Friday, December 28, 2007

Spying Out the Land

Last week I got a surprising phone call from the neurosurgeon's office, telling me that they'd received the referral paperwork regarding the baclofen pump and wanted to schedule an appointment for the 26th.  I assumed she meant January 26th...nope, they were able to get us in yesterday!  I was shocked and gladdened to be moving forward so quickly.

I did not have anyone to go with me to pick Ray up on the way to the appointment.  For the first time in all these years, Abbie was having a major respiratory event while I was driving to town.  I was able to turn her oxygen up to 3 liters while driving, but I could not suction her.  She was dipping down the the mid-80s on the pulse ox as my blood pressure rose, and thoughts of pulling over on the freeway rapidly filled my head.

Stopped at a light a block from Ray's office, my heart was groaning from the stress of Abbie's condition and from disbelief that it "had come this"...checking out a baclofen pump.  God spoke to my heart and said, "You are not putting the pump in today, just go gather the information, go spy out the land."  That last part, about spying brought to mind images of the twelves spies sent to the Promised Land.  My stress-induced retort was, "Well, Lord, this sure doesn't feel like I'm looking at the Promised Land!"  I promise, I think I heard a heavenly laugh, and then heard, "Well, what exactly do you think those twelve spies thought as they peeked down on giants in the land??"   Oh yea....gotcha!  I could almost hear Joshua exhort me "Be strong and courageous, be very strong and courageous."

Dr. M, the neurosurgeon was wonderful, and spent 45 minutes with us assessing Abbie, answering questions, and giving detailed explanations.  He was concerned about Abbie's need for oxygen, but I just didn't have the stamina, and did not want to consume appointment time to explain her healing cycles that come at specific times of day as a result of the many things we are doing.  He does think Abbie is a great candidate for the pump, and that it would offer much more relief than oral baclofen with significantly fewer drug side-effects.

The oral form is starting to really kick in as far as loosening her muscles, but I do think she is starting to become a little more glazed and less responsive.  Dr. M. has placed about 100 pumps, and when I asked how many families who had had a good trial (where they inject a dose into the intrathecal space to see if the medication will work), were then dissatisfied with the pump because the results were not as good as the trial.  He thought long about that, and then said he didn't have any patients in that category, and that all the families were very happy with the outcome.

Ray and I both really liked Dr. M, and agree that the pump is the best option for Abbie right now.  Dr. M. agreed that it may be beneficial to have it placed before her hip surgery so that she is as comfortable as she can be during the recovery.  So, in the next couple of weeks he will be determining the best physician to do the trial with us, as well as the best one to manage the refills and dosing after the pump is placed.

I am excited and relieved, which surprises me.  I guess I should have known that sometimes the Promised Land lies underneath some intimidating obstacles with ugly faces.  I also realize that what God  promises is not taken by force, but by faith.  In that faith, with much reassurance, we are going to move forward to the next step in Abbie's journey.  I don't have any sense of when we could actually do this procedure, but I am hoping to have it done by February.

Please pray for Abbie who will be very busy cat-sitting over the next few days to allow the rest of us to go to New Orleans for the Sugar Bowl.  We are THRILLED for the chance to go support our beloved Warriors, but Abbie was getting kind of sad with all the excited travel talk flying around.  Once I "got it", I realized we had to turn the situation into a positive for her.  Taking care of Grace was the answer.  I mentioned this to her physical therapist a couple weeks ago, and she responded by giving Abbie a "Kitty Sitting Survival Kit" for Christmas.  As I would pull each cat toy out of the stocking Abbie would grin and cluck.  She also bargained hard with her Daddy, working him all the way up to $5 per day -- talk about a push-over!!

Please pray for her nurses and friends who will be caring for her in our absence, and pray especially fervently that she stays healthy.  Times like this give me temporary schizophrenia...I am so excited to experience this with our boys, but I hate to leave her here and wish with all my heart that she could go with us.

I didn't write much about Christmas because it is a very tender spot for me.  Still painful.  Still blessed.  But, I hope that you had a wonderful celebration of the Savior's birth with your family and friends.  I prayed much during Christmas, mostly simple short prayers of "Help me" and "Hold me together".  I marvel at the fact that without God's willingness to become that little baby, I would never have had a bridge over which to carry my prayers, no matter how feeble, to the foot of God's throne.  I cannot fathom surviving without that relationship.

Will update after our return from New Orleans.  So, "Hau'oli Makahiki Hou" from the entire Vara Ohana.  May you be abundantly blessed in the New Year.  And, GO WARRIORS!

Tuesday, December 18, 2007

Backing Up

Yes, the whirlwind of this season caught up with me, preventing timely updates. Now with all the parties and performances done for the most part, I can try to encapsulate all that has gone on the last few weeks.

One of the most important things is that I started Abbie on oral Baclofen, a muscle relaxer, last week. Our talented Rolfer, Sally, has returned from her teaching stint in Buenos Aires, and came by last week to work with Abbie. As we discussed the highlights of the International Fascia Conference she attended in Boston recently, things which I've known for a long time became clearly confirmed. Fascia, or the connective tissue, is one of the primary electrical conductors in the body because it is continuous. Sally told me she learned that once there is a rent, or a tear, in the fascia it never really heals; just like the skin, it scars. Scars, like plastic, are not good conductors of electricity, and can inhibit the free flow. The idea of trying to preserve fascia for electrical reasons is something that western surgeons are not aware of and probably, at this point, couldn't care less about. But, Sally did encourage me that if there is anything non-surgical we can do to help Abbie, we should pursue it.

Sally's comments helped push me over the brink, and give Abbie the first dose of the Baclofen that had been sitting in my fridge for 2 weeks. I gave it to her at bedtime and she slept all night!! She awoke with a smile and with visible relief etched on her face. I gave her the second dose and waited to see if it would put her into a stupor. We played and stretched for over an hour, with her looking bright and cheerful. Perhaps this really was an answer!! Then, at 9am she fell asleep for over two hours, and no matter what we did we could not rouse her. My jubilant hope receded, and I thought again about the price of the trade-off. The second day on the medication though, she did not sleep at all. So, perhaps she was just making up for lost sleep now that her body was finally relaxed. The first three days on Baclofen produced noticeable differences in her tone, but honestly, the last 3 have not.

Seeing Abbie's relief at any measure of help with her tone has convinced me to pursue whatever means necessary to provide it for her. She smiles every time I tell her I am giving her "muscle medicine." She is at 30mg of Baclofen per day, and the max dosage is 40mg, so we don't have that much more margin to work with. This prodded me to go once again to the Medtronic website -- they produce the implantable device that delivers microdoses of Baclofen directly to the spinal (intrathecal) area. Although I've been told over and over that no one in Hawaii does this surgery, I searched the site for a provider. One neurosurgeon's name popped up, so I called his office.

The nurse confirmed that he does indeed do the implantation surgery and then refers those patients to a neurologist to manage the dosing and refills. I asked if he accepted pediatric cases, and the nurse paused and then said, "Well, he is a pediatric neurosurgeon, so of course he does." Wow!! She told me what they needed as far as a referral, and I then made those phone calls. I am astounded that all this time, a pediatric surgeon providing this service has been right down the road! Honestly, my joy at finding him has been a bit tempered with anger at a system that made me find this out on my own after years of telling me that no one was available. So it goes...

Cognitively, she continues to blossom, even with the new medication. She is extremely proud of being a "Super Reader", just like the PBS show we watch while we stretch in the morning. She is bored with working on the phonetic alphabet, and lets me know in no uncertain terms that she would much rather read words. So, I've added her second program book, meaning that we are now working on words from A through M.

Trying to check if she is really "reading" or just recognizing familiar patterns of shapes but not attaching abstract meaning to them, I figured out a test last week. Her word for "F" is "fingers." I showed her the word, but did not say it aloud. I then asked her where these were, and she started moving her fingers. She has done this several times since, although like everything in this journey, it doesn't happen 100% of the time yet. However, it was enough to convince me that she really is reading.

I am finding lately, that when we take things in isolation, out of context, we often miss the overarching theme, and perhaps the most important points. This has been especially hitting me through well-known verses -- you know, the ones we memorize that are a verse or two long because they are so good, and seem so applicable, without knowing what surrounds that particular snippet. The first whack on the head I got in this area was Jeremiah 29:11, "For I know the plans I have for you' declares the Lord, 'plans for welfare and not calamity to give you a future and a hope.'"

