Thursday, June 12, 2014

Sleep Study Time

Brooklyn and I trekked down to Cincinnati today for an overnight sleep study. She's had a major change in her sleep patterns and been restless in her sleep and tired in the daytime, so given the neurological stuff that's been going on, they wanted to cover all their bases and Dr. K recommended a sleep study - the best way to ensure a child is getting a good night's rest. Sleep is important for everyone, but critical for a person whose body is experiencing additional physical stress. So hopefully we will have good news that she's getting the best night's sleep she can be. Results typically take 2-4 weeks.

The techs commented on how mature BK is and how she is so full of smiles considering the upheaval she's had in the past year. She beamed with pride hearing that and said, "Well, I AM the BIG sister, soooo..."
I couldn't be more proud of her positive attitude and the way bad things just don't get her down.

Yesterday her MRI went well and she was able to lie still long enough for them to get good images - this is huge because in the fall, they had to use general anesthesia (twilight sedation was not advised by anesthesia due to our family history). This is the results we are probably most anxious waiting for, Dr. K suggested the changes in her MRI would be a good predictor of how quickly things are changing, or hopefully confirm that this is not going to be progressive in nature. We will wrap up the week with 6-7 hours of academic neuropsych testing. This will tell us tons of information about the way she's processing information, her current IQ, which will establish a baseline if she continues to lose skills. If there is one area of the brain where skill is much worse, we can then take that information and look at that area in further detail. It will also be a huge asset in helping us develop a plan of attack for next school year, and help determine what might need to be set forth in her IEP, so we can relieve some of the stress she endured this year with tests being timed, etc. She's still a very smart little girl, so it's difficult to see her struggle. I can only imagine how she feels not being able to do things she knows she could do in the fall. I tell her to try not to worry about how long it takes her, just to focus on quality of her work and give her best effort. I'm very proud of how she handled herself throughout the school year, leaving public school and working from home around her symptoms, headaches, challenges, and appointments. She definitely belongs in our family of troopers!

I so look forward to the drive home with her tomorrow. It's special time that she and I get to be alone and chat excitedly about all kinds of things - yesterday we talked about which cloud heaven was on (her choice of topic) and argued over what flavor of ice cream is the best (mine) and wondered aloud what everyone was doing at home and how they could possibly survive without us for a night. :)

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