No, this isn't a post about that crazy parent who supposedly botoxed her young child for a beauty pageant. I will never understand why someone would do that. Hell I don't even understand why adults do it to themselves. I sure won't be one of them when the wrinkles someday start.
This morning Al and I made one of those really tough parenting decisions. I guess it's a decision we really made last month, but today we made it official. And I am scared.
As you know, the Big Guy has mild cerebral palsy. While we have some wonderful doctors, we have also waited over 4 years to get an appointment with a certain specialist. That appointment was last month. After a long talk we decided to try botox injections for his leg, with a possibility of his arm as well. It will never take the cerebral palsy away, but the hope is that since he is mild with a full range of motion to begin with, it will ease that tightness so he can move better.
Until a few months ago we had always been looking ahead to a surgery when he gets a little older to lengthen the muscles in his leg. Trying the botox now will help to give us an indication if the surgery would be good for him in a few years. The botox may or may not work. For some kids it works for only a few months before they need it again. For others it works longer.
We have a pre evaluation next week and the actual procedure the week after that at the hospital, where he will have to be put under. While I don't necessarily like the anesthesia part, a part of me feels like it's the right thing so he won't know what is happening. He's been through enough doctors and procedures over the years, he doesn't need this memory too.
One week after the botox we go back for a post eval where the doctors will decide if he needs his AFO - or boot as he calls it - back. And what the physical therapy schedule will look like (which we had been able to stop for the last year). There is even a chance he will need to be casted for awhile. I think the potential of the casting is stressing me out already.
There goes the end of soccer season, Thanksgiving, his birthday and Christmas even. Inside I know it's better to do it now verses the warmer spring and summer weather, but the thought of what could come is killing me. (Not to mention I don't want him to be that kid in school the other kids realize can't do as much.) So far, he's managed to keep up with everyone.
Then again, if this works? If it really works? And he can move better and no longer even needs his boot? It will have all been worth it. It just feels like such a hard decision. We have never kept the cp from him, he has always known. It's really only been the last 6 months maybe where he has started to understand what it means, as he realizes there are other kids (like his brothers for starters) that have an easier time with things.
If I could take this away for him I would in a heartbeat. But that's not an option.
This procedure gives us another kind of option though. So I'm holding my breath and trying to figure out a way to explain something to him without going into too much detail. And starting with prayers now that maybe, just maybe this will work for him. I'll keep you all posted.
Growing up with a disability myself, I'm glad that you are giving him the opportunities to do everything to his fullest potential. :) You wouldn't be good parents if you didn't worry about his future, and I'm glad to hear he knows that he's different, we're all special! :) No matter how hard things may seem, he's a strong kid, and in some ways, a 'disability' makes us stronger. :DReplyDelete
Mel (your cousin)
Putting him out for the Botox is an excellent idea. Mack's never had it, but we have been in the doctor's office when another child has. Oof. Horrible screaming.ReplyDelete
The casting isn't that bad. The worst part of it is going back over and over to have the old one removed and the new one put on. It is totally worth doing and he can walk with it and everything. Mack's been casted twice and it made a difference.
It's obvious how much you and your husband love your son and think through all decisions about his health and well-being. Good luck! I hope this turns out to be a very good decision for all of you. : )ReplyDelete
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