|You'd never know she only had 3hrs sleep.|
It was only about 10 minutes later that Dr. Makris came in to see us. We talked about everything that was going on. All the sweating, over heating, wheezing, coughing, not eating, and not sleeping. Dr. Makris looked at me and asked "We've sweated her right?" Which is medical speak for having done a Cystic Fibrosis Sweat Test. I said "Yes, twice. And the genetics test. Which was normal." Dr. Makris looked very pensive and said "It's like she has CF without having CF." Then he said something I wanted to laugh so hard at. "I'm so irritated that I can't find the cause." Now I wanted to laugh at this because at our last appointment with Dr. King he said the same thing. Just about word for word. To hear two specialist be "irritated" about not being able to find a cause just makes me so happy I want to laugh. It shows just how much they care about their kids.
|Mini Golfing Memorial Day|
|Just couldn't wait to get in the water|
This is our new general sleep schedule. Squeaker wakes up around 7-9am. 7am is a little early and Squeaker will still be grumpy but it's when she wakes... Then nap time is about 3:30pm to 6:30-7pm. I think Squeaker would nap earlier but then she'd never see Trey, so nap time is right after Trey leaves for work. About 9:00-9:30 is when Squeaker gets her pill (yes the Clonidine is a pill) and is out by 10pm. That means in general 12hrs a day Squeaker is sleeping, and it is great. Although we still have some issues, hey she's a toddler, there is less throwing of things, less melt downs, and more patients from both Trey and Me. Not just with Squeaker but with each other.
There is one other side effect, Squeaker now talks in her waking states.
Squeaker's Sleepy Sayings:
"I'm alright, I'm alright"
"Bye bye dream"
"I nigh nigh"