Friday, July 25, 2008

EEG scheduled

I emailed our neuro the other day wondering if I could meet with him to discuss weaning Nora off her anti seizure medication, Lamictal. She has not had an infantile spasm type spasm since May of 2007 and she has never had another type of seizure. I think he likes to have kids on meds for 2 years after seizures are controlled but I don't want her on them just because. There should be a reason right? Anyway, we need to have an EEG before we meet with him so Nora will now have her 4th or 5th EEG. Can't quite remember. SO another day of craziness for us on Aug. 6th. I am supposed to wake her up at 4 am so she will be good and tired at 1:00 pm. Huh. Great. SO not only will she be sleep deprived, I will too. Hopefully it will show that her brain activity looks "normal" and we'll be able to be med free. She'll never have a normal eeg due to her cysts and agenisis of the corpus callosum. But normal enough.

She put 2 words together for the speech therapist on Tues. She said "go-go mo-mo" indicating she wanted the hokey pokey Elmo to go. She only repeated it after her therapist said it but she did say it!

Emma and I had a good day on Thursday. Grandma watched Nora and I took Emma to her art class and got to go to the Y. We then went out for lunch. Then we spent the whole day at the pool with Lisa and Lucas. Alex met us there with Nora and a pizza and a evening swim. It was a very good day indeed. I don't get that many opportunities to spend the whole day with Emma alone and it was so nice to give her my whole attention.

We had some friends over today to play which was fun. I joined Facebook and have gotten messages from some long lost friends. Especially my really good friend Zeth from high school who I lost touch with. It was so good to hear from him and reconnect. Weird how you can not talk to someone for 10 years and still feel like you are still good friends. Good weird.

thanks for checking in.


No comments: