Tuesday, October 6, 2009

Quality of Life

Five months ago we went to see Charlie's physiatrist--for those who don't know, a physiatrist attends to sports injuries and also to issues related to neuro muscular disorders like cerebral palsy. He assess joints and range of motion, and prescribes goodies like braces and wheelchairs when needed. He's also the guy who could do a Botox injection into tight muscles if we needed it.

On our last visit, he discovered that Charlie's hamstrings have become even tighter than they were previously. He recommended Baclofen which is an oral muscle relaxer. I'm not interested in giving Baclofen to Charlie. First, it's a drug and I'm trying to keep the number of drugs we take down to a minimum. Second, it's a whole-body muscle relaxer and most of Charlie's body is floppy.

I have a whole bunch of other reasons, but I didn't really want to talk about that today. I wanted to talk about a little unspoken component that really sealed the deal for me. Something that I think isn't addressed enough.

As the doctor was describing Baclofen, he mentioned that it's administered three times a day. THREE TIMES! That's a lot. Even on my best days, I'm pretty scatterbrained and my husband often has to remind me to take any medicine I've been prescribed. Remembering to give Charlie a lunch-time dose of something is extremely difficult for me. I'm not saying I can't do it--Charlie had a heart medicine that he took for the first year of his life that had to be administered every day at 2:30. I did it, but it was hard. I'd often forget, I'd beat myself up for forgetting, and then I'd have to figure out a good time to give the next dose.

For me, it became a quality of life issue. And that's something that I think a lot of us forget sometimes. We are so eager to do things for our children that sometimes we follow every piece of advice we're given without thinking about the big picture. I'm not saying that I would never give Charlie Baclofen, but right now the pros don't out-weigh the cons. There's no risk to his hips, and the drug would not help him to walk. Many, many children benefit from this drug, but I don't think he would be one of them. In the grand scheme of things, it becomes one more thing on an already too-long to do list; it's yet another consideration when leaving the house; it's a worry in a mind that it full-up with worries.

I'm trying to remember this as I make plans these days. Trying to schedule in fun as well as therapy. Respecting rest as well as business. I believe that in the end, my family will be grateful that sometimes we said no to one more appointment, took a long nap, or sang a silly song.
Pictures taken at a recent trip to the zoo.