was remarkably better than yesterday, and her eyes are working better each day at tracking and scanning.

We are spending so much time in therapy and looking down the road at what comes next that it wasn’t until late in the afternoon that I realized that today marks three months since the accident. That black dark place of despair and fear seems so far away now – all that remains is the residue of God’s faithfulness and what we have learned about Him. We are starting to see flower shoots poking up through the ground that were watered by all those stormy nights in May. It’s going to be a beautiful Spring!

Monday, 8/2 7pm

Another day of “hallelujahs” in the therapy room!

Today Abbie’s PT, Heather, was able to bend both of her legs at the same time again. We also did the bicycle motion with her legs while talking about her tricycle with a bell that is waiting for her at home. While we were doing this Abbie vocalized in a loud, clear voice. I thought I was hearing part of a word, but I kept that thought to myself until Heather said, “Hey! It sounds like she’s saying ‘hurt!’” I am sad that she was crying and in pain, but the sound of her voice in any form is sweet music!

We moved Abbie from the floor to sitting on a bench with nice bent knees and hands relaxed in her legs. She sat in this position for 25 minutes while we sang songs and she worked on her head control. That is an incredible difference from last week when we couldn’t even unlock her legs. Abbie showed great progress in her ability to lift both her trunk and her head today, which is exciting. The hard part now is knowing where to stop..her head typically keeps moving until she is looking up at the ceiling. Heather said, “Stopping her head in the right place involves Abbie knowing where in space her head is, and having the strength to stop it when she wants to…those things will come.” The weight of those four little words didn’t hit me until an hour after the session. “Those things will come..” That was the first prognostication about Abbie’s future abilities since the first week in the ICU when we were told that if she did survive she would be ventilator-dependent with no voluntary movement, and that no therapies would really be helpful with her kind of injury. “Those things will come…” – in my mind that applies to EVERYTHING that we are hoping and praying for Abbie.

Abbie did have a rough night last night. Her oxygen sats were dipping into the 80s and it was hard for me to get them up. This is very unusual for Abbie, and stressful for me. I think it was jus the result of her having some dried mucus in her lungs, and we have since resolved the problem. But, the lack of sleep did not aid me in being a pleasant person this morning. It was hectic, I was running around trying to get Abbie ready for therapy, and Ray showed up just in time to point out that I was being very rude. He may (most likely) have had a point – but isn’t it hard to receive the truth in real time?? As we finally were ready to wheel Abbie to therapy, one of the nurses who had to witness my meltdown just stopped me and said, “Remember, if you have faith as a mustard seed, you can tell that mountain to move, and it will…” Her willingness to share that verse transformed my entire morning.I am so thankful that God places His people in my path just when I need them!

This was also a day that our family made another very difficult decision, which probably means it was the right one. We homeschool our kids, and it is so much more than an educational choice for us – it is a lifestyle. But, Abbie’s rehab timeline is going to stretch out indefinitely, which is a very good thing. I have been trying to split myself in two, and – surprise! – it hasn’t worked. After much prayer and seeking counsel, Ray and I have decided to put the twins in 2nd grade and Kyle in 6th grade at the school down the street. It is difficult for me to describe the pain involved in this decision for me, but again, God has brought me to the place where I have to trust Him. I am looking to Him to miraculously restore Abbie, yet I was having difficulty trusting that He could protect the boys’ hearts and minds during this time of testing for our family. Please pray that the boys would get just the right teachers and just the right classes for them. They, too, have been through so much these past three months without my presence to comfort and guide them. I pray that the transition will be smooth and that we will see unexpected blessings.

Abbie will have her appointment with the surgeon about the G-tube on Tues., with another appointment with a Gastroenterologist to be scheduled. The GI physician is still concerned that Abbie has reflux. Please pray that God would make it very clear either way so that we can do the best thing for her, but especially pray that she doesn’t have it.

I was telling a dear friend tonight about how close God has been to me throughout this whole journey. I was walking into the hospital two nights ago – the clouds were very low and illuminated by a full moon, and the wind was blowing gently. I looked up and thought about the pillar of cloud that guided the Israelites. I thought about how often the Holy Spirit is compared to the wind. In the midst of this meditation I heard God call my name, and braced myself for either a command or a revelation of something difficult. “Hey..” He said, “All I wanted to tell you was that I love you!” I stopped cold in the middle of the parking lot, just staring at the sky, and was overwhelmed by the love that know no bounds. In the end, I think that’s all He really wants each of us to know.


Saturday, 7/31, 8:20pm

Here’s another way to know it’s a good therapy session…when the therapist bursts into tears of joy and has to leave the room to get a tissue, you know something big has happened.

Today, Mary Rose, Abbie’s OT, had Abbie on her back and was bringing her hands toward her face. She said to Abbie, “Blow Mommy kisses!” And in response Abbie puckered up. She did this to command twice in a row. Puckering is not natural for Abbie at this point, and takes a special effort. Once she did it the second time Mary Rose’s tears started falling to the mat and my mind went back in time to the day before the accident.

After church the day before the accident we went to Teddy’s Burgers for lunch. I held Abbie as we stood in line to order. She is not the most snuggly child, as she is usually far too busy to linger in my arms. But, that day she gave me kiss after kiss, saying “last time!” and then laying another “movie star” kiss on me – complete with sound effects (mmmmmm-ah) and her head going back and forth. “Last time!” she kept saying..”Last time!” Those words haunted me in the ICU the next night as I realized that most likely it was the last time Abbie would ever lavish her kisses on me. But today I know for sure that I am going to get butterfly kisses again, and hopefully never hear the words “last time”, either from her mouth or in my mind.

Last Sunday I wrote about two words that change everything, “But, God..” Today we heard two more that we have waited twelve weeks to hear…”Purposeful Movement!” Praise be to God for this unfolding miracle!! We have long believed that Abbie has purposeful movement, but to hear Mary Rose say this today left me in shock. Now we can ALL believe that Abbie hears, understands and responds to the best of her ability. This truly does change everything. I have not been able to cry any tears today because I think I am still having trouble absorbing this all. The hope of our hearts is being brought into reality one day at a time! Psalm 31 says, “I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul.” As I was reading this today I sensed that for me, and our family, affliction and anguish are becoming past tense words. The Lord is leading us out of the depths of our sorrows and into something we can’t even imagine yet.

Friday, 7/30 6pm

When you hear a therapist say, “I am floored! If you would’ve told me on Tuesday that Abbie would be doing this on Friday I wouldn’t have believed it!” – well, you know it’s a good day. The source of surprise today was Abbie’s knees. When Abbie was admitted both of her knees were hyperextended, and it took work to even get them unlocked, let alone bent at all. And, the only way she would bend a knee was if you left the other leg totally alone. Today, she allowed her physical therapist to bend both of her knees to 90 degrees at the same time!! She did so well at this that they put Abbie in a “bridge” position, where both of her feet were on the ground but her bottom was up in the air. The speed of this improvement is a miracle, and we are claiming it as such.

It was also a day of heartbreakingly good things. While her PT was busy with her legs, her OT was blowing on her face (and getting a reaction each time.) Then, she said “boo!’ and Abbie turned her head to the side and started crying. Her chin and lower lip were quivering, her forehead crinkled, and her breathing was obviously a crying pattern. I had to get in her face and tell her it was OK, and then she calmed down. She had an emotional reaction..she was scared…praise God!

So many improvements today! Her tongue is working much better, and even pushed some spit-up out of her mouth, after we held her too tight around her stomach. This sounds so simple, but for Abbie it is a big deal. She is moving her fingers independently more and more, especially when we ask her to make the sign for “more” in order to get more yummy tastes. Her eyes are tracking and scanning better, and just look clearer. This afternoon her physical therapy took place in the tub, and she helped wash her hair and her body. She also reacted quickly when her PT squirted some cool shampoo onto her warm belly, which is encouraging. Also during the bath the therapist noted that Abbie responds to tickling on her feet, which wasn’t apparent on Tuesday.

We do need prayer about some specific things, however. Today Abbie has a LOT more secretions. They are thin and white, so it doesn’t look like an infection – more like a runny nose for a kid without a trach. She couldn’t wear her Passy-Muir valve for long today because it just takes too much effort to breath around the trach with extra secretions in her airway. She also threw up a significant amount after her morning therapy session. Please just pray that it will be an isolated incident and she isn’t getting. We also need prayer about her G-tube surgery. We would like to have it as soon as possible, but the surgeon is going out of town next week. We need wisdom to decide who should do the surgery and when it should be done.

I have disciplined myself not to take any books or magazines to the hospital besides my Bible and two devotionals. Then, even on the days I am too tired to want to read them, I end up doing it anyway. In the morning with the kids we normally follow a pattern of reading aloud the Psalms that correspond to the day of the month (eg. Today we’d read Psalm 30, 60, 90, 120 and 150). I’ve tried to reinstitute this on my own in the hospital, and the Lord has blessed me. The first day I read was Psalm 27, and verses 13 and 14 say “I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord, be strong and take heart and wait for the Lord.” It just reassured me that this miracle is going to be done in the land of the living, and I will not have to wait until Heaven to see Abbie restored. But, it also reminded me that I must wait, and then wait some more.

Tomorrow Abbie will only have one session of therapy, so we are hoping to either bring her home or take her out and about with us. The kids haven’t really seen Abbie since she was admitted and I’m excited for them to see the improvements in her, and to see her response to them. I am really trying to allow others to help care for Abbie so that I can give more of myself to the other kids and Ray.

Tonight her steadfast and loving nurse Debbie is with her. As I was leaving the hospital this afternoon I realized that I trust her with Debbie even more than I trust her alone with me, because Debbie actually is a nurse, while I am still working through the crash course in nursing. What a blessing to have that confidence as I left her there. Ray sent me for a massage last night, so my right shoulder is no longer pinned to my ear. And, a night of sleep at home last night made the world look completely different today. I have received so many caring cards and notes, I only wish I had time to respond to all of them. Someday I will – but until then, please know how encouraged and uplifted both Ray and I are by all of you!

Friday, 7/30. 5:45am

As I thought, it’s a little tough to get as many updates out as I’d like..but it’s because I’m so busy with Abbie, watching her progress daily!! She has changed so much this week it is hard to believe. She is off one medication (Zantac). She is wearing her Passy-Muir valve all day, even while napping, which is a big deal. She no longer needs the humidified air at night, so we get to sleep without the noisy air compressor running. And, we’ve seen numerous physical changes as well. She is able to place relaxed hands on a ball held in the middle of her tummy and raise it (with assistance) to her mouth. Each those details is hard work for Abbie, and none of it happens automatically. She gets better with each practice at a task. She is responding more and more to her oral therapy as well. They use oversized Q-tips impregnated with a lemon flavor that are frozen to stimulate her oral motor skills. She has decided that she really likes the flavor and will request more with her clucking. We also started working with her on some sign language that she knew as an infant. Yesterday she attempted the sign for “more”. She also attempted to wave bye-bye. Her movements are very small, but the intent is there, and that is exciting! They have been able to get her knees relaxed during therapy, but we still need prayer for her overall muscle tone. All in all, each day has been one step closer, and I never imagined we’d see so much progress so quickly.

I wish I had more time to write because we are now getting to all the good stuff. God continues to be faithful in holding me up, particularly through His word. The timing of the verses I read has made me laugh aloud numerous times over the last several days. Please pray that Abbie will be able to have her G-tube surgery soon, since she will be so much more comfortable without the tube in her nose – and we’ll be able to see her entire, beautiful face. Thank you for your unceasing support of our family – even if you’ve never posted, emailed, or called – even if we’ve never met – we truly, physically, spiritually, and emotionally feel it, and we couldn’t be walking this path without it!

Tuesday, 7/27, 7pm

Praise Him, praise Him, praise Him!! It is only Abbie’s first full day at the Rehab Hospital and we are already seeing exciting things. I hardly know where to begin. They did some more assessments yesterday and there were improvements even from her assessments last week. Here are some of the highlights: she worked hard at sitting up yesterday and had good head control. When put in the prone position on her elbows she raised her head a number of times and turned it as well. She searched out the toy in front of her which was making music and lighting up. She responds to light, sound, touch and taste. Her reactions are sometimes very delayed, but the bottom line is, they are THERE!

During this morning’s therapy I thought, “Look how hard she is concentrating..” Then I realized that I had that impression because her eyebrows were knitted together and her forehead was wrinkled. This is fairly new for Abbie. She has not really had any facial expression since the accident, so it was exciting to see her emerge a little bit more. This afternoon, while bending her knees she had the same look on her face as when she used to be mad at her brothers. I rejoiced to see a glimpse of my old Abbie girl.

Her artificial nose was getting in the way of her therapy session this morning, so I put on her Passy-Muir (talking) valve, since it is a lot smaller. She kept it on for six hours, including during a nap – with oxygen sats between 98 and 100 with a marked decrease in secretions. This gives us great hope as we look forward to capping off her trach to prepare her for getting rid of it all together. The speech therapists have been using special swabs that have a lemon taste to stimulate Abbie’s mouth. This morning, with her Passy-Muir on she could really taste them for the first time, but didn’t respond too much. By this afternoon’s session she knew she wanted the yummy taste and worked her mouth much better.

Now, for the very most exciting and amazing thing…during speech therapy they showed her how to raise her arm and point to me. Then, they asked her where her mommy was, and without assistance she raised her arm and pointed to me!!! All of these things I’ve told you, as well as all the ones I don’t have time to write about boil down to one thing…our Abbie is in there and is working incredibly hard to come back to us. Today our hope has transformed from whispered prayers to a concrete, visible foundation for the rest of Abbie’s journey. I knew that she would thrive with intense therapy, but I never expected to see changes so soon!

Before today’s sessions I was thinking that I am willing to work the rest of my life to help Abbie overcome those five minutes when I failed her. I then realized that in her case, my failure had instant, dramatic, severe results, but that at one time or another I had failed my other kids, too. We all have in subtle or obvious way. The time he really needed me to listen and I didn’t. The time I vented my misplaced anger. The time I allowed my sarcasm to cut him to the bone. “ Boy,” I thought, “ this is sure a depressing realization.” Thankfully, then God gave me the rest of the story. I failed Abbie, and she is paying the price, BUT, there is hope for recovery, for healing – more now than ever. And, the same goes for all of us. There is always a chance to heal what has been hurt, and I’ve found through this journey that it is never as daunting as it looks once you get going. I’ve also learned even what looks like permanent damage can change and improve given time, patience and dedicated, loving perseverance. Abbie is teaching me lessons that will help me heal the bruises in all of my other relationships.

I have been fortunate to be in touch with another mom traveling this path. Her daughter Isabelle (who turned 2 yesterday) drowned in the pool at their Oklahoma home on May 16. It helps to open my heart to someone who knows my pain and shares my hope. Isabelle is fighting the same fight as Abbie – would you lift her up as well. Please pray for the appropriate therapies and for encouraging people to surround Isabelle. I am spending quite a bit of time at the hospital with Abbie, so the updates may be a little irregular, but I know they will be exciting. Please pray for our family, especially the other kids, as we adjust to this new situation. It is difficult to balance all of the needs, and I don’t want anything to slide. Thank you so much for sharing our enthusiasm and awe at the work of God in Abbie.

Sunday, 7/25 3:30pm

A busy, wonderful day. We are packing up Abbie’s hair pretties, nightgowns, clothes and toys for the big trip to the Rehab Hospital tomorrow. The bittersweet feeling is very slight because we are so excited about what this means for Abbie, and what she is going to be able to accomplish.

We took her to church this morning, and again, hearing the music made her day. She loved it so much that even after the music stopped she was serenading the congregation with her signature, “cluck-cluck-cluck.” We observed the Lord’s Supper today, and it was an even more powerful remembrance than usual. Because of Abbie’s wheelchair we have to sit right in the front row, and we were nearly on top of the table with the elements of the Supper – so much so that I almost felt I was in the way. The Lord said, “Now you can concretely see how near to Me your situation has brought you.” Before I took the bread and wine (ok, we’re Baptist – it was juice) God said, “I want to you to see how much it cost to give you the hope you have. Please don’t turn so quickly away from it or let others steal it from you. It cost me the Son I love immeasurably. That’s how much I wanted to give you hope.”

The message today also encouraged me to have hope despite obstacles. Ephesians 2:4 contains two words that change everything…”But, God…” In this context it was talking about God loving us and saving us despite being unworthy. To me it also means that He can choose to do whatever He wants in any situation. Abbie’s MRI looked ugly, she suffered a serious brain injury, the odds are very stacked against her, BUT GOD has the final say and the complete plan. So, I can wring my hands and wet my hanky with tears. I can plan, research, do therapy, and pray. I can listen to experts. I can ignore experts. All the evidence can say that Abbie will never recover, BUT GOD is sovereign and that is all that matters in the end.

Later, as Ray and I were talking about Abbie’s move to Rehab, a very clear picture of Lazarus entered my mind. As I prayed in the ER, thinking she was lost, I cried out to the God who had called Lazarus forth from the tomb. Today, God led me through the rest the story. Yes, He raised him. But, human hands had to unwrap Lazarus from his burial dressings.

Abbie died on May 3rd, and God brought her back to us. Now it is up to human hands, with God’s direction, to unwrap Abbie, to restore her fully to us. Please join with our family in praying for all the therapists, physicians, and nurses who are going to be the hands that reveal the healing God has already performed. Abbie’s team of therapists at RHP are going to have weekly meetings to assess her progress. She will remain an inpatient as long as she is showing progress and they think continuing her stay will help her. So, I would like to post specific weekly prayer requests based on their assessments. Partially so that we can pray effectively, but more so that we can all look back on the items “checked off”, the things already accomplished.

For this week would you pray for: 1. A smooth adjustment to a new setting. 2. Decreased tone in her muscles, in her legs in particular 3. Faster response time to commands
 4. Vocalization with her Passy-Muir valve on. 5. Stamina to complete her therapies. 6. A marked improvement in all assessed areas by the first weekly meeting.

I hope that somehow tonight, despite the limitations of electronic communication, I have been able to give you some sense of the hope and anticipation that we have. Good things are right around the corner! From Abbie’s new room, which we were in last Tues., I noticed the view of the mountains. Grateful for a new view, I slid the curtains open further. Hmmm – two mountains with a valley between them, only this time, I could see all the way through the valley. I could see the blue sky at the other end! We are beginning our journey OUT of the valley. There is much terrain to be covered, and some of it is rough, but the patch of blue at the end beckons and encourages us. There will be a day when we sit on the beach on the other side of the mountains, with the valley behind us, and say, “Remember when…”

Friday, 7/23 10:15 pm

So, so, sooo many praises to catch you up on that I am afraid I am going to forget one in this update. Let’s start with a biggie that at first glance doesn’t seem to be a source of praise at all.

This coming Monday, 7/26, Abbie is going to leave home and be an inpatient again. We are thrilled!! She is going to be admitted to the Rehab Hospital of the Pacific. We were really hoping to be able to do an intensive day program there and still bring her home at night. When we met with RHP staff on Thurs. to discuss options, a day program wasn’t even presented. I was crushed at the thought of separating our family again, and losing the joy of having Abbie home with us. But, as I listened to the reasoning behind their recommendation for an inpatient stay my heart leaped inside my chest. Their goals are so ambitious that Abbie will really need around the clock monitoring to achieve them.

We are talking about getting rid of her trach, getting rid of tube feedings, being able to transfer an object from one hand to another across her midline, being able to correctly identify 2 out of 3 objects, being able to communicate her wants/needs with her clucking, assistive devices or speechand that’s not even the complete list. And, these are goals that have been set for the next 4-8 weeks! The therapists would not have written goals like these if they didn’t believe they could help Abbie achieve them. I was stunned when I opened my heart to really hear what they were saying about the possibilities for Abbie. PRAISE BE TO GOD!!!

The staff at RHP is an incredible group of people who have really taken Abbie’s plight to heart. I can best sum up their attitude with a comment that their Chief Medical Officer made to Ray, We don’y know exactly how much we are going to be able to help Abbie, but we are going to die trying. I had difficulty falling asleep last night because of my anticipation.

As much as I have shared on this site, there are some things that I’ve kept between God and myself. Like Mary, I have treasured things up in my heart. Way back on May 17th God said some very clear things to me about Abbie, and one was “12 weeks.” ÊWell, don’t you know that every day since May 18th I have been bugging God to tell me what He meant. Would Abbie talk, would she eat, would she “awake”, what??? God never gave me a single clue, He just kept reiterating “12 weeks.” I sat bolt upright out of a nap yesterday when I realized that Monday, the day we are going to admit Abbie, is exactly 12 weeks after her accident. I could sense Him smile as I finally unwrapped this gift, and the card attached said, “Now the real miracle begins.” Abbie will be getting 2 sessions of intense therapy each day, including weekend days if she can tolerate it.

For those on Oahu who may want to see her, visiting hours at RHP are 4:30-8:30pm to avoid interfering with therapies or much-needed rest. We will be able to take her out on day passes, so we’re planning to continue taking her to church every Sunday.

And, as for Abbie herself, she gave me a thrilling night last night. She woke up around 1am and was just THERE. I asked her to smile five times, and she did. I asked her to squeeze the doggies in her hands and she did. Then, I asked her to lift them, and, yep, she did. She was yawning and looking right at me.

After watching so many iterations of some vision/neurological tests I know the routine, so I did some of them, and she responded. She even turned her head quickly away when she saw the suction catheter coming. Today we had a short appointment at Shriner’s, and Crystal and I both noticed her shrugging her shoulders to try to raise her arms onto the armrests of her wheelchair. When I picked up her right arm to help her, the tone was absolutely normal — it kind of freaked me out because I am so used to her rigidity now. She is on her way back!!! She was breathing through her mouth today even without her Passy-Muir valve on. She has been able to fall asleep and nap easily today after several days of high heart rates and difficulty settling down. As I suspected at the time, it seems like that may have been yet another phase she was passing through as she gained a little more awareness.

One last thing, from Ray’s perspective – he was grieving a bit in the middle of the night on Weds., looking at pictures we had just gotten developed from before the accident. He cried out to God saying, “I just want her 100% back.” Then, he got up to walk back into Abbie’s room. He glanced at the monitor and saw “100/100.” I can’t tell you how rare it is that her sats are at 100 at the same time her heart rate is. Ray got double what he asked for!

My devotion for the day said, “Be assured that if God waits longer than you wish, it is only to make the blessing doubly precious.” Isaiah 30:18 “And therefore will the Lord wait, that He may be gracious unto you; blessed are all they that wait for Him.”

One month from today is Abbie’s birthday. I had to write that just because I CAN!!

Weds. 7/21 2pm

Thank you so much for all of the caring messages and emails in response to my painful post yesterday. In the same way that I cannot fully describe my feelings, I also cannot adequately describe the comfort you give me, especially during the hard days. Just as windows occasionally need a good scrubbing to let the light shine through, I think my heart needed to be cleansed by the tears I let fall yesterday. And, the light certainly is streaming through!

Yesterday evening Ray called just before leaving work. He knew how much pain I was in and wanted to pass on good news as soon as he got it. The teams that evaluated Abbie yesterday all met after we left. The Chief Medical Officer called Ray to tell him about that meeting, and the first thing he said is, “You’ve got to know that there wasn’t a dry eye in the room.”

