I can see little steps forward all the time -- asking to pet dogs, complimenting people she casually talks to, counting with her number tiles to 80 (we may make 100 by September 1), more difficult directions using before and after and between for our morning parade. We are also playing "hot and cold" when she cannot find numbers -- she never understood the concept behind that simple game. We are having a challenge listening which I've decided to work on by giving her reward points towards time with the wii. I have not let her turn it on since I decided it was rotting her brain. I am calmed down about it now. Oy, I hate those games but it does give her a skill that is like other kids. I want her to fit in. But if she is going to play, I might as well use it to teach something.
And then there is the picking on her skin. The behavior is still present -- a bit less this summer because she has been busy and I've been with her to call her attention to it -- and I am worried that once school begins it will get worse. I've not managed to use any behavior means to control it, so I finally asked our drug doc for help. We are going to raise her dosage of her stimulant (Adderall) by 5 mg and see if there is any change. There is research to support more stimulant to control ADHD thereby diminishing anxiety, but also the possibility that the picking is a side effect of the Adderall. We start the change tomorrow. I will have to watch her carefully over the next two weeks.
I put Cheshire's bedroom back together today, cleaning everything that was not painted or sanded and rearranging furniture. The room, which is set up for Cheshire, was used most of the time by David. He put a desk and computer in there, he brought his electric keyboard in to play music. After the transplant, that room became medical and drug central, and he set up charts for what he took each day, his blood pressure, his sugar levels. As I cleaned and rearranged, I was aware of a heaviness of spirit about the room. It needed the cleaning for more than dust. The chi needed to be stirred up and some darkness dismissed. I wondered if he had sat at that desk and thought about the fall that he took that he didn't tell me about, and possibly feeling weak or ill and deciding it was not important enough to let me or his medical team know. Such a sadness. I lit a candle and burned some incense. I opened all the windows wide. I hope that spirit of the place can be revived.