Wednesday, April 30, 2008

Need Your Prayers!

After all these years of asking for prayers to help Abbie move her body, I am coming to you tonight to ask you to join us in praying that she will hold very, very still. On Thursday morning we are going to do the brain imaging, and we are going to do it without sedating her.

I had a nice conversation with the radiologist this afternoon, who started by saying, "I see you've been doing some reading..a LOT of reading!" I guess it's a little wierd for a mom to be asking about a brain imaging technique that they are not yet using as a clinical tool, it is limited to research at this point. I suppose that is my reward for reading "Scientific American" instead of "People" on the airplane.

The doctor said the Diffusion Tensor Imaging (DTI) will take about 8 minutes, and that it is very, very loud. This shoots down Plan A, which was to wear Abbie out and hope she slept through it. We are also hoping to do a follow-on MRI, which would take another 25 minutes or so. I am fervently praying we can accomplish this so that we can get some good, clear images.

"I'm not sure what we'll do with these images at this point," was one comment the doctor made. I didn't voice my ultimate goal. To me, these are a marker, a beginning point. I am hoping that a year or two down the road we can do another set, and that they will give radiological proof that a brain can regenerate, even many years after injury. I pray, pray, pray that one day Abbie's story will be in Scientific American in the midst of an article about "New Views on Brain Injury Recovery." Wouldn't that be awesome?

She continues to show us every day, without pictures, that her brain is indeed healing. Late last week Genevieve and I were working with her on the massage table. If we would hold her wrists to help support the weight of her arms, she would raise them all the way over her head by herself. She was grinning, while we were in tears. This new move speaks to improvements in her tone, range of motion, independent movement, and trust in her body.

The vog has been keeping us indoors more lately. (For folks not in Hawaii, that's not a typo, "vog" looks like fog, or actually smog, and is produced by the Kilauea volcano on the Big Island, which has been very active lately). When it got really bad late last week, it made Abbie sick for a couple of days. That's another prayer request...pray for those tradewinds to blow!

We are creeping up to May 3rd yet again. And, yet again I am approaching it the same way I always have, as if the day is going to slip by and it won't seem different from any other day. It hasn't really worked out that way in the past, but I am hoping, given how things are going, that this will be the year of victory over grief on that day.

I wrote to my dear friend Sue (Luke's mom) tonight that we are approaching our "graduation day." We have just about completed our four years of undergraduate work in independent studies, with a focus on nursing, physical/occupation/speech therapy, anatomy, physiology, and integrative medicine...with a minor in stubborn faith and irrational hope. I have noticed that the upper level classes of the past year or so have been more challenging, and the book work and research is certainly more intense...but, I also feel the gratification of having overcome, having persevered, and having grown immensely. Not for free, no scholarships granted, and I certainly didn't apply for this program, but an education for which I am profoundly thankful.

Bless you all for going on this ride with's to exciting days ahead! To God be the glory!!

Monday, April 21, 2008

Before You Call, I Will Answer

This weekend was a huge treat for our family. Ray's company had a retreat for their board members, physician leaders and managment leaders at Ihilani, a beautiful resort on the leeward coast.

My highest hopes were for two consecutive nights of sleep in a bed! (Usually I sleep on a futon on the floor next to Abbie's bed.) Well, I did enjoy the comfy king bed, lots of pillows, and QUIET. But, God had much, MUCH more in store for me.

Last month, while flying to Chicago, I read an article about a new brain imaging technique called Diffusion Tensor Imaging (DTI). The unique thing about DTI is that it produces images of the white matter of the brain, which have never been available before. In reading the article I was sure that only top-flight research centers would have this technology.

I did not know that Ray's company has a joint venture with an imaging company, whose owner was at the retreat to give some presentations. I missed those, but was fortunate to run into him at the pool. I asked him if he'd heard of DTI, and if anyone in Hawaii was doing it. He grinned and said, "We just started using it for a large study that the University is doing. Call me next week and we'll run Abbie through."

Just like that.