You will be hearing much more about these people in the days and weeks to come, but I want to tell you now what incredibly huge hearts they have and how far out of their way they are going for Abbie. He went on to tell Ray that all of the therapists were very positive and are hopeful that Abbie will make great gains with appropriate, aggressive therapy.

These words pierced the gloom surrounding me and reminded me again that hope never fails, and that while there is life, there is hope! They are completing a care plan for Abbie, and her daily therapies will begin soon. I called my sister, Tara, yesterday, since I knew that even if I couldn’t string together one rational sentence she would know what I was trying to say. And, I knew that she could understand me through tears, since she caused so many of them in my childhood (just kidding!) As we talked one thing we agreed on is that it would be so good to talk to others in the same situation.

I have corresponded with a couple families who have been through this, but just didn’t have the energy to compose an email. Then, one of the posts at Abbie’s site referred me to a site about a woman named Lisa, www.getwelllisa.com. She was in an auto accident in September 2002, and has come so far from the day of the decision to remove life support. Just reading her progress reports, and seeing how long it took her to regain some functions gave me such hope and perspective. God answered a prayer I hadn’t even spoken.

This morning I had a meeting at our local elementary school to begin the long process of getting services for Abbie through the DOE. There were nine people at this meeting, but the one I talked to the most was the physical therapist. She was so encouraging as I told her about Abbie’s current abilities, including holding herself in her favorite “Sphinx” pose, her head control, and her range of motion. She had such a positive outlook that it was infectious. Everyone at the table wanted to see the “before” pictures of Abbie that I keep on the cover of her binder, which I appreciated. They want to see her as a girl with a future, not just a past. They want to see what we are working toward, not just looking back on. As the meeting ended and most of the people left, the PT lingered to tell me that she had lost an infant child, and that while she couldn’t feel my exact pain, she knows the loss of a child. This was another hug from God, another “don’t be lonely” postcard.

I have to admit that I felt a little guilty about posting my feelings yesterday. I felt like I was letting God down by wobbling in my faith and hope. Then, I remembered others who cried out in desperation. David wrote many of his psalms with tear-filled eyes. Paul certainly cried out for his thorn to be removed. And, even our Saviour, cried out just before His betrayal, for the Father to take His cup, if it be His will. I realized that if I posted only good news, good feelings, and good thoughts that wouldn’t really be faith, it would be denial. Faith takes into account fear, fatigue, frailty, and pain, and then chooses to persevere beyond them. It’s not the avoidance or absence of these things that is evidence of faith, it is the survival of them, the conquering of them that shows faith. True faith is not a beautiful, delicate, ornamental thing. It is a battle-scarred, industrial-strength, bloody badge, misshapen and dented from the battles it has seen. And, it is the only thing we can ultimately rely on.

Thank you for sharing this journey with us — even the painful parts. I am so humbled that many of you cried with me yesterday, and pray that the light is streaming through the window of your heart today, too!

Abbie, with her sweet friend, Evie, on Abbie’s first day back at church.

Tuesday, 7/20, 3pm

So much of me wants to avoid writing today because I am just in anguish and don’t want to admit that to anyone. Today has been a long and painful day. Abbie was evaluated by team of physical therapists, occupational therapist, speech therapists as well as a neurphysiatrist.

Each of the teams had to ask extensive questions about what Abbie was like before the accident. It brought back so many memories. Not big events, but the little details that go almost unnoticed in a day. How she looked with her shirt under her chin trying to snap her “pocket pants, with her big belly in the way. How she loved to play with her building blocks and could name every color. How storytime couldn’t be just one book. We had to wait until Abbie had emptied her entire book box to begin, and then couldn’t stop until we’d read them all.

I am utterly consumed with grief today, and I don’t know what to do. Having Abbie here with us now is not stanching my tears, I miss the Abbie we had. I recall all the hopeful and faithful things I’ve written, yet they seem so far from me now. I cry out to God because He seems so distant, yet I know He is right here and sees my heart breaking and cries with me. I do not know what to write, I do not know what to say. I sense somehow that you know my heart, and that is enough. I know that tomorrow will be a brighter day, and I know that all of God’s promises are true. Even when his child is weak.

Monday, 7/19 noon

What a day yesterday was!! Abbie joined us at the 10am worship service and was happy to hear so many familiar voices. I was a little concerned about how she would respond to the volume of the music. After watching her during the songs, I wish we had a worship service every day! She loved it, and was so relaxed whenever the music played. There were times it was a little overwhelming for me to be holding Abbie’s little hand while praying or singing. This was such a dream come true, and I couldn’t believe that we had made it this far. A special treat was seeing her friend Evie, who will be moving away this week. Evie was so gentle and tender, stroking Abbie’s arm, holding her hand, and reading to her. I was blessed just watching the two of them together.

The rest of the day dissolved into an intense migraine for me and restlessness for Abbie. She just couldn’t fall asleep. She was tired in the afternoon, and would doze for minutes at a time, but then awake again. Meanwhile, I couldn’t find my migraine medication until 6pm, way too late for it to be effective. So…at 7pm Ray took me to the ER. As I was lying on the bed in the fetal position the Lord clearly said, “Relax, you are right where you need to be to get help.” The next image to enter my mind was myself on my knees before the throne, and the same words came to me…”right where you need to be to get help.” This lesson stuck with me through the night because I felt like there was more to it that I wasn’t understanding yet.

Finally, reflecting on the events yesterday and how the ER trip probably could’ve been avoided if I would have taken my medicine right away, I “got” it. How many times do I nibble around the edges of my problems, thinking that a little more organization, a little more foresight, a little more patience or a little more of something I don’t have will solve it? I don’t take the “medicine” of God’s Word, and his direction soon enough, and eventually I find myself on my knees asking for mercy and forgiveness. And, unfortunately, the pain caused by me not taking my “medicine” in a timely manner is usually borne not by me, but by those around me. Instead of my own migraine headache, I cause migraine heartaches when I wander too long on my own, without turning to God for guidance, correction, and encouragement. Thankfully, He is long-suffering and ever patient with me. He never says, “Oh no! Not YOU again!?! Why don’t you learn your lesson?” He’s ever prepared to give me a “do-over” when I repent and ask. And, that brings more relief than the Demerol did last night!

Please pray for Abbie to be comfortable today. She is restless again, and although she is obviously tired, she can’t fall asleep. I pray for wisdom to know what to do for her. Sometimes it is so hard to care for her because I worry that I am hurting her without knowing it, or missing a sign of discomfort. Praise God with me today for letting her go to His house yesterday, although I have a feeling she’s seen a glimpse of His heavenly house and will hopefully tell us about it one day.

Soaking up some rays at the beach.

Saturday, 7/17, 9:30pm

Abbie went to the beach today!! I can barely type because I keep re-reading that first sentence with disbelief and thanksgiving. Crystal’s joint party with her friend Josh was thrilling for all. The kids were busy trying to keep away from the plentiful Man-o’-War (stinging jellyfish), and we were busy soaking in one more facet of God’s unfolding miracle in Abbie. The minute she felt the sea breezes on her face she reacted with both interest and relaxation. She enjoyed all the familiar voices and turned her head purposefully to find whomever she was looking for. She is pretty good at turning her head side-to-side, but today she turned quickly from her left shoulder and stopped dead center to stare at her beloved Uncle Jack. I took her out of her wheelchair and carried her down onto the beach, very nearly into the surf. She got very excited once she could hear the waves loudly hitting the beach. We stayed for about two hours, and would’ve stayed longer but we had to be home to meet her nurse. I think that going to the beach will now become a weekly activity for the Vara family!

Her nurse had a great idea to help Abbie’s knees. She recommended that we try sitting Abbie on a little stool in the bathtub to give her legs room to bend. That’s all the reason I needed for a trip to PriceBusters for the stool, and the 19 other items I didn’t know I needed until I strolled the aisles! We filled the tub up much farther than we have been, enough so that we could turn on the jets. Finally! A use for the tub features that look cool but never get used! The minute we put her in the warm bubbly water her knees relaxed. I could easily bend them a bit, and she bent them on her own as well! This is a terrific way to do the most painful part of Abbie’s therapy, so bath time may become a thrice daily event.

We are planning to take Abbie to church with us tomorrow. I almost feel that, although we have a long way yet to go, taking her to church will be like planting a victory flag on a summit that is so significant to our family. Worshipping together on Sundays binds our hearts and resets our course for the entire week. Not having Abbie with us has both distracted and depressed us on Sundays. Tomorrow will provide one more huge piece of our “new normal” puzzle. There’s so much more I wish to say, but fatigue is numbing my mind, so I don’t want to ramble. Just know that some of my first thoughts, and some of my last thoughts of each day are overwhelming gratitude for the unending and unimaginable support we are receiving!

Thursday, 7/15,3pm

Alright…I know that, as Ray put it, I’ve been “slacking on the updates” this week. But, I promise, what I have to tell you today will more than make up for it! Abbie was assessed by a neurologist specializing in rehabilitation today. He spoke directly to her in a loud, friendly voice, and she seemed to take right to him. After he had checked her over he sat back down and said the most amazing words I have ever heard. “It looks like, as far as her recovery, the sky is the limit.” The sky is the limit!!! Ray and I held it together until the doctor stepped out of the room briefly. Then , with clasped hands and tears welling up, we just whispered those words to each other in disbelief. He went so far to say that we shouldn’t listen to anyone who doesn’t have this outlook on Abbie’s recovery.

The neurologist then spent a great deal of time with us discussing what the best rehabilitative plan will be for Abbie, and we are going to work to implement it. I am beside myself with joy, and also with relief. I knew that to get the best outcome Abbie would need more therapy than I could consistently provide – and now I feel that I will have teammates helping me, and helping Abbie. But, wait…hang on, it gets better. A couple of times during the appointment the doctor mentioned other things that aid recovery, including prayer. Finally, at the end of our visit, Ray asked him specifically about this. He answered, “The longer I have been doing this kind of work, the more I have seen and come to believe in the power of prayer.” My heart was shrieking “Halleluja!!!” as I struggled to maintain my you-can-trust-me-I’m-a-sane-mom exterior. Not only do we have a new team member who is thoroughly positive and committed, but who acknowledges of the power of prayer! This day has been so incredibly beyond our most daring expecations that it still hasn’t all sunk in. So, you see – this update was worth waiting for!

Abbie continues to improve every day. She had her first physical therapy visit yesterday. The therapist was a wonderful woman who spent about an hour assessing Abbie. It was so encouraging to hear someone new say things like, “She’s so attentive.” “She’s so smart” “She’s such a hard worker.” She would roll Abbie from her back almost to her front. After doing this several times she stopped in order to move on to another exercise. Abbie lifted her arm and leg in an attempt to do it herself. There was a very special bonus about the therapy yesterday. Abbie’s pediatrician was in the neighborhood, so she stopped by and observed the entire session, along with her very patient daughter. What a blessing we have in this physician, although I feel almost silly saying it that way. During the therapy Dr. L. seemed almost more like a proud auntie than a doctor – she really is part of the family now!

Bath time remains the miracle session every day. During her last two baths Abbie not only moved her wrist and hand, but actually bent her elbow on her own to draw her hand up towards herself. Amazing to watch! She has been sleeping reliably at night, from around 10pm until nearly 6am. We have to bother her at 2am to reposition her and take her splints off, but she doesn’t usually stay away for long.

For those of you who have been praying for Baby Isabella, just a quick note – her mommy got to hold her with no breathing apparatus attached! This cannot be described as anything but a miracle. She is making more progress than they thought she could (sound familiar?) So, please, keep lifting her up along with her little friend Abbie. When we were discussing the power of prayer with the neurologist this morning we were privileged to tell him about Abbie’s site, and all of you who hold her up continuously. We told him that she is only here with us now because of your prayers. We will never be able to thank you enough!

Laying down by my self.

Saturday, 7/17, 2:20am

TGIF has never had such meaning before! This has been a week full of great developments, but it has also been exhausting. I am looking forward to two days of having Daddy here, and two days without appointments.

We visited Abbie’s pediatrician in her office today—what a victory! Doing things that we thought we’d never again do with Abbie, even the mundane things like doctor’s visits, reinforce just how blessed we are by each day we have her. We decided that we will bump up Abbie’s Baclofen (muscle relaxant) just a little bit. The last increase brought great relief to Abbie because it allowed her to unlock and relax her arms. We are hoping to get to that point with her legs.

Ray and I then went to have lunch in his cafeteria. It was like a homecoming for Abbie, with so many people greeting her warmly and lovingly, cheering her victory and proclaiming her miracle. Of course, God didn’t stop with just giving us general warm fuzzies. As we were eating a woman we didn’t know approached us and asked if we would mind if she prayed for Abbie. You can imagine our answer. She said she’d been sitting across the room watching Abbie and just saw such a wonderful, bright glow around her. She assured us that Abbie was going to get better. Immediately after this encounter, a woman who works at the hospital walked over and tearfully touched Abbie’s head. She gave Abbie a wonderful stuffed Care-Bear, which is the new “Glow-A-Lot” bear. The word “coincidence” no longer exists in our vocabulary.

The three of us spent the afternoon at Shriner’s Hospital for Children, yet another place I thought I’d never be. We are going through Shriner’s to get a wheelchair built for Abbie to replace the loaner from Kapiolani. She had a spinal X-ray while we were there. Kids who are immobile for extended periods of time have a much higher incidence of scoliosis. Since Abbie was a perfectly healthy, rambunctious child up until two months ago we weren’t expecting to see anything abnormal, and her X-ray was fine.

We rushed home in order to meet the Physical Therapist at four. With just a few minutes until her arrival I opened mail that had arrived. I received a card from a woman, Barbara, whom I know only through her daughter and have never met in person. It is probably the fourth or fifth card of encouragement she’s sent me. They mean so much because her words are always so heartfelt and uplifting, but also because Barbara has walked this valley with a different destination. She knows the pain of losing a child because her youngest son was killed in Afghanistan in 2002. The outside of today’s card read,”Now unto Him who is able to do exceedingly abundantly above all that we ask or think…to Him be the glory.” (Ephesians 3:20,21) I smiled because “exceedingly abundantly” was such a theme of the day yesterday with our rehab meeting. Then I opened the card to read “God is working in more ways than you have asked Him. He is doing more things for you than your faith can imagine!” I had to catch my breath before I could even begin to read Barbara’s note. My struggle is never with the big picture of God’s ability, goodness or faithfulness. My struggle is in the minute-by-minute progression, believing in His provision and plan when my eyes don’t see obvious signs of improvement, or when I am grieving what Abbie has lost and is currently fighting through. But, that’s what “exceedingly abundantly” means – not only is He always at work, always with our good in mind, but He purposes to do more than I can think to pray for. The card just reminded me that I cannot even imagine all that He is doing in and through Abbie, and that I don’t have to worry about not “praying correctly”, because His plan so far outstrips my ability to ask.

Ray and I have a closely-guarded tradition of Friday being our date night. This evening was our first one since Abbie’s accident. When he asked me what I wanted to do, the first thing that came to mind is to do the most “normal” things possible. So, I asked him to make reservations at our usual Friday night place, Assagio’s in Hawaii Kai. We love their food, as well as the marina and mountain views. But, just as much, we love the owner, Maile, and I was anxious to see her again, This would be another piece of normalcy to fit into the new jigsaw puzzle of our life. We walked in and got a long hug from Maile, and then saw at least five families we knew. It must’ve taken us fifteen minutes to actually get to our table. We sat down and Ray said, “You know, we prayed about what to do tonight, and I feel that, through so many of our friends being here, God just hung out a banner that says ‘Welcome Back!!’”

Oh yea…Abbie… I guess I should stop talking about my self, self, self and tell you about her!! Her PT wanted to see her in the tub, so we actually did most of her therapy in the tub today. I like any excuse to get her into warm water and see her relaxed. The therapist worked with her for an hour, and after she left I did some more work with Abbie. Her stamina is pretty amazing, and will really aid in her recovery. As you can see in the picture, Abbie can hold herself while laying on her stomach and propped up on her elbows. She held that position for over five minutes today. She can put her head down and then bring it back up when we ask her to. Today she also looked to her sides while remaining steady in her pose. She just looked so beautiful with her freshly-washed hair hanging loosely around her shoulders. I wish this picture could’ve captured her glow. We have also increased the volume per hour in her feeding so during therapy we can stop the feeding. Please pray that she will be able to handle this change. The biggest challenge will be suctioning. Please pray that she will not vomit in response to this highly-irritating procedure. Please also continue to pray for her muscle tone, particularly in her legs. Her little knees have become hyperextended, and she looks so uncomfortable at times. The therapist could feel her trying so hard to obey the command to bend her knees, she just can’t right now.

I hope that you have a great weekend! We are planning to take Abbie to the beach for the first time since her accident. Crystal is having a birthday party tomorrow, thanks to the efforts of friends. It will be in Waimanalo, which, for those of you unfamiliar with Hawaii, is one place where God the Artist really outdid Himself. I am hoping that it goes smoothly, and particularly that it is not too hot for Abbie. I will post a picture of her with the surf in the background…praise God!

One of Abbie’s new toys.

Monday 7/12 10pm

The birthday bonanza at our house – Crystal’s 17th birthday, my nephew Connor’s 2nd birthday, and my Dad’s XXth birthday. It started out calmly, even as I realized with more than a little apprehension that this was my first day on my own in our new reality. Ray went back to work this morning, leaving me alone with all six kids. We had a nice quiet morning, wheeling Abbie over to the fish tank to listen to the gurgling water and to look at the fish. We then took her to the piano to listen to my raggedy version of “Fur Elise” and RJ and Matthew’s songs from their lessons. She signaled her approval with her special clucking sound. That sound was Abbie’s signature when she was younger. She couldn’t say the “k” sound at the end of words, so for milk she would say “mil-cluck” or for drink she would say “drin-cluck.” It is so sweet to hear her do something so familiar and so uniquely her.
Then, the phone started ringing, and didn’t stop for the next six hours. It seems that every agency we’re working with needed to talk with me today. We are working on replacing some of the medical equipment that isn’t working properly. The in-home therapies that we thought we had set up, aren’t lined up. This is a big area in need of prayer. Continued, aggressive therapy is key to Abbie’s recovery, and it looks like we may be back to doing it all on an outpatient basis, which would be nine weekly appointments in addition to doctor’s visits. There are some new options which appeared for the first time today – so please just pray that the right doors would open and that we would have the discernment to see which avenues to pursue.

After the nurse arrived to care for Abbie, I ran an errand to take care of an administrative detail about Abbie. I was unable to complete the process, for the fifth time. I was so frustrated that the tears started flowing on the way home. I rarely cry these days, partially because I don’t have the energy or time, and partially because I am afraid that if I start I may not stop. The tears were not just about this relatively minor, if irritating, task – that was simply the pin that pricked the balloon, releasing the torrent inside. I finally cried about everything, to the point of being overwhelmed. Fortunately, I had decided to take the scenic drive home. And, I do mean truly scenic – just as I was losing my vision because of the blur of tears I had Kapiolani Park and Diamond Head to my left and Queen’s Beach to my right, and the first notes of “You Raise Me Up” by Selah came on the radio. This song makes me think of you all—the chorus goes, “You raise me up, so I can stand on mountains. You raise me up, to walk on stormy seas. I am strong when I am on your shoulders. You raise me up to more than I can be.” I was completely broken, sobbing, and lost in despair but those words allowed me to remember your prayers and to be carried home by them. You can never know how keenly I feel your support and how powerfully you lift me up.

I arrived home to find a piece of mail from an unfamiliar address, Champion Forest Baptist Church, in Houston. The outside said “Prayer Note. You were remembered in prayer today!” The message inside read, “Dearest family, We are praying for an awesome recovery and miraculous healing in Jesus’ Name. May the Lord give you renewed strength, hope and courage to care for Abbie each day. Thank God for His awesome blessings. Sincerely in Christ, Ron M.” See what I mean about being lifted up and carried on shoulders?? God’s timing and His people’s faithfulness continue to astound me daily.

In the picture of Abbie and RJ you will see a little purple valve on the end of Abbie’s trach. That is her Passy-Muir valve, which allows her to exhale through her mouth and nose. Despite what I just wrote about not crying often, receiving this device made the tears flow as well. I was already so thankful for this little thing that may give my daughter her voice back, but then I started reading the instruction manual and really lost it. On the cover is a picture of a man in a wheelchair. I thought, “How nice, they have a real user being a model for the manual.” Then, I read the paragraph below the picture.

It is a little lengthy, but I want you to have a chance to read it as well. It was written by David Muir, the inventor of the valve, who was the man in the picture.

He wrote, “I was diagnosed with Muscular Dystrophy at age five. Over the years I gradually weakened and became a quadriplegic. I was twenty-three and studying biochemical engineering in college when I had a respiratory arrest and became ventilator dependent. I had accepted that I could not walk, and I had accepted the other difficulties of my disease. However, when I realized that I could not talk, I wanted to give up. Then I realized I was not ready yet. I said to myself, ‘Wait a minute. You’ve never given up this easily before and you’re not going to this time. There has to be a way around this problem.’ These thoughts became my theme for three agonizing months while I was working on my design for the speaking valve. As corny as it sounds, every rain cloud has a silver lining, this is absolutely true. Ask me, I know first hand.” I sat on the hospital chair and sobbed as I read the thoughts of a kindred spirit – a miner of silver linings. I was so thankful for his stubborn spirit and his creative mind. My heart overflowed with gratitude for his perseverance that may allow me to hear Abbie’s voice again. David Muir wrote those words in January of 1990. He passed away in August of the same year.

Abbie, with her purple Passy-Muir Valve

Sunday 7/11

Our first Sabbath with Abbie home. We scheduled a nurse to arrive at 7:30am so that we could be at church by 8:15. That was the plan at least. The nurse arrived right on time, but after a fairly sleepless night we just couldn’t get the train moving fast enough to make it to Sunday school. We did make it to the 10am worship, at 10:05. It was great for Ray and I to be at church together, but terribly difficult to leave Abbie behind. The tears began to flow as we stood and sang, “Holy, holy, holy, Lord God Almighty. Early in the morning our song shall rise to Thee.” He has always met us in the morning with a fresh dose of encouragement and a renewal of hope.

Abbie slept quite a bit during the day, to compensate for keeping her Daddy company in the middle of the night. But, that doesn’t mean it was a day without a miracle. We just had to wait until bath time at 8pm. As Abbie’s body relaxed into my arms in the hot water she became much more responsive to commands. When we asked her to move her hand, she actually turned it, lifted it out of the water and moved her fingers! Later, as I was doing our after-bath therapy I put Abbie on her stomach and propped her on her bent elbows. Just bending her elbows is a big accomplishment for Abbie, but she went a mile further…she held herself in that position very solidly on her own. I let go of her, sat back and smiled. We are seeing such improvements in her muscle tone. We don’t know if it is due only to the increase of her muscle relaxant dose, but we like to think that being home plays a part as well. Please pray specifically for two physical concerns – a decrease in her muscle tone and improvements in her vision. We can see the Healer at work daily, and we know how he loves to anwers the prayers of His people!

Abbie and RJ just hanging out.

