Monday, July 8, 2013
We have been pleased with Mikan's interest in new foods. He still will rarely eat anything outside of his crunchy favorites, but his attitude about food is changing. I know this is a result of constant exposure in a non-threatening environment. It is taking way longer than I ever thought it would, but I can see a more typical diet somewhere in his future. We took him cherry picking recently and the pictures prove that he wanted to try them! He only licked the skin, but he did it without any prompting. Blueberry and apple picking are in his near future.
Later this week Mikan will undergo his first round of Botox injections in his gastrox muscles. He will receive additional PT during the weeks following the injections in order to maximize their effect. This is the first procedure he has undergone where I am not very optimistic about the results. I know the effect is temporary, and I know that he will continue to develop more muscle problems as he grows. We are struggling with accepting this ongoing issue. It's good to know that time and therapy will make things better, but we can't be sure that is true for his ataxia and spasticity. These issues will need to be managed lifelong, and I'm not sure I'm ready to sign him up for a life-sentence of Botox. We have made the decision to try them once and see how he feels.
We have also decided to sign Mikan up for additional OT sessions through the summer since he has a little extra time. But after this summer I think it is time to scale back. I am ready to say "no" or "this is too much" or "he's doing fine" to anyone suggesting additional treatments. Mikan will soon be able to communicate better what he wants and better direct his therapy. Right now I am deciding those things for him. But it's wearing me out. And I'm not even the one in therapy.
Posted by John and Jenna Gensic at 2:34 PM