A Truly Amazing Life

Life in Davidtopia is very busy right now. He has physical therapy (PT) two times per week and water PT once a week. We are up before daylight to get him to the west side for his PT's and as always, there are hiccups with insurance, but he likes his therapy and so far, he seems to be gaining from it.

For those of you who may be just tuning in, David has cerebral palsy (CP). His particular type of CP was brought on by a premature birth which resulted in a grade 4 brain bleed and a host of other issues. His CP is both physical and mental, with the physical part affecting his lower extremities (hips, legs, ankles) much more than his upper body. Early on he was little and light and he walked really well with a walker, despite the tightness in his muscles. As he grew though, he began to have issues holding his own weight up and being able to have stability on his feet. When he was 12 years old, we learned about Shriners Hospital in St. Louis and David was sponsored by a local Shriner to go and get checked out. There we learned that Davids hips were really bad and that not "if" but "when" his hips gave out, he would be in constant pain for the rest of his life. The only thing to be done was a long and painful surgery to repair the hips and also to fix the muscles in his legs and knees. Everlasting pain vs. surgery? It was a no-brainer. He had the surgery. Unfortunately, the surgery over corrected the problem and within a year, he had a new problem. He couldn't even stand because his hips had spread out to the point that his feet crisscrossed. Strengthening PT was impossible because he simply couldn't stand. Now, nine almost ten months ago, David had the hip surgery again. This time they pulled the hips back to center. In April, he stood with straight legs for the very first time ever. In September, he was okayed for intense PT, as his hips had healed and his bones had strengthened to the point where he wouldn't hurt himself. And now you are up to speed!

David has the desire and the drive to walk, now he just needs the strength and as far as PT goes, we still have mountains to climb. What is the saying...."You have to crawl before you walk and walk before you run." Well David is literally at the crawling stage. Now he is working on the walking. He is working on strengthening his legs, hips and his entire core. Even though his upper body is a thousand times better than his lower body, as he grows, there is more of him to support and the surgeries have weakened his upper body a bit. He is working to regain that strength and move forward. At PT, he works on supporting himself and doing fun things like playing ball, kicking the ball and reaching for things. He also constantly works on sitting/standing which for you and I would be similar to squats. The sit/stands help to build muscle and prepare him for walking.

The pool therapy is an amazing strengthening tool as he is constantly kicking in the water to keep himself moving. On his own in our pool he started getting stronger just being out there playing. It is because of the pool that he started kicking outside the pool. Before that, he couldn't lift his own legs to kick. With the targeted pool therapy, I am hoping that the change will be amazing.

When not at PT, David does daily routines at school of sitting on an exercise ball to learn trunk control and strengthen his core as well as he does stretches to keep his muscles in shape so he doesn't lose anything. He can actually take off and walk with his walker, but because the strength isn't there yet, he tires easily and his muscles will begin to shake. Sometimes it is hard to watch, but then I put it into the perspective that David is like an athlete training for a marathon. There is a lot of hard work, pain and effort that goes into that training, but when the finish line is crossed, it is worth every second of that painful journey. I feel that when David crosses the finish line, we aren't going to remember the surgeries, the long and hard recoveries, the sleepless nights, the pain or the endless PT. All he or I will be thinking about is that he did it!!!! He is walking!!!! It will all have been worth it for both of us.

And speaking of growing.....David turned 14 years old on Sunday. He is about 4'8" tall and he weighs about 80 lbs and he is all teenage boy. He got several gifts, mostly cars as he is in love with cars, but his favorite gifts were the Mylar balloons he got. Three guesses why. They have Spongebob on them of course. So far they are holding up under his constant handling but I fear they are not long for this world.

Life continues on here in our humble abode. We keep doing our best to move forward and kicking the obstacles out of the way and so far, David appears to be on track...... for a truly amazing life. 

No Limits

In case I don't say it enough, or someone is new to this blog and simply doesn't know......David is amazing! If you know him at all or know his story, then you know that where David started life almost 14 years ago, to where he is now, is nothing short of a miracle. A child who was beyond critical for the first 3 months of his life and his life expectancy was only 15% and if he lived, his chance at being anything more than a body in a permanent vegetative state was about 95%. Since that third month though, (coincidentally...his actual due date), he has never stopped proving doctors wrong and pushing through any preconceived limits. Yes, he is a true miracle.