Saturday, 7/10 9:25pm

Well, we didn’t make it to the Assistive Technology fair, but we did get out of the house with Abbie today, which was a huge accomplishment for us. For those of you with kids – do you remember the first time you tried to go somewhere with your first baby, and how long of a preparation process it was? Well, we were like brand-new parents again today, fumbling our way out the door, remembering “one last thing” about ten times. We ran an errand and then we went to one of our favorite restaurants, Antonio’s in Kahala, for pizza and wings. We all went in and sat at our usual table, and got another piece of our life back. Abbie fell asleep while there, and slept for almost the entire meal. She could’ve been just another little girl in a fancy stroller for all most people knew. But, then another patron came in , someone who works with Ray. She came over to see Abbie and to tell us she has been praying for her. In that moment I remembered that Abbie is no longer just another little girl, and that there are many blessings in the trial. And again, now that I am out of the hospital cocoon, God is showing me concretely every day how many people truly are lifting Abbie up, which lightens my burden more than I can describe.

In some ways I have been a little ambivalent about having nursing care in our home every day. It is a great help, and affords me some respite, but I enjoy taking care of Abbie on my own. Then, we had an angel of a nurse come today and totally change my outlook. She did therapy with Abbie, sat her up and read to her, let Abbie wear her stethoscope and sang “The Wheels on the Bus” through it…she really cared for Abbie as a little girl and not a patient. I have to give up the pride involved with wanting to care for Abbie completely independently and admit that it is best for her if others, such as this wonderful nurse, help her on the road to recovery. This is a difficult conclusion for a mom to come to, but not many things in this journey have been easy.

Her eyes are wide and bright now and it makes her look so much more like herself. Actually, she now looks like a much longer and chunkier version of herself. At this rate, she’ll be as tall as me by the time she’s seven. For the first time today I mentally changed the way I am going to describe Abbie to the various agencies and people we will be working with. I am so tired of calling her a “near-drowning victim.” So, from now on she will be a “near-drowning survivor.” Such a small linguistic difference, such a huge mental change. We have been getting her dressed every day for about three weeks now, and stopped calling her “sick” at about the same time we started getting her out of the PJs . We now say that she is “healing.” I think that our attitude can affect everyone who is involved with her care, and by choosing these words we are implicitly setting the goal at full recovery. I used to brag that Abbie had no problem surviving four older brothers. I think now that her surviving them prepared her to overcome this, with all of them cheering her every step.

Home sweet home.

Friday, 7/9, 11pm

Our first full day as a reunited family is coming to a peaceful close. Abbie is doing a good job at settling down around 10pm and sleeping pretty much through the night. Both Ray and I experienced a physical letdown today. I slept a good part of the morning after loading up on Sudafed and my migraine medicine. He had to go to bed early tonight because he was feeling poorly. I think that we have been resisting this crash for weeks, and now that we are home we finally had the chance to just fall into bed when we needed to.

Abbie had dinner with us tonight. We are committed to including her in as much of the family activity as possible. So, we wheeled her up to the table and talked to her during the meal as we would any of our children. We don’t yet have a bath chair like the one in the hospital, so I have been acting like one for Abbie. I get in the tub and hold her, which is probably nicer for her, and much more enjoyable for me as well! I think she really likes the floating sensation and the relaxation the warm water brings.

She continues to respond well to our therapy routines, and I was able to bend her knees tonight, which I couldn’t do last night. There happens to be an assistive technology (AT) fair in town this weekend. AT are the devices that will help Abbie communicate until she can verbalize easily. We are planning to take Abbie and go to it in the morning. This will be our first trip out and about. Would you please just pray that it goes smoothly?

God gave me a great illustration of our experience today, but I must first give you a couple of disclaimers. First, cockroaches are a fact of life in Hawaii. Our exterminator does a great job, and really limits their appearances in our house, but the occasional hardy one does visit us. Also, cockroaches in your home don’t necessarily constitute a judgment about the cleanliness of your home (Ray would really want you to know this!) So…I was sinking into my first hot bath in two months today, ready to relax and recover. I looked up to see a large cockroach right above me.

My first instinct was to jump out of the bath and do a little “I’m so grossed out” jig on the bath mat. But, being too lazy to move that fast gave me enough time to remember that our bathtub is entirely enclosed, so actually I was protected by the plexiglass ceiling, and was looking at the underside of the roach as he crawled around. As he meandered above me I thought about how much it symbolized our journey with Abbie. Her accident was a shock, just like looking up to find that roach, only magnified a million times. Through the entire ordeal Ray and I had the sensation of seeing the tragedy and sensing the grief and fear, but not really experiencing it. We were on the other side of the Protector—He stood between us and the yawning chasm of the reality that could’ve engulfed and destroyed us. I wish God would’ve used a different messenger for that lesson, but the roach and I made peace, and I enjoyed a lovely bath (without looking up.)

I read through yesterday’s update because I write late at night and off the top of my head – often I don’t really remember what I wrote. I have to ask for your forbearance for the typos and misplaced words – please don’t worry for my children’s educational future..I really do know how to spell and use proper grammar!! Part of me wants to go back and edit much of what I’ve written, but I’m going to leave it alone so that I can remember just how tired and challenged I was, and so my honesty doesn’t get replaced with “what I wish I’d said” hindsight. Thank you so much for sharing our joy in Abbie’s homecoming. We are saving every message for her. Someday she will know how many people prayed for her. And, someday she’ll be able to tell us the songs she sang while sitting on Jesus’ lap.

Thursday, 7/8, 11pm


Today has been joyful chaos, with everything falling perfectly into place for Abbie’s transition home. Days of the week have been significant during this journey, with many turning points happening on Mondays. In light of this, I was wondering today why Abbie was coming home on a Thursday. Then, I reached back into my foggy memory and realized that Abbie first joined our family on a Thursday afternoon almost three years ago.

Today, she was received her as a gift from God all over again. Her Daddy carried her over the threshold at 3pm and so closed one chapter of Abbie’s story and began the much-anticipated “Chapter 2.” We walked in to find a huge “Welcome Home Abbie!” sign and lots of balloons from our “small group family.”

On the way home we saw an ambulance heading the other direction on the freeway. It was about the same time of day that Abbie and I took that ride all those weeks ago. Ray and I froze for a moment, sharing the same thoughts and feelings. To break the silence all I could say was, “The return trip is much more enjoyable.”

It was a strange sensation actually leaving the hospital. When the nurse handed me the final discharge paperwork I felt like the girl in Willy Wonka and the Chocolate Factory who found a golden ticket. All the way down the hall I kept waiting for someone to say “Stop! Where are you going?” Finally, we were outside in the hot sunshine, pushing Abbie toward the Suburban, just like we always did..although we never had a suction machine and portable oxygen along for the ride before. We had one of our beloved PICU nurses with us to help us with the transition home, and she rode ride next to Abbie. I almost got carsick because I couldn’t help but ride most of the way looking behind me to see how Abbie was liking the ride. I think she enjoyed the motion of the car, which relaxed her. We had the house fairly well-prepared for Abbie, so things flowed smoothly once we got home. She was very alert and seemed to note the difference in her environment. Within ten minutes of our arrival we had boys bickering near her bed, so we are well on our way back to “normal.”

God reached down to me with a couple of thunderbolts today. The first happened during my spree at Long’s drugstore this morning. Looking at my cart full of distilled water, vinegar, and hydrogen peroxide, the checker asked if I was moving and cleaning out my house. I answered hesitantly,”No, actually I am bringing my daughter home from the hospital after a long time.” She asked if she was OK, and I said, “She will be, but it will be a long road.” She paused, and then asked what happened. As I briefly explained Abbie’s story her eyes lit up. She asked me what my daughter’s name was, and when I said, “Abbie”, she smiled broadly. She said, “I have been praying for her, and you, since the beginning. I heard about her in my small group Bible study.” I was struck silent at having a stranger tell me this. I know that there are many of you whom I’ve never met who have been praying for Abbie, and God used this woman to represent all of you. I am so overwhelmed and humbled that you have taken the time to petition God on Abbie’s behalf.

The second thunderbolt came as I sat down today to begin an earlier attempt at an update. While checking my email I opened a message titled “A Sister in Christ.” The message began by saying that the writer was also the mother of a near drowning victim. She went on to say that she was writing to assure me that Abbie will recover fully..not because of her experience but because she was asked to send me that message. She argued with God about doing it, but finally obeyed. I started reading the message out loud to Ray before I’d even read it myself. I had to stop to collect myself a couple of times because she touched on several points that have torn our hearts. That moment, when you realize that God truly is speaking to you is so incredibly powerful that it’s difficult to even breathe. The writer didn’t even sign her own name, but simply closed with “Your Sister in Christ.” All I can say is “Thank God for family!!!”

I was anxious to see how the kids responded to Abbie being home. One word. Terrific! Kyle is going to be the best therapy for Abbie. He reads to her, plays with her, talks to her, and engages her incessantly. He follows me around wanting to learn how to run every machine, draw every medicine, and do every task. He is normally our happy, bouncy boy, but that has been somewhat dimmed during these weeks. Today I feel like we got our Kyle back along with Abbie. Chase is an incredible help, always looking for things he can be doing, even things I haven’t thought of yet. His love for his sister is so evident. I think the highlight of his day was getting to rock Abbie for a while. I really treasured being able to watch the twins play Hotwheels on the floor near Abbie’s bed tonight – normal things that a normal family enjoys. Crystal has been incredible. Her maturity, initiative, and and willingness to help have made such a difference in our ability to get everything done.

The last thing I did before leaving Abbie’s hospital room was to write a short message on the white board. I know it will probably be erased long before anyone else occupies the room, but it needed to be written, because it is the truth that sustained us for the 66 days Abbie was hospitalized. “All glory and praise belong to God!!”

Come on little sis, let’s go home.

Wednesday, 7/7

The last full day in the hospital was very trying for me but full of good things for Abbie. It feels like we have been jogging a marathon and are now sprinting the last mile. Very often today I was talking on the room phone, listening to my cell phone ring, taking care of Abbie and talking to someone in her room, all at the same time. So much coordination must be done to take Abbie home, and many of the pieces weren’t quite in place as the day began. I had a bit of a meltdown (ok, more than a bit), and then, trying to gather myself, I went to see what one of my daily devotionals had to say for today. The subject line said. “And then Jesus was led by the Spirit into the wilderness where He was tempted.” ARGH..that was me! I was being tempted to lose my cool, be rude, and react poorly, and I was not holding my own. I prayed for the strength to resist my fatigue and frustration, and from that point on the day took some miraculous turns.

One of the biggest variables was Abbie’s therapies. She needs physical therapy, occupational therapy, and speech therapy. It was unclear who was going to provide it and who was going to pay for it. Late in the afternoon one of our case workers called and asked if I was sitting down. Although I’d prayed for strength, I didn’t feel like I could absorb much more bad news..so I just held my breath. She told me that she found a home care agency that could provide all three therapies in our home. This is truly a miracle and so much more than I’d dared to hope for. This will dramatically improve our family life since we will be able to avoid nine trips to therapy each week. And, it is always better for therapies to be done in the setting where a child is most comfortable. This is such a blessing for Abbie and for our entire family!

At 3pm we did the trial with the Passy-Muir valve on Abbie’s trach. Normally the first trial is 15 minutes, although many people can only tolerate 30 seconds the first time. I was so curious to see how Abbie would do, and so anxious to hear any little sound. Well, true to her tenacious personality, Abbie went the full 15 minutes with ease, and had oxygen sats at 100% at the end of the trial, which was phenomenal. She did make one little sound, which I treasured. But, it was just as special to put my hand up to her face and feel her breath coming out of her mouth and nose again! You could see her react with a little bit of surprise the first minutes of the trial as she felt air come through her mouth and nose for the first time in a long while. The valve will not only allow her to vocalize, but will also strengthen her swallow and breathing, and improve her senses of smell and taste..all very exciting things. Abbie will most likely wear the valve three times a day for fifteen minutes each time, and then we will work up to longer periods of time.

We received the balance of the equipment we need today, so all is set for the big day tomorrow. I have her dress laid out and ready. The night of her accident her brothers packed a bag full of things they thought she and I would need. They included a cute little dress for Abbie and a pair of the panties she was so proud of. I sobbed when I saw them, thinking that she would never wear that dress again, since it wasn’t really a funeral-style dress. Tomorrow, she will wear it in victory as we carry her through the doorway of her home!

Way to go Abbie!

Tuesday, 7/6

One day and a wake-up is all that Miss Abbie has left as a resident at Kapiolani Women’s and Childrens. Ray and I spent the afternoon at home, receiving much of the equipment and supplies that we need to have prepared to bring Abbie home. It was exciting and sobering at the same time. We are so anxious to have her home, but the reality of how different she will be really hit home.

It was a day of compounded blessings. In the early evening Abbie went to the OR so that her ENT surgeon could do a bronchoscopy on her. This procedure was done to make sure that her airway was clear of obstructions before we try the Passy-Muir valve on her trach device tomorrow. It is the special, one-way valve that allows people with trachs to talk. We got a great report from the surgeon – her airway looks great, and the order was written for a trial with the valve to be done before Abbie is discharged.

Then, the second blessing arrived. There was a brief time when Abbie was coming out of the anesthesia that she was alert but not fully awake. Her body was still relaxed and she was squeezing hands and moving toes on command, and best of all, she winked at her daddy when she asked her to. She has not been doing this much lately, and Ray and I have grown concerned as of late about this seeming loss of abilities. It was so reassuring to see her respond to us. Then, once she was fully awake her body returned to its rigid state and she could no longer react to our commands. I have been resisting increasing her muscle relaxant dosage cause I was seeing some improvement in her tone. And, after thinking about it, part of my resistance was a selfish need to always have her moving forward. I didn’t want the dosage to increase because it felt like a step backward. Ridiculous when I see it in black and white, but it’s the truth. After seeing her capabilities while relaxed I am changing my tune. I have spoken to the staff and we will hopefully be increasing her dosage tomorrow.

I didn’t really get Abbie settled in until 2am last night. I was exhausted and looking forward to some good sleep myself. I kept hearing, “Read Hebrews.” Awwww, come on…can I do it in the morning? “Read Hebrews. Right now. Out loud.” Rats.

So, I got my Bible out, and by the time I was thumbing my way to Hebrews I was very curious about the message God was wanting to send at this very inconvenient hour. It didn’t take long to figure it out. Over and over the Scriptures said to me, “Hold on!” The verse that best summarizes the time I spent with the Lord last night is Hebrews 10:23 “Let us hold unswervingly to the hope we profess, for He who promised is faithful.” The other verse that struck me was Hebrews 5:8 “Although He was a son, He learned obedience from what he suffered.” I am praying to learn this trait from our journey as well. I think the reason that these two verses are joined together in my mind is that the obedience that is being asked of me right now is to hold unswervingly to my hope…hope that is not based on medical reports or even the chance of Abbie’s recovery, but hope that is based in the One who never changes and always keeps his promises.

Monday, 7/5 10:45pm

Whew! Every time I sit down to write an update it forces me to crystallize everything God has done in the previous day or so. It is truly overwhelming to look back just 24 hours and see His presence in every second, in every situation.

It brings me to tears to tell you that today we know without a doubt that Abbie knows her mommy and daddy. We have known for a few days that she desires comforting and rocking, but today she showed a clear preference for Ray and I. Crystal and Linda spent the day with her as I, Ray, and the boys did some final preparatory errands. They did a good job at not letting her heart rate skyrocket, but as soon as Daddy arrived this evening it dropped to 110. She was resting peacefully tonight when I walked Ray and the twins out to the parking lot. When I returned she was at 160. Within minutes of talking to her and letting her look at me she was at 95. As much as I am preoccupied sometimes by thinking about eventual extent of her recovery, the interim steps like tonight just consume me with joy and thanksgiving. I can rest in those moments, celebrating God’s faithfulness, and be released from the worry about forever by the blessing of today.

A friend of ours, a nurse who has worked in neuro units, emailed me after reading about Abbie’s episodes. She asked if perhaps Abbie was having anxiety attacks now that she is off the Ativan, since “all toddlers do that in the hospital if mommy isn’t around.” Reading the words “all toddlers” and thinking that they apply to Abbie is in some way a bridge to the next steps, as we pray for more and more “normal toddler” things to return to Abbie’s repertoire.

I’ve often written that this experience is much like being in a tunnel, with the light now appearing at the end. Today, as we were driving through a tunnel it hit me that tunnels never take you back to where you started. Especially here in Hawaii, just a short drive through one can take you to an incredibly different place. We went from the bustle of town to the bucolic scenery of the windward side in 15 minutes today. Seeing the verdant landscapes and turquoise waters burst into view today made me realize that we have no idea what the end of our tunnel will bring. It is natural to fear continued struggles, challenges, and sadness for what has been lost — for the place we have left behind. But, we have not been walking through this naturally, we have been carried supernaturally, and my anticipation for the beautiful things that are going to burst into our lives is building as we near the end of this phase of our journey.

Many people have asked me if I am going to continue the updates after we return home. I will be writing Abbie’s story until she can write it herself. There will be a day that she will no longer need my voice. But, until then I will be honored to share each step with you. You have been with us through the very darkest hours, and I want to share the warming rays of the coming dawn with you as well!

Tomorrow Abbie will go to the OR with her ENT surgeon, so that a scope can be inserted into her airway. The surgeon will be checking for granules and excessive scar tissue that may block Abbie’s airway when we try the talking trach valve. Please pray that all goes smoothly and that her airway is clear. This is an important step towards us hearing her voice again. The day she says my name I will not need to type an update for you will hear my shout of joy around the world!

I also need to let you know how effective your prayers were for Baby Isabella. She responded remarkably!! She’s back in a normal crib, weighs 4 lbs 4 oz, and knows her mommy, too. Let’s just pray her through the next big step – they will be transitioning her vent to the CPAP function, which requires a lot more work on her part. Her little lungs have been through a lot, and this will be a big challenge for her. If she succeeds, the questions from the staff about the viability of her life will greatly decrease and her family can look towards taking her home in a couple months. Pray that God would be glorified through her healing and praise Him for what He has done in this little one!!

Even angels need their rest.

Sunday, 7/4 9pm

So much to catch up on. I’ve been kept away from the computer for two exciting reasons. The first is that we spent the day yesterday getting Abbie’s room ready at home. We actually are putting her in our 2nd family room, which we use as a school room. This way she can be in the hub of activity during the day but also be in a quiet, restful place at night. It took much reorganizing, including consolidating three bookshelves of materials into two. It is an act of God for a bookaholic homeschooling mom to be able to accomplish this, and even Ray was impressed!

With our friend Linda’s help, we were able to get everything done yesterday. Now, we are simply waiting for the equipment and supplies which will arrive on Tuesday and Wednesday. Linda and I then made a run to Toys R Us to get a baby monitor, a new diaper bag, and a special teething toy to help with oral therapy. In the checkout line I felt that, given the contents of our cart, I should’ve been about 36 weeks pregnant. But, I’m not sure any expectant mother has anticipated an arrival as much as I am looking forward to Abbie’s homecoming.

The second reason this update is overdue is that beginning on Friday night Abbie has had episodes where her heart rate has spiked to rates of 200-210. She gets red and splotchy and her body shakes. It was frightening the first time it happened, but as has been the pattern, something wonderful emerged. In the midst of the first episode, I picked her up and just rocked her. She started calming fairly quickly. It happened a couple of times when Crystal was with Abbie on Saturday, and Abbie was in the midst of another episode when Ray and I arrived back at the hospital on Saturday evening. The nurse looked fairly concerned, but I just asked her to step aside so that I could pick Abbie up out of bed. She began calming at once. Fortunately, her symptoms do not match symptoms of seizure activity, which was our primary concern. Ray took Abbie over to the sleep chair and laid her on his chest. She picked up her head and moved her eyes until she was staring at him. As he was calming her during a following episode, he said, “Don’t worry, Abbie, Daddy is going to make it all better.” And he did, as her heart rate dropped in record fashion. One of the cruelest things for Ray during this entire journey has been having to stand by as a passive observer, unable to “fix” anything for his little girl. It was an exquisite gift from God for him to be able to say that to her last night, and for it to be true!

Dr. O., Abbie’s neurologist was by this evening and confirmed that it doesn’t look like seizure activity. She also noted that she would agree that Abbie does seem to be responding to us, and that is “promising.” Another miraculous step on the journey!! I opened up a devotional today, and the topic for the morning of July 4 was, appropriately, “Leaning on Jesus’ bosom.” I laughed as I recalled the sweet picture of Abbie sacked out on Ray’s chest, just as if we were at home and none of this had ever happened. The first verse of the day was “As one whom his mother comforts, I will comfort you.” John 13:23. What a privelege to know that we are able to comfort Abbie during her distress — to know that she desires our embrace and relishes our caresses. I hope that you had a great day celebrating our freedom — I hope that we never take for granted the resolute acts of courage required for the birth of our nation, and for it’s ongoing presence as a light in this world. Abbie’s Independence Day is right around the corner, and I think that with her perseverance and determination she would’ve fit right in with the founding fathers!

Mommy says, “I see you”.

Friday, 7/2 noon

I looked up at Abbie’s pulse-ox and wondered by her oxygen sats had fallen to 91. Then, I realized her sats were at 100, and it was her heart rate that was 91. A new low for her, and so exciting to see her relaxed on her bed, with every joint bent somewhat. We wore her out during another very good physical therapy session today. She bent all her joints except her stubborn right knee, and when laying across the ball she would lift her head and shoulders when I tapped on the ball. Every day we see a little progress, and I also appreciate how much better it makes her feel during the rest of the day.

A feeding specialist stopped by to evaluate Abbie today, along with Abbie’s speech therapist, Lisa. Lisa is a wonderful advocate for Abbie, and is trying to ensure that Abbie doesn’t plateau in her recovery because we are not pushing her to the next level. It’s so comforting to know that I am not fighting the therapy battle alone!

I also recieved the tracheostomy training portion of the CPR class today. No emotional meltdown this time, in fact, it was very encouraging. I was able to ask the Respiratory Therapy Educator a lot of questions about the talking valve that we are going to try on Abbie soon. He said that using it not only allows vocalization but also helps the lungs and stimulates the vocals cords. I am looking forward to seeing how Abbie does with it!

As I work with Abbie and wonder about her recovery, and also as I think about how my other kids are doing and worry that I haven’t been available to help them through this, I claim Psalm 91:11 in their names, “Thank you Father,that you have given your angels charge over Crystal, Chase, Kyle, RJ, Matthew and Abigail, to guard them in all their ways.” I have to continually remind myself that I am not their ultimate parent nor the provider of their ultimate security or healing. I have to accept this not as a shirking of my responsiblities, but as reality. I do the best I can, and then, instead of beating myself up about the rest, I lay it at His feet. He has provided all they need and holds them in the palm of His hand. I think this is the only resting place for parents.

Thursday, 7/1 11:15am

I have been keeping a wonderful secret for the past two days. We had an important meeting this morning that gave me confirmation enough to share the great news…we are bringing Abbie home on July 8th!!

We are thrilled beyond words to think that next week at this time we will be packing up her menagerie of stuffed animals, hair pretties, and custom gowns and hitting the road in the Suburban, just like normal. There are, as Ray put it this morning, “a million moving parts” in her discharge and plan of care at home, and we really need your prayers to ensure that it all goes smoothly. An area of particular concern is the continuity of her therapies. She has been making great progress and I don’t want there to be a lapse in services that would set her back.

For those of you on Oahu, please know how much we have appreciated your undending support, but we hope that you will understand that we will need a couple of weeks without visitors to get Abbie settled in at home and to establish our routine.

