This was a few weeks back. Abbie's 1st day at church.

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

HAPPY BIRTHDAY ABIGAIL FAITH!!! 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.

Tickle tickle.

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.

Abby STANDING!

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.