This was when we got home from her EEG. She was EXHAUSTED. I had to keep her up until midnight and wake her up at 4 am and not let her take a nap until she was all hooked up.
Friday, February 13, 2009
Ayva's EEG appointment did NOT go well yesterday. She is still having seizures most of the day, everyday. The "miracle drug" that we were paying out of pocket from Canada for- did not help. We are now going to start her on ACTH shots. They are expensive and they make a baby gain weight/fluid VERY rapidly. She will be our little butterball, but as long as it works, I am willing to go into debt for it. ALSO, they have to admit her to Children's Mercy for 48 hours. They want to watch her blood sugar and make sure she is ok, and also to show me how to give her the shots. It's going to really stink having to give her a shot each day- but I am praying it works and she will only have to be on it for a couple of months. SO.... I leave you with some cute pics of our little fighter.