Wednesday, July 15, 2015
I don't think Reagan got a lot of sleep again last night. She was asleep when Mike laid her in bed and when I went to hook her up to her feed, but the second I laid down in bed, I heard her making noise and rolling around. She was super grabby last night with her tube and I think that led to her tube popping out and feeding the bed in the middle of the night. Mike got up around 1:30am, I think because he heard her and was going to try laying down with her, but what he found was quite the mess! She was dry but the edge of her bed was soaked. We put some towels down and he laid down with her. She'd fall asleep when he was beside her but would wake up the second he got up! Not sure how much actual sleep she got. She's been super precious again today. Super smiley and vocal. Still has the sensitive eyes and lots of chorea (crazy legs and putting hands in her hair/mouth a lot). And super sweaty back and cold hands and feet. Super sweet though and SO smiley! She had speech and PT today and did well with both. One little hiccup we've been dealing with all day is her holding her pee! She went once this morning at 9:30am and then didn't go again all day! Her pump did feed the bed for a bit last night but not long. Not long enough for her to be dehydrated, and she's been getting extra pedialyte, so that definitely shouldn't be reason. I really think it's more likely due to the high tone in her body. She's so sweet, but her body is just so tense! Finally at 10:15pm I decided something had to be done...I broke out the warm water and trickled a little on her down there and sure enough, she immediately opened the flood gates! Then she became totally relaxed and looked like she might fall asleep! I'm sure she must have felt SO much better! I can't imagine holding it that long! Poor girl! Hoping this sweet girl can get some sleep tonight!