Almost done

This is my first post on Nora's new blog site. I am in the process of figuring out how this works. I probably should have started this long ago and used it like a diary of Nora's journey through Infantile Spasms. Anyway, check back whenever you get a chance and I'll try to update you on what is happening.

She is almost finished with her wean from the steroid, ACTH. Only 1 more week to go. She has been on it for 7 weeks now. She has gotten very puffy and gained a lot of weight which is one side effect. Her blood pressure has also been very high so is on b/p medication as well. She hasn't been too miserable except at night. She wakes up between 3:00-5:00 am every day and is up ready to go.

She did start walking about 2 weeks ago. She's bit of a drunken sailor at this point but at least we know she'll get there eventually. She still has no communication except crying and grunting. She sees a speech therapist every week so hopefully we'll get some language in the future.

Nora is also enrolled in a birth to 3 program which helps children with developmental delays. She goes 2 times a week and seems to enjoy it. At least, she doesn't scream the whole time. Nora also receives addtional PT/OT and speech therapies.

Anyway, I'll try to start posting daily. I guess I am a bit late with Nora's blog but I really didn't have the time or energy to figure it out.

Thanks for stopping by!