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.

6/20/05
            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 allow 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.

 

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 and our family.

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!

4/12/05
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.

4/6/05
            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!

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!

3/19/05
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.

3/1/05
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 an 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