Like so many families I know, we have clung to this verse through some very stormy times. But, until my recent in-depth study of Daniel, I don't recall focusing on Jeremiah 29:10, "'For thus says the Lord, 'When seventy years have been fulfilled for Babylon, I will visit you and fulfill my good word to you, to bring you back to this place.'"

The promises in Jer. 29:11 were given to a people in bondage in Babylon, and assured them that their years in exile were carefully numbered by God. He told them that at the end of those ordained years of suffering, He would fulfill His promises and bring them back to the place for which they longed. These specific promises were made over 100 years before the people were carried away to Babylon. Backing up to this verse made me cherish 29:11 even more as we trust God that all of the days of Abbie's journey were divinely numbered long before her birth, each for a specific purpose, and that to us, too, He will fulfill all of His promises as He brings us out.

Knowing that it takes me a while to catch on sometimes, God hit me with this "wait, back up" pattern twice more in the last 12 hours.

"Why do you say, O Jacob,
And why do you complain, O Israel,
'My way is hidden from the Lord,
my cause is disregarded by my God"?
Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and His understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak..."
If you are wading through some deep water, doesn't that just sing to your heart, like it does to mine? Would it surprise you to know that this passage ends with those familiar words, "...but those who hope in the Lord will renew their strength. They will soar on wings as eagles; they will run and not grow weary, they will walk and not be faint" (Isaiah 40:27-29, 31)
One last encouragement for you to "back up" with some of your favorite verses. On the United Nations building in New York City are inscribed these words, "...and they shall beat their swords into plowshares, and their spears into pruninghooks; nation shall not lift up sword against nation, neither shall they learn war any more" Isaiah 2:4(b)
It's really too bad that they didn't inscribe the whole verse, because perhaps there would be a better understanding of why men's attempts to bring about plowshares and pruninghooks fail so miserably. The first part of Isaiah 2:4 reads, "And He shall judge among the nations, and shall rebuke many people." Only the Sovereign Lord, the Judge of unfaltering integrity, wisdom, and knowledge, is capable of bringing the peace we all desire....and only through judgement. A totally politically incorrect idea these days, but missions begun on half of the story (or verse, as it were), relying on man's intellect and tainted motives are doomed before they begin.
OK..there's the Sunday School bell ringing..sorry if I kept you too late. Just know there are many treasures awaiting you, right behind some very familiar ground.

Friday, November 30, 2007

Divine Appointment

So, as I 've related recently, I am taking a fresh look at things to do for Abbie. This new openness isn't restricted to western medicine however, as I continue my investigations into alternatives for Abbie.

Recently a woman in my Bible study gave me an index card with a man's name and website on it. She said that Master Wu is a QiGong master from China and had helped her husband, George, greatly when he injured his back. I was somewhat interested, since QiGong is a form of energetic medicine. My interest level rose markedly however when Mary described what Master Wu had been able to do for the infant daughter of a woman who works for her husband. At about a month old the baby stopped nursing and began to regress. The physicians thought it was a neurological problem, but the baby was too small to sedate for an MRI. George was convinced that Master Wu could help, and although he was in China at the time, Master Wu did work with this family. The baby began to get better, and soon they were able to just wear her out enough to sleep through an MRI. The results surprised the neurologists who said, "Given her symptoms I was convinced she had a bleed in the brain. I can see faint evidence of it, so I know there was one, but I just don't know where it went...this is very strange."

It took me a week to finally email Master Wu's wife Kathy with a brief description of Abbie's situation and a request for an appointment. She called the next day, and we set up an appointment for the following week (today).

I was curious, but didn't yet realize that once again the picture was larger than I initially realized. I mentioned to my small group yesterday evening that I was going to be taking Abbie to a QiGong master. Immediately one couple said, "Are you taking her to see Master Wu?" When I nodded they gasped and said, "How in the world did you get in to see him???" A little surprised I told them it took one email and one phone call. "You don't understand," they said, "in China he is like...." they paused as they searched for an equivalent. "Well, beyond rock star..he can just walk in to the national leaders' offices. He holds healing "concerts" that are sold out a year in advance. He has turned down offers of 1 million dollars to heal cancers because the sufferers were unscrupulous people. It is virtually impossible to get a one on one session with him!"

I quietly grinned as I marveled at how gracious God has been at bringing the "best of the best" into our lives...Dr. Tennant, our Rolfer Sally, and now Master Wu. Ray did question me, however, about the spiritual implications of QiGong, and I assured him that I have studied and prayed greatly on this issue. I look at QiGong as a medical intervention that recognizes the importance of the spirit, but does not apply or imply any concrete spiritual doctrines. However, I prayed last night that if it in any way was counter to God's plan, will, or sovereignty He would slam this door.

We left an hour before the appointment to give us plenty of time to get to an unfamiliar part of Kaneohe (which is on the other side of the island). Once in Kaneohe I realized that the given directions assumed I took one highway, and this morning I had taken a different one. We were way off track, and would not make it in time unless I turned around right away. I turned right immediately, not caring what the street was, only looking to turn around. As I completed my turn I passed a black Tahoe waiting at the light, and recognized one of our best friends -- in that split second he recognized me as well. Watching me turn around in his mirror, he waited at the green light (he's a police officer, so he gets to do things like that:). Once pulled in behind him, I got of the car to tell him where I needed to go. He gave me a hug and said, "Follow me, I'll take you right there."

I smiled at how God had sent me an angel to follow...I don't know many people on the windward side, and what are the chances that one of them is at the corner at 9:30 in the morning, and recognizes me as I pass? Kevin later told me that he'd been delayed over and over again this morning, getting out of the house much later then he'd planned. Following behind my Angel-in-a-Chevy wiped away any doubt that today was a divine appointment.

Master Wu is a gracious, older Chinese man with very limited English and very large, gentle hands. As soon as he put his hand on Abbie's head she began vocalizing, and did not stop for the entire time he touched her during the first phase of the session. Her face flushed, and her body got splotchy. It was hard work for her. She was complaining in such a way that the dogs in the neighborhood began answering, and soon we had quite the chorus of howls, both girl and canine, echoing through the neighborhood. As it became apparent that this may be too much for her, Master Wu had me come put my hands on Abbie and then he put his hands on me. This seemed to help her, and I liked feeling part of the process and knowing that Jesus was too, because I was praying in His name the whole time.

Dayna had been holding Abbie this whole time, and we thought that perhaps putting her back in her wheelchair would be a comfortable transition. She was soon relaxed and enjoying watching the sailboats, helicopters and airplanes visible from the lanai. Master Wu concentrated on her lower left leg, and a red trail appeared. Fascinating. At the end of his work with her, Abbie was focusing so much better with her eyes that Master Wu was chuckling with delight. His kindness was apparent even as we struggled through our language difficulties.

After we were done with Abbie, we spent a few minutes talking with the help of his wife, Kathy. When we arrived Master Wu had said a Chinese word that starts with "f" that he roughly translated to "oxygen" in "long time no oxygen." At the end of the session he used this word again, at first saying "no" but then nodding and saying, "yes, yes, some". I turned to Kathy for insight. She said that Master Wu can sense when there is or is not healing potential. He feels that Abbie has much potential, and that the amount of progress she makes will depend largely on her. You know why I smiled when she said that.

I asked Kathy if they have ever worked with an anoxic brain injury survivor. She said that while they have worked with many stroke victims and people with spinal cord injuries, they have never been able to do a "long course of treatment" with a brain injury survivor. Well, here Abbie goes being first again. We plan on seeing Master Wu once a week to see how this goes.

After the session Abbie looked great, and was comfortable and settled. I came home and took a nap, not awaking until Genevieve had relieved Dayna. Genevieve didn't know about our adventures today, but said, "Oh! This girl is talking, talking, talking today. When we read her books she talks like, 'I already know that one!' And, when I asked her if she wanted to touch her Christmas lights she raised her index finger to do it!'"

That finger thing surprised me so I had Genevieve show me exactly what she meant. Who knows if it has anything to do with our visit to Master Wu, but I do know that Abbie is loads more comfortable tonight. She went with us to a lovely dinner and was content, quite, and engaged for over 2 hours. I believe God allowed us to meet Master Wu at this time, because I am in the right place to receive it. I didn't drive to Kaneohe today hoping he would zap Abbie into walking to the van. I went hoping to bring Abbie some comfort in the process of healing that God is doing in her.

The quest continues, and we go knowing we are attended by angels that our Father sometimes allows us to see.

