Wednesday, November 26, 2014

Less sleep, more smiles!

Tonight Reagan was really restless in the sleep department. She fell asleep last night on her own, but woke up around 2am and was WIDE awake. I gave her clonidine, but had to move her to her chair, she was kicking around so much in bed. She was pretty vocal when I went and laid back down in bed. She obviously didn't go back to sleep, because Mike later woke up and transferred her back to her bed where he was able to get her to fall back asleep. That didn't last long though and I thought I heard her kicking around right as I was leaving for my walk. When I got back, she was being super vocal...definitely awake! She's been great today. Super smiley again. She had speech and PT today and did well with both. Spent some time in the stander and even did a Thanksgiving craft with her PT!! She's still very into her hand, chewing it until it's completely red! Vocal at very appropriate times. We're pretty sure she's saying "hi" when we great her now! I've heard her say it to me, nurses, therapists, and today to my aunt that was visiting. My aunt Alice lives in Louisiana and works in a special needs classroom. She was wearing a mito shirt that a student's family had given her. Mitochondrial disease isn't as rare as people think. Hoping and praying my girl can hold out and have another wonderful day tomorrow. I'd even take a sleepy day! Our plans are to hit the road for Houston in the morning and drive back in the afternoon! It's going to be a looooong day! Praying for two very good kiddos!


1 comment:

Kristin Sanders said...

Reagan looks adorable with that turkey headband on! Praying you all had a nice Thanksgiving. A former schoolmate of mine;his wife posted a beautiful picture of them with their daughter Kayla yesterday. She has mito as well. I despise that disease. I check in almost every day on Reagan's blog. My son has health problems, and my father is now battling a brain tumor on top of his advanced dementia. We live with it 24/7, so while I can never understand what it's like to be a parent handling these bad days, I can appreciate how stressful and worrisome they must be. I am always happy when Reagan had a good day and was able to get some good sleep! Much love from DE, Kristin