Looking Forward

Took the youngest boy off of Phenobarbital this weekend. It was the last step of a three-month plan to wean him off it, one that we started after our last stay in the hospital back in October. He had been in for a 24 hour EEG that showed his brain “background noise” was getting closer to normal and that most of the posturing he does were not a result of seizures, but a result of muscle spasms cause by his brain injury. Good news to us of course, and also to him, as his Neurologist thought we could start taking him off of Phenobarbital as he could see no medical need for it to continue.

He hasn’t been completely off it long enough to see if it’s gonna make much difference in the day-to-day. So far, as we’ve been tapering down, the biggest change has been his frustration in his inability to move very much. Now this might be good in the long run. We’re all hoping that perhaps this frustration will be the motivation he needs to start doing more, that it’ll be the dissatisfaction of his current state that will help motivate him physically. Of course there’s no guarantee that this will be the case. Could be that now we’ll just have a much more cranky baby on our hands. A baby with a bit more attitude: A baby fed-up, bored and looking for a fight.

Could happen…not likely, but it could.

As with all things Ike related, there is no road map. His limitations are unlike anything I have to compare it to. This past week, we went to Ike’s school that he will be starting in March, we met with his teacher, with the students in his class and took a tour of the campus. Sweetie and I liked it, Ike liked it, the ten kids in his class seemed nice with two of them having severe disabilities, but there’s really nobody like Ike. There’s no one with the severe physical limitations he has coupled with an outgoing social-butterfly persona. There’s no one who gives a high-pitched yell to get your attention and then when he gets it, smiles all the way down to his toes. In fact there are very few “normal” three-year-olds that are as aware of his surroundings and of other people, as he is.

Sweetie and I try not to get too far down the road on this. Like all parents we hope for the best and take what were given. At times it seems like the less I worry about the future the better off I am, but at other times I clearly see myself as an old man, sitting across the table from him and playing chess; laughing about life, baseball and the passage of time.

It’s gonna be a strange day when they pull the buss up outside our house, strap the boy in and take him off for his first day of school. I got a feeling that the trailer is gonna seem awfully big and quiet.

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