Tuesday, November 27, 2007

Her Race

I find recently that my humbling process continues, and with it an expanding view of ways to go and things to try. Yesterday we were in the neurologist's office talking about Baclofen. That has been an obscene word around me for the last three years, but it's time to put away my pride and seek what is best for Abbie. As her cognition soars, so does her frustration with her body. As we were loading up to go the appointment Debbie said,
"I just got the wierdest look from Abbie. It was unhappy, but she wasn't complaining or teasing like usual...she just looked at me like 'Get me out of here! I am stuck!'" I, too, have been getting that sense from Abbie lately as well..she is growing more and more aware that she is trapped in her body. This can sometimes lead to a defeating cycle: she becomes frustrated with her body so her tone goes up, which leads to an even greater limitation of her body and more frustration. I am hoping the Baclofen may provide a little relief and serve as something of a bridge during this period of Abbie's recovery. We are going to start her on a low oral dose and see if it can help her relax without oversedating her. My threshhold for calling it "oversedation" will be very low, so I'm not sure we're going to be able to get to a high enough dose to really help her, but it's worth a try.

As I'd suspected, our neuro had very limited experience with the Baclofen pump, and wasn't all that impressed with it. Given the discussions I've had with other families and the research I've done, however, I don't think I'm going to settle for a "no" until we've at least done an intrathecal trial. She is putting calls in to other physicians so we'll see where that goes.

We've been working quite a bit with Abbie's reading program lately, so we've shelved the old flashcards -- the ones that she learned quite quickly this time around. I was curious to see if, after not looking at them for a couple weeks, she would still know the words on the flashcards. She did!

I got an email this morning from an incredible man. He and his family are an inspiration to us on this journey, for they are much farther down the road and to say he has accomplished much would be selling him far short! When you first see Brian you might only think "disabled", but spend any amount of time with him, and some of those letters fade away, until all you can see is "ABLE." He included a video link that recently aired on TV about an important part of his story, and I hope that you will take the time to watch it.

I was emailing Jordan's grandma the other day about how the recovery from brain injury reminds me of a triathalon. Sometimes our kids are deep in a healing phase, which can be difficult on them and hard on our hearts as well. At other times, they are in a learning phase where they are picking up new concepts and doing new things. This is a favorite time because it's exciting, motivating and full of hope. Then, there's the doing phase. Some would call this plateau, but I like to think of it as concreting the gains made in the learning phase. This is where commitment gets tested as you do the same things every day without seeing much improvement on the outside.

The tricky part is, we want our kids to be doing all three events at once. We want them to be healing while they are learning and concreting their gains. That's like telling the Ironman competitors to ride their bikes during the swim phase using a running motion. I believe our kids are being tested to a degree even we cannot understand, so according to God's promises I believe they will come forth as gold. Therefore, I deem this race the Golden Child Triathalon.

Now, there's another reason the Golden Child is more challenging than the Ironman. There are no clear "event change stations", no definitive times where it's time to let up on the healing and get back to learning, and as spectators this really leaves us guessing most of the time. I can only wonder whether Abbie is swimming, riding the bike, or running most days, and some days it seems like we do a little of each within the day which makes it REALLY confusing! The route and finish line are also never clearly established, so we just have to keep going. Thankfully, we have many race volunteers (you!!) to pray us down the road, and much Living Water to quench the thirst generated by such a demanding race.

I live for the day when Abbie, and each of her fellow racers, receive a victory lei and a medal around their necks and their Golden Child Triathalons are completed.

Sunday, November 25, 2007


Even after a grueling, emotional game, Hercules Satele was kind enough to pause and take a photo that will be cherished by our family! Kyle (with tongue out), RJ (#7), Chase (back right), Matt (#1), and their buddies Jared and Zachary Infante. The boys also got to go into the locker room, which was a surprise blessing and profound treat thanks to Jeff Reinebold. Of course, I was limited to second hand reports of that part of the evening, but was told that not only can they really play football, but that the Warriors are a talented bunch of singers!

You can't tell from this picture that Blaze Soares will later barely be able to lift his arm to get his jersey off. What classy guys these Warriors are!!

As you know if you've read Abbie's site more than twice, the Warriors have meant quite a bit to us during this journey. I wanted them to win so badly for them...I wanted this group of young men who have been so bold in sharing their failures and second chances, their faith and their love to experience success together. None of us, no matter how long and loud we scream from the stands, will ever have an inkling of what this year has meant to them. But I do know what it has meant to us.

Why such a long tangent about football? Well, for me it has always been about much more than football, and I recently found out why I feel such a strong bond with this team. For them, it, too, is about much more than football.

Quoting from the last page of the recently-released book "Warrior Football: A Story of Faith, Hope, and Redemption:" [in response to Jeff Reinebold sharing heart-rending personal challenges] "It's in God's hands," June [Jones, head coach] says. He doesn't move right or left, he just stares out the window. "Why did I live through my accident? This isn't about football...I feel God didn't take me because of so many kids who have come to know the Lord through football."

"God is in complete control, and nothing else matters to me anymore," says [George] Lumpkin, in a whisper. "I keep telling people that God has a plan for this football team...God is healing so many people, touching so many lives...each day I'm here, I'm amazed at how much bigger it gets."

As Ellie Reinebold and I stood in the end zone watching the long-anticipated celebration at mid-field I grabbed her and said, "You tell Jeff to tell them 'Thank You' from all of us that are living on a second chance and a prayer. I feel like they won one for all of us!"

Doesn't matter if ESPN commentators state you will lose before each of the last three games. Doesn't matter if doctors say there is no hope. Doesn't matter if the pollsters discount your accomplishments. Doesn't matter if "realists" say she'll never walk.

Our God is a God of second chances, and those whom He calls to these chances He equips to walk them all the way out. He's a God who creates winners in the middle of the Pacific and walkers out of broken bodies....and the thing is, once you've seen Him in the dark and heard His voice whisper over your tears, nothing else seems as imminently possible as that to which He has called you.

Tuesday, November 20, 2007

"Abbie's Healing" Update

In relating all the details of our recent decisions in the last posting, I forgot one important thing! The "Abbie's Healing" tab is now completely updated, thanks to help from Jean Egan. I am not an expert in anything besides Abbie, but I wanted to pass on some of what we have learned in the last year or so. I hope you will visit that section of Abbie's site.

These are challenging days around our house, mostly because we are not having any nights. Abbie is just not sleeping, consequently, neither am I. The hours of 3-5am and 3-5pm have been particularly challenging. In the afternoon she is so uncomfortable that she becomes distraught, and there is not much I can do to calm her. Following a hunch, I measured her voltage during this time of day on Monday. Her overall body voltage was an astounding 48! (Normal is 22 or so). 8 of her 12 meridians were in the the healing range, above 50 millivolts. So, once again this is good stuff with an ugly face. It would be easier if I knew exactly what I was doing, and was certain where this path is leading. But, I don't. I just have to trust and keep moving, praying for Abbie's discomfort to be eased.

When she is so uncomfortable, her tone increases markedly, making it more difficult to work with and care for her. I become so obsessed with improving this area that often little signs of progress can slip right by me. Today, Carol came to give her healing touch at 3:15pm, right in the midst of some real struggling for Abbie. At the end of the hour Abbie was quite a bit calmer, and I asked her to say "Thank you" to Auntie Carol. She immediately vocalized, which I thought was sweet and I complimented her for her good manners. A little while later I asked her if she needed new panties, and she immediately vocalized. The light bulb went the middle of suffering, when she should be distracted and uncommunicative, she is using her voice right on cue...that's a big step!

Back when I was in the Army I used to chuckle at the Special Forces guys who would say, "Plenty of time to sleep when I'm dead". Once again, my old mantra, "Be careful what you laugh at, for you might become it!" I am on the longest patrol I could've imagined, but if all this journey costs me is some sleep, then I am getting the deal of a lifetime. Please, just pray for me not to be cranky with my family (they would appreciate your help in this matter:)

Monday, November 19, 2007

The Hokey Pokey Continues

So much to write about, but let me give you the bottom line up front: we have postponed Abbie's surgery until after the first of the year. We made this decision for many reasons, but I must admit that not at the bottom of the list was the effect it would have on our family during the holiday season. We also had to consider the slim chance of a negative outcome, and whether we wanted memories of that etched on all our Christmases to come. So, there's the Cliff Notes version of of the last two weeks at our house.

