Thursday, July 10, 2014

Odd, off day

It's been an odd sort of day for my girl. She slept OK, but the restless sort of sleep I think. She's been sensitive and laughy all day today (laughy in a crazy, on edge sort of way, not the good way). We've been very careful to keep stimulation to a minimum and that has helped. She only had one therapy today, PT, and she did OK with that. She spent most of the day just chilling out in her bean bag chair, trying to take it easy. Her head has felt a little warm to me all day, but no fever. Tonight her temperature regulation was WAY off and she sweated her pjs wet requiring a full outfit change! I can also smell the "bad day smell". Something we haven't really noticed a lot lately, but in talking with her metabolic specialist, it's often related to an enzyme/vitamin deficiency. He said there are certain things that he can smell several rooms away and knows immediately what the issue is! I told him that we need to bring Reagan in the next time she has the "bad day smell" and have him smell her! He kinda laughed about it, but I was serious! It's strange because the way she's acting (increased tension/sensitivity), her temperature issues, the smell...these are all things we'd associate with impending bad days. However, based on her 11 day cycle and the fact that she just had what we thought were bad days, she should technically be having a stretch of good days right now! I don't know. I have no clue what's going on, but these are definitely not good days. "Off" days at best. Tonight we kept her upstairs to keep her away from her noisy brother, but after he went to bed we were thinking about taking her downstairs. Mike said only a few words to me and that totally set her off! Tears were flowing, the pouty lip was out and the super sad face! Needless to say, we just stayed upstairs and had girl-time the rest of the night! She was very neurologically quirky tonight as well. As she was dozing off she'd stiffen out her arms off and on (she does this occasionally), and then even after a dose of clonidine she was looking very jumpy and restless. I just didn't like the look of it. It all looked very seizure-ish to me. She's had lots of EEGs over the last several years (many of which were done while she was doing some of these quirky off/bad day behaviors) and each one (Thank God) has been getting better and better. I just think as she continues to grow (and begins to enter she is), we are going to have to watch her closely and quite possibly increase her seizure meds (which have been at the same dose since she was 3)! Hopefully, everything we see are just neurologic quirks, but it's just so hard to know. Praying my kooky girl can get some sleep tonight!
Tense and "off" but as beautiful as ever!

1 comment:

Cjengo said...

Interesting. Jude smells TERRIBLE right now, sweating through his hospital gown, and his temp is wacky.