As for Abbie, she came completely off the Ativan last night, praise God. Her neurologist wants me to keep an eye on her muscle tone through the withdrawal period, since it may increase. What I have seen, though, over the past couple of days is that she is getting more relaxed. We have had the best therapy sessions in weeks during the last two evenings. She is allowing me to bend her knees to 90 degrees again, which I haven’t been able to do in at least 3 weeks. In fact, I bent them past 90 degrees, so that her foot touched the bed with her knee in the air – I haven’t done that with her since she has been hospitalized! She is allowing me to get a full range of motion in her shoulders as well. I had become very discouraged over the weekend about her muscle tone and therapy, bearing great guilt that I have not “done enough”. My hope has been greatly revived, and a burden lifted as I see Abbie respond so well to the changes and increases in therapy. She bounced on the big red ball again today, sans food, and it went very well.

I have mentioned Baby Isabella previously, and I need to ask for your prayers on her behalf again. She had surgery earlier this week, and made it through OK, but her vent settings remain very high. Would you pray that her pain and agitation would decrease and that she would breathe better. Please also lift up her weary, embattled family. I almost feel as if she and Abbie are teammates, and it’s no fun to win a race without the whole team at the finish line.

As the transition to home nears, in addition to encouraging us, it also accentuates the strain our family has been bearing these many weeks. It’s a new level of reality — we will be taking Abbie back to her house, but she will be a very different little girl. This realization can sometimes be the spark that lights the tinder of stresses, concerns, and fears piled up in our hearts. Maintaining control over your tongue when your heart is aflame is impossible. God has given us more than enough grace to bear with each other through this, but there are still trying moments. Last night was one, and the only reason I mention it is so I can tell you how God pulled me out of it. After midnight I was crying out of exhaustion, despair and frustration. He stopped me cold in my self-pity tracks with four simple words, “There will be joy.” It was as clear as if I’d been smacked over the head with a book (which I may have actually deserved.) There will be joy — and not joy tinged with sorrow, or regret, or guilt. Out and out, feel it in your bones joy. I looked at Abbie and knew that I will not always look at her with a broken heart, as I do now. My little girl is going to laugh again, and there will be joy…

Tuesday, June 29, 9:45pm

A day of new adventures for Abbie. We loaded her up in her sporty wheels and cruised down to the Physical Therapy offices for some new therapy routines. The session started off on a great note, with an Occupational Therapist evaluating Abbie’s oral functions to see if we could work toward giving her tastes of things. She has all the functions she needs to be able to eat, we just have to work on strengthening them. It could take a good long while, but I was so encouraged to put a therapy routine in place that will help her work toward tasting her favorite Jamba Juice again. She is not particularly thrilled with the oral therapy, but I think in the end she’ll appreciate the results.

After the OT eval she began a fun day of PT..she and the therapist got on huge red ball that had a dip in the middle. They “rode the horse” going back and forth and bouncing up and down. We put her on her tummy and rolled her down so that her feet were touching the ground and she could bear some of her weight. We also did some nice stretches for her ribs and mid-section, for which she showed appreciation with deep sighs and relaxation. The only problem of the day came as a result of Abbie’s not-too-bright mommy. Because she is back on a continuous feeding, I just rolled the feeding pole with us, never thinking that perhaps bouncing on a big red ball and eating were not compatible activities. Towards the end of the session she was coughing so hard (like a good girl), but her coughs combined with the bouncing ended up with her lunch cascading down her shirt and shorts. So…tomorrow we’ll leave lunch back in the room and do therapy without it!

My friend Linda arrived safely yesterday, and I didn’t realize how much pent-up emotion I had until I saw her and just collapsed into her arms. Because of all her experiences with Hannah, her daughter who has Down’s, she can finish my sentences as I explain what is in my heart. What a comfort, and also what an encouragement!

During the first week of this journey we got a call from a man named Milford Misener. He was a seasoned (I didn’t say “old”) pastor who came as an interim to our church in Los Alamos. Although I loved his preaching and appreciated his leadership, I didn’t think we’d have much in common. Then, one Sunday he preached about Nehemiah, and he used John Madden to make his point. John Madden was the legendary coach of my favorite team in my favorite sport – the Oakland Raiders. Coach Madden came up with a unique statistic to measure the toughness of his players..”YAC”, stood for “Yards After Contact”. We all hear about how many yards players gain each game, but he wanted to know how many they gained AFTER they took a hit. When I spoke to Milford on that dark day I simply said, “Our little girl has taken a big hit, but there’s never been a tougher little spirit..not even in the Silver and Black..and she is going to fight her way back.” Abbie has already gained a lot of ground, and although the end zone seems to be over the horizon, you are helping us pray our way down field! I think, based on her YAC stat, that Coach Madden would take her any day!

Tuesday, June 29, 1:30pm

Your prayers have helped Abbie settle down again after a couple of days of very high heart rates and isolated vomiting episodes. She is now back down in the normal ranges for heart rate, and she has not had any vomiting in 2 two days! She is also getting much better with her nights and days. She has been awake now since about 7, with only a couple 15-minute snoozes. She is staring at me as I type, and sucking on her binky all the while. I finally put her on the big girl potty today, since I’ve been promising her I would. Her legs stuck straight out in front of her, as I had expected, but she held up her trunk and head on her own. She didn’t actually go to the bathroom, but I hadn’t really expected it on our first trip. So much of this site is my side of the story, but I would like to share a couple of Ray’s recent experiences which show how God is really ministering to us through people we don’t know.

The first instance happened a week ago. Ray was leaving the hospital in the evening and was feeling down — missing Abbie, worried about me, anxious about the future. He pulled onto the highway and ended up behind a car with reflective letters and numbers of the sort normally used for mailboxes. The message simply said, “Romans 8:28″ It seemed as if it was glowing in the dark. The car got off on our exit and turned at our turn…it basically led Ray home. 
That Thursday a book arrived, sent by a woman I know only through Abbie’s site. “Kathy” is the story of a young girl who was hit by a car and recovered from her devestating brain injury. So much of the story was similiar, from the days of the week when certain things happened, to how her dad responded, to the things her mom did, like putting “before” pictures of her up in her room, doing her hair, and dressing her. We were so encouraged by her story and felt it was a message of hope straight from God. The next day we gave it to Crystal to read. She asked, “Did you guys read the first pages?” I told her we’d read the whole book, but not the introductory pages. She said, “You’ve got to see this!” And, there it was, all by itself on the fourth page of “Kathy” …”Romans 8:28 – And we know that all things work together for good to them that love God, to them who are called according to His purpose.”

Sunday, June 27, 7:45pm

A day of trying to see the good things appearing in difficult clothing. Abbie vomited again this morning, which was totally her mommy’s fault. Her sats were dropping and I thought I could get away with a gentle deep-suctioning during her feeding. Wrong-o. But, the good news is that she did not aspirate anything into her lungs. Her heart rate has been incredibly high today, and I keep reminding myself that young hearts can handle it. It’s the older heart watching the monitor that have difficulty. During her 4pm feeding her sats dropped again, but – remembering the earlier episode, I just did some surface suctioning. This, too resulted in gagging that produced a small amount of vomit. She did keep most of her feeding down, though. She is just becoming more and more sensitive to the annoying things that we’ve gotten used to doing to her without protest. I spent quite a bit of time on her bed with her today trying to calm her. I’m not sure I was overly successful, but I really treasured the time just to memorize every curve of her face. The pediatrician that is covering for the vacationing Dr. L (who is still calling, and I’m sure is reading this update…GO RELAX!!) wrote a note in her chart today requesting daily visits from physical therapy. I am very happy about this and think it will really help.
The Gastroenterologist visted this evening, concerned again about reflux because of the recent vomiting. I told her that each time it is clearly related to suctioning, but we agreed that for now, as Abbie is moving through this new stage, perhaps a continuous 24-hour feeding would be easier on her. I mentioned that Abbie now has an incredibly strong gag, a good cough, she is swallowing, and she is sucking on her pacifier and the suction tube. I was trying to gauge how far away we are from trying to give her just a little taste of something in her mouth. Abbie will need to be a littl bit more lucid and responsive than she is now, but I feel strongly that we are moving quickly in that direction.

Tomorrow is a big day because we have a discharge planning meeting at 1pm. We will finally have all the players in one room at one time. I am hoping it will be a very productive meeting. Please just pray for wisdom, patience, boldness, patience, grace, and patience. We are doing productive things for Abbie while we are still here in the hospital, but I am anxious to have her home.

Could you please also pray for my friend Linda, who will be on her way her tomorrow, and for her family she is leaving behind in New Mexico. Before we moved from NM I gave Linda a quilt my mom made especially for her. I had written on the corner “Psalm 17:17 – A friend loves at all times, and a sister* is born for adversity.” She is living out this verse and it humbles me.

Ray and the kids spent the day at the water park and had a great time. Ray said, “I have lots of stories to tell you, unfortunately, most of them revolve around how old I am getting!” Crystal spent the night with Abbie last night, as she has long wanted to do. The nurse today commented that Crystal watched Abbie like a hawk and made sure everything was in order. What a blessing for us!
This day completes our 8th week in the hospital, and I am amazed that those who started this journey with us are still walking each step alongside us. I am equally amazed at how many have joined in Abbie’s march toward recovery. Your endurance feeds mine, and I thank you for that!

Sunday, June 27, 1am

A bumpy day, but it revealed how far we have come. We used to be nervous about very serious things like brain swelling. Today some vomiting episodes and a fever got our blood pressure up! Ray sent me home to sleep last night, which was a good thing because in my exhausted state I could not have dealt well with the night he had with Abbie. Around 5am she vomited and coughed so hard her NG tube came out. She had vomited/gagged earlier in the day while we were at our CPR class. Both times it happened as she was being suctioned, so it’s another case of something bad really being something good. As the doses of Ativan have gotten smaller, Abbie has gotten more alert and more sensitive. If someone were sticking a tube down my airway and sucking all the air out, I would gag until I turned bright red, too. So, actually her vomiting was a very normal, if a little hypersensitive, response to an irritant like suctioning. Hurrah!

I could rationalize the vomiting, but when her fever got up to 101.2 at noon, then I got a little worried. I just don’t want an infection to set her back. They did an RSV test, in my layman’s terms RSV stand for “Respiratory Something-Something Virus.” It’s not a good thing, but I know that Abbie will be at higher risk for things like RSV while she has a trach. We were pleased to find out the test was negative. She had one dose of Tylenol which brought the temp down to 99.5. She never got back up to 101, which was the trigger point for a blood culture to see if anything was going on. She was in some pain during her 12 o’clock feeding, so we had to stop it after just 15 minutes. I was hoping that she would be able to tolerate her 4pm so that we wouldn’t have to put in IV in to keep her hydrated. She cruised through the 4pm feeding and has done well since then.

Her eyes are open almost completely now which makes her look even more like herself. I picked her up tonight so the nurse could change her sheets and she moved her left arm up my body as if to put it around my neck, so I helped her do that. Once I put her back in bed I said, “Abbie, can see your big, big smile?” After a few second, the right side of her mouth screwed up into a little “smile”. Crystal, sitting on the other side of the room, hadn’t seen it, so I asked Abbie to do it again for Crystal..and she did! I then got out the foot switch so that I could entice her to bend her knees even just a little. It only took a couple of minutes until she was pretty proficient with her right foot. Her left foot took a good half hour of practice, patience and hard work – but then I was hearing “Good job, Abbie” every 2 seconds. She is one determined little girl.

This evening Ray and I were blessed with time to share a great meal with some special friends. As we were waiting for them to arrive Ray told me that as he was holding Abbie, he said, “Abbie, I know you have something to say to Daddy, don’t you. Are you trying to talk to me?” At that she took a big breath and forcefully exhaled through her mouth. She naturally exhales through her trach, so it takes a special effort on her part to get a lot of air out through her mouth. We are going to be talking to the ENT surgeon next week about getting a special trach to support her efforts at vocalization. Just that one breath was a very special blessing for her Daddy. We know she has a long road in front of her, but even the tiniest steps forward are worth celebrating!

So much more to say, but sleep time is ticking away. Ray and I were talking this evening about not knowing how to even begin to thank all the people who have been and are continuing to help us through this. If you are reading this and have said a prayer for Abbie, you are included in this. Your outpouring humbles us, and we are inspired at how God’s people rally around in times of challenge and distress.

Friday, June 25 4pm

Today I accomplished something that was much more difficult than I anticipated. No, it wasn’t changing the trach device for the first time, although I also did that. (easy — just like putting in an earring.) One of the blocks that Ray and I have to check off before Abbie’s discharge is attendance at “Infant and Child CPR.”

Today was the day. I was glad to get one more barrier to bringing her home out of the way. I was totally unprepared for the vivid memories that the instructional video would unleash. I had to leave the room briefly at the beginning of the class to gather myself. Besides labor, and the beginning of Abbie’s journey, the next two hours were the most brutal of my life.

Each instructional step brought back detailed memories of that step of rescusitation on Abbie. The only way I stayed in my chair was by continually reminding myself that Abbie is still here only because I sat through many CPR classes in the past, and I need to be grateful for that. I am emotionally drained, but we are one step closer to a homecoming.

Abbie is going to start having more physical therapy next week, focusing on additional things besides just maintaining a range of motion in her joints. We are going to work on her trunk flexibility and her weight-bearing ability. I am looking forward to seeing how she responds to this. Her Ativan was reduced again today, and she has responded well. Her heart rates have stayed in normal ranges for her, and she seems to be able to fall deeply asleep when she is tired (like right now.)

I am still struggling mightily with my desire to bring Abbie home sooner than later. I am providing all of the care except for her medications, so I would rather do that at home where at least I can see the other kids. I opened up my “Daily Light for Every Day” by Anne Graham Lotz in the middle of the night and the first line read “My times are in Your hand. – Numbers 10:33″ And further down, “Your Father knows you need all these things. Matthew 6:32″, and “Cast all your care upon Him, for He cares for you. 1 Peter 5:7″ Why is it that I can know something and be in total agreement with it mentally, but my heart still rebels and wants its way now! I have to trust Him that the other kids will be ok for 3 more weeks, and that He will restore the time that the locusts (in this case, paperwork) are consuming.

Please pray for me to hold my tongue when I need to, and to be able to speak gracefully when I need to. I don’t feel very prepared to do either right now.

I hope that you get some time to spend with your family this weekend.

I saw a G.K. Chesteron quote that summed up my feelings better than I am able, “There is nothing so extraordinary as an ordinary man, an ordinary woman and their ordinary children.”

Great job Abbie!

Thursday, June 24, 11pm

A day of testing for me and continued progress for Abbie. Let’s start with the good stuff first! When I was standing up and rocking Abbie last night her eyes stayed glued on me, even though I was moving her body. This is another step forward for her, and I loved every second of that visual embrace. Yesterday Ray spoke with another dad who has traveled this near-drowning road and had a very similar journey. The one thing that stood out was his son’s irritation with dirty diapers, which matches Abbie’s reaction. Eventually this dad put his son on the toilet, and that became the turning point for his whole recovery. When I asked Abbie last night if she wanted to go on the “big girl potty” she blinked “yes” so emphatically that her arms came up off the bed and her body twitched. I spoke to her pediatrician about this and we are going to try it.

I have also been standing her up between my legs and she is getting better about trying to bear weight. It is difficult with her legs generally being locked, but she is making progress.

Tonight I did some work with her and a foot switch that records any message you want. Right now I have it saying “good job Abbie!” It took her a while to find it with her heel, but then she got better at it. Then, I had to teach her how to lift her heel up again so that she could hit it again. It took a while, but she improved at this as well. It amazes me how quickly she can learn a new skill. She was working so hard that she was crying, but she didn’t want to quit. Once she had figured out how to lift her heel and hit it repetitively, the crying stopped. I am so proud of her perseverance!

She shared the high point of the day with her brother, Matthew. He asked her, “Do you know how much brother loves you?” And she said, “Mmm-hmmm.” He felt so honored and proud that it brought tears to my eyes.

The testing part of the day came as it became clear that we most likely are not going to get to bring her home next week. It will probably be the week of July 12th. After being in the hospital for nearly 8 weeks, you would think that 3 more wouldn’t be that overwhelming, but it was the hope that we were close being stripped away that hurt. My heart breaks for my other kids, who really need me. I don’t want to be away from them for 3 more weeks. And, I see how much Abbie responds to her brothers and Crystal and I ache for her to be around them all the time.

I know that there is a purpose in everything, including this delay, so I am just praying to see it. 
We will be reducing her Ativan again tomorrow, so I am excited to see the difference in her alertness and responses. She had a tummy X-ray today to confirm the proper placement of her G-tube because we are going to work toward 30-minute feedings during the day. This would make it even easier to care for her, and would enhance our mobility.

For today, please just pray for patience. I am pretty much living at the hospital now, so the combination of my fatigue and disappointment can be disheartening. When Ray talked to the other dad, the man had to really think hard to recall details of his son’s recovery 7 years ago.

Ray said, “As hard as it is for us to remember life before this, someday it will be just as hard to remember Abbie like this. We’ll be watching her run around with her brothers and this will just be another chapter in her story instead of the entire focus of our lives.” I thank God for sending me perspective through my husband! But, hey — I am not above asking you to still pray for the process to miraculously work out for a discharge next week, so please do! As you send your prayers up, I hope that you sense the blessings flowing down in return!

Wednesday, June 23 4:45pm

I’m sitting in Abbie’s room being serenaded by our future concert pianist, that is if they allow Fischer Price pianos in Carnegie Hall! Abbie has learned how to play a couple of keys on a toy piano today. Yesterday she would press her fist once in a while to make a sound. After a little more practice today she is now spreading her hands out and has figured out how to play a couple keys with each hand by rolling her hand back and forth. She was napping in her wheelchair when Chase noticed she was waking up. He grabbed her piano and then said excitedly “Mom! She’s looking at me!!” She had turned her head to find him and has been staring at him since. He is praising her every note. This makes me all the more convinced that Abbie will really blossom at home. Now Chase is playing hide and seek with her and she is turning her head to look for him!

It seems that each day God kind of gives me a new thought to focus on. Today’s is about our purpose in serving Him and choosing to obey Him. It is so far beyond just accomplishing a set of legalistic requirements to rack up reward or favor. I think it all comes down to how well we want to know Him. We are all going to His house someday, some for a brief visit and some to stay. We can choose to spend eternity in a beautiful place with a very benevolent stranger or we can be there forever with our most cherished, beloved friend/brother/father/lover. He becomes known to us in many ways — worship, study, prayer, and, as I’m learning of late, especially through turning to Him during a trial. Every single thing we do in this life can be done in His Name, if we so choose. Will it impact the choices we make? Definately. Must it change the way we do things? Of course. But, at the end of the day it will result in our homegoing being a joyous, long-anticipated reunion rather than just a tender introduction.

My mom was able to get a flight out this afternoon, so she is currently in the air on the way back to Oregon. It was very hard for her to leave Abbie, but I know my dad will be so glad to have her home.

Please continue to pray for the transition process. There are so many people involved that just when we think we have it all put together another variable pops up. Everything seemed to be pointing towards discharge next week, but then one of the key people mentioned she may not be able to support discharge until mid-July. I am trying not to get too worked up until the discharge meeting on Monday. All in His timing, All in His timing…

Bobby reading Abbie and Gio’s favorite story. Nemo!

Wednesday, June 23, 9am

A rainy morning but a beautiful day! Dr. L., Abbie’s pediatrician examined her this morning and Abbie found me with her eyes and then found Dr. L! She is not tracking as quickly and smoothly as normal, but given time she can find what she is looking for. This is amazing step for her, and gives us great hope about her sight, which I though was lost forever based on the MRI.

I have heard that we will have a discharge planning meeting on Monday, with a target for discharge of some time next week!! Ray and I have to take a CPR class on Friday so that we can bring her home. I have to admit that I find it a little ironic, since I did CPR on her poolside…but a refresher won’t hurt, and we have to learn how to do “trach CPR.”

There are a couple of verses that have guided me as I try to walk through this experience. The first is Matthew 6:16 “And, whenever you fast, do not put on a gloomy face as the hypocrites do, for they neglect their appearance in order to be seen fasting by men. Truly I say to you, they have their reward in full.” Although I have definately NOT been fasting through this experience, I think that the instructions are still valid. I trust that the Father knows my pain and struggles. There are times when I am out and about in the “normal” world when I feel like screaming, “My daughter is very sick!!”

But the other verse I have been clinging to is Matthew 14:27 “Be of good cheer.” It’s spoken as a command, not a suggestion. If I really believe that He is who He says He is, there’s no way I cannot face this trial with “good cheer.” Those closest to me could tell you that I have failed miserably many times in striving for this goal, but failure isn’t permanent until we quit trying.

There is another miracle unfolding that you may want to check in on and pray for. You can go to www.bucklesfamily.org to read about Jade and Erin Buckles, conjoined twins born in February who were successfully separated on 6/19 (praise God!) They are related to some friends of ours in New Mexico.

Abbie’s 3rd birthday is 2 months from today. It was a day we feared we would have to face without her, but now we spend our time imagining what she will be doing that day!

Outside on the children’s lanai play area.

Monday, June 21 10:30pm

What an incredible day! Or, more correctly, what an incredible God! Last night I posted two specific prayer requests about her Medicare Waiver and about her home nursing support. We were hoping to get these resolved in the next couple of weeks because these are the two issues that can significantly delay Abbie’s homecoming. Well, by noon today both issues were taken care of. Abbie has her Waiver number which allows for the processing of mountains of paperwork, and all of her nursing hours have been staffed. This truly is a miracle and a very speedy answer to prayer. I am still in slight shock at the progress made today. He reminded me again that “you have not because you ask not.” I had been worrying about these things but not praying specifically for them. Boy, am I a slow learner or what? Thank you for lifting up our concerns, again, you are part of the miracle!

My incredible sister Tara is on a plane home tonight after spending the last week here doing the nightshift with Abbie. I was so spoiled by getting to sleep in my own bed at night. My mom will be leaving on Sunday after nearly eight weeks of caring for the other five kids..can you believe that? She is going home for a well deserved rest, and our dear friend Linda will be coming from New Mexico (leaving her 5 kids behind) to help us for 12 days.

It is now very possible that she could be here to help us celebrate bringing Abbie home!
There have been amazing things happening with Abbie as well. They have started to decrease her doses of Atavan, a calming/sedating medication. Just the small decreases in the last few days have made a big difference in how wide her eyes open and how alert she is when she is awake. I am so excited to see more of her emerge as she is less sedated. She continues to get more relaxed and even bent her knees in the stroller on the way to bath time tonight while she was wide awake. This was a big first for her, as her legs are always locked at the knees if she is awake.

God answered my cries for guidance about an experimental therapy today. Isaiah 30:21 says, “Thine ears shall hear a word behind thee, saying, ‘This is the way, walk ye in it, when ye turn to the right hand and when ye turn to the left.” I was reading that verse when He very clearly said, “Let Me do this (heal Abbie) for you. Let Me do it all — for My Name’s sake.” He has released me from the indecision that was wearing on Ray and I. We are going to trust Him and the promises He has made to us. When she is healed there will be no doubt about Who did it!