I don't know about all special kids, but David seems to save up his amazingness and then all of a sudden do a lot of new things at once. Sometimes these spurts of achievement have come after seizures and other times they come out of the blue. For David, all of these watershed moments are hard fought battles with his mind and body having to work many times harder than yours or mine to achieve these goals. What for other kids are expected milestones, for David are extreme benchmarks that I have learned to rejoice over and have also learned not to take for granted in my child or anyone else's.

In 2011 we made our first trip to Shriner's. David was walking with his walker, he had been since he was five, but as he was getting bigger, his knees were turning in more and more and he was becoming awkward and tripping himself up. We learned at Shriner's that it wasn't just his knees causing the problem, but it was also his legs and his hips. He needed surgery! A surgery he should have had when he was about four, but no local doctor had told us about. Without this surgery, his hips would soon deteriorate and eventually David would no longer be able to walk with or without a walker and his life would be one of constant pain. The surgery, six hours long, included the breaking of bones, screws, metal plates and a recovery time of at least six months. The surgery went off without a hitch, but the hours following were harrowing and we almost lost him. The recovery was every bit as difficult as I was told it would be and the kicker was, the first time around, we really had no idea what to expect.

It took a good six to eight months before David was anywhere near back to where he was pre-surgery. The spastisity of his muscles was mostly gone. His legs from the knees down were amazingly straight, but his hips which had been surgically turned out, just continued to turn. Any attempt at walking was impossible because now he was bowlegged to the point that his feet would cross. The surgery was only partially successful, which I learned sometimes happens with kids like David. So on the last day of 2013, we were back in St. Louis and David underwent another surgery (this time about four hours long) to pull his hips back to center. He was put in a spika cast which is a cast on both legs from waist to ankles. Again, the surgery went off without a hitch, but the next three months were a series of complications due to the surgery, most dealing with his seizures. Again the doctors expected at least a six month recuperation and possibly another three to six months before he was back to pre-surgery movement. The recuperation expectation time was then thrown back further as he broke his right leg just above the knee, the day after his spika cast was removed. He was in another cast for another six weeks. This threw his physical therapy back another two months. We were losing ground quickly and I was becoming increasingly frustrated. Two life threatening surgeries and he might not walk! This was simply unthinkable. Then once again, David proved that his desire to achieve was far greater than any broken leg or delayed PT.

In April (four months out of surgery), David stood for the first time. It took my breath away as no one thought he could...at least not at that stage of the game. By the end of April, he had once again mastered crawling up and down the 13 stairs in my house. He was back to his old independent self. By May he was taking steps with his walker and gaining both strength and muscle in his legs. In July, he went back to Shriner's for a checkup. When asked if he could walk with his walker, David proceeded to stand and take off at a sprinting speed in their spacious hallways. When he finally stopped, he had taken about 20 steps. All in attendance were duly impressed.

Mid July, our long awaited pool was finished and ready for use. Pool therapy is the best therapy for kids like David. He has always loved the pool and the minute he got in for the first time this year, he was in his element. Wearing only little blow up arm floaties, he kicked his way around the 18 x 33 foot pool for over three hours. His legs propelled him back and forth and in circles over every inch of that water and when I finally pulled him out (and not without much duress might I add) he was exhausted. After several days of this he began to start kicking his legs outside the pool....  something he had never done before. Always before he would move his legs by lifting them with his hands, but now, he was kicking with only the power of his legs. Whether he was sitting or laying down, he could kick those legs. It was after being in the pool that he did his little sprint at Shriner's too.

So here we are today....eight months out. David has been pulling himself up on the coffee table and seating himself on the couch, he is using his legs and his own strength to transition himself from his wheelchair to the floor and we are working on transitioning from the wheelchair to his seat in the van. He is getting very proficient at climbing over the side of the tub for his baths and we are back to toilet training where he also has learned to transition himself.

Yes, David is amazing! His shear determination and desire for independence and mobility are awe inspiring and each new milestone is a key that is unlocking a happy and independent future for the one who almost 14 years ago, didn't seem to have a future. I have no doubt that God has big things in store for my son and I would say at this point....even the sky holds no limits for David.