All I'd wanted to know is if anyone had it, and now we are going to be able to do it very soon with Abbie! We will be able to see exactly where her areas of injury are in the white matter, but even more intriguing to me, DTI can perform "tractography" within white matter, which means it can follow one fiber its entire length. This will let us see which parts of Abbie's brain are connected. The picture below is a tractographic study.

Also attending the conference was a pediatric neurologist I've heard great things about. I felt as if I were stalking him the entire weekend, but finally got a few minutes to talk with him today. In that brief time he introducing an entirely new idea about Abbie.

He's found that with the CP kids he treats, often, putting them on anti-spasticity drugs reveals an additional challenge they are facing, dystonia. He defined this as when both oppositional muscles fire at the same time, instead of one contracting and one loosening to let the body move. So, instead of fluid movement produced by teamwork, the body is locked as the muscles fight each other. I had never, ever considered that Abbie may be dealing this. He said there are medications that are effective in helping this, so more time at PubMed is in my immediate future. (For my fellow Brain Geeks, the drug he likes is an anticholinergic called Artane.)

When speaking to the group today, Ray said that the weekend was successful if we all laughed a little, cried a little, and learned a little. Watching a DVD of a little boy laughing after his cochlear implants were turned on for the first time brought tears and laughter simultaneously. A widow sharing the story of her critically-ill husband wanting to die in the sunshine, and the staff finding a way to allow that to happen reminded me that our most profound legacies may come through what initially looks like defeat. The hospital is now designing a healing garden in his honor, that will allow so many more patients to feel the sun on their skin when they need it the most.

On Friday I was excited to spend time with my husband, getting a glimpse of his world. On Sunday I am typing this overwhelmed at the veracity of God's Word and His faithfulness to it. With so many things lately, we are receiving more than we ever could have thought or known to pray for.

"Before they call, I will answer, while they are still speaking, I will hear." -- Isaiah 65:24

Wednesday, April 16, 2008

New Feats

We are having fun now, watching Abbie do new things quite often...things that in many cases we have been waiting years to see.
Last week I was talking with Abbie, and she began talking right back to me. Not so unusual, but pretty soon I realized she was trying to say the same things I was. So, I began practicing with her. I would say a word a couple of times and then say "your turn". Pretty soon Abbie would attempt to say the word. The articulation wasn't clear, but her intent sure was. When I would correct her on the syllables in each word, as in "there are two syllables in 'hungry'", she would answer back with two syllables.

The other day I had her on her tummy on the massage table. She had held her chest and head up for quite a while, after I placed her in that position. Then, she slid her arms out to the side in very controlled manner so she could lay her head down. I was happy with that, but what happened next made me literally jump for joy. She pulled her arms back in and raised her head and chest off the table by herself. Her neurodevelopmentalist told us in March that Abbie would be doing this soon, but it still really surprised me.

Abbie has been working very hard with Maria Margarita. Yesterday, Maria had Abbie doing full circles with her shoulder while lying on her tummy...I could not believe how loose her arms were! Maria also solved an issue that has been bugging me for a while now. On the inside of Abbie's knees there are sharp protrusions, we call them her "pokies". Maria determined that one of her leg bones (I believe the femur) was slightly out of place. She worked a while,and...voila...bone back in place and no more pokie!

Speaking of pokies, Abbie had to have a some blood drawn on Monday. I coached her through the whole thing, and she remained calm and brave, but when the needle was inserted she flinched and tried to pull her arm away -- a totally normal reaction. This may seem like a small detail, but to a mom who's watched blood drawn with minimal reaction, this was exciting!

She has been doing very well with standing in PT -- each week her therapist is amazed at the progress in her ankles. The left ankle, which was injured twice last summer, had built up a lot of scar tissue as a result, limiting her range on that side. In the past couple of weeks that scar tissue has started to break up, and the flexibilty is returning!

While I am having a grand time being a spectator to all this, Abbie is really going through a lot. Please pray for her comfort. The days right after she works with Maria can be challenging as her body detoxs and adjusts to the work done. Yesterday, after working with all her joints, Maria said, "There is absolutely no reason this little girl cannot use her body..all the joints are fine. Her body is just like a house that hasn't been lived in for a very long time, we have to get the cobwebs and dust out and then she'll be fine." Housework isn't normally my joy (ask Ray), but in this case, it's the most anticipated undertaking I can imagine!