For those of you with a little more time to spend with me today, here's the topsy-turvy version...On 11/2 we had a not-so-great appointment at Shriner's. We were not scheduled to see the surgeon that day, but because the previous consent form had expired they sent in the worst possible combination: an arrogant resident and an overambitious medical student. I was shivering in my pants and sweater, but Abbie needed to be unclothed for their exam. The resident looked at me with disbelief after I told him Abbie could understand everything and would communicate by squeezing my hand, and off we went. He didn't talk to her about what he wanted to her to do, so it was not surprising he got no cooperation from the frozen little girl on the table. When I finally jumped in to ask her to give us soft arms, she did. I was so focused on helping him not hurt her arm, that I didn't see the student working on Abbie's ankle at the same time. Golden rule #1 in assessment of a brain injured patient: only work on one part at a time. Guess he hasn't learned that in school yet... Fortunately, from her position at the head of the table, Debbie could see what the student was doing, and as Abbie began to whimper told him, "She's in pain, you need to stop!" That really was only the beginning of the fun, but I don't need to spend your time reciting things that I should forget. I have gotten very spoiled by the wonderful physicians we have, by being taken seriously as a caregiver and partner in Abbie's medical care, and by Abbie being seen as more than "just a case." This day made me realize, through tears and shaking, just how fortunate we are. I also, realized though, that this was just one resident, and is certainly not representative of the care we've received at Shriner's.

The trauma of that day (which required me to treat Abbie's ankle for pain through the weekend) prompted us to follow up on a suggestion that had been given the last time we took Abbie outrigger canoeing. The steersman was Dr. Rob Durkin, a pediatric orthopedic surgeon of all things. He is a great doc, and we consider him a good friend. He mentioned that I should take Abbie to see his new partner, Dr. B., who "everyone calls to consult on the tough neuromuscular cases." Wanting to talk to another surgeon about the recent changes in Abbie and what that might mean for the surgery timeline, we set up an appointment for the following week.

Abbie began to complain as soon as we got on the elevator, and was almost beside herself when we entered the exam room. I told Dr. B. that she was very apprehensive given what had happened the week before. Then, an amazing thing happened...he talked to her until she calmed down, then turned to me and said, "Tell me about Abbie." Kind of a broad question, I didn't know where to start. He asked me to start at the day of the accident. Wow!! So for a good half hour he listened to everything about Abbie from Dr. Tennant to Dr. Becker to Dr. Starr and everything in between. After taking a phone call he returned to say, "You know, meridians and electrical systems in the body are not my area of expertise, but I will agree with you that western medicine does not have all the answers." Double wow!!

We got Abbie up on the table, and she relaxed pretty well for him. She's never as loose as she is at home, although for a doctor's office this was a pretty good performance. But, I got a huge dose of reality. At one point he asked me if her knees bend easily when she's alseep. "Oh, yes!" I enthusiastically answered. "So, that means her heels can touch her bottom?" "What??" I was in shock...that thought never crossed my mind. Then I realized that is what a normal kid can do. I am so used to measuring Abbie's capabilities and progress on her own little scale, I don't even think about "Real Normal" anymore. It's a matter of survival I guess, both for me personally and for the hope that we harbor. If we arose every day and measured Abbie against the "Real Normal" scale, I think we would immediately return to bed and burrow our heads under the covers.

At the end of the exam Dr. B. said, "I hear what you are saying about the recent changes, and if you wanted to put off the surgery for 3 months, I would be fine with that. If you want to put it off 6 months, that would start to bug me. Her femur head is going to deform into more of a triangular shape, and then we are going to try to fit it back into where a ball should be. I am also concerned about losing the joint surface, so that we will end up with bone-on-bone." Ugh. Not what I wanted to hear. But you know what? I will take the difficult truths of a friend any day. This doctor LISTENED, asked lots of questions, he HEARD me, and he saw Abbie for himself. I didn't like what I heard, but I was so grateful to have his input.

I drove home thinking we should just go ahead on 11/21 rather than wait just three months. Ray had been unable to be at that appointment, and planned to talk to Dr. B. early the next week. So, we agreed we would not really discuss it all weekend and wait for that conversation to make a decision. Sometimes you have to take a time-out from the tough stuff.

After they talked, Ray called me to relate to me what Dr. B. had to say. When Ray asked, "You know what the first thing he said was?" My heart hoped to hear, "What a smart little girl, using her switch so well. " or "I can see that she is really changing." Again, reality hit me square as I heard, "Ray, you know that she is very, very spastic." Ugh, another one of those "Real Normal" scale measurements. She is doing so well on the "Abbie scale", that it was disheartening to consider the bigger picture. But again, the words of a friend cut just where we need them.

Dr. B's conversation with Ray sparked a research frenzy on a subject I thought I'd never consider: a Baclofen pump. Baclofen is a medication that relaxes muscles. Abbie was on an oral form of it for a few months after her injury, but it so sedated her that I took her off of it so that we could more fairly assess her cognition. The pump, which is implanted into the abdomen, delivers micro-doses directly to the spinal column, so that the patient gets the relief from the drug without the troublesome side effects of the oral medication. We first talked about this two years ago at Shriner's, but two things kept it from going further. First, the size of the implant -- it looks like a tuna can, only half as high. I could not imagine putting that in little Abbie's body. Secondly, we were told that no one in Hawaii implants them or manages the dosing afterwards. That makes it a little tricky.

I wanted to know what FAMILIES have to say about it, since the professionals don't live with the day-to-day consequences of an implant. I called my dear friend Sue, Luke's mom, who related several stories of families just like ours -- a few years out from the injury who had been adamantly against drugs and implants. Even though some of them had complications after the surgery, all of them agreed it was the best thing they could have done and were very happy with the outcome. I went to the website of the implant manufacturer, Medtronic, where they had a story from a near-drowning family. Scotty was injured at 2 1/2 just like Abbie, and they waited until he was six to do the implant. One of the most poignant things the family said is that now that they are not fighting high muscle tone each day, their whole family's life does not have to revolve around Scotty's injury. I was also greatly impacted by reading what children with spasticity wrote about what it feels like to always have high muscle tone. I've not really deeply considered the pain and discomfort Abbie must be in because of her tone. I also wonder what she could be doing if she wasn't fighting against her body every moment of every day!

That thought has been generated lately by...(this is your reward for reading this far)...Abbie learning to READ!! Last week she correctly identified each of her five flash cards the first time through, even when I tried to trick her. Since then her reading program has arrived, which includes books, audio CDs, and computer programs. She is eating it up!! Her motivation to learn to read is helping her vision, I think, as she now quickly focuses on her books and the computer, and tracking becomes easier all the time. This is truly unbelievable for me, and the most tangible gift of God's grace I've experienced in a long time. My little smarty-pants girl is learning to read, just like a lot of other 6-year-olds.

In talking with her therapists, they also wonder just what she would be capable of if we helped control her tone, since she initiates movement and knows what she wants to do but is inhibited by her tone. Like all things in this journey, there are trade-offs, and implantation brings new concerns about things like scoliosis and overdosing (which could be fatal). But, if I had the option, I would do a trial test of the medicine tomorrow to see if an implant would help. Unfortunately, we are still stuck without anyone to provide this service in Hawaii, and I don't know that this is feasible thing to be flying to the Mainland every three months to manage. Please pray that we could find a solution. Now that I've done my homework, and actually, now that I"ve received some clear guidance, I want Abbie to be comfortable and freer to move.

So, where we're at now is basically "I don't have a clue!!", but I am ever grateful to be holding the hand of One who knows exactly what He's doing. My thought is that if we are going to do the pump we should get that in place before the surgery. Then, we won't have to do the extra tendon release procedures and the recovery could go much better without her muscles always pulling on her hips. But, that is just Mom-Logic, I have no idea how that aligns with Surgeon-Reality. Plus, we would have to pull together a team to support us with the implant surgery and management afterwards. In any case, we've decided that it is worth giving Abbie a little extra time before the hip surgery in light of how rapidly her body is changing.

I have been relishing my family lately, thus the lapse in posts. We've had some more special things these last couple weeks that I will fit into the next update, including a very special visitor. I pray that you have a WONDERFUL time of thanksgiving this week with your families. The weight of my thoughts cannot be carried electronically, but please know how truly, deeply grateful we are for your prayers and companionship.

Tuesday, October 30, 2007

Ballerina Legs

Sometimes, at the end of a post I try to find a scripture that sums up where we are at or what I am feeling. This week, I found the verses before I knew the details of what I was going to write. On Wednesday I read Romans 8:24-25, and as it reverberated within me, anticipation to see how it was going to be animated in our life this week rose in my heart.

