Tuesday, May 13, 2014

Still tense

Reagan slept OK last night. She woke up still tense today but OK. There were a couple of times that she would almost go over the edge, but she never did. We had a seating guy come out to adjust her wheelchair this morning, her headrest was all out of whack and we needed some room in her foot straps (for her AFOs). Apparently she's been growing a bit, so we're going to have to see what our next options will be as far as growing this wheelchair (that will be a different appt)! Afterward, we took her in to the pediatrician to get checked out and everything looks good! They took a urine sample and it came back completely clean. So no UTI...that's good news! I didn't really think she had one, because any time in the past that we suspected one, it always came back negative. So from what we can tell, this is either a much milder form of bad day (you really couldn't even call it bad, more like "off"), or it's off days leading up to a bad day (hopefully not)! She's definitely having lots of temperature regulation issues, super cold clammy hands and feet and hot sweaty back (I had to change her pajamas 3 times tonight because she was sweating them wet)! She's got a lot of movements and keeps that left hand in her mouth at all times, so she can jam it down her throat gnaw it red! She seems to be most calm when being held or even just holding that arm down helps, I don't think she enjoys canabalizing her hand like that! Poor thing. She's also way overdue for a poo but still way too tense to go! Hopefully she'll ease up soon and relax a little! Sleep is not looking good tonight, but hopefully she'll get some!

1 comment:

Clarissa said...

Praying for Reagan and you all! Hoping it is just an off day and that tonorrow will be better! I hate that our girls lose control over their bodies with these nasty movements!