One last quick note, I've just begun researching a new medication for Abbie, which has been shown to dramatically help spasticity, as well as drooling, without being sedating. It's a fairly new drug, and these uses are off-label, so I would really appreciate corresponding with anyone who's had any experience with Provigil (modafinil).

My dad just arrived today to spend a week with us, so we are looking forward to lots of cribbage, dice games, and catching up. I pray that you have a terrific week! Oh, one more thing...please notice that there is a new link on the left side of the screen for a little boy named Aidan. He nearly-drowned on 2/16, and will be going home for the first time tomorrow! If you have a moment, would you send his family a note of encouragement as they enter this huge transition? Thank you!

Monday, April 07, 2008

Eternal Easter

I have been waiting to download the Easter pictures before writing an update. Sorry it took so long! As you can see above, we made sure we got in the face painting line early this year, to avoid a Meany Clown vs. SuperDad rematch. Abbie was quite pleased with her butterflies (the other cheek was painted to match.) However, I wasn't able to snap a picture of all the kids before the boys visited the clown as well, hence I share with you our lovely Family Easter photo, 2008. Nothing like a couple of Spiderman faces to proclaim "He Is Risen!!!', right?

Easter was a beautiful day for all of us. Abbie is in such new place as of late, that all the sting of this particularly poignant holiday was taken away this year. I was not holding my breath at all that day, which is unusual. On other Easters I've had to pray for each and every breath to be given, as my strength would fade and despair would rush in. God provided everything this day, right down to Abbie's hair accessory. We were running a bit late for church, since we took the unusual step (for us) of attending the early service. A bit ambitious, but necessary to make it to brunch. Abbie ending up rolling out of the house with just a purple elastic band in her hair -- certainly not up to her standards!! Oh well, I thought...all that matters is that we are going to church. We'd been seated less than five minutes when a member of the hula and sign worship team walked up behind Abbie with an ornate flower arrangement for her hair. Each of the dancers was wearing one, and they had one extra....which they gently pinned in Abbie's hair. Well, my, my...who was the princess now?

At the end of the service, as Pastor was closing his message, Abbie became quite animated. So, she and I carried on a covert conversation, with me whispering and her squeezing my hand. I'd had to disconnect her switch earlier in the service when "Happy Easter" rang out over and over as Pastor began speaking. I was almost certain I understood what she meant, and my heart nearly burst. But, I waited until we were home to confirm it.

As I laid her on the couch I said, "Do you think we should tell Daddy what we were talking about in church." Big grin. "Do you think we should tell Daddy that you asked Jesus into your heart today?" Her body about jumped off the couch.

Tears came as I knew the confirmation was concrete. You see, Abbie became "talkative" in church as the pastor shared the story of salvation: how each of us are created in God's image, beloved by Him, made to have a relationship with Him; but then through our errors and mistakes are separated from Him. Christ laid down His life so that our sins could be forgiven and we could once again have a relationship with God. Abbie was enthralled, and clearly understood what was being said. When the pastor invited any who were willing to accept Christ's free gift of grace, Abbie kicked her legs and squeezed my hand yet again.

Earlier in the week a friend had emailed that she would be praying for "an Easter miracle for Abbie and your family, for a new beginning." You know what I was praying for that new beginning to be, but God had something much bigger in mind. Luke 5:23 says, "Which is easier, to say, 'Your sins have been forgiven you,' or to say, 'Rise and walk?'" God accomplished the impossible for Abbie on Easter, the salvation which makes rising and walking look like a speck of dust.

I suppose because unlike almost all of the rest of us, she has glimpsed Heaven, I somehow thought the eternal transaction had been made there. But, on Easter the Lord showed me that perhaps one reason He gave Abbie back to us is so that she could say "Yes" to Him of her own free will.

On Easter Sunday, 2008 the name Abigail Faith Vara was written in the Book of Life.