"For in hope we have been saved, but hope that is seen is not hope; for why does one hope for what he sees? But if we hope for what we do not see, with perseverance we wait eagerly for it." -- Romans 8:24-25

This was a good reminder to tend the fire of eagerness in my heart that can so often flicker and turn to embers. With Abbie's twice-yearly neurodevelopmental assessment coming up on Friday, I turned my hopeful thoughts toward that appointment, wondering if God was up to something.

At the beginning of the appointment we gave Linda, the neurodevelopmentalist, an update on how consistently we accomplished the program she gave us at the last appointment. As I was filling out this report I found myself repeatedly admitting, "was not able to accomplish due to tone until the last two weeks." I felt bad for having failed to be a good "program mom", but seeing the answers in writing made me realize that something has really changed in the last couple of weeks.

As usual, Linda was much more encouraging than disciplinary, understanding that our challenges were because of Abbie's tone. We talked at length about diet, supplements, activities and then the new treatments we are doing for the hypothyroidism. She was very interested in this, but once we got on the floor to work with Abbie, she became amazed.

Abbie's legs were soft, aligned properly, with good skin temperature even in her toes. When we laid her on her tummy she quickly fell asleep, and Linda said the words I was thinking, "Look at her...she could be any one of your children laying there...she looks absolutely normal." And she did! There was no hypertonicity in her muscles, no over-rotation in her legs, her ankles were soft and flexible...

Abbie did move up one level in two of the six areas of assessment, which surprised me given the limitations we've had. So, that was a blessing but not the thrill of the day. It was seeing Linda's face as she worked with Abbie, hearing her say over and over, "I am so, SO excited" and seeing my observations of Abbie validated by very knowledgeable eyes.

So, we have a new program with some very specific goals and it has been an absolute JOY to begin working with Abbie on it. When you are not struggling against the body it feels more like dancing than fighting -- and I have waited a very long time to dance with my girl!

It's almost hard to fathom the changes because they have happened so quickly. We went to therapy today and she did the best leg-bending ever -- and we weren't even working on her legs! Just to hold her soft little body is an exquisite luxury that might not be fully appreciated by mothers who've never had to hold slabs of steel or chunks of granite.

I was doing my Bible study tonight and was asked what portion of Daniel 5:1-9 struck me most. This selection is about a huge feast being thrown by the king of Babylon the very night that kingdom fell. There was much to choose from, but one word was neon to me..."Suddenly..." (5:5). Even after 3.5 years of this journey, it feels like God has shown up suddenly in our circumstances, and I am breathless with gratitude and anticipation.

Sunday, October 21, 2007

Pure Light, Pure Joy

This Saturday Abbie went for her second excursion on the ocean with Pure Light, the organization that gets special needs people out in outrigger canoes. It was a brilliant day -- much more beautiful than the gray windyness of the first time she went. Kyle, who has paddled before, was able to join the crew in the boat when we took Abbie out. I was able to avoid weeping this time, but just barely! Abbie was so relaxed by the gentle rocking of the waves that she fell asleep for part of the trip.

The ocean literally washed away all the tension, worry, irritation, and just plain "yuk" that was built up inside me...perhaps I should become a mermaid!! We stopped for a while a distance from the shore, just to let Abbie take it all in. Kyle and some of the crew jumped in for a short swim, and I just tried to bottle up the serenity of the sea. As they paddled back, I watched the turquoise water run against the yellow ama and enjoyed the noiseless sound of the boat cutting through the waves.

I cannot say enough to convey the goodness and kindness of the Pure Light volunteers. After we'd gotten Abbie out of the boat, they took RJ, Matthew and our nurse's daughter, Kiana, out for a ride. This was truly a family day! Once we were all on the beach again we were treated to a delicious (or "ono") lunch and fellowship with many new friends.

One paddler came up and said, "Hey! There's Abbie...she's the one!!" He continued, "Her first time coming here was my first time as well. When I turned around to see you crying I thought, "Whoa! What did we do wrong? Why is she upset? But then you said something about you and Abbie being blessed, and I was hooked. It is in my heart now...I wouldn't miss this for anything!" OK, so that broke my "no tears" policy for the day, but it was well worth it!

All the volunteers promise that they get far more out of it than we do, but I just don't know how that is possible. Perhaps we should declare a tie and praise God for how He showers blessings on both the giver and receiver. We are sad that Abbie will miss the next two month because of her surgery, but if you have a special needs family member on Oahu, Pure Light meets every 3rd Saturday, 10am, at Kailua Beach park.

Thursday, October 18, 2007

Our Shrinking Girl

I think Ray was a little envious of Dr. Mark Starr this past weekend. We've never met Dr. Starr, but I spent the whole weekend enthralled with his book, "Type 2 Hypothyroidism". I learned so much, and I am a little hesistant to try to share it for fear that by distilling it down to bite-sized pieces I will not give you an accurate or complete picture. His book is less than $15 and I would encourage you heartily to read it.

It did explain much about Abbie however, particularly the fact that she was hypothyroidic before she was ever injured. Much differently than Type I hypothyroidism, Type II occurs not at the thyroid gland necessarily but in the mitochondria (energy factories) of each cell, and is most often passed down through maternal lines. As I learned about how this condition presents itself I could clearly trace the route it had taken from my grandmother, to my mother, through me to Abbie.

We have begun to see some of the hoped-for early effects of starting Abbie on Armour Thyroid and iodine. Her face has begun to thin out, as have her lips. She is losing bulk around her thighs, and today the nurse asked if she'd lost weight because it has become much easier to get her on-the-verge-of-being-outgrown size 6 diapers on her. As the mucin that has infiltrated her connective tissues starts to leave her body, I think we will see a new "lean, mean Abbie machine." Another fantastic effect of the reduction of mucin has been much better breathing. It is not uncommon now for Abbie to be satting 100 on her own, even while on her tummy or asleep. That hasn't happened in over a year. Her muscle tone continues to improve, and she is doing her neurodevelopmental exercises better than she has in a very long time.

Today we got some new foot orthotics at Shriner's. While being fit for the right foot, Abbie did not like a certain way the orthotist moved her foot. She let us know loudly, with expression and first with crying then with a vocalizations -- she really let us have it. Newt has been making "shoes" for Abbie since right after her injury, and was very impressed with how much she has changed lately, both in communication and muscle tone. I love hearing people say that!

Right now I am studying the book of Daniel, and having been gaining SO much from each minute I spend there. There's so much I want to write, but I don't want to babble or overwhelm. Let me just share one point that flashed like a billboard for me today. In the story of the fiery furnace, Shadrach, Meshach and Abednego leave their fourth, divine companion in the blaze to emerge unburnished. I have known that story since preschool, but read with fresh eyes today that they did not even smell like smoke after their ordeal. Beth Moore (yes, her again...I bet that Houston girl doesn't even know she has a part-time residence in Hawaii!) drew the parallel to the fires we have to walk through by saying that we do not have to, in fact we should not, have a smoky aroma lingering upon us afterward. By the promises given in Isaiah 43:1-3, no one should even have the slightest hint that we've walked (or stumbled or crawled) through the flames. So that is how I am checking my spirit, my countenance, my I wearing "Eau de Smoke" to let the world know of my light and temporary suffering, or do I smell fresh and new to let them know of my powerful, eternal God?

"But now, thus says the Lord, your creator, O Jacob,
And He who formed you, O Israel,
'Do not fear, for I have redeemed you,
I have called you by name; you are Mine!

When you pass through the waters, I will be with you;
And through the rivers, they will not overflow you
When you walk through the fire you will not be scorched,
Nor will the flames burn you.

For I am the Lord your God,
The Holy One of Israel, your Savior.."

--Isaiah 43:1-3a

Thursday, October 11, 2007

An Official Warrior

Last Saturday the UH Warriors were in town, and as usual our family headed for Aloha Stadium...but this time Abbie was WITH us!! Kyle going to a birthday party left us with an extra ticket, so it was an easy decision about who should get it. All day I prayed for the weather to be good, and must admit I worried a little as Abbie and I sat in the van during tailgating to avoid the fat drops of rain.

Fortunately, the handicap seats just a few rows above our normal seats were open, so Abbie and I set up camp there. As I watched sheets of rain dance aross the field, I was surprised we weren't getting wet. I looked up to realize that the wind was blowing in just the right direction for the stadium to protect Abbie and I...actually it felt like God's hand, not a steel mammoth, but nonetheless, we stayed dry.