Would you continue to pray for our transition process? It could happen very rapidly now, which we would welcome. But, we also want to be able to stay on top of everything and ensure nothing falls through the cracks. We’re praying for the right questions to ask, clarity in how to organize our home, and boldness to advocate for Abbie. The light at the end of the tunnel got a whole lot closer today, and the anticipation of carrying our baby across our threshold once more is very sweet indeed!

Happy Father’s Day, Ray!

Sunday June 20, 10pm

What a day of celebration. Although I failed to get Ray a Father’s Day lei, I think he had a pretty great day anyway. At church they had a slide show of fathers and kids, some pictures were from years past and some from the present. It tugged, no, yanked our heartstrings to see so many beautiful relationships captured in pictures. They did show a picture of Ray with Matthew, RJ, and Abbie at the hospital. I cried for opposite reasons at the same time–so thankful that we still have her, and so sad at the realization of how sick she looks compared with all the other images of healthy kids. It was a cleansing and refreshing time of worship this morning, and I sang His praises with a grin on my face. Sometimes, when He takes you to the place where all you have got to stand on is His promises, and you don’t even see how they can come to fruition but choose to trust anyway — then you see the true power of those promises and the One who made them.

We surprised Ray at the hospital today by dressing Abbie up in cute little shorts and a shirt that said, “I Love My Daddy!” Judging by his quivering jaw, I think that arrow found his heart. We took Abbie out to the lanai and enjoyed some family time, took some pictures, and admired how well she is able to lift her head up. We took her out of her chair to take pictures (in order to more clearly see the all-important T-shirt), and when it was time to head in for her feeding Ray decided that he wanted to carry his girl the way he always did. So, we skipped putting her back in the chair and he carried her with her head on his shoulder back to her room. It seemed so close to normal for just a moment, and that was the best gift of the day.

She really is getting more relaxed, and today allowed us to bend her elbows when we asked her to. This is a big step considering we usually have to use near-hydraulic pressure to get them to bend. Her eyes were open as wide as I have ever seen them, and she made some of her trademark funny faces when I was brushing her teeth. That was a welcome reassurance that our Abbie is still in there. After her bath tonight I asked her if she wanted some lotion and she lifted her entire right leg up, as if to say “Right Now!”

I mentioned something about the kindness of strangers, and I don’t want to leave anyone out, but there is a certain sweetness about kids reaching out to someone they’ve never met. I need to say a special thank you to two elementary classes. The first is Mrs. Noey’s first grade class at Plymouth Elementary School in Midland Michigan. These great kids all drew wonderful pictures and wrote sweet notes. I LOVED the creative spelling, it will really help Abbie “get betr” soon. She has already worn the pretties that you sent and gotten rave reviews from the nurses.

I also must thank our family friend Miss Mia Letterie and her classmates in Seattle. The untarnished optimism and untainted sweetness of kids is medicine to anyone’s soul, but especially to those who, like us, are in a dark tunnel. Abbie will really enjoy all of your pictures when she gets better!

For this week would you pray for great progress in the coordination of our transition home? Abbie is very nearly ready to go home from a medical standpoint, but there are many administrative things still to be put in place. Would you pray specifically for her “waiver” to be finalized, and for the nursing care to be all set up. These are big requests, but we know Who hears our prayers, and have seen how He loves to answer. Thank you for remaining so steadfast in your support during all this time. I can’t believe that tomorrow will make 7 weeks since the accident. I can barely remember life “before”, but am amazed at how far she’s come so quickly. Much of her progress is due to the fact that each of you is carrying her, and us, along this path that is too difficult for us to walk.

Sunday, June 20 12:45am

Happy Father’s Day! We are so blessed to have all our children with us on this day. I remember how precarious the situation was on Mother’s Day, and shout praises at how stable things are now.

Since Abbie has been on the regular nursing floor I’ve been spending even more time there, trying to assumed as much of the care as possible to prepare for our transition home. So, I owe many people return emails and phone calls. They are forthcoming, someday! I regret that my lack of timeliness may imply a lack of appreciation for all the support we are receiving. Please know, that if I could send messages directly from one heart to another without using a computer or phone, you all would be overwhelmed!

The most noticeable improvements of the day are in areas that have made Abbie look very sick. The high muscle tone, particularly in her legs, is part of the package after a brain injury. Today, while wide awake, she completely relaxed her legs and allowed us to bend her knees with no resistance. A miraculous first for her! She is also letting us bend her elbows while she is awake, and totally relaxes her arms. This, too, is a new step for her.

Looking at Abbie in bed she can sometimes look deceptively healthy. Then, I would pick her up to bathe her or put her in the stroller and her eyes would roll back up into her head and stay there. It was heartbreaking to see because it reminded me of how very sick she is. Well, today she is doing much better at keeping her eyes in a normal position as I lift her, or at least returning them to a normal position much more quickly. Little differences change a difficult day into a joyous one.

I have to take one second and use this message for a very personal reason: Dad, I just bought your card today, so it will be late, just like always. But, please know how much I appreciate you and how proud I am of how you are moving forward in a year of great change in your own life. We all love you!

I know that Ray will feel the same way I did on Mother’s Day..I felt a little strange being honored for being a mother, when really it’s God’s greatest blessing. OK – he may go for being waited on AND appreciating his blessings (especially if they don’t fight in his presence today). I pray especially that we all would bring The Father special joy today.

Girls night out (in the hospital cafeteria:)

Saturday, June 19 12:31am

Just getting home after a long day with Abbie. It’s hard to pull myself away. I enjoy so much being with her when she’s awake, and then I can’t help but just sit and gaze at her when she’s sleeping.

Today was a challenging day for Ray and I because we are entering a new phase of Abbie’s journey. We are having to make some decisions about which therapies to pursue, and it is difficult. We want to do the very best thing for Abbie, and sometimes it is unclear what that means. We are crying out to God for wisdom and discernment. We think we are heading down a certain path, and then with more information, prayer and consideration, sometimes the decision changes. In a way it was easier when we were just praying for her survival or for signs of recovery. We turned everything over to God and sat back and watched. Now, He is asking us to be active participants in directing her journey, and it is a little intimidating.

She continues to get stronger physically. Today she practically rolled on her side by herself, which was a new thing. And, when I sit her up she can pretty much hold her head and trunk up by herself. She has gained almost four pound since being hospitalized. I guess when all you “eat” is a nutritious formula, without empty calories from Cheetos and the occasional Red Vine, that will happen. It’s obvious when you look at her chubby little thighs where those pounds have landed!

Today was difficult as well because it was just one of those days when both Ray and I missed her. We missed the funny things she would do and say, how she would lay on Ray’s back and watch TV with him in our bed. How she would get up on his lap and say, “I love you my Big Daddy.”

We had dinner in the cafeteria in the midst of these blues, and as I looked out the window I saw a scene very common in Hawaii. A fine mist of rain was falling through the brilliant sunshine. God gently said, “All you see right now is the rain. But, in My design the raindrops are actually suncatchers — see how beautifully they shine and enhance the sunlight? Your sadness about Abbie is a small part of what is going on, and it will only serve to enhance the light I am bringing.” It’s still hard, and I am sad to admit that. I wish I could say that the incredible comfort He provides makes it all OK, but the pain lingers. I know He planned it that way and trust that He forgives my weakness and impatience.

I do need to ask all who are praying to please add one more precious little girl to your prayers. Baby Isabella, in Seattle, was born 3 months early. She has been fighting for her life for about 60 days now. She has ups and downs, but has taken a downward turn as of yesterday. This next week will be critical for her. Please, when you think of Abbie, lift up Isabella as well. Her mom and I have been corresponding when we have the time, and Abbie and Isabella have a play date to keep.

I have so much I need to say about the kindness of strangers lately, but I will save that for tomorrow since I am planning on being back at the hospital in a few hours. Just know that God uses what may seem like small things to you to impact others in a huge way. One quick example (and then I really am going to bed)…I bought a portable CD player and speakers for Abbie a little while ago. I didn’t tell the salesman anything about what was going on, he simply asked if I was going to be using it soon. When I said, “yes” he proceeded to cut open all the packaging, put in the batteries and test everything to make sure it was working. It seemed insignificant to him, but it was huge to me. Not having to deal with that mundane task in my sleep-deprived state was such a blessing, and it sticks in my mind 3 weeks later. God can use you wherever you are, and whoever you are if you just turn your heart toward Him.

Thursday, 6/17 6:45pm

When Abbie slept soundly last night from 10-12, I thought, “Wow! We’ve got this day/night confusion thing licked.” Ha! She was then awake until 10am. I tried to keep it dark and quiet for her, but couldn’t resist having a little play time around 2am. We sang songs, she played with a couple toys, and then I begged her to go to sleep. Although she did not comply, I was glad that she was awake and very responsive when her pediatrician, Dr. L, visited her this morning. It is always hope-affirming when we see her respond to commands. She also started following me with her head last night. She cannot track with her eyes yet, but she was turning her head to see me as I moved.

I met the Public Health Nurse today who is going to be one of the people helping us navigate the transition process, particularly the areas involving preschool and therapies. It is exciting to really be thinking about these things becoming a reality.

We had a very special time with our small group last night. A great cheer arose as we wheeled Abbie into the conference room. She got to hang out with us as we celebrated Ray’s birthday. She was so excited she slept through the whole thing. The twins also wanted to be there with us since they have been missing us so much. I am so glad we consented, since as part of the celebration each member of our group said a bit about Ray. I think hearing all the kind, encouraging, affirming things about their dad will be forever carved on their hearts. What a blessing!

I read a quote yesterday that I can’t properly attribute right now, but it said, “There are three stages in the work of God: impossible, difficult, and done.” I praise Him for guiding us gently through the first phase, and now walking us through the second part. We “eagerly watch” for the completion of His work in Abbie. I have a feeling we may not see the complete picture of all He is doing until we are with Him.

Happy Birthday, Daddy!

Wednesday, 6/16, 6pm

Abbie has given her Big Daddy a very sweet birthday. So much has happened today! She was finally awake when the Physical Therapist and Speech Therapist arrived. She was fitted for her wheelchair, and really loved being in it. We cruised back up to the PICU to show off her new wheels. We then went to the playroom lanai and enjoyed the breeze for a while. Her oxygen sats were better than they had been all day.
The speech therapist brought a quacking duck for Abbie to play with today. She worked it with both a grip switch and a switchplate she touched with her foot. She did very well at this, to the delight of her cheering audience.
My mom and I gave Abbie a tub bath today, which was very eventful.

“Eventful” is not really a good thing. First, the portable suction machine stopped working. She is doing so well at coughing that I decided to go ahead with the bath. Then, while in the tub she coughed so hard that her artificial nose (covers her trach) flew across the tub. My mom and I were laughing so hard we had to recover in order to go get a new nose for her. It feels very strange saying, “My daughter just coughed her nose off into the tub, may we have a new one?”

She then coughed the second nose off as well. At this point we decided we’d had enough bathtime adventure for one day, packed her up and dried her off once we got back to her room.

The most fantastic birthday present for Daddy came late in the afternoon. I was fumbling my way through changing her trach ties (the bands around her neck that hold her trach device in place). It was too tight, so I redid it, only to make it too tight again. As I was redoing it, AGAIN, Abbie vocalized and impatient, “OH”…as in “would you just hurry up and get this done?” I was shocked, and took a step back. Then it hit me – I had just her her voice again, for the very first time. I almost dissolved into tears on the spot, but I still had to get those trach ties back together. I was thrilled to tell Ray about it a little bit ago, and only wish he could have been there.

It had been such an exciting day up to that point, it was almost as if God was saying, “Oh, yea? Watch this!!” As Abbie was sitting in her wheelchair I was noticing how much stronger her neck is getting because we’ve been sitting her up. I thought, “I’m so glad we didn’t wait until her neck seemed strong enough to put her up in a chair, because being up in a chair is what will make her stronger.” I realized that God works the same way. He doesn’t wait until we are strong enough to handle a situation — He puts us in situations to make us stronger. My praises are so plentiful and so profound today that I feel unable to put them into words. I am thankful for a terrific husband who is truly God’s gift, and my match. As the candlelight on our birthday cakes gets brighter and brighter, I marvel at how love grows sweeter through time and trial.

Tuesday, June 15 3pm

Sooo much to catch up on! Our computer was on the blink yesterday, just when I had so many great things to share. The first is that we are out of the ICU!! Abbie spent exactly 6 weeks being taken care of by the 3rd Floor Angels, but has now graduated into a “Big Girl Bedroom” all her own. One of the biggest blessings is having a window. We moved her down around 5am on Monday, and after just a little bit the sun started coming up. As the light crept across her pillow I sobbed, thinking that it was Abbie’s first morning in six weeks.

It has been good to have more peace and quiet, and we are working on getting her to stay awake more in the daytime and sleep at night.
She is now able to have a tub bath every day, since it is right down the hall. Yesterday my mom and I took her to the tub by ourselves. Mom was the Suctioning Queen, while I did the bathing. It was nice to be there by ourselves so that we could linger as long as we wanted. Her arms were so relaxed, floating in the nice warm water. I bathed her all by myself today, and she particularly enjoyed the after-bath massage.
Her coughs continue to get stronger and we are having to deep suction her less and less. Her trunk is also getting stronger. Today when I sat her up to brush her hair, she really helped me hold up her body.

We are to the point now where we are starting to consider what kinds of rehabilitative therapies to pursue for Abbie. Please pray for wisdom and discernment as we travel down this path. It looks like we may have an exciting opportunity for a leading-edge therapy for her, and we just want to make sure we are making good decisions.

Abbie will be allotted 56 hours per week of in-home nursing once we take her home. The problem is that during the summer, as people take vacations, there are not enough nurses available to support this allotment. We do not feel it wise to try to bring her home without this support since she really does require around the clock monitoring and assistance. Once we are home we will transition into being a complete family again, and I will become everyone’s mom once more. We don’t really think a good transition will be feasible without the nursing support. Please just pray that we would be patient during this process. We know that God is going to provide for all of our needs in His timing; we just need to wait contentedly.

I found an Oswald Chambers quote today that perfectly sums up how I feel about Abbie’s situation, and our journey, “We are not here to prove God answers prayer; we are here to be living monuments of God’s grace…” In other words, we are not waiting for God’s faithfulness to be proved by a full recovery. He is an unchanging God, His faithfulness was, is, and will be. His grace has been evident in each second of this trial, and Abbie, just by being alive today, is a monument to His exceeding grace.

Pretty in pink!

Sunday, June 13 4:45pm

Abbie and I had an all-night non-slumber party last night. I was hoping — ok, expecting to get some sleep on my comfy sleep chair last night. But, Miss Abbie had other ideas. We finally both dozed a little around 4 when I climbed onto her bed with her.

Her heart rate is higher than we have seen it recently. We are expecting this to happen now and then as she adjusts to new levels of consciousness. While it troubles me a little when I can’t calm her down, it is also exciting that it may mean she is waking up a little more.

I told a friend at church today that Abbie’s journey is like filling up a 55 gallon drum with raindrops. It is excruciatingly slow sometimes (in our minds), but with time we are looking forward to the drum overflowing.

Our small group is studying the book of James right now, and we were looking at James 2 on Wednesday evening. There is a passage in it that says, “..if you show favoritism, you sin and are convicted by the law as a lawbreaker.” Ray and I read that verse with new perspective. I now realize that one of the fears and heartaches of parents with special needs kids is that the world may not see the eternal flame of dignity and purpose in their kids. Not only our Abbie, but all the kids in the PICU have given us new eyes to see different shades of beauty, grit, determination, and strength. Some of the kids arrived in packages that look very different than “normal” packages, and some of their bodies don’t work as well as “functional” bodies. But, please, don’t show favoritism by seeing them with the lazy eyes we are trained to have. Look harder. I promise you, that if you look at special kids through His eyes, the vision will take your breath away.

Please pray for Abbie’s secretions. She is helping us out a lot with strong coughs, so we are keeping the dreaded deep-suctioning to a minimum. But, we are still having to do the regular suctioning almost constantly when she is awake. Please also pray that she will not be overly agitated or scared as she journeys back to us. She is not at a point where we can rationalize with her, or fully explain what has happened or where she is. We just try to comfort her the best we can.

We were refreshed by the fellowship at church today, and by hearing His Word proclaimed. I pray that you have been blessed as well today, and that as fellow travelers on this journey you are joining us in marveling at God’s grace.

Saturday, June 12, 5:30pm

I arrived at the hospital yesterday morning to hear “She’s moving today!” We were scheduled to move down to the regular pediatric floor. I thought, “How fitting, this is her 40th day in the ICU. Perhaps today is the day the rain will stop.” We got all set to go, but then waited, and waited….Several kids ended up being admitted through the ER, and a few more were waiting to be transported from the neighbor islands. So, Bed Space 14 continues to be Abbie’s abode for now. I wasn’t too disappointed because now we will get a chance to say good-bye to all the staff members we have come to love.

Her eyes were open much more than usual yesterday, and Ray has noticed the same thing today. She is moving all four limbs and her head quite a bit. I called Ray a little bit ago and he put it this way, “When she is asleep, she is sleeping more soundly. And, when she is awake, she is MUCH more awake.” I was so glad to hear the excitement in his voice.

Last night her heart rate was very high, and I did all I knew to do to bring it down. I changed her diaper, suctioned her, and then repositioned her. No change. Then I thought “just be her mommy.” So, I did what I would’ve done if we had been at home and she were sick. I got into bed with her. I prayed that I would not pop her air mattress and have to explain a sudden deflation to the staff! It was wonderful to just to hold her and stroke her face and hair. She calmed right down.

God has really grown me in the way I look at Him through this. There is a long hallway leading from the elevator to the PICU. One side of the hallway is all windows, with a view toward the lush, green mountains. During the first week I would walk down that hall, looking at the clouds hugging the mountains, searching for some indicator of how the day would go. You know, black stormy clouds meant I needed to brace myself. No clouds meant something good would happen. Even though it did seem to follow this pattern, I have learned a faith that is much deeper. Now I know that despite what the clouds are like, the sun is always shining behind them. I may not be able to see it on certain days, but it is still there. In the same way, on the dark days, the Son is still there, even if my weakness prevents me from seeing Him.

Friday, June 11 8am

King Kamehameha Day here in Hawaii, which means Ray can enjoy the day with the boys. My mom spent the night with Abbie so that I could catch up on my sleep after a couple straight days with Abbie.

Abbie is stable. She did have to go back on supplemental oxygen Wednesday night after a few days of just being on room air. They were able to wean her back down to room air during the day on Thursday. An occupational therapist visited us on Thursday to try out Abbie’s carseat (which won’t work) and a different carseat (which will work). Abbie liked sitting up, and relaxed and fell asleep in the seat. It was exciting to see her in something so familiar, and so normal. It makes me anxious for the day we are strapping her into the car to go home.

We may be moving down to the regular ward fairly soon, as they are expecting the admission of more kids in the PICU. We have mixed feelings about that (mostly because it will be like leaving family members behind when we leave the staff), but it will be best for Abbie and our family.

God has been showing me so much through this, and I’d like to share something from the very first week of Abbie’s journey. The night before the accident the kids and I were reading from “Foxe’s Book of Martyrs”. Abbie fell asleep on my lap. Boy, how I treasure that memory now. Anyway, at that time we thought we may never have the chance to be as strong or serve as faithfully as those amazing martyrs described by Foxe. We found our chance later that week. I haven’t yet met parents who would not exchange their lives for their children’s in a heartbeat. Ray and I would give anything to be lying on that bed instead of Abbie. God, in His wisdom, does not give us that choice. He told me that week that He was asking for more than physical martyrdom. He was asking Ray and I to martyr our hearts. He was asking us to walk through this fire in faith, pointing always to Him. I think now that He gives each of us that chance in ways we may not recognize at the time. Decisions we make that go against our desires, our needs, even our rationality, because we choose to trust Him — that is martyring a heart. So, please don’t look at Ray and I as walking a road that you never could. You are on the same road as us, the sign markers just aren’t as clear. I know without a doubt that there have been, and will be opportunities for you to martyr your heart. After coming this far in our journey I can say that when you make that choice He responds instantly with joy, sustenance, and hope.

Me and my Grandma

Wednesday, June 9 6pm

Another day of sweet surprises. Today, Abbie got to play! The speech therapist brought up a bag full of different kinds of switches. We found the right one for Abbie — a grip switch. She is very proficient at this one because she has spent the past week squeezing her little jelly football as we talk about going to UH games this year. The therapist plugged the switch into a battery-operated toy pig, and whenever Abbie would squeeze the grip it would oink and move. You know this toy — it’s the annoying one that they put in the entrance to KB Toys that drives you crazy the first moment you see it. Well, today it was the most beautiful toy in the world. She loved it and went to town on that switch. Even after we took it out of her hand she squeezed a few more times as if to say, “Hey! I wasn’t done yet!” My heart was screaming with joy as I saw my little girl PLAY, and as I thanked God for the technology to bring delight to little girls even as they lay in bed getting better.

Today they transitioned her to “bolus” feedings, which means that she is not fed continuously any more. She is fed over the course of three hours, and then takes an hour off. We will work toward the goal of feeding during one hour and taking three hours off. This would be a great boost to mobility because we won’t need the electric feeding machine for a one hour feeding, it just comes out of the bag at that rate by gravity.

For kids like Abbie, once they are 3 years old they recieve all of their therapies at special pre-schools. Abbie will turn three in August, and we are working to try to delay her entry to preschool until at least the first of next year so that we can enjoy having her home and learn her therapies. The one great piece of news on this front is that the special preschool for our area is in the elementary school one block from our house. We are thrilled at the prospect of walking Abbie to school.

We have also been cleared to transition out of the ICU onto a regular nursing floor. The other floor is currently full, and we don’t know when a bed will be available. That’s not a bad thing really, because we have gotten to know the staff, and quite a few of the families, in the PICU and are very comfortable there. But, it sure would help get Abbie’s days and night sorted out if we could have it dark and quiet and night, which is not possible in the PICU. Please just pray for wisdom for us about the timing of this transition. It is a huge step to be far from the sickest patient in the unit, which is unfortunately a very busy place tonight.

I need to thank all of you who have reached out so tenderly to me since I wrote about my feelings as a mother of a drowning victim. The quenching water that cools the flames of guilt…the verses that you’ve sent me, the understanding phone calls, visits, and messages…God has used all of those to douse me very well. I wish I could be more eloquent because so much is on my heart, but I didn’t make it home for a rest today. (Shhhh! They let me use a sleep chair by Abbie’s bed last night, not generally allowed in the PICU, so just keep it between us!) Please just accept my thanks for carrying me when I am weak, hearing me when I cry, and praying for Abbie when I don’t have the words.

Tuesday, 6/8 1:30pm

So much has happened in the last 12 hours or so that I am excited to tell you about. First, I got to take Abbie for another tub bath, and we got pictures this time! She loved it and did very well. We didn’t even have to suction her while we were out and about, which is a big change from her last tub bath.
Because she did so well, they ordered a portable pulse-oximeter (monitors heart rate and oxygen sats) and a portable suction device for Abbie. We put them in the basket of the stroller that is now parked by her bedside. The doctor wrote a note saying that we can leave the unit any time we want! So, Abbie accompanied Ray and I to breakfast this morning. She enjoyed it for a while and then fell fast asleep. I had my mom bring the kids up to visit Abbie. When they arrived I said, “We are going to the play room….with Abbie!” So, we all went downstairs, and I pushed Abbie OUTSIDE onto the lanai (or patio for those on the mainland). It was incredible to see her with sunshine on her face and her hair blowing in the breeze. We got lots of pictures of this as well.

