Wednesday, October 28, 2015

Somber but sweet

Reagan slept well (I think) last night. When I got up at 5:15am to run, I realized her monitor had been off all night! I went in to check on her and she had wiggled her way to the bottom of her bed, was laying on her tummy (so she was probably stuck and unable to get back onto her back), and she had her tube in her hand. Butttttt...she was still I left her as is. By the time I got back and then got out of the shower, Daddy was moving her into her therapy room with a wet diaper. Well, not only was it wet, but it was a poopy diaper!! Yes, another one on her own! I'll take it! She was sweet and serious. Giving little smiles, but definitely on the somber side. She's been that way all day today. Pretty still, although she does kick off and on (enough to make her sweat), but very disinterested in most things. Her nurse and her teacher tried to get her to use her eye gaze today and she just kept looking down. Not looking down like she was sleepy, but looking down like she was not in the mood to mess with that today! Message received. Her speech and PT both had to cancel today, so not a lot going on. Her body definitely seems more tense today. More overall tone in her legs as well as chorea. We are all set to go in tomorrow morning (Thursday) for her dental cleaning under anesthesia. There is no urgency in doing this, it's just been a long time a coming! It's been over 5yrs since her last cleaning/x-rays/fillings/crowns so she's definitely due. Of course the last time she had this done (diff hospital/dr) she ended up with a nasty sore at the back of her throat from the intubation tube! I'm not sure where she's headed right now (whether she's headed away from or toward bad days) but we're just going to see how she's doing in the morning and decide then. If she wakes up fine, then we'll head over to Dell at 7:15am for an 8:30am arrival time (10am procedure time). If she seems tense or unhappy, then we'll cancel and hopefully reschedule some time later this month. The last thing I want to do is put her through any unnecessary stress (especially when her body is already stressed)! We'll follow her lead. Please keep her in your prayers!!

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