I kept trying to turn her head to watch the action on the field, but during the first quarter she was pretty much glued to the end zone. I thought perhaps, with all the commotion around us, she was just checking out. Think again, Silly Mommy! On the other side of the end zone were the Rainbow Dancers, with their choreographed moves and shiny pom poms...what little girl cares about sweaty boys when there is dancing to be watched??

This little girl who was just getting over a cold did not have to be suctioned, nor did she cough even once the whole time we were there. She was as content as she could be, even when it looked like she was inside a pup-tent made of yellow ponchos. As I sat there holding her hand I recalled what an oasis UH football games had been the year Abbie got hurt...our one escape from a brutal reality. Now, with her by me, I knew that I no longer needed an oasis because our reality is no longer brutal. What a joy it was to have my girl with me!!

At one point a woman named Michelle came up to say "She is just SO beautiful!!" I did admit my bias before I heartily agreed. We talked for a bit, then she continued out to get snacks. Upon her return she came up and thrust cash into my hand saying she wanted to help with Abbie's care expenses. I tried mightily to refuse, but then allowed the blessing to flow from her hand right into Abbie's, who was thrilled to hold "paper money!!" It overwhelms me when strangers pour love out so freely.

As for all the new things we have recently added..they do seem to be making a difference. One place that the myxedema, (swelling caused by excess mucin) affects is the lungs, one source called it "decreased pulmonary vitality." Now that Abbie has been on iodine and Armour thyroid for 8 days we are noting great changes in this area. Slowly, almost imperceptibly, over the last year Abbie has required more oxygen support. She used to never need it, then only when she was sick, then sometimes at night, to now needing it at some point almost every night. With the thyroid things on board she has been satting so well, even at night, which makes for better sleep for all of us. Her face has begun to slim down a little bit, as has her lower lip. I've decided that it droops over not only as a result of poor muscle tone, but also because it is just so big and heavy. As it has gotten smaller and able to stand up more, drooling has decreased significantly. She is not having any seizure/muscle spasm movements to her right any more. This matches what the family of another near-drowning survivor who recently started Tremal is seeing. I FINALLY got the book on Type 2 Hypothyroidism today after a month-long Amazon drama. I read portions of it during tonight's UH game to dilute the pain when they were struggling. I have learned so much already that I look forward to sharing in the near future.

As we tucked Abbie into bed the night of the football game, RJ asked if he could sleep with her. She indicated a vigorous "yes" before all the words were even out of his mouth. They fell asleep shoulder to shoulder, and even with her eyes peacefully closed she seemed to be smiling about the wonderful evening we had all shared....and she wasn't the only one.

Sunday, September 30, 2007

Open Floodgates

A deluge of knowledge, information, and spiritual insight has been swirling through my brain and soul these last two weeks. It's difficult to know how to even communicate just the highlights. Most importantly, Abbie is doing well, as you can see in this recent photo taken by her nurse, Dayna.

The last update I wrote described the emotionally-taxing decision to postpone her surgery. As we came to that conclusion, I knew deep down that we would see blessings in the waiting time. They have already begun to arrive. I apologize in advance for some parts below that may seem too verbose, but I am truly writing this update for other brain injury families.

I have been communicating very regularly with Dr. Tennant regarding a plethora of new things he has learned in the past few months. If I've been flooded of late, he is covered under epic depths of new information! I've written somewhat about getting aggressive in dealing with the fungus in Abbie's body, and am working madly to get an update to the "Abbie's Healing" portion of her site completed. However, we have added several more new things since mid-September.

At the beginning of our journey into energetic medicine I read a terrific book call "The Body Electric" by Robert O. Becker, MD. His book outlines the electrical systems in the body and the critical role they play in healing and regeneration. Unfortunately, Dr. Becker is now declining into Alzeihmer's. When he was having a lucid day last year he and Dr. Tennant had a long phone conversation about Dr. Becker's current research, what Dr. Tennant is pursuing, and their mutual interests. Some time after that conversation, Dr. Becker's wife sent Dr. Tennant all of Dr. Becker's unfinished research, most of which revolves around the use of true colloidal silver as a means to dramatically increase stem cell production.

I say "true" colloidal silver, because what is usually available in health food stores as colloidal silver is actually in ionic form. We have found a source that produces high quality true colloidal silver, Deseret Biologicals, (, however they only sell their product, "Smart Silver", to licensed medical practitioners, so most people can't buy directly from them. Abbie is getting 2 teaspoons of 10ppm solution each day. This is not a "quick fix" type thing, but I am curious to see what it can do for her not only in terms of healing her initial injury but also in keeping her healthy in the meantime. There is some very interesting congressional testimony at the above website regarding what Smart Silver was able to do for malaria patients in Africa.

As interesting as the silver was, a breakthrough of much larger proportions was quick on its heels. Dr. Tennant recently met a physician, Dr. Mark Starr, who has written a book describing his hypothesis that like diabetes, there are two types of hypothyroidism. The first type shows up on blood tests, but the second type does not. In the last hormone panel we did, Abbie's TSH was very elevated, while her T4 was normal, which was an indicator that something was not right. Additional clues are her consistently low basal body temp. (96.0-97.0), cold intolerance, "myxedema", which is non-pitting swelling that is very apparent on her hands, feet, and even her cute, chubby face now that I know what I am looking at.

Please go to to see some stunning before and after pictures of patients who were treated for this condition. These pictures are old because mainstream medicine stopped treating Type 2 once lab tests for TSH became available. You can give Type 2 sufferers all the thyroid hormone you want and it won't fix the problem because it's not the absence of T4 that's the problem, it's actually an iodine deficiency that is often at the root.

So, we have started Abbie on an iodine supplement called "Iodoral", and early this week we will be starting her on a natural thyroid supplement called Armour Thyroid, which is made of dried pigs' thyroids. (Gross, I know...but I will do whatever makes Abbie better!) This approach could yield results in a very quick fashion if Abbie follows the path Dr. Tennant is observing in his other patients. I am THRILLED to think about this possibility, because many of the complications of Type 2 seem like a portrait of a brain injury survivor. In addition to the ones mentioned above, they include: anemia, dysarthria (difficulty moving jaw, tongue), thickened tongue, mental fog, slow relaxation phase for muscles, gait abnormalities, and altered Achilles tendon reflexes. While these challenges for Abbie were caused by the initial insult to her brain, I don't think we can expect her to recover if she has another condition producing the same symptoms!

Additionally, the thyroid is becoming more apparent as the voltage regulator in the body. This may explain why Abbie experiences such dramatic swings in her voltage, from very high healing range, to much below normal. Her regulator is faulty right now, so her body is acting just like any other electrical device with an inefficient regulator, and is just about as functional. We have had Abbie on DHEA cream since her hormone panel came back, but Dr. Tennant is finding that he cannot fix hormone levels with bio-identical hormones if he does not fix the thyroid. So, we will simply keep her on pregnenolone, since it is the precursor, and proceed with her thyroid therapy. I am hopeful that if we can get her thyroid fixed, many good things will follow. Just an aside, back when mainstream medicine used to treat Type 2, high cholesterol was one of the key indicators...if your interest is piqued, order Dr. Starr's book (around $15 at his site).

The day we were in the midst of the surgery drama, I was a basket case. Dr. Tennant called with news that gave me a boost out of the pit. He was on his way back from the office of a Dr. Danhoff, an MD/PhD who had been his physiology professor in medical school. They had not seen each other in years, and in the interim, Dr. Danhoff had begun working with a very concentrated form of Aloe. He treated hospice patients in Florida with it intravenously, and cured 90 out of 100 of them. Yep -- 90% of hospice patients got better. Perhaps because there was a none-too-happy chemotherapy research site just up the road, the FDA raided Dr. Danhoff's clinic, and effectively shut him down. Two years later the court ruled that the FDA was way out of bounds, and Dr. Danhoff had done nothing wrong, but you can't just start a clinic back up after two years. So, he found his way back to Dallas, and thankfully, back into Dr. Tennant's orbit. Recently a man who was experiencing 1000 tics per day was treated with an oral form, and in 6 days the tics ceased. A Parkinsonian patient treated intravenously had temors that had persisted for 15 years stop on the third day of treatment. They think that the product, which is called "Tremal" on the bottles we have, does something in the way of remyelination. But, honestly, I'm a mom, and I don't care so much about the mechanics as the outcomes!

