Wednesday, December 7, 2016

Tense body but happy girl

Reagan had a good day today. She slept a little better last night. I know I heard her a few times, but I do think she slept more than previous nights. She was wide awake and raring to go at 7, but still dry.  She held her pee all day yesterday (not going once without help) and she was the exact same today. Ugh. What’s going on? Her body is SO tense! This isn’t good for anything. Not for her back, not for her hips, not for her feet, and not for her bodily functions! Today she even got an enema but didn’t go! Nada. Ugh. Only one therapy today, speech this morning, but she did well with it. She’s been sweet and smiley today, a lot quieter than previous days. She is a little neurologically off today. Flinchy. Eye sensitivity. She got a neat switch toy in the mail today from Santa’s Little Hackers. It was a switch activated Olaf. She really seemed to like it and it didn’t seem to annoy her at all (even though he sings). Tonight she had an “episode” around 9:20pm. She was quietly laying beside me and then all of a sudden vocalized (she’s been quiet all day), I turned to look at her and her eyes were cracked and her head turned to the right. When I pried her eyes open, they were looking up and to the right. It lasted maybe 20-30seconds and then she was back to herself. That was the only episode I saw, but I wouldn’t be surprised if she didn’t do it subtlety sometime today without her nurse even realizing. Damn hormones. She was a sweet girl the rest of the night. Didn’t doze off though until I gave her clonidine and moved her to bed. She was out when I went in to hook her up and woke her up! She vocalized and seemed pretty tense, but went back to sleep fairly easily. Hoping she stays that way. 



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