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.