Joy

Wow - I can't believe how long it has been since I last updated our family blog. Actually a little embarassed, but better late than never! Mylee has been enjoying preschool and Khloe is growing up right before our eyes... We have traveled quite a bit and now will be home for the holidays.

Our trip to North Carolina, Victory Junction was a blast! It was so much fun to meet all of our Chiari families that we have been in contact with since our journey began. The camp itself is amazing and most of all Mylee was able to be herself and just have fun!

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Thankgiving was also a lot of fun. We were able to visit with friends we haven't seen in a couple of years. All of the kids played so nicely together. We had a holiday party with Santa on Saturday after Thanksgiving. Both Mylee and Khloe sat on Santa's lap...it was so cute!


We are homebound for Christmas this year. The tree is sparkling with beautiful lights and the stockings are hung with care - in hopes that St. Nick will soon be there.....


Mylee is doing well on the medical front. I mainly update her caringbridge page with our daily status. We are currently in the process of determining her new diagnosis. She is being tested for a Mitochondrial disease and will go in this week for testing at St. Joseph's hospital. We are in discussion of her having a muscle biopsy done and if so, we will need to decide if we have it done here in Arizona or travel to a more advanced hospital that specializes in Mitochondrial disorders. More than likely traveling to Cleveland, Ohio to see a doctor by the name of Dr. Cohen. We will keep everyone posted. Mylee's caringbridge site: www.caringbridge.org/visit/mylee.



I promise to update more often....until next time!