When a physical therapist stopped by I mentioned that I saw her swallow yesterday. She said, “Oh, so I bet her secretions are less.” Hmmm– I hadn’t even put it together. Abbie is handling more of her own secretions by swallowing, avoiding the dreaded suctioning. Just one more step in her recovery! A nurse casually mentioned, “Oh, I see she passed her dye test.” Blue dye has been added to her formula for the past couple of days to ensure that if she had reflux we would see it. There has not been one drop of blue in her mouth, nose, or lungs. I asked if they would do the test again when they turn the volume up on the feeds or when we start feeding her over a couple of hours and then taking a couple hours off. She said no — reflux happens with a little food or a lot. So, it is official – Abbie no longer has reflux problems. This is such a huge advance that I can’t really believe it’s happened already!

I was just on my way home this afternoon when Dr.O., her neurologist showed up. She was doing some tests on Abbie and commented that she is regaining lateral movement in her eyes. It is very slight, but a definate gain. I was so glad to hear this because I had noticed it the other night, but was unsure if I was really seeing it or wishing it. This is another big step for Abbie as we watch functions thought to be permanently lost slowly come back.

I can almost see God grinning as He continues to surprise and amaze us. I would’ve been ecstatic with any ONE of the events I just wrote about. To see all of that happen in 12 hours gives us such hope — and, as I’ve written in previous updates — hope never fails!

Some of the friends in our “small group” from church.

Monday, June 7,1:45pm

Another first for Abbie today. As I was rocking her I saw her swallow. At first I thought, “Oh, how cute, she swallowed.” Then, it hit me. Wait a minute!! She hasn’t done that before. And, swallowing is a huge step on her road back to eating her beloved pizza.

As I arrived at the hospital yesterday evening, Ray and Abbie’s pediatrician, Dr. L. were outside talking. When they asked Abbie if she was ready to be suctioned, she nodded “no” to them. Praise God — it wasn’t just my imagination! She was also able to move her thumb, independently of her fingers, for Dr. L this morning.

A speech therapist came up this afternoon to talk about the devices that they are going to use with Abbie. We are going to start out with “squeeze switches” that control battery-operated toys and devices, like her CD player. They also have a device that says “no” — I’m afraid Abbie may wear that one out. Finally Abbie will be able to tell me if the things I do, like massage her head and play her music thrill her or irritate her. I am anxious to see how she is able to use this technology.

I have long debated with myself about whether to write the following thoughts, but I think they are worth sharing. It’s about how it feels to be the mother of a near-drowning victim. From the first doctor who treated Abbie in the ER, and all the way through the rest of the staff, I have been told “It’s not your fault” and “These things happen.” I have to respectfully, but insistently disagree.

Pool drownings are 100% preventable, and I failed Abbie just when she needed me most. I think most people don’t want me to say that, or feel that way, because the guilt and anguish that comes with realizing I have put Abbie where she is could be destroying, an overwhelming, unescapable burden. But you see, by facing what has happened head-on, without watering down the truth, I have my only chance at rescue. In order to survive the flames of guilt and sadness I have to walk through them. Pretending they are not there condemns me to a life of running from the heat, but never escaping. Just as God is saving Abbie, He is also saving me. I am walking through the flames to the quenching of the Living Water on the other side. So, yes, it is my fault, but the Lord has not abandoned me in the dark pit. He seems to have a tender spot to those who have failed enormously, and then cry out to him. Think about David. Think about Peter. The truth truly does set me free.

Yey! Look at that face!

Sunday, June 6, 5:55pm

The praises just keep on flowing!! I talked to Abbie’s nurse right before I laid down to sleep today. She said that Abbie’s blood test came back “on the high side of normal”. And, that test was drawn before any IV antibiotics were on board. So, it looks like the infection will be controlled with medication. We are so thankful for your prayers in this matter! I talked to Ray just a few minutes ago to check on her reflux. So far, so good. They are going to add some dye to her formula so that if she does reflux it will be very obvious. The doctor is planning to go very slowly on turning up the volumes on her feeds, to give her body a good chance to adjust to the changes.

Dr.O., her neurologist came by to see her tonight. Ray made a comment about how if someone saw her for the first time today, she would look like a very sick little girl. But, for those who have watched her from the beginning, it seems that she is now tap-dancing on the coffee table. He told her that it was probably just his Daddy-bias, but she answered that, no, that wa probably a very good analogy for Abbie’s progress. Praise God!

I was thinking last night about feeling completely poured out or used up, and how our society encourages us never to get to this point. But, then I pictured getting to Heaven with energy left in our tanks, and Jesus asking “What good do you think that will do here? I gave you that energy to completely spend in the world, doing the good works I designed just for you.” I think that the world avoids being used up because there is no alternate Power Source to rely on. However, we can rest assured that when we are at the end of ourselves is the exact moment when God’s power will fill us. I have seen and felt God’s people pouring themselves out in support of Abbie, and us, and it has been so humbling. In the middle of the night, while pondering this, I picked up the Faith section of the newspaper. There was a quote from the late Rev. Paul Osumi that summarizes my thoughts much better than I can. “When you and I have finished our work on earth and have moved on to our reward, we will not be remembered chiefly for the positions we held, or the money we accumulated. Rather, we will be remembered for what we accomplished in terms of service to our fellow men and the spirit in which we performed our duties. We will not be asked ‘How much money did you accumulate?’ or ‘What position did you hold?’ but ‘How much good did you do for your fellow human beings?'”

Sunday, June 6 11am

Another night of seeing God’s hand in everything, especially in things that seem like negatives at first. The nurse and I were bathing Abbie last night and were just about finished when we noticed that her feeding tube was leaking all over the bed. After fiddling with the ports with no success, the nurse determined that there must be a clog somewhere in the tube. She tried to inject syringes full of Coca-cola into the tube to clear it. Yes, it’s true — the Real Thing does have medicinal purposes after all. This strategy also failed. She then tried to clear the blockage with a small wire inserted into the tube. It still remained blocked. The staff determined that Abbie would need a whole new tube, and because it would need to be run all the way to her small intestine, the procedure may have required radiology support. That would have to wait until the morning. I asked the nurse if we could give Abbie a chance to try having the tube in her stomach again. It has been two weeks since she last tried having it in her stomach and had problems with reflux. She has improved so dramatically since that last test that I wanted to see if she could handle the tube in her stomach now. The staff agreed to give it a try.

So, at 2am the new tube went into her stomach. As of right now, at 11am, there has not been any reflux. This is such a HUGE praise, and a big surprise. God is so gracious. I can see now that the clog or kink in the tube was His tool to say “It’s the right time now” for Abbie to try again.

I was reading through the Psalms, trying to find a way to express my praise and gratitude, when I came to Psalm 77. It is written by a man crying out in seeming abandonment by God. But then in verses 11-14 he changes his tune, and says “Then I thought, ‘To this I will appeal: the years of the right hand of the Most High.’ I will remember the deeds of the Lord; yes, I will remember your miracles of long ago. I will meditate on all your works and consider your mighty deeds. Your ways, O God, are holy. What God is so great as our God? You are the God who performs miracles; you display your power among the peoples.” The God who performs miracles also never changes. As I meditate on all He has done and revealed through His Word, my anticipation builds — waiting to see what He is doing in Abbie, and in all of us.

I love you baby girl.

Saturday June 5, 7:45

Urgent Prayer Request: Three days ago they took a a culture from Abbie’s tracheostomy site. Today the culture came back positive for a bacterial infection. They started her on IV antibiotics while we await the results of a blood test due tomorrow. Please pray that the infection has been confined to the surgery site and has not entered her bloodstream. Her wound site looks good, her white cell count is fine, and she has not been running a fever, so all other indicators look favorable. But, this is one fear that has been nagging me since day 1. She is fighting so hard, and I don’t want to see her overtaken by an infection.

She had another good day, otherwise. She is starting to sleep well for longer stretches of time – up to four hours. She was very active this afternoon, and wiggled her thumb when I asked her to. She received six new beautiful flannel gowns. These ones were made with a bit of a V-neck to accomodate her trach. The outpouring of kindness brings me to tears. She also got several pairs of matching “pretties”, so that when she is well enough I can give her the pigtails she loves so much.

I must tell you how much comfort I took knowing that, after we heard the news about her infection, I could count on Abbie’s Army of prayer warriors to turn the tide for her. You are standing shoulder to shoulder with us and giving us such strength. We feel so inadequate to thank you, but hope that the Lord’s blessings rain down on you for your kindness, perseverance and encouragement.

Saturday, June 5 11:30am

Last night was wonderful – being with the kids, seeing Shrek 2 (my first time, the twins’ fourth), and sleeping in my own bed while it was dark outside! Thank you for the prayers for good family time. I didn’t go back to the hospital until 4:30. A very faithful friend sat with Abbie after my mom left at midnight. I am home again so that we can spend some more time with the kids today.

Abbie seems to have hit a rythm of one new thing a day. She accomplished her feat early today, probably so I could write to you about it this morning. We were getting ready to suction her, and I told her it was coming. She started nodding her head “no”. She did it 3 or 4 times. I am almost positive she was communicating with me, but when she does new things I like to watch for 2-3 days to make sure I’m not imagining it. I will keep you posted on the further evidence that there is still a 2-year-old in there, probably screaming “no” in her head!

My mom, and my Uncle Tim and Aunt Lois are with her now. When I left we had her in her Tumbleform seat and she was so comfortable. After about ten minutes in it she was asleep. It is nice to see her legs relaxed and not straight out in front of her.

I am learning through this, among the thousands of other lessons, that faith is not a feeling but a discipline. Driving home I was listening to “Great is Thy Faithfulness” and trying to sing along. But, I just didn’t feel it in my heart, even with these daily miracles. I forced myself to sing along anyway, and to mean the words I sang. I realized that faith lived out when we don’t feel like it is probably more precious to our Father than those mountaintop moments when our souls are bursting with praise.

Friday, June4 2pm

A day of seeing what “exceedingly and abundantly” look like in action. The physical therapist came to place Abbie in a special seat called a “Tumbleform”. It is a firm foam seat that looks sort of like a car seat. It was great to see our big girl sitting up, and she enjoyed it as well. But, then the real miracle began.

As we expected, Abbie’s legs were fairly tense when we put her in the seat, so they were sticking straight out. The therapist put Abbie’s stuffed Nemo under her feet and asked her to find him with her heels. She did!! Then we turned him sideways so she would have to go down farther to find him. She did!! Then we moved Nemo and put a little dog in his place so that Abbie would have to put her feet down farther. When we asked her to, she did!! The therapist was astounded at how well Abbie followed directions. She said that she was going to ask speech therapy to come up.

I was curious what she thought they could do for Abbie at this point. She said that they have a lot of assistive devices to help Abbie communicate — she felt this would cut down on her frustration. I think it took a few minutes for me to absorb what she was saying. Not only was she acknowledging that Abbie can hear, understand, and comply with directions, she was also saying she believes Abbie can communicate!! Even as I type this I am shaking my head in near-disbelief.

This is such a huge step, and gives so much hope for the future. It was exciting too, to see how thrilled and surprised the therapist was at what Abbie can do. The pace at which she is recovering is more that we could’ve hoped for. God has shown me over and over that nothing stingy comes out of His storehouse. He loves nothing more than to rain down blessings on His children, and today I feel that we are soaked to the skin in His abundance.

Ray and I are taking the kids to dinner tonight and both taking an evening off from the hospital. The other kids really need us, and the twins especially are beginning to show the strain of having a phantom mom. My mom, who has been incredible through this whole journey, will sit with Abbie tonight. Would you just pray that their time together will be sweet and that Abbie will be calm? And, would you pray that my upcoming nap will be enough rest so that I can be pleasant and loving to the kids — they haven’t seen that side of me lately.

I am so excited to share what Abbie is doing with you, because you are a big part of making it happen. I truly believe that what is going on can be summed up very simply as the power of God, unleashed by the prayers of His people.

Thursday June 3, 8pm

Getting ready to head back to the hospital. My mom said that during the time she spent with Abbie this afternoon Abbie’s secretions were much, much less. This is a real answer to prayer and should help to make her more comfortable.
It has been one month today since Abbie’s accident, and as I remember that first night it reminds me how incredibly far she has come. It is too painful to dwell on for long, but thinking about that first week and the struggle just to hold on to life brings me to my knees again with praise and thanksgiving for God’s faithfulness.

Major prayer requests are for her esophagus to be healing so that reflux will not be an issue for her. Please also keep praying about improvements in her awareness and responses.

Prior to Abbie’s accident I was almost finished with a Beth Moore study called “A Woman’s Heart, God’s Dwelling Place” that focuses on the Old Testament tabernacle. I studied each part of it in depth, and today I pondered the lampstand again. Inside the Holy Place the lampstand burned olive oil, illuminating all the beautiful furnishings of the Holy Place. Of course, to get oil you have to press, or crush the olive. I think we all spend so much time worrying about keeping our perfect Olive shape, or becoming the very best Olive we can be. We obsess about training our Little Olives,including living in the best Olive neighborhoods and gaining admission to the best Olive colleges. We are completely missing the point.

We only become useful when we are pressed — when all we work so hard to maintain is crushed to produce something that is actually valuable. As I look at my precious little girl lying in a bed because she has been crushed, tears are kept at bay by the light I see radiating around her — God is using the oil pouring forth from her to illuminate darkness all over the world. I can only marvel at how God works.

We are so proud of your progress.

Thursday, June 4 11:11am

Finally home after a couple straight days at the hospital. Our little Abbie is doing so well. I bought her a bunch of little toys, including a spongy little football. That one is definitely her favorite, and she squeezes it on command. She is also starting to lift it. Her cough has gotten remarkably stronger, and her gag is improving as well.

We had our first “discharge planning meeting” yesterday with the case manager, social worker, financial services folks, and Abbie’s doctor. It was exciting to be talking about bringing her home. The mountains of paperwork bring back memories from our Army days, but we are thrilled to be filling out what seems like tickets home for Abbie. It looks like it will take 4-6 weeks to get everything in place, specifically the home nursing care, in order to bring her home. The Occupational Therapist is going to visit Abbie tomorrow to begin the process for getting her a wheelchair and “seating system”.

God is asking us for patience in almost every reading and message. My good friend Evelyn gave me a book yesterday by Elisabeth Eliot, a woman whose faith astounds me. The last paragraph I read said this, “Sometimes the word comes very slowly. In Psalm 112:4 we read ‘Light rises in the darkness for the upright.’ It may be a gradual thing, imperceptible at first as the coming of the dawn, but long before we see it, the cock crows and there are stirrings. There is no question that the dawn will come. We have only to wait.”
In my waiting I hold on to the truth that “the dawn will come” and in this night I am treasuring the opporunity to get to know the Lord so intimately.

Pretty as a princess.

Tuesday, June 1 10:30pm

Just about to head out the door to relieve a very tired Ray. I was getting the update on Abbie from my mom, Crystal, and Chase because they spent the afternoon with her. My mom said, “Well, something kind of bad happened, but I think it is good.” That got the knot in my stomach re-tied..She said that it looked like Abbie was hiccuping. They asked the nurse to look at her, and the nurse said it looked to her like Abbie was crying. The movement looked like the kind that kids do when they are crying hard and trying to catch their breath. Her tears were also flowing. Oh, this broke my heart to hear. Please pray for her physical comfort. I don’t want her to be in great pain as she heals. Please pray also that all of us who love her so much will be able to comfort her during this time. As much as new movements and responses are exciting, I pray that we will not see this specific one again. It is such a blessing and comfort for me to sit here and type this knowing that this simple message will result in prayers being poured forth for Abbie. Thank you so much!

Mama loves you.

Tuesday, June 1, 3:30pm

It is JUNE!! We made it to a new month. This was an unimaginable feat a few weeks ago. My heart leapt when I saw the dateline on the newspaper this morning. Just when I think we have reached a new high point, God takes us to another mountaintop. Last night was a perfect example. I went home to sleep yesterday after watching Abbie have her most active day yet. I didn’t think it could get any better, but when I returned to the hospital at midnight, she was breathing room air. This was exciting enough in itself, but the true blessing of it was getting her out of bed, putting her “nose” on (a filter that covers her trach tube), putting her in a stroller, and walking out of the ICU with her. I was strolling my girl!!

The nurse and I took her downstairs and put her in a tub for a real bath. I could barely grasp that she was taking a “normal” bath, sitting in a toddler-size chaise lounge. The freedom of being out of the ICU was intoxicating for both of us. She loved her bath, and was completely worn out by the time we got back. I told her to relax and go night-night, and it took her about 2 seconds to comply.

Every day with Abbie is a miracle, every single day!

Of course, the highs don’t last forever. In the quiet moments the doubts creep back in. Today it was my doubt that I can support Abbie all the way through this without becoming worn out or discouraged. In other words, I was scared I would be a quitter. I generally don’t like televised preaching, but right around the time I was wallowing in those thoughts a man was delivering a message on confidence. He used Philippians 1:6 “..being confident of this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus.” Oh, yea…I was forgetting that GOD will finish this task He has begun, not me! I think this is why sometimes I don’t pray for the big jobs or stretch myself to accomplish the difficult tasks. I fear being overwhelmed and defeated. Somewhere along the line I inevitably attempt to take back the reins from God, as if to say, “Thanks for getting me this far, I’ll take it on in from here.” He must get a good chuckle out of that one. In my own strength I have never conceived of or begun a single good work, so I must remember I will never finish one on my own, either.

Abbie’s secretions have been much less today as the medicine for that starts to take effect. Please just continue to pray for her permanent transition to room air. Right now she goes back and forth between room air and 24% oxygen, which is a normal part of the process of weaning. I am going to begin to try to stimulate her in various ways and with various objects. Please just pray that we would see responses to this. She is so beautiful. We will try to get new pictures up on the site, soon. Perhaps we’ll even have one of her cruising the halls looking for trouble…

Thank you for my new jammy’s

Monday, May 31 2pm

Happy Memorial Day! I hope that you got the chance to reflect on the price so many have paid for our freedom. The sacrifice that so many have made, and are making (including their families) must never be forgotten or taken for granted. Please remember our soldiers, sailors, airmen, and Marines in your prayers, and ask for extra grace and strength for their loved ones.

It’s a special day for another reason. It is Miss Hannah Carver’s 5th birthday. She has taught us so much in preparation for the journey our family is now taking. You see, Hannah, the 5th child born to some of our dearest friends, has Down Syndrome. Through her we have seen that special children are some of God’s purest blessings. When we wonder what life may be like with Abbie, we think of Hannah and smile as big as she does!

An exciting thing happened yesterday. Dr. O., Abbie’s neurologist, was able to sneak up on her and see some of her tricks. Whenever Dr. O. has come to see her, Abbie seems to fall deeply asleep and won’t do anything. For the first time yesterday I got to hear Dr. O. say “Yes, she has voluntary movement. Yes, she pulls her foot away when I tickle it. Oh, I see some eye movement.” I almost fell over. I have been waiting so long for her to be able to see Abbie do the things we have been watching develop. It was thrilling for all!!

Today Abbie is moving even more. She is lifting her entire leg, and moving her arm from the shoulder. She is blinking at us more and more, and trying to move her head. She listens intently as I talk about special memories we have, and responds with her eyes, and by sucking and dancing. It is incredible to think that she may have some memories left!! Her mouth has started to move a little bit, too. I told Ray that one day she is going to smile at us again!

We crossed a big hurdle toward getting her home. We learned to deep suction her last night. This involves inserting a catheter through her trach and down into her airway. This was intimidating, and I was nervous. But, Chase actually learned first, while Ray and I were at dinner. The nurse said he was wonderful; very gentle and tender, talking to Abbie the whole time. So, if my 13 year old son can do it, who am I to chicken out?

It was a piece of cake, and I am glad to be able to make her feel better when she needs it. Abbie is on a new medicine to help control her secretions, so we are hoping that she will need less suctioning.

Major prayer requests are for improving strength and function. Please pray that her muscles would not get tense, especially her thumbs.

Today marks 4 weeks since her accident. In one way it seems like years, and in another I am amazed at how far she has come in such a short time. It is becoming obvious to all who see Abbie that your prayers are helping to unfold a miracle day by day. Thank you for your perseverance!

Daddy’s little girl.

Saturday, May 29 10:35am

Big steps sometimes sneak up on us and it takes a while to absorb them. When I got back to Abbie’s bedside last night it was around midnight. We were just kind of doing the normal things like bathing her and repositioning her when the nurse suggested to the respiratory therapist that we transition Abbie to room air. He agreed to give it a try and ten minutes later she was without supplemental oxygen and a breathing tube for the first time since her arrival!!

It seemed like a perfect opportunity for a little rocking time, so I asked if I could hold her. It was INCREDIBLE to be able to rock her without tubes interfering. I could scarcely believe that she was in my arms, breathing completely on her own — an answer to such a long-standing prayer.
After a while she did need to go back on the trach collar which gives her humidified air and a little bit of extra oxygen. She slept peacefully for most of the night.

This morning she gave a dance performance for our friend Tanya, which brought her Daddy and I, as well as Tanya to tears.

We stood at her bedside and watched President Bush’s speech dedicating the WWII Memorial. When the Lord brought the children of Israel across the Jordan river, he commanded that they place memorial stones so that future generations would be reminded of what He had done. In our family we spend time each Memorial Day weekend remembering what the Lord has done for us in the previous year, and more importantly, writing it down. When you see the blessings and provisions start to pile up, the tracings of His hand become so evident. I encourage you to do this with your family this weekend..count your blessings, number them one by one.

Tiffany washing Abbie’s pretty hair

Friday, May 28 6pm

Another day of moving equipment out of Abbie’s “room”. They took that big, bulky ventilator away and gave her just a humidifier instead. What a sweet victory! She continues to breathe well on her own. Would you just pray that her secretions will decrease? We are having to suction her quite a bit, which she despises.

Please also pray for her comfort as she heals from her surgery. She is needing less morphine today, but I just don’t want her to be in any pain.

God has taught us so much already through this, and one unexpected point He has made is about fear. This situation is every parent’s greatest fear. And, while I would give anything not to be here, I must say in the same breath that God is so faithful in sustaining us through this. In the month before Abbie’s accident He was really working on me to trust Him by loving my children with abandon, not holding back a corner of my heart for fear that something would happen to them. I obeyed Him, and committed to loving my children without fear.

When Abbie’s accident happened I momentarily raged against Him for “setting me up.” He answered that He had asked me to trust Him, not just to keep them safe, but to trust Him especially if they were in danger. I had missed that part in our earlier conversations. And so I find that He truly is faithful, and my vision of Him now has removed every trace of fear from my life. If I longer have to tremble at my greatest fear, one of my children being hurt or dying, then what have I left to fear in this life?

