Tuesday, January 7, 2014
It's been an awful one for my girl today. I don't think anyone really understands how bad her bad days are (her doctors, teachers, our friends and family)...I don't think we, her parents, who see it first hand day in and day out, can even begin to understand how miserable she feels on these days. Her OT came today (one of the few therapists who has seen her on a bad day) and was telling me that out of all of the kids she's worked with, she's never seen any of them who go through anything even similar to Reagan's bad days. I was thinking about it tonight, as I watched her flail and fight sleep, it literally is torture. Her body is torturing her! For me, it's no different than watching someone pluck her fingernails off...she is literally that miserable! Last night she slept much better than I would have suspected. She woke up crying only an hour or so after falling asleep, but eventually fell back to sleep with medication. We never heard a peep out of her and then around 5am Mike wakes me up and tells me to look at her monitor. She is completely missing from the bean bag chair! I went into her room and she had slid off onto the floor! The funny thing is, she was completely upright, feet crossed on the floor and back and head resting against the chair, arms up above her head and fast asleep (I really should have taken a picture)!! We were afraid to touch her! We left her, but an hour or so later, Mike went in to check on her and she was laying on the floor face first...and still asleep!!! He picked her up, but that woke her up and she was NOT happy. The crying started and continued every waking moment the rest of the day. Poor girl. The only good thing I can say is that her nausea was gone (she can typically only do one thing at a time...cry or be nauseous) and alternating the clonidine/Lortab did a pretty good job covering her pain and keeping her asleep. The awake/miserable periods got longer as the day went on and tonight she cried for almost an hour. She was just so restless, her body was not letting her go back to sleep! I ended up having to take her weighted blanket off her legs and wrapping it around her arms and tucking it up tight behind her chair (kind of a make shift straight jacket). Poor girl! I just hope she can sleep this off tonight and wake up feeling better tomorrow! Please say some extra prayers for her!