The second day we had Abbie on Tremal she turned her head quickly to the right to look at her nurse and I. This particular movement will often throw her into a seizure/muscle spasm motion for a few seconds where her head will pulse repetitively to the right. This time there was none of that. I just stood in surprised silence, while her nurse, who didn't know about the Tremal, said, "Hey --- no extra moving!! That's great!!" Great, indeed!

So, we have much to keep track of and much reason for heightened observance and anticipation. We also have a couple more new things in the pipeline, but I'll wait until I know more before I write about them.

To get me ready for all of this, God took me away to be alone with Him, and alone together with some wonderful women. 14-16 September my dear sister, Katie Cheshire, (it's official -- we adopted each other) and I, along with sweet baby Iliana flew to the Big Island to attend a women's conference centered around a video series by my best girl, Beth Moore.

We stayed at Kalopa State Park, at 2000 feet elevation this rainy, lush spot reminded me of the Northwest, only warmer. I was blessed to have time alone, running on trails in the woods, and wandering around the grounds with my camera. I met a woman who is twice the mother I am, literally. Jessica is the mother of 11, including two sets of twins!! And, walking in to this remote place on the Big Island, I didn't expect to know any of the other 32 women besides Katie. Then, Lisa and Ellie Thatcher came up and told me they have been praying for Abbie for three years. I was stunned at how God weaves us together long before we know it!

The theme of the conference was "Loving Well", with the bottom line being that in and of ourselves we cannot do this. As always, Beth taught with a passion and clarity that ignited my spirit, and reassured me that just as I cannot love well on my own, neither am I Abbie's healer. There is only One with that job description, and I only have to follow His lead.

At the conference we were broken into small groups of 6 women each. Honestly, as we got our group assignments I was a little disappointed because there were women in other groups who I really wanted to get to know better. But, I realized God must have a purpose for placing me in a particular group. Boy! Did He ever! Out of the other 5 women, 2 had lost daughters in car accidents. One was part of a set of triplets, and died at 13, while the other was an only child who died at 8. What are the chances of that?? No other mother at the conference had lost a child besides the two in my group...what a privelege for me to harvest the wisdom they have gained from walking a narrow, difficult path. And, honestly, to remember how blessed I am that we still have Abbie...just to brush her hair, see her smile, and think about still having future with her in it!

I was relieved to be able to enjoy the weekend without Abbie's surgery looming so near. We have rescheduled it for November 21st -- the day before Thanksgiving. I am assuming it is because we will have so very much to be thankful for this year after she sails through the surgery.

Thank you for your patience during the lapses in updates. Don't ever worry that something is wrong. No news is good news, it just means that I am too busy actually being Abbie's and the boys' mom to write about it.

I hope that all the new things we've added recently will require more frequent updates as I share exciting news. Please pray for wisdom as we put these new things into place. Please also pray for Abbie's health. She is at the tail end of a cold that her Daddy and brothers graciously shared with her, but she just can't quite kick it completely. My heart is full, and I end this with a big smile on my face!

Thursday, September 13, 2007

A Hellish Hokey Pokey

We had one foot in , then one foot out, one foot in , and now both feet out...of the OR that is. This afternoon, after an emotionally draining, straining, nearly-shattering two days, Ray and I decided to agree to postpone Abbie's surgery.

As I posted Monday, we left Shriner's feeling good about the plan and ready to move ahead. We thought all was set. Apparently we were the only ones feeling that way. The team met through the day on Tuesday to discuss Abbie's case, and by the end of that day were not comfortable with proceeding for numerous reasons. The surgeon called us in the late afternoon to tell us the surgery was off. This took me by complete surprise, and my gears couldn't move fast enough to mentally take in such a huge shift in plans. I spoke to Ray on his way home, which precipitated his call to the surgeon. So, by the time Ray arrived, we were back to the "thinking some more about" just doing it on the 18th.

That night, once again in the thick of things was Abbie's boldest advocate, her pediatrician. She was on the phone with various folks until 11:30 last night. For those who may not know the details of the beginning of Abbie's journey, she would not be alive were it not for Dr L. intervening on her behalf when I was too overwhelmed with grief and shock to do so myself. In the years since, we've resumed our more routine relationship, but leading up to this surgery I've seen her angel wings poking out from under that white coat again.

By this morning, the surgery was back on, much to our relief. As Ray explained to the team, it has taken two years for us (or actually, me) to get to the point of being able to sign the consent forms for this surgery. Having it postponed at the last minute was mentally shattering, and I worried that I would not be able to psyche myself up again.

The phone calls continued through the morning, until I just thought, "We need some PEACE around here." So, I told Abbie we were going to "read our verses" for the day from Psalms. Since it's the 12th, we started there. When I got to verse 5 things got interesting. As I read, "Because of the devastation of the afflicted..." Abbie jumped in bed and looked right at, "This is for me!" I continued, "...because of the groaning of the needy (that part was for me:), Now I will arise," says the LORD, "and I will set him in the safety for which he longs."

The echo of Psalm 4:8, about lying down and sleeping in safety reverberated, and I knew this was a reminder of the words Abbie spoke the morning of her injury, "Jesus keeps me safe. Jesus keeps me safe!" All was well, and in my now-relaxed and calmed state, I started to wonder if perhaps we shouldn't just agree with the team and postpone. Their nervousness was starting to rub off on me, and there is no emergent reason to go into this surgery without everyone feeling absolutely comfortable and confident.

Then the phone rang again. Ray said, "I am going to ask you a question." That is husband-code for "I am going to ask you something that is either going to make you mad or with which you will violently disagree." Being a good decoder, I braced to be maddened, and then heard, "Do you think we should just postpone this?" I smiled at how God had worked in our hearts at the same time. So, at the end of all the drama it was actually an easy decision that flowed from a unity of our what is best for Abbie, and if that means later, so be it.

Abbie gave me big grins when I told her that we actually won't be going to the hospital next week. Like me, I know she is ready but not excited about doing this. But, the prayer list remains the we just have more time to pray!! We will hopefully have the new date by the end of this week. Until then, thank you so much for the encouragement that has been flooding in from all directions. This has been a very trying time, and your emails, phone calls, and prayers have buoyed us through some very rough waters!

Monday, September 10, 2007

Many Answered Questions

We had four well-spent hours at Shriner's this morning, as we met with their pediatrician, a nurse practitioner, the surgeon, the anesthesiologist, dietitians, and care coordinators. I wrote an entire page of questions last night so that I wouldn't forget one in the midst of emotion and detail today. After about half an hour the surgeon had answered all of them except one...where the surgery will be done. When I broached this questioned, he just looked at us squarely and simply said, "We're doing it at Kap." Oh, OK...end of discussion. But, we still wanted to know what brought him to that conclusion.

Abbie will be recovering in the PICU after coming out of surgery, so he feels that it just makes sense to do the surgery in the same place. We agree, although the decision to do the surgery at Kapiolani in no way reflects poorly on Shriner's, for whom we have great respect and trust. After receiving many answers, and now better knowing what to expect when we see Abbie for the first time, I am grateful that we are going to the PICU. She will have a few lines in, and most likely a central line in her neck. She will probably remain on a ventilator through the first night. She will also be in a cast extending from the bottom of her ribs to her toes. I will be glad to be surrounded by a critical care staff that we know (and love). Caring for a sick child on a normal pediatric floor is very demanding for the parent, and I was unsure I would be able to stay on top of her pain during the first few days. The anesthesiologist had some very good ideas about this.

Just prior to the surgery Abbie will receive an epidural, which she will keep for a couple days. This will allow us to aggressively control her pain without drugging her into a stupor. As I'd suspected, the first 3-5 days are going to be very tough, pain-wise. I'll be writing a gargantuan prayer list at the end of this update, and pain control will be very high on it.

I've been asked several times, "What exactly is going to be done?" Well, here's the medicalese version: bilateral proximal femoral varus derotational osteotomies, right pelvic acetabuloplasty. Here's the mom-translation: a surgery on both sides, removing a 1" portion of each femur, turning the head of the femur into the proper rotation and reinserting into the hip socket, then securing it with a metal blade and using screws to connect each end of the femur at the cuts. On the right side they have to do some reconstruction of the acetabulum, using the bony material removed from each leg. This is the most complex part of the procedure, and will necessitate a second incision on the right side. I wanted to know where the incisions would be...from the "bump at the top of the leg" to about halfway to her knee on each side, and then from the middle of her groin, around the top of her hip bone to her back...that's about when I stop asking those kind of questions!

