Monday, October 27, 2014

more waiting...

As you know Kaylie had her 2 year post op MRI this summer, which came back her having a secondary condition called Retroflexed Odontoid Process. After a couple emails with Dr. Rekate, it was decided that Kaylie would go ahead and get a Flex/Extension MRI... basically they flex your head forward, then extend it back. She had this MRI at the end of September. The day of the MRI, there were some issues with our Children's hospital putting her under and doing that type of MRI. So with talking to them, and Kaylie, it was decided that she would try to do the MRI without sedation. They aloud me to be in there with her.... basically I was rubbing her little toes, so she knew I was there the whole time. She did amazing!!! I could not be prouder of her!
We got the CD, and mailed it off to TCI/Dr. Rekate.
He has emailed us saying she is quite unstable at the occiput & cervical spine ligaments. He would like to either have a Skype consult or face to face consult with us, to discuss more. We have set up a Skype time for Nov. 17th.
So till then... we wait....

Kaylie at her school's jog-a-thon

 On another note.... we had the Oklahoma ASAP Walk & Roll for a Cure on Sept 20th!! It was amazing! Everything went so well. We had 352 walk participates, and we raised $13, 220.00 for research! I cant thank all of our sponsors enough, and all the volunteers that helped me put this event on! Thank You!!
Our other sponsors (which had their own banner) were: SHAWPC, Dr. Shon Cook,
The Chiari Institute: Dr. Harold Rekate, then all of the above and in the pic were on the back of the walk shirt, along with:  4imprint, Bricktown Clowns, GoGo Squeez, Starbucks, Small World Pediatric Dentistry, A's Towing & Recovery, Dr. Archana P. Barve, DJ Paul Camacho, Max Tuepker, and Dr. Joanne Pham


Kaylie & her friend Brinlee

My Supportive Family!

Ben & Kay

The whole walk

Chiari & Syringomyelia Patients of Oklahoma

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