OK...so here is the post I promised. Reagan was pretty much up the entire night last night. She and I both slept about 1.5hrs and that's it! She was wide awake and a little fussy/moany. She did have one big crying outburst but then she had a big dirty diaper a few min later, so maybe that's why. Needless to say, it was a loooong night! I was ready to go to sleep the second the nurse got here, but she was 30min late and then not ready to actually start working for another 15min, so let's just say that I was not too happy about that. I absolutely HATE it when people are late! Especially to a job! And especially when it happens over and over again. Believe me, Reagan's therapists are aware of this and so are her nurses. Anyway, after I laid out and explained the medicines I was able to lay down for another hour and a half. Then I had to get back up and do more medicine. Yes, I need to be better about delegating, but this nurse hasn't been with us very long so there are some meds (like her seizure meds) that I'm still not comfortable with her giving. Eventually I was able to lay back down and get another couple hours of sleep. Of course, I got NOTHING accomplished around the house. Reagan was OK most of the day (she even had OT and speech) but she got a little fussy and had a few crying episodes this afternoon and tonight. Her hands are ice cold, she's sweating more on her back, she's been super spitty, and she's been a little more tense today...all signs of bad days. Tonight I did manage to get a few smiles out of her, but they were few and far between. She seemed better just left alone in her chair (which kills me because I want to hold her). Please continue to keep our girl in your prayers.