I went to Maria’s class today. Met a couple therapists. Finally met someone in the hearing impaired arena that I like–nice, helpful, happy, positive. She’s going to try and get me some info on auditory neuropathy and cochlear implants. I still can’t quite make up my mind… I only gave the teacher and aide a couple suggestions. They really do a good job trying to involve Maria. They have a big button (called a Big Mack) that you can record your voice on, so when they go around the circle and say what color the teacher has or what day of the week or how they’re feeling, the aide records Maria’s answer, then all Maria has to do is hit the button, so it’s how she participates. She had
- lots
of episodes today. Don’t know if it was because I was there or what.
It’s a wonderful class, but holey moley just about everything they do is so far beyond her abilities; if I dwell on it for even a moment, it’s quite daunting at best. It’s good for her to be there, especially being this young, before kids realize how different she is and before they mock. It’s good for her to be around other kids and toys and activities and positive adults. But what will it be like when she has homework and tests?
The other thing I dealt with today is the neurologist. She’s shocked that Maria’s still having seizures and not-seizures-that-look-like-the-seizures. She agrees that the Trileptal doesn’t appear to be working. The 4 options we discussed were: 1) increasing the dose of Trileptal; 2) trying Tegretal (sp?); 3) trying Depakote; 4) some combination. After changing her mind several times, she opted for the Depakote, the medicine that will make Maria sleepy, could harm her liver, and could actually destroy her liver, from which she could die. Why is it that every time I talk to her, she tells me some other way Maria could be no more. It’s maddening!! I suppose I could try the new medicine for a while. We have an appt with her the 18th, and with the new neurologist Oct 8. I sure hope we like him. I’m not sure how much more of her I can take. I know she means well, but …