Sunday, May 17, 2015

Much improved day

Last night was a rough one. My girl fell asleep last night and slept for a few hours at first, but the rest of the night was her medicine not working and her waking up prematurely every 1-2hrs. At least we got a few couple hours of consecutive sleep! This morning she was still pretty fussy but her medicine seemed to be working a little better and she was sleeping for longer stretches (of course). Her Thursday night nurse picked up a 12-8pm shift today to help us out and it seemed once she got here, all was good with Reagan! When she finally woke up, she was calm and quiet. Keeping her eyes mostly closed and crunching up in a ball (putting both hands in her mouth at the same time)! She was amazingly calm though and even tolerated sitting in her wheelchair to play with toys! Quite the change from yesterday! She's been consistently having two bad days in a row for a while now, so we were thrilled to see that she was already feeling better today. The only thing we changed...yesterday and today we gave her ~10 10ml flushes of pediatlyte throughout the day. Our little friend Gwendolyn who has SMA just started having autonomic storms over the last couple years and her mom mentioned the other day that the one thing they've done that seems to help her, is to give her extra pedialyte throughout her day. I thought it certainly couldn't hurt to try it, as Reagan's previous neurologist often referred to her bad days as some sort of autonomic storming episode. We'll see if we see any lasting improvement over the next couple of weeks. That sure would be nice! Anyway, Reagan was doing so well tonight that when her nurse left, we were able to bring her downstairs and she tolerated her brother and the television just fine (not a fan of us talking though). Unfortunately, the later it got, the more agitated she got. No crying...just restless and trying to cram her hands down her throat! Her medicine wasn't helping either. She wasn't getting sleepy or settling down at all. It was clear she wasn't going to tolerate her bed and it would be another night in her chair. We moved her to her chair and Daddy eventually got her to doze off. Something tells me it's going to be another long night...
Brother talked daddy into swimming today (in the cold pool)...

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