Sunday, June 9, 2013

Sleep Arrived

It has happened sleep has entered this house. What is even better is it wants to stay. Wahooo!

You'd never know she only had 3hrs sleep.
About 2 weeks ago we saw Dr. Makris (Squeaker's pulmonologist). We ran into him in the hall as we were heading to our room and of course he asked how Squeaker was doing. I told him about everything but then I said "And she doesn't sleep. We are getting about 5-8 hours a day." He stopped going through paperwork and looked at me in the eye. He just looked at me for a couple of seconds then responded, "I can see. I'll be in soon. I just have one patient in front of you." He headed into the other room and we waited in ours.

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
Okay so the sleep thing. Dr. Makris looked at me again and told me he wanted to medicate Squeaker. My response was "Yes Please. It's really that bad. Trey and I are having to take turns being up with her. So one is getting much sleep." Dr. Makris prescribed Clonidine. Which is used to help lots of conditions, including insomnia. It has made such a huge difference in our lives. Within 20-45 minutes Squeaker can go from bouncing off the walls to out cold. The other thing we have noticed is that because she isn't so stressed about falling asleep that when Squeaker transitions in sleep cycles she can roll over and go back to sleep on her own. She still wakes up about every three hours to have something to eat but hey that is a lot better than where we were.


Just couldn't wait to get in the water
There is one downside. Now that Squeaker is sleeping more solidly at night she isn't recognizing as easily she needs a nap during the day. Some may say, "She's almost 3 it's okay to drop nap time" And if she was a normal kid I would yes your right. But you have to remember this child has been sleep deprived almost her entire life. Once I can get Squeaker asleep for a nap she sleeps on average 3 hours. Then she will go to bed at her normal time. That tells me Squeaker still needs that nap time most days.


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"
"Mommy Love"
"Belly Rub"
"I nigh nigh"


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