Reagan didn't sleep well again last night. She kept waking up screaming bloody murder. She'd calm down fairly quickly, but waking up like that can't be good (not for any of us). I don't know if she's waking up with a seizure or just a bad dream, but it's not fun. I did take advantage of her time up and got a couple extra ounces in her at 3am. She's been in a good mood today though. Happy but super mellow (but not sleepy). She's been very floppy and quiet...no talking whatsoever. No signs of tummy pains lately (knock on wood), because when she's happy, we're happy. Grandma was here again this weekend, so that always helps to keep her smiling. Although she wasn't too thrilled when I tried to get her casts back on her tonight. I stretched and stretched her beforehand but after only 2hrs of wearing them BOTH feet were bright red on the tops AND the heals. I give up! I tried my best and it's just not going to work. I guess I'll have to call her PT tomorrow and break the news (although I think the soonest we can get back in for new casts would be on Thursday). I'm hoping we'll hear back from her neurologist tomorrow morning about the results of the EEG. Based on the results, he will decide what changes we need to make to Reagan's medications. If you could say an extra prayer for guidance in his decision making, it would be greatly appreciated. I want these seizures to stop already. Tonight I watched the 60 minutes piece about Epilepsy and they were talking to a soldier that had seizures as a result of a brain injury in Iraq. He was saying how every time he'd make progress (he was learning how to walk and talk again), he'd have a seizure and it would wipe out everything he had just learned and he'd have to start all over again. Now imagine having hundreds of thousands of seizures everyday. It's no wonder Reagan has been at a complete standstill developmentally. Poor thing. I just want some relief for her. Please keep her in your prayers.
This pic was taken Friday (with post EEG hair), when the casts were fitting her correctly (before I took them off for the first time).
This is a mouse Halloween costume my mom bought for her last year (hoping she could wear it this year). I think it's just darling but it doesn't fit her (she's too long) and she was not happy about it!