Reagan has had another heck of a day again. She slept most of the night though, in her chair, but sleep nonetheless (her poor nurse slept on the sofa beside her). She was fussy and whiny yet again. Still very much miserable. We got out of the hospital right around noon and headed home. I definitely think at first she was happy to see us (I was beyond happy). She had been fussing and as soon as Mike and I started talking to her, she calmed down. Of course, that was very short lived and she's been pretty fussy the rest of the day. Ryan has somehow managed to continue sleeping despite Reagan's fussing/yelling, so that's a good sign. Reagan is still very much miserable...having tons of chorea, nonstop biting (she got Mike a few times), and just all around stressed. What's funny, is that when we had some visitors today and were talking amongst ourselves...she seemed her most content (usually it's the exact opposite). Tonight she's very sleepy but fighting it. I'm hoping she can get some rest tonight and we can all try to recover from the last several days. Here's a couple Ryan pics to hold you over...I'll post more later when I have more time!
On August 21, 2007 (at exactly 5 months old), Reagan had her first cluster of seizures. She was diagnosed at 6 months old with Infantile Spasms and 2 years later with Mitochondrial Disease. Life has been a roller coaster for us and our baby girl but we've been blessed with wonderful friends and family to help us though this!