When Ian was measured for his wheelchair last March, I could hardly wait for it to be delivered, though they told me to expect a three to five month wait. Ian was starting school that September and we thought his having a wheelchair was vital to that new beginning. I was also eight months pregnant with our second child and couldn't foresee how I was going to carry a new baby around as well as a three year old. I was so antsy to get that wheelchair; it meant independence for Ian, and also a little more for me as well.
Now that we've had the chair for about half a year, I'm starting to wonder if we're on the right path as far as Ian's mobility. I've done my best to make peace with Ian being in a wheelchair, but I've talked with other SB moms whose kids have much higher lesions than Ian's and some of those kids are walking with braces. Spina Bifida is so tricky because every case is unique, so I know I can't compare him to other kids, but I can't stop myself from wondering if we should be doing more to get him to walk, even if it is temporary. This week I talked with his physical therapist about the possibility of getting HKAFOs, which would go from his hips all the way down his leg and under his foot. These braces would lock his legs in place so that he could stand, and with a walker, be mobile on his own two feet. As a mother who has never seen her child walk, I can imagine that seeing Ian walk would be one of the best days of my life. Though he does really like his chair, he might like being able to move around like his peers even more. The downside is that, for him, walking would be very taxing because almost all of the effort would have to come from his upper body. The bigger he gets, the more effort it will take to walk, and because of that he may prefer not to.
If nothing else, Ian using HKAFOs just to stand will help his muscle tone and promote long bone growth. They may also make it easier for him to transition in and out of his wheelchair. I don't know too much about them yet, but I'm going to learn enough to make a decision about if they are right for Ian. I wish he was old enough to tell me what he wanted. Sometimes it's so hard to make decisions for another person that will affect them for the rest of their lives, especially when that person is your child.