As I was reading through Hebrews during Abbie’s surgery, 2:15 stood out in lights: “and might deliver those who through fear of death were subject to slavery all their lives.” The fear we bow down to is what enslaves us. The fear we bow down to is what He died to free us from. “There is no fear in love, for perfect love casts out fear” 1 John 4:18. We can walk through this world with peace, assurance, even boldness because our confidence in not in ourselves, but in the One who never changes. “For He has not given us a spirit of timidity (fear), but of power and love and discipline.” 2 Timothy 1:7

Friday, May 28, 7:30am

So many praises to catch up on! I have not been able to get an update out for a few days, and so many wonderful things have happened. Abbie did have her tracheostomy on Wednesday. She did beautifully. I was so looking forward to seeing her face again, but was completely unprepared for how powerful that moment was. It was as if I’d gotten my little girl back all over again. Just to be able to kiss her sweet little lips (which I did over and over..). She had a pretty red little mustache from the tape, but it has almost all cleared up.
Once we got her settled back into her bed, I asked her doctor if she could have her binky.

For the last three weeks she has not had good things in her mouth, and particularly hated being suctioned. So, it took me a while to get her to unclench her teeth. I finally got it in, and the nurse said “Oh, wow!’ I asked her what was wrong, and she just said, “As soon as you put that in her heart rate dropped by ten points!” She went to town on that binky, erasing any doubts that the motion she’d been doing with her mouth had been a sucking motion.

She was assisted by the ventilator through the night as she came out of anesthesia and was on morphine for the pain. On Thursday morning they switched the ventilator back to the CPAP (continuous positive air pressure) setting, so that she was doing the breathing for herself. It took her about an hour to become steady at that setting. And, then – the moment we had been praying so hard for!

The ventilator was turned completely off at 11am yesterday!!! She now just has something called a “trach collar” that fits over the trach to give her humidified air. She is so strong. She lets us know when she is feeling pain by becoming very tense and agitated. She is still receiving morphine for her post-op pain, but the dosage will be cut down today.

She was visted by a physical therapist yesterday, and at that time was in a sleep pattern. I told the therapist that Abbie can move her feet to command. She really wanted to see this, so we thought we’d give it a try even though Abbie was sleeping. I asked Abbie to show us her pretty dancing feet. For a moment nothing happened, but then her heart rate and breathing suddenly picked up and she moved her foot for us. It would be fair to say that both the therapist and I were gleeful.

Right before her surgery on Wednesday one of the men who worked on Abbie in the ambulance came to visit her. Initially, I could not get any words out through my tears of gratitude. How can you thank someone for giving your daughter another chance? It was good for both of us, I think, to be able to talk through that day. It takes such a special breed of person to do that job, and I am so thankful that the people who can do that job stick with it, even when it is painful. Thank you so much for your continued prayers for Abbie and our family, they have sustained us in ways that I can barely comprehend and can’t even begin to describe.

Bath time.

Tuesday, May 25 3:36pm

Another great day for Miss Abbie. Her pediatrician spent a good bit of time just watching and observing her this morning. She concluded something that I had suspected but had chalked up to “wishful-mommy-thinking”…Abbie cries tears in response to things that irritate her or cause discomfort. This would include suctioning her tube, changing her diaper, and some of the physical therapy exercises. I was excited to hear her assessment of this, but it broke Ray’s heart to think that she is crying.

She will not be having her tracheostomy tomorrow. The surgeons are working on coordinating all of her procedures so that she will only have to go under anesthesia once. Ray and I are also still considering the best options for her, so please pray for wisdom for us in that matter. We are so anxious to see her face again, but even more committed to doing the right thing. Once again, patience, patience, patience!

In most accounts angels are dressed in white or bathed in light. However, as a result of Abbie’s accident, we have come to know that some angels wear blue. They have the words “Fire” and “EMS” on their shirts. Ray was able to talk to the EMS supervisor who responded to our call. He is the one who actually scooped Abbie up from the pool deck and carried her to the ambulance. How do you thank people who never gave up, who never quit…even when it seemed like she wasn’t going to come back? I think of them every day, and especially in the dark of the night as the incident replays itself over and over in my mind. I pray special blessings on them, and on all the “angels in blue”…your dedication, skill, and determination have given our little girl the chance to fight her way back!

Tuesday, May 25, 4am

In my exhaustion yesterday I forgot the most important part of the update. Ray got to hold Abbie on Sunday evening! He was planning to go to church that evening, but around 5pm the nurse asked if he wanted to hold her. Just like me that morning, rocking our baby won out over church. It is very hard for Abbie’s “Big Daddy” to see her like this, he wants so much to be able to just reach out and fix what is broken. It was a big step to have her in his arms again. I went home to sleep yesterday, but a day-old migraine wouldn’t let me, so I came back around 9.

I was with two good friends, Kathleen and Sandra, making our midnight cafeteria run (it stays open until 3!), when Kathleen’s husband, Pastor Duane, called. Just a few minutes later I told them that my head finally felt better. Kathleen smiled and said when she’d spoken to Duane he’d mentioned he would pray specifically for my headache. The prayers of a righteous man availeth much! I told Kathleen that we have one head down, one to go…keep praying!!

Abbie went through periods of tenseness today, but relaxed for therapy, and is sleeping peacefully now. Please, just keep up the petitions about her muscle tone. We don’t have a time for her tracheostomy tomorrow – I will post it as soon as I have it. We are apprehensive, but also excited to see her face again. I spent yesterday reading “Streams in the Desert”. Even though it is a daily devotional, it was too good, and I couldn’t restrain myself to just one day. So, first I looked back at May 3rd, the day of Abbie’s accident. The verse for that day was ” And it shall come to pass that whosoever shall call on the name of the Lord shall be delivered.” Joel 2:32. There was a wonderful commentary by C.H. Spurgeon, the last paragraph of which read, “My case is urgent, and I do not see how I am to be delivered; but this is no business of mine. He who makes the promise will find ways and means of keeping it. it is mine to obey His commands; it is not mine to direct His counsels. I am His servant, not His solicitor. I call upon Him, and He will deliver.”

I believe that we all need deliverance from something. You may think that your situation pales in comparison to Abbie’s, but in God’s eyes it doesn’t. Your trials are the very tools He is using to shape you, just as He is shaping us through Abbie. In fact, because of our desperate circumstance it is almost more natural for us to cry out to God, but I challenge you to do the same in your life today. As you lift up Abbie, consider what God is also able to do in, for and through you!

Miss Nancy, Abbie’s church nursery teacher.

Monday, May 24. 1:30 pm

Well, we are three weeks post-injury and Abbie continues to improve each day. Today her muscles are much more relaxed than yesterday, which is a big praise and an answer to much prayer. Please continue to pray about this as it may be a long term issue for Abbie. The new thing I’ve noticed today is her eyes being open when she is in an awake phase. Now, they are not wide open, more of a “half-mast” look. She has been doing it for a couple of days, but I thought it was just kind of an accident, or that they would just drop open when we moved her around. But, today there is no doubt that she is doing it herself and that it corresponds to her wakefulness. She is even blinking somewhat now and then. This is an exciting new step for her.

We have not yet met with the surgeon about her reflux surgery. Ray is going to try to set something up for tomorrow morning so that we can both be there.

A dear friend of ours, and a true Titus 2 woman, Pamela B. gave me a book I’ve been meaning to read for years, “Streams in the Desert” is a devotional/journal, and Pamela had bookmarked the page for May 22nd. The verse for the day was simply “God worketh” Psalm 37:5. The narrative was wonderful, and I’d love to quote it all for you, but the one line that stuck out was “Do you not see results? He worketh!”.

Pamela, through this book, like so many of you through your messages, cards, prayers, and actions, has bolstered my faith just when I needed it. I truly believe that though we may not yet see the fruit of it, He worketh!

Sunday May 23, 2:30pm

This is the day that the Lord hath made, let us rejoice and be glad in it!

Abbie is again setting the ICU fashion standards thanks to our sweet friends Brian and Mary Knapp. They brought some specially made gowns for Abbie last night – so no more standard issue hospital garb for her! Last night she wore Elmo and Cookie monster, and today she is in pink rosebuds.

I got to hold her again this morning. I had intended to go to church, but the opportunity to hold her won out. I must say, I think it was the truest worship I could have had – to hold my baby and sing His praises.

Her heart rate and BP continue to be steady, and consistently rise when she is mad about getting her diaper changed or her tube suctioned. Today, when the nurses tell her that the suction is coming,she has begun biting down on the tube. Two year olds are two year olds, even in the ICU!

Please just pray for her muscles to relax. She goes through periods where they are very tight and her legs shake a little. We will probably be talking to the surgeon tomorrow about her reflux surgery (Nissen), so I’m hoping that we’ll have the dates for both of her surgeries locked in tomorrow. We are nervous about her going under anesthesia, just as we were when Chase had his tonsils out. But, as her ICU Dr. noted today, these surgeries are very big steps on the road toward getting her home. And, it will be wonderful to see her face again with out all the tape.

I am going to take a nap now so that I can do the nightshift tonight. It’s an incredible blessing going to sleep knowing that so many continue to lift Abbie up to our Jehovah Rapha, the God Who Heals. Thank you for your faithfulness.

Saturday, May 22, 5:30pm

We met with both the Gastroenterologist and the ENT doctor today. Unfortunately, Abbie’s feeding tube surgery will not be as simple as we originally thought. She is having some reflux of the formula they are feeding her. To limit this in the future Abbie needs an additional procedure called a “Nissen” (sp?). We are hoping this can be done laparascopically. The ENT doctor is going to try to coordinate doing her tracheostomy at the same time as the Nissen and G-tube procedures, but it’s never been done before. We are just trying to limit the anesthesia Abbie is exposed to. Would you please pray for Abbie’s strength during these surgeries, which may take place on Wedsnesday. Ray and I could use an extra measure of wisdom this week as we are making all these decisions.

A few people have commented today on our “unwavering faith” and “remarkable strength.” I need to tell you that Ray and I definately have our dark times and weak moments – we just choose not to share those on the world wide web.

There was a verse that set me free when I was a new Christian – Mark 9:24 “I believe, help my unbelief.” “Wow!” I thought, I can even admit my doubts and ask for his help with those. I cling to that verse now when fear overwhelms me and our challenges seem bigger than our God.

I’ve been reading through a Beth Moore book “A Heart Like His”, about the life of David. The chapter today really spoke to me, but the biggest highlight was “assured victory does not mean easy wins.” He promised David a victory, but also mentioned exhaustion, hard-work, a twenty-four hour battle, and escapees. “When He can bring about a victory and strengthen and mature us all at the same time, He’s likely to do it!” I praise Him that He cares enough about us to refine us, test us, challenge us, and then pick us up just as we are about to faint. His purposes are so vast I can’t even comprehend a speck, but I know it is all good.

Saturday, May 22, 4:25am

More small steps measured by less medications. Abbie came off the Dilantin (seizure medication) yesterday. We praise God that she is not having any seizure activity, since it is very common after an injury like hers. They have also cut her Atavan (calming medication) back to once every 8 hours. She has responded to well to that, and her heart rate is the lowest it has been. Her BP remains very stable and in a good range as well. She now only gets blood drawn one time per day, as compared to 6 times a day in the first 10 days or so.

When I got back to the hospital very late last night she was fairly tense. We did her PT routine and she calmed down somewhat, although her muscles remained tight. She is more relaxed now. Would you just pray that her muscles remain relaxed and that I can work with her? It is very common for muscles to become rigid and tense, sometimes requiring medication. We are praying we can avoid that with Abbie.

Today is the twins’ last baseball game, so Ray and I will go to that together while my mom keeps Abbie company. This is another big step for us. I pray that we can enjoy the time with the kids and really “be there” with them. I hope that this day brings you special time with the people you love as well.

Friday, May 21 2pm

I am home again after spending a good night with Abbie. Her heart rate is steady and in a good range. Her blood pressure has come down into the normal range for the first time in a while, praise God. Today during therapies and other stimulation her heart rate would rise, but her BP would be stable, which is a good sign.

I was thinking about Job today and how he never wavered in the face of severe testing. As I was meditating on this God just said, “I am the God who restores….” But again, I don’t think he necessarily means Abbie’s health – I think His restoration for each of us is eternal, complete, and perfect. I was just shouting praises in the car on the way home — the more I get to know Him the more I am in awe.

Prayer requests for Abbie today would be that she continue to do well breathing on her own and that she respond to stimulus. It’s the weekend now — have a good laugh with your kids!!!

Friday, May 21 4:35am

Abbie’s heart rate has been excellent through the night, and her blood pressure has come down as well. It seems that her body is doing a better job of controlling her vital functions. Another big step was a resetting of the ventilator. They have now switched it to a “CPAP” function, which means that Abbie is doing all the work herself, it just give her a little push if she needs it. That is a huge praise! They took her central line out of her groin and now she just has one IV in her hand. The down side to that is now they have to poke her every time they need blood from her.

She loved her physical therapy tonight, and especially responded to the “ending touches”, a series of touches that signal the end of the session. I love any excuse to massage her with good smelling lotion!

Ray went home to sleep tonight, and we both agreed that being home has really been good for us. I think that will be our routine now. I was able to see the kids last night, and tuck the boys into bed. Well, actually, I got into bed with them and fell asleep…But, it was great to hear about their newest Lego creations, the birthday party and Shrek 2. Life is sweet even in the midst of the storm.

While I was home I picked up my copy of Oswald Chambers’ “My Utmost for His Highest” that was by my bedside. I looked up the verse for the day: “In your patience, possess ye your souls.” Luke 21:19 I laughed out loud. No matter where I go, God gives me encouragement and direction. He is using people and His Word each day, in some very amazing ways. I am so grateful that what He is asking of us is patience. It’s not a trait that I’m strong in, but He is working in me. Compared to asking us for Abbie though, patience seems like such a tiny request.

There are some new families in the PICU who seem to be teetering at the brink of having to let their little ones go. Would you lift them up as well today whenever you think of Abbie? May God bless you today.

Thurs, May 20, 1:00pm

I am writing to you from my house! A very big step for both Ray and I was coming home for the first time. I was very apprehensive about the flood of emotions it would unleash. But, I have to tell you that once again, God’s grace is more than sufficient. It feels so good to be home. I am going to take a good long rest in my own bed, and will probably feel like a new person when I awake.

Abbie continues to be very stable. I learned some new therapies for her today, and she really responded to them. She moved her legs, squeezed her hands, and moved her arms. I am excited to apply all the things I’ve learned to help her on her journey. Thank you for your continued prayers. Your steadfastness and constant encouragement is helping us more than I can adequately describe.

Thurs. May 20, 4:25am

Abbie’s heart rate never really came down last night, but she has been stable otherwise. High heart rates and flucuations in her vital signs are not abnormal after an injury like hers, but we are hoping that she mellows out soon.

I think that I will get to hold her again this morning, so I’m thrilled about that. Ray actually went home to sleep for the first time last night. It was a big hurdle for him to get over, and I am going to try to follow his lead today. It will be difficult to see all of Abbie’s little shoes and toys, but the pain will be cushioned by the fact that we still have her, and she is fighting hard.

Our small group met last night and talked about James chapter 1, specifically about joy, since James tell us to consider it all joy when we fall into trials of various kinds. I’ve long known that joy and happiness are not synonyms, since happiness is dependent on circumstances but joy is found independently of them. But, until last night that’s where my definition stopped – I thought joy was just seeing the best in all situations and knowing that God works in everything.

Now I believe that joy can be defined as being in God’s presence, and trials are the surest way He draws us to Him. So, when he uses tragedy we must rejoice at how near we come to Him. He promises to never leave us or forsake us and I have felt the reality of that promise every moment.

Today is my parents’ 37th wedding anniversary, and unfortunately my mom is here and my dad has returned to Oregon. But, a situation like Abbie’s certainly shows us that nothing matters as much as family, and we celebrate across the miles today!

Abbie, Tiffany and friend.

Wednesday, May 19, 10:15pm


Right before shift change the incoming Dr. asked if I would like to hold her today. The shock and anticipation wiped away my exhaustion, and I literally skipped down to breakfast while they took out her arterial line IV to make holding her easier. At 8:15am I took my seat in a rocking chair they brought up and just held my breath. It was more overwhelming than any of the times I’ve held my newborns for the first time. They laid her gently in my arms and I just wept for about 15 minutes. God’s grace is just so abundant. Last week I thought that the first time I got to rock her would be the last time, as we would be saying good-bye to her. The fact that I got to cuddle my pink, warm beautiful baby with HOPE and not farewells was more than I could take in. I rocked her for over two hours. My arm fell asleep, my legs were cramping, and the staff thought I was crazy, but I just didn’t care!

After being up all night, I started to doze around 10:15. I thought that they might not let me hold her again if I dropped her while I was dreaming. So, we got her back up in her bed and all settled again. I wish I had words to describe the softness of her skin and the tenderness of the moments when I finally got to nuzzle her face and sing right into her ear.

God is so good, but He didn’t stop with just one miracle today. After a black night the sun was bursting through the clouds this morning, both literally and in my heart. When I was rocking Abbie she repeated a move she’d done earlier that had been witnessed by our dear friend. She moved her foot when I asked her to. She did it more than once. And, she did it while her pediatrician was watching!! We are trying to take each step, both forward and backwards with a steady attitude, but this was really exciting!

Her heart rate has been very, very high since about 2pm today. She is completely off the Versed and seems to be very sensitive to the noises around her. Please just pray that she would quiet down through the night, as she did last night. She has also begun to run a slight fever. Please pray that there will not be any infections!

Weds. May 19, 2:30am

Abbie is now resting quietly after a day of high heart rates and blood pressure. The nurse gave her a dose of Atavan, which is a calming medication (I asked her if perhaps she could slip me some too…). They have turned down her sedation, so the Atavan is just helping her settle down.

Please continue to pray that she would come out of the sedation smoothly and would not be hypersensitive to stimulation. Pray for her gag and cough to return. Please pray for her to be responsive to us. And, please pray for wisdom for us to know what she needs.

I had a friend come by late tonight and it was good just to talk through all the thoughts swirling in my mind. After venting my fears, my sadness, my grief, my guilt, my doubt (obviously, she was here for a long time!), I find that again, God is sufficient. He truly is all we need. My hope is so much greater than just a hope of Abbie’s recovery. My hope is based on the fact that God is sovereign, that He works all things for good, and that He loves us. He is certainly able to heal Abbie, but none of us can know the will of God and His purpose for allowing all this to happen. I try to step back and see that there is a much larger picture here than just what is going on in Abbie’s body…it’s what He’s doing THROUGH her that is just as amazing as a healing of her body would be. The only thing I want more than having my little girl back is for God’s will to be done. I hope and pray that it’s His will for her to heal, but if it isn’t, I choose to trust and praise Him anyway.

Tuesday Evening, May 18

Another day of little steps forward for Abbie. They have turned down her Versed (sedative) from yesterday and it seems that she is more aware of her surroundings, judging from her heartrate. She has had many dirty diapers today and the monitor has shrieked for her each time, as her heart rate and BP soar. A friend was tickling her toes today and she lifted her leg three times for him. Not sure if it was in response to the tickles, but we chalked one up for the home team anyway. They have cut down the dose of Mannitol (brain swelling med) again today, and she will probably get her last dose tomorrow.

We discussed with the doctor the possibillites of getting her feeding tube (“G-tube” inserted in stomach) and a tracheotomy perhaps later this week. She is breathing well above the vent, but doesn’t have a strong enough gag to protect her airway. I was really hoping that she wouldn’t have to have a trach, but it will be the safest option for her – and, it’s not permanent. Please pray that she will start gagging and coughing strongly.

We are starting to have many discussions with the staff about when Abbie goes home. Yep, that’s right, “WHEN”!!! Our family will have lots to learn about how to care for Abbie, but we know that home is the best place for her and we anxiously await that day. Please just pray for patience for all of us, and pray that she doesn’t get any infections or other complications that would frustrate the current plan. She is showing us a little bit each day that tells us she is getting stronger. I thank God for His faithfulness and His recognition that we are but dust and need almost constant reassurance. We are keeping all your prayers for Abbie, and I am hoping that as a young woman she will be able to see how many people lifted her before the Lord’s throne. Thank you for walking this path with us!

Tuesday, May 18, 4:25am

Sometimes when the machines say something bad, it really means something good is going on…tonight Abbie’s oxygen saturation rate in her blood dropped below 90%, which initiated the mild alarm bell on the monitor. This was a new one, and I was a little concerned. It turns out that Miss Abbie was biting down on the ventilation tube, decreasing the amount of oxygen being delivered. Once a feisty girl, always a feisty girl. The matter was taken care of quickly, and she popped right back up to 100%

She has done amazingly well with the ventilator decreased to 8/min. They test her blood gasses to see how well she is breathing, and her labs came back perfect. A huge praise!!

She has been squeezing my hand a lot tonight and moving her legs as well. She is bound and determined to turn that ventilation tube into a binky (aka pacifier) before she is done. At the rate she keeps sucking on it, she just may succeed.

Ray and I have gotten many questions about where we’ve gotten the faith to sustain us. I think the best answer comes straight out of Scripture..”faith comes by hearing, and hearing by the Word of God.” Romans 10:17.

I didn’t really become a student of the Bible until I was on bed rest during my pregnancy with the twins, and had a LOT of time on my hands. God used that time to really grow me up in my faith and give me a hunger for His Word. Through organized Bible studies, church, family devotions and homeschooling God has filled my heart with His Word, and that is the power that is sustaining us. I encourage you – if you don’t have a Bible, get one; dust off the one that’s on your shelf, or dive into the one you use every day. The whole Bible is a love letter to you, just waiting for you to read it. Through His Word He is providing comfort, endurance and hope to our family and we praise Him for that!

Monday, May 17 9:15pm

Abbie continues her journey back to us. They turned down her vent rate to 8 breaths per minute, and she has handled that well. They have also cut her Mannitol (brain swelling med) to every 8 hours today, and will go to every 12 hours after her dose at 10pm. The doctor is considering backing off on her Versed (sedative) tomorrow, and that would be exciting.

Merle Higa, a wonderful woman from our church, was singing to Abbie earlier this evening. As she sang “Jesus Loves the Little Children” Abbie’s feet moved back and forth. Ray and I almost started dancing along.

I also completed an assignment from the nurses – I left the hospital for the first time since the accident two weeks ago. Actually, I did it twice today! First, Ray and I met my family for lunch at the Spaghetti Factory. It was bittersweet because at the table we usually sit there was a family with a girl in a high chair. The pangs in my heart were quickly overcome with the realization that we still have our Abbie, and she may one day be back at that table with us. This evening, during shift change, I went to the mall to get Abbie some good-smelling lotion for bath time. So, tonight she’ll end up smelling like a mango or a papaya.

Her eyes have begun to flutter when people talk or sing to her, and when she is stimulated. I am praying for the day when she opens them to see us waiting for her!

Monday, May 17, 4am

Wow! Today will make two weeks in the ICU. The time has moved by in a blur, and I can’t believe that this is Day 15. We are still trying to absorb what has happened to Abbie, and sometimes awake thinking and hoping that this is just a dream.

She is doing so much better than expected, and we are trying to faithfully keep our eyes on just the next step, and not the entire road in front of us.

Abbie had another good night tonight. We figured out one more thing about her — she cannot stand wet diapers. Her heart rate was soaring into the 170s and the nurse couldn’t figure out why, until she checked her diaper. Once Abbie had a clean diaper on her heart rate dropped to the 130s. Seeing her respond to irritations like a wet diaper are encouraging to me.

