Sunday, October 21, 2012

Just Busy... But Kay hit 3 months post-op!

Sorry it's been awhile, the past couple weeks have been really busy.

A PA from Duke University came out about couple weeks ago... our family is in the Chiari 1 Malformation Study. They took blood from all five of us, we signed some release papers, answered a questionnaire and that was about it. All though we won't see the benefits of all this.... maybe my grand kids will never have to go through this. To learn more about the Duke Study please go here.

I started back to school, this past week. Just the one online course.... Overview to Nursing. I registered for the Spring semester, I decided to only take two classes.... retaking the Anatomy & Physiology class I had dropped, and will also be taking Dev. Psychology. I am really glad to get back into school.

So Kaylie hit the 3 month post op mark!!!! No there was no party... but I was still excited to pass it. She has been doing really well! Back to school full time, she is playing at recess with the other kids, and her academics are good too! I don't have her in her PE class, she just takes an extra music class. I want more healing time to pass before she gets back involved in that. We have noticed a few little bumps in the road, nothing bad... I really just things that she will deal with for life. We have noticed with weather change the back of her head will start hurting a little. Also i have noticed when ever she has been playing hard, like running around... her incision gets really pink looking. I try to tell her to take it easy, but she knows she has to watch out for her head, thats what we say. She does a good job of that. Abby accidentally elbowed her in the back of her head the other day.... she hurt the rest of the night after that, but was fine the next morning.
It's looking good ...huh?? The hair is growing in, it does look a little pink here... but she had just come home from a friends house playing all day. That little bottom end part always seems to be the pinkest area... but if you look at it, or rub your finger over it... you can feel a suture underneath that is trying to work its way out/ dissolve.

We leave soon to go back to NY. Kaylie will have a MRI to recheck everything, and Mason will have his Flex/Extension MRI. Then we will meet with Dr. Rekate the following day to see Kay, and talk about mason's condition. We are excited to go, we will see some of Ben's family in Pa too.

This past Saturday, I held the first Oklahoma Chapter Support Group Meeting for American Syringomyelia & Chiari Alliance Project. It was great!!! I had 15 total there. I handed out information, talked about my goals for the group and everything else. I think it's going to turn into a great Chapter, that brings a lot of awareness and education to Oklahoma.

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