Sunday, September 23, 2012
Botox: War and Peace
However, to get those nice limber muscles, James gets about 14 different injections. The use general anesthesia so he doesn't feel them immediately, but what the phenol does is essentially chemically destroy the nerve. Sooo..it is painful when he wakes up and a few days afterwards. On top of that his brain interprets pain abnormally anyway, and so the few days after are hard. He cries, and I cry. Sometimes he wakes up from anesthesia and does well, other times he is unstable. So why do we do this to him? Because if we don't, those stiff muscles will make his tendons permanently shorten and his bones deform. His oral medications aren't controlling his spasticity. Within the next couple months we are going to have to make a decision between him getting a intrathecal baclofen pump or having a selective dorsal rhizotomy. They had to stick him about 3 times for each injection this round because he was so scarred. (yep, that makes about 42 pokes) I hate that we have to make so many choices for this sweet little boy that are just varying degrees of awful.
The week has a good ending though. Today, after several days of almost non-stop crying he was happy. There was a moment where he was laying on the floor and all of his siblings were around him. They were all playing lego's and laughing. I was sitting by my husband and we were all still in our PJ's. I watched as our kids were dumping lego's over James' hands. Very slowly and deliberately, he reached out and brushed his hand over the pile, squealing with delight that he had been able to get the block. I sat there thinking, "it may be a little thing, but right here, right now, I am happy." James has taught me a lot of things and one of those things is that it is the little moments that matter.