Sunday, March 20, 2016

Still but vocal and sweet

Another day of isolation. Another day with an even earlier 5:30am phone call telling the nurse wasn't coming in! Was that necessary? I just kind of assumed she wasn't. Of course when I tried to get up out of bed after being woken up, I could barely stand. My back was in serious pain. I'm not sure if it was from all of the lifting yesterday, from sitting on the floor beside Reagan all day with no back support, or that we just need a new mattress...but it was BAD. I went to bed feeling fine and then could barely stand up this morning. I seriously didn't even think I could make it downstairs to get the Aleve!! I had to cancel my run scheduled for 6:30am and both Mike and I slept in til 9am (and our kids...well Reagan was awake and in her chair by 5:45). And the Aleve hit the spot because when I went to get up...I could! Whew! That was awful. Really hoping it's better today/tomorrow because I'll be nurseless both days. Reagan has been a good girl again today. She was pretty vocal this morning...more of a high pitched whine sort of vocal. It would pick up any time we weren't in the room right beside her. Who can blame her? She wants attention and she deserves it! Sweet girl. She's been less of a fan of the stretching today. I wonder if maybe she's a little sore from yesterday. We did go at it pretty hard yesterday. I've taken it a little easier today, but we still tried to do it often. We also got in a much needed bath. This afternoon I went outside with her brother who wanted to ride his bike. Well, as it turns out, he CAN! Finally, he's figured out the whole idea of peddling! He took off and then went 5 loops around the block! I didn't realize how fast he'd be going...I felt like I was running after him the whole time! He's been full of energy and SNOT today. Just a constant stream from his nose. I'm sending him to school tomorrow. The dr said he had the all clear so hopefully he'll just keep his snot to himself. My girl has been more laid back today. Overall more still. And a little spitty, keeping her tongue out a lot (or licking her lips). I think that goes along with her being still...her overall tone is down and that gives her more issues in the spit department. Still hands, and even her legs are more still. This afternoon I put her AFOs on and when I took them off an hour later, her little toes were SO cold. And her feet were all discolored. Not sure what that was about. I spent the next 30min or so trying to warm them up. Then a bit later, her right hand was hot and bright red. We've seen this before. I think it's just part of the whole dysautonomia thing...but it's still strange. No idea what to expect tomorrow (on her birthday). Mike definitely thought today was going to be a bad day and it wasn't. Sometimes we do see still days before a bad day...the calm before the storm. I'm really hoping she has another good day tomorrow. I'd hate to see her miserable on her birthday! Prayers for my girl!!

Facetiming Grandma (who was in her bunny costume), Aunt Amber & Uncle Dan!!

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