Hanging Low and Invisible: September 2018

I am well over due for a blog post, and what better time, but during September, Chiari Malformation Awareness Month.... well, the last few days of it! lol

This summer we went to a children's museum in Tulsa, OK
I specifically choose this particular day, b/c they had an exhibit over the Brain.
Kaylie is holding an actual human brain!!!

With the kids getting older, and everyone in the house in a good healthy state, we just don’t have time to slow down. I like it that way, because if I sit too long, I start thinking too much.

2018 has been a year of milestones in our house. Our oldest started high school, Kaylie started middle school, and Mason finally found a sport he likes… Soccer!

Kaylie started middle school this year, which brought on a new school building, changing classes, and having to use a locker…. And tons of worrying for this mama!

Kaylie's 5th grade graduation.... on to middle school!

Luckily, our elementary school made it an easy and smooth transition! Before Kaylie graduated from 5^th grade last year, her team from her elementary school got together with Kaylie and I with her team at the middle school. Everyone got to know Kaylie, and we were all on the same page. They also showed her around the school. Her IEP is still in place, but only under health impairment…. She doesn’t see a special resource teacher for anything, doesn’t do anything different than the other kids… but the IEP is there, just in case. Due to Kay’s memory sometimes, the whole changing classes and having a locker combination really stressed me out. For the locker, we were lucky enough that she could bring her own lock for her locker, so she practiced a lot a few weeks before school started. As for changing classes… she has 7 different classes, so each class got its on color on the schedule, and then I colored in on the school map for each class. This helped a lot. Now, she says she is a “Pro” doesn’t even need to have it! One of her teachers sent home “parent homework”, where she wanted us to tell her about our child…. You can imagine the response I sent back, but then CCed all her other teachers. Kaylie’s school provides a Mac laptop to each child, so that has also been a learning experience for her. Pretty much everything is done on this laptop, even test. So far she is doing well, and really is enjoying her 6^th grade year! Kaylie is still playing piano, and her viola too. She also enjoys choir! Last spring, Kaylie was roller-skating in our driveway, and fell backwards hitting her head. Thank God, she had a helmet on. At the ER she had a CT, and none of her screws and rods had poped out or broke. We got really lucky… but boy was that a wake up call of, “Kaylie still has to be careful!” She is doing really well…. And it’s nice!

Kaylie & Abby at All City Orchestra Concert

As for the rest of our family… Abby is a freshman in high school, she is part of her school’s color guard, and of course still plays the violin and cello for the school orchestra. Mason is playing soccer, - No head bunting, and he is now playing piano too. Ben and I finally finished the girl’s bathroom last spring, and just really enjoying that our lives aren’t based around doctor’s appointments, or worrying about chiari stuff.

The ASAP Walk & Roll for a Cure will be held Oct. 20^nd at the DC on Film Row in Oklahoma City, OK. There address is 609 W. Sheridan Ave, OKC, OK. 73102
If you need more information contact Ann at oksupportgroup@asap.org

The date of this walk was previously Sept. 22^nd, but due to weather the walk was post pone. Unfortunately, we will not be able to make it this year. We hope all our fellow chiari warriors are doing well! And hope to see everyone next year!

Oh My Gosh… how could I forget!! We added a new member to our family…. London, a dalmatian! We have had Dalmatians in the past, and were really missing one. London is amazing… she is now 6 months old. She is great with all the kids, and other 2 dogs. She really fits in with our family!