We're now very aware of the risks, complications, and potential challenges during recovery and beyond. We are realistic on one hand, but also very optimistic. After all, this is Abbie we are talking about. She was on her game today! She answered many of the pediatrician's questions herself, using her switch, and even laughed when the surgeon was checking her belly. When the blood pressure cuff went on, she immediately looked right at it and scowled. I asked the surgeon what the critical factors for success were, and the only one that was really key to him was the health of the child going into the surgery. In his experience that is the major differentiator. Our girl is healthy as a horse, so that gave me a boost of confidence.

So, we are scheduled for next Tuesday, 9/18, at 1130. Abbie will probably be in the OR about 6 hours, so by the time we are settled in the PICU it will be late in the evening Hawaii time, and way after bedtime for everyone else. But, I will do my best to post timely updates and fresh prayer requests.

Speaking of prayer, here is the monster list:

1. Complete success with a perfect outcome; wisdom, skill, and an "in the zone day" for the surgery team.

2. Effective pain control, and a quick diminishing of pain as the days pass

3. Minimal blood loss (100cc expected) so that Abbie doesn't need a transfusion.

4. No infections!

5. Quick recovery from the anesthesia with no complications.

6. Protection of her respiratory system; no events during surgery or recovery.

7. Rapid return of stomach and gut function so she can tolerate her normal diet.

8. No nerve damage. On the right side, her sciatic nerve will very much be "in the neighborhood" as they reconstruct her hip socket.

9. For necessary equipment and nursing staff to be in place for discharge.

10. For grace, peace, assurance and hope.

As I sat down to write this tonight, Ray's email account was open, and seeing a name we are fond of I asked if I could open the message. Again the tears flowed as I read, and I want to share this with you:

This is Mia Letterie from Seattle. I have been thinking about Abby day and night. I have been praying for Abby as well as keeping up with Tiffany's constant postings on I hope that her surgery goes well. Here I have attached a story that I have been meaning to send to you. In class last year we were asked to pick a hero. My first question was is it ok if our hero is younger than us. My teacher replied yes. The minute he said yes I knew who I was going to write about: Abby. So here is my final copy of the story. I have gotten everything from the website. I hope it is close to right and I hope that you enjoy reading it!

Well, Mia - your story was spot-on, especially the part about Abbie being a fighter. We loved it, and one day Abbie will read it for herself!! And you know what? My hero is younger than me, too!

Saturday, September 08, 2007

The White Line

The relaxation of a wonderful Labor Day spent on the beach at Sherwood Forest was consumed like dry tinder in the days that followed. On Tuesday we had Abbie's pre-op appointment with her pediatrician. She is good and healthy, but her doctor raised some concerns about where the procedure will actually be done. Shriner's Hospital, where it is scheduled to be performed, is right across the street from Kapiolani, where Abbie has received all of her other care. It is likely that she will be recovering, at least immediately, in the PICU at Kapiolani, since Shriner's doesn't have intensive care patient settings. Dr. L. wondered why we didn't just have the surgery done at Kapiolani, in case of a "bad event" during the surgery. We honestly hadn't considered this before because we have a lot of faith in the folks at Shiner's, and we have our minds and hearts set that Abbie is going to fly through this, without a "bad event" in sight.

Wednesday morning brought a flurry of phone calls between me, Ray, and Shriner's, all focused on planning for a worst case scenario. Spending that much time thinking about a heartbreaking outcome put me into a pea-soup fog. I didn't realize how non-functional I was until I missed a long-awaited meeting with a friend, and was stumbling through the rest of my day grasping, weeping, and recollecting myself.
As we've done so many times during this journey, we talked out our fears and prayed through them with our small group that evening.

We fully anticipated the surgeon would not support moving the surgery, but did not hear anything from him on Thursday. What did Tom Petty say about the waiting? He is right, it's the hardest part. I was still socked in, but at least I'd turned my headlights on. As I did so, a curious thing began to happen -- bits of encouragement began arriving from unexpected places, weaving together to form a line I could follow through the fog.

On Thursday I received the itinerary for a women's retreat I will be attending next weekend. The coordinator included postcards with a Scripture verse, a different one for each woman. She said she'd assigned them randomly, and just wanted us to meditate on them until next weekend when we could share what meaning they had for us. My card said, "Psalms 4:8" Like a treasure hunter, I opened my Bible with expectation. Not to be disappointed, I read, "In peace I will both lie down and sleep, For Thou alone, O Lord, dost make me to dwell in safety." I just grinned, because one of the first things to go during times of heightened stress is my sleep.

On Friday I took Kyle to the pediatrician for a physical. Ray met me there with yet another birthday present for Abbie (a Hello Kitty backpack, and makeup kit which she LOVED!). He also pulled out a card addressed to us. The front read, "We don't always know what the plan is, but we always know there's a plan", while the inside said, "Relax and know that God's got it all worked out." At the bottom was Luke 1:37, "Nothing is impossible with God." Passengers disembarking the elevators must've thought it strange to see a woman choking up in the hallway, but Kelle, you will never know how profoundly you impacted spoke God's words into my life, and His love into my heart!

We still hadn't heard from the surgeon by late Friday afternoon, so Ray called him. It turns out that he isn't absolutely opposed to doing the surgery at Kapiolani, since Abbie will probably go there to recover after the surgery. But, since it is such a major procedure, it requires a lot of equipment, which they have in place at Shriner's. The staff at Shriner's is also very adept at supporting him during the surgery because they do it all the time. So, it comes down to a balance of comforts. Will we be more comfortable at Kapiolani where we know all the staff and she can have the same anesthesiologist she's always had, with the intensive care resources in the same building, yet have a surgeon working in a place where he is not quite as comfortable, with a staff not quite as used to doing this procedure? Or, will we be more at ease at at Shriner's, with a new anesthesiologist, and the emergent and intensive care resources across the street, but with the surgeon working in "his backyard.?" We honestly don't know the answer to that tonight, and will talk it out at Abbie's pre-op appointment on Monday. Please pray for wisdom for us in this matter, it is a big decision. We've gotten used to our fairly stable life that has been devoid of decisions of this magnitude for quite some time. Truly, we really could use your prayers right now!

Today brought a huge highlight for me. Kapiolani was having the last day of a radiothon at John Domini's, a beautiful restaurant filled with views of water, waves, and Diamond Head. We arrived just a wee bit late, and were seated at a table with Jerry Coffee and Susan Page. For the benefit of those who may not be aware of his story, Jerry was a Navy Commander when he was shot down over Vietnam. He spent the next 7 years as a POW, often in solitary confinement. I read about his ordeal as a teenager, and it made a lasting impression that I often called to mind as I later served as a military officer myself. We made small talk for a while, and then just enjoyed the show. As I looked at him, framed by stunning scenery, sitting next to his beautiful wife, I thought, "There IS life after the storm, and it can be radiant!"

Finally, Susan asked about Abbie, wondering why she was in a wheelchair and being fed through a tube. As we shared the beginning of her story it reaffirmed in me just how far she has come. Susan told her, "You are already a miracle girl!" Amen to that!
As we stood to go, Jerry's time as a POW came up; I told him I read about it as a youth, and that really, as I thought about it, POW life is about the only thing I can compare this journey to..I am not in control of it; I do not have a rewind button to change it nor a fast-forward button to hurry it, I do not know when it is going to change or end...and I wouldn't give it back if I could. As Jerry said, "I wouldn't pay a dime to do it again, but I wouldn't give it back for a million dollars." He also said one other thing that is going to stick with me. Each day, at the end of the day, no matter what kind of day it had been (and I know his "bad" days were much more brutal than mine), he would just think, "I am one day closer." Never any doubt, just faith. One day closer.

Jerry Coffee has long been one of my heroes, and I believe God allowed our paths to cross today to bring that thin white line into fluorescent brilliance. Like a driver on a foggy night, I need only follow that line to reach our destination. Abbie continues to improve each day. The hyperbaric treatments are a blessing, and are helping with varied things like her vision and her muscle tone. Lacking a driver's license, she is already much better than I at following that white line through the fog. She is unshakable, moving ever forward toward being whole again. She humbles me as each day I watch her move one day closer. Never any doubt, just faith. One day closer.

"At some time or another we all get shot down, we are all POWs, "prisoners of woe." Be tough. Bounce back. Learn not just to survive, but to go beyond our survival: finding the purpose in our adversity." -- Captain Gerald Coffee