Rachey's just coning off a really bad week with a nasty viral illness of some kind. She can't talk and communicating is done by me asking yes or no questions, and her eye gazing at the yes or no hand, but a lot of times she's too postictal, sick or just can't answer my questions. She hardly ever makes noise, even when she's in pain. She sometimes moans, but never cries. She can no longer walk either. I used to be optomistic she would regain this skill, I hate to sound negative, but am really thinking that's never going to happen.
I had such high hopes when she was diagnosed b/c there is medicine to normalize her neurotransmitters, but they, the drs don't know what else may possibly be missing, so noones really sure what the future holds. No reseach is being done, and there are only about 20 children world wide diagnosed. We do have a parent organization that encompasses a few other neurotransmitter disorders that works together to try and get research under way.
Each illness she has takes her so much out of her. She only started sitting up and staying awake as of Sunday, so hopefully she'll continue to get stronger and use her walker again.
Thanks in advance for listening and for sharing any of your experiences.
hugs, love and prayers to all our dear children,