Wednesday, August 5, 2015

Sensitive but sweet

Last night Reagan was having a hard time falling asleep. Without medication she was dozing off but the second Daddy would try to get up, she'd get super vocal again. Finally I gave her a dose of clonidine and we went to bed. She must have finally dozed off because we didn't hear another peep until around 4am (her favorite time to wake up lately). I saw her squirmed down to the bottom of her bed, so got up and recovered her and went back to sleep til 5:30am. When I got up to run, she was still vocalizing but calm. By the time I got back, she had already wiggled out of her covers again and was wide awake! I moved her to her chair where she immediately seemed a little more content. I put on her arm restraint (to keep her from cramming her left had down her throat) and that seemed to help settle her down even more. She did have one weird episode that had her nurse worried a little. She's been very sensitive (squinting a lot and just sensitive to noises/us talking). Her nurse coughed and Reagan startled and then squinted a lot while turning her head to the side...not breaking out of it. By the time I got upstairs she had stopped and made eye contact with me. We've seen her do this (for years) usually when she's in the process of falling asleep and associated with her stiffening her arms out, but we've seen it other times too. It was the first time the nurse saw her do it. It's definitely very "seizure-ish" but her EEG gets better each year we check it...so I'm choosing not to worry too much about it. I left her neuro's nurse a message. I would also like to tell him of all of the neurologic quirks we've been seeing lately (increased sensitivity, lots more crunchiness, and no sleep vs sleep all day days). So despite that weird episode and being up early again today, she's really had a pretty great day! She's been super sweet and smiley. Definitely less tone than previous days, although still a lot of movement/kicking and wanting her hands in her mouth. Her temperature regulation has normalized and she's peeing on her own again as well (probably another thing I should bring up to her neuro). She had speech, PT, and OT all today and did really well with them all! Tomorrow she has an appt with her metabolic specialist. I'm hoping maybe he'll have input on the changes we've seen lately. This afternoon/tonight she's looking very sleepy to me. Tomorrow would technically be 5 days since her last sleepy day, so I'm curious to see what she does. Not that I want her sleeping through her drs appt, but God knows she could use the sleep. Hoping for maybe a NORMAL awake day tomorrow? That would be nice! Thank you for keeping our princess in your prayers!



Ryan cracking me up tonight! 

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