The Lord is really teaching us about trust through this. So often we want to trust Him for a decision or a result. He is teaching us that to trust Him means to trust His wisdom too, realizing that the outcome is part of His perfect plan and doesn’t need to be our concern. I try to take the energy I burn up agitating about what the future holds and use it to meditate on and praise Him. He is teaching us to trust Him like Abraham did when He called Him to leave Ur. Abraham did not know where he was going, he just followed in faith. When Jesus asked Peter and Andrew to drop their nets and follow Him, they didn’t grill him with questions about His plan and the future, they just obeyed. We are being called to the same kind of faith, lived out on paths that can be difficult and rocky. We serve the same God as Abraham, Peter, and Simon – He never changes, and He never fails.

Sun. May 16, 8:45 pm

Abbie has had another stable day with some more small steps forward. They turned down both the ventilator pressure and the oxygen percentage. She is now receiving 26% oxygen, which is only 5% above room air. She has tolerated being turned on her sides today, and it has been nice to see her in different positions.

There is another family here in the PICU that needs the sleeproom tonight, and that makes me sad. Not because we won’t be getting any sleep, but because their baby is even sicker than Abbie. I do not know their names, but God does, so would you lift their little one up as well when you remember Abbie?

She has been sucking quite a bit today, and has been fluttering her eyes as well. We really don’t know what either of those things mean, but it is nice to see action of any kind. Please just pray that her blood pressure would stay down and that her heart rate would be normal.

“My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces PATIENCE. But let patience have its perfect work, that you may be perfect and complete, lacking nothing.” James 1:2-4

Sunday, May 16, 6:25am

Some more small steps along Abbie’s journey…they removed her catheter yesterday because they thought it looked like it might start to get infected. We were all so pleased when she wet her diapers! I’ve never been so excited to see a soggy size 4 Huggies. She has wet regularly throughout the night, so that is a big praise.

The pressure from the ventilator was also turned down yesterday. This means that the machine is blowing less hard to get the air into her lungs. She is breathing well above the vent, sustaining normal rates (20-23/minute) for long periods of time.

They decreased the dose of Mannitol (brain swelling medication) that she receives, and today they may space the doses out farther. She has responded well to this.

She does NOT like getting her diaper changed since she has a bit of a diaper rash right now. She flexes her legs, her heart rate soars, and she usually ends up coughing. I’ve always admitted to my kids that I am a “mean mom”, and I suppose my joy at seeing her response to diaper changes proves it!

Today you can pray that her heart rate would be under control. Her blood pressure was up a little more during the night than during the day as well. We are just keeping an eye on these things as her body works to retake control of these functions. We had to skip the spa treatment last night because we didn’t want to excite her and have her heart rate jump. More of a bummer for Mom than for her, I am sure.

The twins spent the night with Dad in the sleep room, after I got some time to snuggle with them first. They had a full day yesterday between baseball and a trip to the beach at Waianae. We didn’t see them until 8:30, and when we got the teary eyes and quivery lips when it was time to go home, we thought it would be a good night for a sleepover.

They asked last night “if Abbie wakes up, will she have forgotten things?” When we told them yes, they answered, “good, then we’ll make sure we don’t teach her any bad words this time!!” I love how kids can always see the bright side of things.

I spent a good portion of the night reading the book of James. What a gift, to hear God speaking intimately to me through a book read by millions of people. At the end of every dip and hill and curve of this rollercoaster we find that there is hope…and hope never fails.

Saturday May 15, 5pm

After sitting with my sweet girl all night I had a good sleep and returned to find her doing well and further accessorized. She recieved her “booties” while I was gone. They look sort of like little ski boots that will help to keep her feet in a healthy position. She will wear them for two hours and then have them off for two hours. We are also turning her now, and allowing her to lay more on her side. She responded to the stimulation of putting her booties on and turning. She has also been breathing well above the ventilator today. Her blood pressure has been lower and more stable today, which is an answer to prayer! She has not needed any blood pressure meds today. She also recieved some new socks and hair “pretties” today, so we’ll have a hard time choosing which one to wear after bath time tonight.

Abbie’s nurse today is a fellow homeschool mom, so it has been nice to talk about “normal” stuff while sitting by her bed. We will try to get new pictures up on the site soon so that you can see how good she looks now. When I am at a loss for words, like right now, there is one little melody that comes to mind every time…”Praise Him, Praise Him, all ye little children. God is Love, God is Love…” His presence has never left us, and we are learning more about His faitfulness each day.

Saturday, May15, 5:30 am

Abbie had another stable night. Her only challenge right now is her blood pressure. She did require medication on a few occasions to keep it down. Please pray that it would be under control today. I was able to bathe her and wash her hair last night, which is the highlight of each day. We are seeing progress one inch at a time, and our hearts ache for yards and miles.

I spent the middle of the night meditating on Hebrews 11 and 12, recomitting myself to run the race with endurance and keep my eyes fixed on Jesus. God is working in mighty ways, and I have to be still before him, quieting the cries of my mother-heart in trust and obedience. We’ve gotten news of people praying in France, England, Ireland, South Africa, Russia, the United Arab Emirates, Korea, Singapore, New Zealand, Australia, Thailand, Japan, Canada as well as most of the States. It is incredible to see how God is using one tiny, precious girl to draw His people close to Him. I hope that you will seek Him today by reading His Word — He will meet you right where you are at. Thank you for your vigilant prayers and petitions on behalf of our family and our sweet little Abigail.

Friday, 14, 5/14 8pm

Abbie continues to show her fighting spirit. She has been consistently breathing above the ventilator all day, which is an improvement. Yesterday she pretty much stayed with the vent until her more “awake” time at night. Today she often breathed at rates of 21-23 breaths per minute, which is normal for her age and a higher rate then she has been able to sustain before.

Her heart rate has also been more stable today, and has shown more response to stimulation. We are still keeping an eye on her blood pressure, and we have to let her rest when it rises too high. They have been weaning her off the sodium today, and she has responded well. If she keep this up, they may start to wean her off the Mannitol tomorrow. They were also able to increase her feedings (through her nasogastral tube) today.

As I was doing her physical therapy with her today she responded both with her legs and her arms, which was thrilling to me. She also responds to my singing, but I’m afraid that could be classified as a response to painful stimulus.

I also want to share with you how God is speaking through his people. We have some friends in church who walked this road with a newborn daughter years ago in Canada. Her dad stopped by today and apologized that he’s not been by more, but that it brings back the pain — which I totally understand. He said that he promised God that he would be obedient today, and came by to share a certain scripture with me. This scripture was given to his wife the night his infant daughter began to get better, against the doctor’s prognosis. I started bawling as he read Matthew 8:17 “in order that what was spoken through Isaiah the prophet might be fulfilled, saying, ‘He himself took away our infirmities, and carried away our diseases.”, because this is the very verse God gave me to cling to during the CT scan yesterday. Although I’ve read that passage in the Bible many times, that verse stood out as if it were a billboard. You just never know when God is going to use you to deliver a message of hope and encouragement!

Ashley, Abbie’s beloved babysitter, is with her right now. As Ashley put it, “I always spend Friday night with Abbie, so I don’t see a reason to stop now.” The support we are receiving continues to overwhelm us, especially as we are now entering the second weekend. I wish I could tell you how much it lifts us up to read your messages in the middle of the night!

I am praying that we will be like Joshua and Caleb when they were sent to spy out the Promised Land. They saw the same giants that the other ten spies did, yet they said “we shall surely overcome.” There are giants facing Abbie and us, yet we believe that the power of God can overcome any obstacle to accomplish His will. We also recognize that, despite their faith, Joshua and Caleb still had to wander in the desert for 40 years before they could enter the Promised Land. We pray for endurance and faithfulness as we walk this journey. Your prayers are a large portion of the manna that He gives us each day.

Thursday. May 13 8 pm

The entire family is gathered here at the hospital to celebrate my sister’s birthday. It is good to remember to laugh and enjoy each other’s company. The boys are gushing about their day that included a fierce round of putt-putt golf.

Abbie did well today during both her CT scan and her EEG. Both tests showed pretty much what was expected and were non-eventful (which is good). Her brain is still swollen, but it doesn’t seem to be getting more swollen. It is going to take time for the swelling to go down, so we just need to pray for her to be stable while her body does its work. There are not any more tests scheduled for the near future.

During her EEG test today I read the Sermon on the Mount (Matt. 5-7) over and over. The Word truly is living and met me just where I was at. At night what comes to my mind and heart are not so much cries of desperation or grief (although both linger in my heart), but songs of praise. Drawing so close to God I have seen even more clearly how infinite and perfect He is.

I am looking forward to wasing the EEG glue out of Abbie’s hair tonight and giving her a good back massage. For this day, please just pray that her swelling would begin to go down and that she would remain stable.

Thursday, May 13, 5:25 am

I can’t believe it’s already Thursday, day 11!

Abigail continues smoothly in her journey. Her doctor yesterday said that we are going to go very slowly on weaning her from the medications, doing it over the next 4-7 days. It was overwhelming to hear about a 4-7 day plan — we have really not been looking more than an hour or two out for so long!

She does have a CT scan and an EEG scheduled for today – this is one time I would really appreciate prayers for strength for Ray and I. I am so weak during the testing and waiting-for-results time. Our God is so much greater than films and tests, but the challenge to remember that is so much greater at that time.

I must tell you that Ray and I feel like Moses, with all of you coming alongside to help uphold our arms during the battle. In our own strength we could not be doing this – your prayers, your concern, your encouragement are truly carrying us along, especially in those moments when we feel poured out. God is so near to us right now. He says that if we call to Him He will answer us with great and unsearchable things which we do not know (Jer 33:3), and He is fulfilling that promise daily. We are learning so much about who God is.

It was incredible to hear last night that Abbie’s site had 39,000 hits from midnight ’til 4 pm yesterday — we are truly storming the gates! But, as awesome as that is, I have to tell you that what I hung onto all night was the number 2…I was told of 2 people by name yesterday who came to Christ this week because they were drawn by Abbie’s situation. It is difficult for me to fathom that their eternal destiny was changed by Abbie’s trial. Praise our God who takes what was intended for evil and uses it for the ultimate good!

Prayer requests for today continue to be stability, stability, stability…especially when they move her for her CT scan. Her momma’s heart is weak and doesn’t handle variations on the monitor very well. I wish you all could see her. She is so beautiful and strong, with skin softer than anything you’ve ever felt.

Wednesday, May12, 4:45 am

Abbie has been solid as a rock all night – so much so that I am going to bed soon. She is becoming more and more responsive to touch even though she is still sedated. Her new move for the day was raising her entire left arm, both when tape was removed from her right arm and during her bath. This day should begin the reduction of her Mannitol (brain swelling medication), so please pray that the process goes smoothly and she reacts calmly. It will be a tense day for us as this process begins, so we covet your prayers for strength and hope. We are seeing a large miracle unfold one little miracle at a time.

Tuesday, May 11, 6:00

Abbie continues to rest well and her vitals have remained stable all day. She has developed a reaction to the tape being used to secure her IV lines. When they removed some of the tape today she flinched several times, which is encouraging. The current plan to to back down very slowly (over 3-4 days) on the levels of mannitol and sodium that are helping with her brain swelling.

I have debated all day on how much to include in this update, because we are on such violent rollercoaster, and things change from one moment to the next. I have chosen to include mostly positive things, but after consideration, I want to include you on the journey our family took last night. I want to share with you how powerful, awesome, and steadfast is our God.

Abbie had an episode early in the evening yesterday when they turned down her ventilation rates. She did not respond well, and they had to work to stabilize her. Fairly soon after this Ray and I had a chance to look at her CT scan from yesterday morning with the neurologist. The findings were very sobering. This then led to a discussion between the neurologist, the intensivist (ICU Dr.), Ray and I, about how this seemed to be the beginning of the end. After much discussion, Ray and I concluded that we wanted Abigail to peacefully go to Jesus being rocked and sang to by her family. We determined that today (Tues.) would probably be the day for it. Ray and I, while heartbroken, were at peace knowing that she would be waiting for us in heaven with a Father who loves her infinitely.

We brought my parents and brother-in-law in and walked them through our decision making process. It was gut-wrenching to see my father sob for Abbie, but yet, peace filled the room. We then turned to the task of telling the kids.

Chase and Crystal had a fairly good understanding of the gravity of Abbie’s condition, but Kyle and the twins did not. We did not want anyone to be surprised the next day. We brought the big three in one by one and the twins in together. Ray was amazing, as God gave him just the right words to tell each child about Abbie going home to Jesus.

After we were done, I took Matthew in to see her. He looked up at the monitors and said “Mom, if her heart is beating 108 times a minute, why can’t she heal?” I explained that while her body is OK, her brain is very hurt and that it’s the brain that makes the body work. He asked, “Well, can’t we just brainwash her?” He was just not ready to give up on his sissy.

So, after coming to the brink of letting her go, I went in to see her and Abbie was breathing above the ventilator. She did this all night, and her vital signs were as stable as they ever have been.

Her pediatrician has been a godsend, and a real advocate for Abbie from Day 1, and she agrees wholeheartedly with us that while Abbie continues to fight, we will support her.

I again felt Abraham’s heart. In the ambulance, as she was not responding to rescuscitation efforts, I kneeled by her, touched her foot, and laid her on the altar in faith. Last night, we laid her at the altar again, trusting God to help us survive the grief that comes in waves that sometimes become overwhelming. Our Abba Father answered almost immediately, and gave her back to us — if not forever, then for a least one more peaceful day. I was able to help bathe her and brush her hair again last night, and the sweetness of those moments was so pure.

The swelling in her right leg is almost completely gone – praise God! Please just pray for continued stability for her, and keep claiming God’s promises, for they are all true.

The promise I clung to last night was that this is all “temporary and light affliction” and won’t compare to the glory to come. Well, if something this heart-wrenching can be termed “light” I cannot begin to fathom the wonder of the things the Father is preparing for us in Heaven! Just know, that as I pray over Abbie I ask the Holy Spirit to use me as a conduit for all your prayers..and He does. The power is impossible to describe. Just know, that you are physically and spiritually touching Abbie every day!

Tuesday, May 11, 5:30 AM

We were expecting Abbie to struggle through this night, and God surprised us yet again with her smoothest night yet. Her vitals were as stable as they have been. The swelling remains under control as measured by those stable vitals and her pupils which remained equal and reactive all night. She coughed spontaneously in the night, which is no small thing. We have her a sponge bath around 3 and put a new “pretty” in her hair..she is quite the ICU Fashion Diva. She responded well to the bath and we noted a rise in both her heart rate and blood pressure. Today will hopefully just bring more of the same — watchful waiting.

Please pray for continued stability and controlled swelling. Those will be the major specific prayer requests for the day. I will post any new ones in the guest book throughout the day.

All the kids spent the night with us tonight. The twins snuggled in the sleeproom bed with Ray, which was such a tender sight to see and medicine for my soul. The “Big 3″, Crystal, Chase, and Kyle slept in the conference room after staying up waaaayy too late keeping Abbie company and being spoiled by the nurses.

His yoke is easy and His burden is light, in Him (and only Him) we are finding rest. Your prayers and thoughts, your visits and help are helping our family more than you can imagine…you all are truly the hands of Christ.

Tuesday, May 11, 12:20am

Abbie is resting well and continues to breath above the respirator. They had to hyperventilate her today to help control the swelling in her brain, but she is back down at a level at which she can assist. The staff moved her onto a special bed today which circulates air all around under her so that her skin will not get bed sores. It looks so comfortable that I am tempted to get on it with her!

We have allowed the kids to stay tonight to spend some extra time with Abbie. Please pray that Abbie would continue to show her strength tomorrow by assisting with her breathing and keeping her vital signs stable. Although at times I feel that I am poured out, I know that God is faithful. Grief and fear wash over me in waves, but yet I hope, and that hope is so much greater than anything that this world holds. I covet your prayers for strength and eternal perspective. You are blessing us beyond measure by praying for our sweet little girl and our family.

Monday, May10, 6PM

Praise to our Father, her swelling is under control with the medication. Her pupils continue to be equal and “briskly reactive”. She has a comfy new bed that circulates air underneath her to protect her skin. The battle rages, and she is standing firm on the power of your prayers.

Monday, 3:30pm

Due to continued swelling, Abbie remains sedated today. Please pray specifically that the medication for brain swelling (mannitol) would keep her swelling under control. Pray that her vitals remain stable. She continues to give us signs that she is fighting, such as coughing when they suction her. We feel the power of your continued prayer.

Monday May 10, 5:30 AM

Abbie is looking and smelling beautiful after a sponge bath and hair wash. What a sweet pleasure it was to brush her hair and put her “pretty” back in it. She has had a great night, staying stable while continuing to assist in her breathing despite being sedated.

God is continuing to speak through His people to comfort and encourage Ray and I and the family. Ray gave our testimony about this week during both church services yesterday, and although I stayed to be with Abbie, he did the incredible job I knew he would. God has given him such strength to support both Abbie and I, and Ray is walking so closely with his Lord that it is beautiful to see.

With the exception of a nap from 11-1 I have been up since yesterday AM, so I will probably try to get a nap after shift change at 7AM. I covet your prayers while I am sleeping, as this will be an important day for Abbie. They will be cutting back on the sedation, and we will have a chance to see a little more of her emerge..we wait expectantly to see what our Jehovah God is going to do!

Sunday 5/9 1PM

It’s Mother’s Day and I have all my children with me – praise be to God.

Abbie continues to rest well under sedation and is responding as we had hoped. The plan is to allow her to rest today and then start backing off the medications tomorrow. She looks like a peaceful, perfect angel. I want to tell you that your prayers are the wings on which we are mounting up — they are powerful and effective, and they are being heard and answered.

Ray and I had the chance to be with all the kids last evening, and what a blessing that was. It was a gift of perspective from God. We played cards, got ice cream, and just hung out. Our Father reminded me that no matter what his plan is for Abbie, we still have joy in our lives — it felt so good to hug my kids and laugh with them!

I don’t expect that there will be much change in Abbie’s condition through the evening today. Please just pray for stability for her. Tomorrow it will be important to pray for activity to return and for her to respond to her examinations. God is giving us so much reassurance that it would take pages for me to explain it all. His presence is mighty in this place, and His power is surrounding Abbie and ministering to Ray and I.

May 8 Sat 12PM

Abbie is stable, responding well to the meds, and resting comfortably under sedation. She just had an ultrasound on her swollen right leg, which confirmed that she has a clot. It will be managed with blood-thinners. Please pray that the clot is dissolved and not dislodged.

Updated from Abbie’s mom Tiffany, May 8, 2004 3:00am

Abbie’s brain began to swell as indicated by fluctuating vital signs and unequal pupils. The swelling was brought under control through the reintroduction of medications that she had previously been on. Although this was a step backwards, many positive things came out of it.

When Dr. Chang inserted an IV line in her right arm, she flinched, which was a new and significant response. She continued to respond to stimuli even during the swelling. The doctor at one point kind of apologized for being so non-chalant during the re-introduction of the meds – but he was just confident he could control the swelling. I told him that I would take non-chalant ANY day. During the re-medication process Dr. Chang, who was Abbie’s physician on her first night in the ICU, admitted that he had been calling to check on her progress and had been “amazed.” Getting an ICU Dr. to label progress “amazing” was confirmation that our little girl is on her way to confounding the wise.

May 7, 2004

1. Abbie came off all blood pressure meds during the night. 2. Her breathing is better again, regularly less reliant on machines 3. Coughed when tubes were changed at am and noon. 4. They are now feeding her formula (through a tube) 5. Out of the bank of meds, there’s only one monitor (several meds and vitamins) left. 6. EEG showed no siezures. Smaller amplitude of waves, but steadier. 7. Responded well to stimuli 8. Temperature stable, tube for that removed 9. Catheter removed. 10. Abbie coughed spontaneously when plegm collected in her throat. 11. Had a bowel movement 12. Tried to move her head.

May 6, 2004

The MRI that was scheduled (hopefully) for tomorrow has been moved up to 1:30 today. Unfortunately the results were solemn. severe damage has taken place, but it is impossible to predict how Abbie will respond. She was taken off the sedatives to see what she is capable of and became more responsive through the late afternoon, moving fingers and squeezing toes.

May 6, 2004 Abbie’s condition is still critical but stable.

There has been little change. Tues’s EEG showed significant brain activity. Wed’s CT showed mild brain swelling, much less than the Drs anticipated. She was kept quiet yesterday in order to keep her blood pressure down but by evening she was not as responsive as she had been.

This is a small down on the rollercoaster ride that has been so miraculously up. Being the first down it was a little harder to take. Her right leg swelled during the day and was elevated. This is likely a side effect of the needles and meds and is not causing much concern. Positives are that her oxygen is down to 30% (the lower the better, she started at 100%), her slight fever from the night before was down, medications were reduced and the respirator were breathing 8-12 out of 24, Abbie making up the difference herself.

Major prayer needs to go into getting Abbie ready for an MRI tomorrow am. In order to be able to have the MRI she needs to be unplugged from most of her monitors and meds and be stable enough to make it through the 1.5 hour process.

Principle people moved from the state of shock on Tuesday to actively making decisions and getting support more specific and organized on Wednesday. Ray and Tiffany are getting some sleep and are able to eat. Their small group met at the hospital last night. Today holds the twin’s 7th Birthday Party, hosted by friends at a nearby park. Ray and Tiffany will be attending, likely around 4pm. Pray for Tiffany especially to be able to focus on the other children and not be distracted by Abbie’s condition at the time. Pray that it will be joyous.

Wednesday, May 5, 2004

Abbie’s condition is still critical but stable. This morning’s CT showed mild brain swelling, much less than the Drs anticipated. She was kept quiet in order to keep her blood pressure down but by evening was not as responsive as she had been Her right leg swelled during the day and was elevated. This is likely a side effect of the needles and meds and is not causing much concern. Positives are that her oxygen is down to 30% (the lower the better, she started at 100%), her slight fever from the night before was down, medications were reduced and the respirator was breathing 8-12 out of 24, Abbie making up the difference herself. Much prayer needs to go into getting Abbie ready for an MRI Friday am. In order to be able to have the MRI she needs to be unplugged from most of her monitors and meds and be stable enough to make it through the 1.5 hour process. Principle people moved from the state of shock on Tuesday to actively making decisions and getting support more specific and organized on Wednesday.

Tuesday, May 4, 2004

In the morning the EEG showed significant brain activity: far more than the doctors expected There have been no seizures, another major praise. As the day progressed the sucking, which started at night, became more often and more vigorous. In the early afternoon she fluttered her eyelids and opened her eyes often in response to stimuli: especially familiar voices talking, blood being taken, etc. She is still heavily sedated to give her body time to repair itself. She was down to 30% oxygen.

In less than 20 hours we have gone from Tiffany and Ray preparing themselves to make a decision when they will have to take her off the machines, to having the possibility of an active child. She did not have a pulse poolside and it was many minutes before she was at the hospital with a pulse, and then the heart was the only part of her that was working on her own. All day she has taken back responsibility for her own body functions. The last great encouragement was when the machines were breathing 12 times/min for her and she was taking 17. They quickly moved the machines in sync to help her with her own breathing rhythm while maintaining at least 12/min. So much prayer has happened and we must still be diligent. This afternoon we have made such ground, but there is so much farther to go. God is faithful and Ray and Tiffany were able to praise Him genuinely even when they believed there was no hope, save a miracle.

Major prayer needs are that there would be no brain swelling and no pneumonia.