Boo!
I posted some pictures we had taken recently of Anna and Henry in their Halloween costumes. I’ve got some other photos to post, but I have to get them off of the camera first. Too few hours in the day.
We had Anna’s neurology appointment on Monday, as well as her preliminary evaluation for this second round of constraint therapy. The neurologist thought Anna looked great, and commented on the fact that if you didn’t know Anna had hemiparesis, you couldn’t really tell. Whereas this is GREAT news, it is going to turn into the bane of our existence vis a vis receiving medical services. Anna still has quite a ways to go in terms of her therapy, but we are reaching a point where the medical community says “oh, she’s functional, so we aren’t going to treat her anymore.” It hasn’t happened yet, but I’m seeing that as an issue coming up.
The OT at Children’s who will be working with us during this next round of constraint therapy believes the botox injections could really help Anna gain more functioning in her left arm/hand, so we will be proceeding with the treatment. This is not really a cut-and-dry decision for us. Because Anna’s tightness is more in the deep tissue of her shoulder and smaller muscles in her forearm, the botox injections will be a bit tricky. There is no way that the doctor is able to help the tightness in the deep muscle tissue, but she can do an injection in her forearm. These smaller muscles are harder to isolate and if she is not precise in her injection, she could end up causing decreased functioning in her fingers (for grasping). Of course, if this happens the constraint therapy is really going to be difficult to continue. I’m of the opinion that if her fingers are affected by the botox, we will call off this round of constraint therapy completely. The OT believes there are still gains that can be made, even if her grasping is affected…but at what cost!? A completely frustrated little girl? I don’t think so.
Neal is rightfully concerned that if the botox does affect her grasp that we may lose ground during the time that the medicine is blocking the signals to the brain (botox’s effects usually lasts about 3-4 months). She is beginning to use her left so much in her daily life (unprompted, no less), it would be a shame to see her disregard it once again. Needless to say, we are quite nervous about the procedure. Not only are we injecting a dangerous neurotoxin into our baby-girl’s arm, we are also exposing her to the risk of decreased functioning of her left hand. To minimize the risk of an unintended muscle being injected, the doctor will use an electronic stimulator on her needle, which will show her which muscle she is in contact with. I’m not sure how this will work, but I’m sure we will learn soon enough. Anyway, it is not an easy decision. These are the times you can’t help but think about how unfair life can be.
3 comments October 30th, 2007