Here’s the deal: Charlie cannot keep his leg straight at ninety degrees. For those of you that don’t understand, if Charlie lies on his back and I hold his leg straight, I can’t get it all the way up to ninety degrees. If you stretch him slowly, you can probably get to 85. If you move his leg quickly, it’s a lot less–I’m not sure how much less, he tends to tense up if you try something like that.
When he stands, he starts off very straight and as he tires, he starts to crouch. The PT is convinced that this is because of his tight hamstrings. I think it’s because of his weak everything else.
The pressure is starting to build.
The PT would love to see him in a stander for several hours a day, but we’ve got two second-hand standers, neither of which is easy to use and one of which is probably dangerous, so we don’t really like putting him in the stander. We do a lot of free-standing in an attempt to make up for this. Buying a new stander is pretty much out of the question because they cost thousands of dollars and we don’t have thousands of dollars to spend on medical equipment we’re not sure we even want. I offered to purchase a second-hand stander, but the PT was not at all enthused about that idea.
The Physiatrist wanted to give Charlie the muscle relaxer Baclofen, which I refused. Charlie doesn’t need muscles relaxers–he’s weak enough all ready. He’d end up with decent hamstrings and the rest of his body would resemble spaghetti noodles.
So now the PT is asking about Botox and I’m just not feelin’ it. From what I can understand, no one is worried about Charlie’s hips. No one thinks that his tight hamstrings are affecting his ability to stand/walk. His hamstrings are not rapidly getting worse–they are changing very slowly.
I just don’t see the purpose of it. I’m thinking that maybe somebody should explain that to me? Of all the choices, Botox appeals the most, but it doesn’t really appeal. I feel like I’d be subjecting Charlie to an invasive medical procedure to please his doctor and his therapist. Something’s out of whack there.
I know that everyone who works with Charlie only wants the best for him, but in this case, I’m not so sure that we’re all in agreement. I have days where I just want to turn off the lights and act like nobody’s home because it can be HARD to listen to everyone else’s opinion day in, day out. I’ve been burned by medical professionals before, so I’m not going to just do everything I’m told. But then I feel like I’m guilty of child neglect if I don’t take their recommendations at face value.
It’s one of those decisions.
Pictures taken today at the New Olreans French Market. As kid we always went there to get our pumpkins and now I get to take Charlie!