Sunday, September 23, 2012

Botox: War and Peace

     This week was the week James gets his Botox and Phenol injections.  It has been a regular part of his life every three months since he was about a year old and I await Botox day as both a day of salvation and a day to dread.  Usually, long before his injections are scheduled, his arms and leg muscles have become so tight that he is very uncomfortable, and is unable to do much of anything purposeful at all.  He is so hard to move, change, position, and exercise that I look forward to the relief that the shots will give him.  I think of the floppy muscles the way some women think about margaritas on the beach.
     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. 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. 

1 comment:

  1. I can't imagine the difficult choices you have had to make. He sure is a trooper, an amazing spirit. And you guys are awesome parents! I am sorry he cried a lot but I am SO glad he is happier now. What great siblings he has! Your home must be surrounded by love.