Friday, January 6, 2012


When we found out Ian would be born with spina bifida (when I was 17 weeks pregnant), they told us that his spinal lesion was very small, and since it was also very low on his spine it should have a very minimal impact on his ability to walk. They told us he would probably need ankle/foot braces to give him stability, but he would walk, drive a car, and hardly notice his condition. Then he was born, and we were met with the reality that he couldn't really feel or move his legs. Not enough to bear weight on them anyway. He started both physical and occupational therapy before he was a month old, but the focus was more on building strength in his trunk and upper body to compensate for what was lacking in his legs. At nine months old he got his first pair of AFO braces, which go around his foot and up to his mid-calf. The AFOs allow him to stand if he is strapped into a stander.

Since his trunk muscles aren't very strong, Ian can't sit up well without support. Once he outgrew his infant bath seat, we needed something to keep him upright and stable in the bathtub so we could wash him. Luckily, we have a really great resource called Katy's Kloset nearby, and we were able to borrow a bath seat from there. He also needed some place safe to sit just around our house, or anyones house that we would take him to, so after he grew out of the regular Bumbo seat we bought a "special needs" bumbo-type seat for him. It's the same thing as a regular, $40 Bumbo seat, but it's bigger and because they label it "special needs" they can charge $200 for it. It was so useful that we actually bought two of them and one now stays at Ian's school so he can use it there.

Once he began sitting upright more in his bumbo, the weakness in his trunk muscles led to a curvature of the spine. That's right, scoliosis. In a one year old. By the time he was two it was severe enough that action needed to be taken, but it was too early to do surgery to correct it. So, at two and a half he had a full body brace made that encases his whole middle in plastic. He wears it all the time except for when he is sleeping. It's hot for him in summer, but his sitting stability is so much improved that we'd never want to go back to not having it.

Then there's the wheelchair. All the adaptations we've had to make in Ian's life so far were for the eventual addition of a wheelchair. With his legs positioned correctly in his AFOs and his trunk supported by his brace he became ready for his first wheelchair. He was measured for it a few months before his third birthday, and received it five months later. He even picked the color, toxic green. The picture on the top of the page is the first picture of him after he got his wheelchair, and that picture brings me so much joy because he looks so happy and proud. Just like Justin and I, he knew his life was changed that day.

We've come a long way from the days when the doctors were telling us that Ian's spina bifida would have a minimal impact on him. We've had to accept the fact that it is and will be a major part of his life. The bright side is that he is happy with himself, as much as a three year old can be. He's funny, smart, and quirky in a way that is very endearing. Knowing that he is happy helps me to be happy too.

1 comment:

  1. I can't imagine how difficult it must be sometimes but knowing our children are happy despite all the troubles is the best thing ever. You are doing a great job, he is a beautiful boy and congratulations on your strength.