Friday, September 19, 2008

Conquer Chiari Walk Across America

Today was day 11 for Mylee at Vital Stimulation therapy. She did very well and was able to drink 4 ounces from her bottle. Mylee also got to try some veggie chips, meltables so we didn't have to worry about aspirating solids. She did cough and sputter a little but overall had a great end to the week. We still aren't able to feed her at home, but are hopeful that we will get the homework sometime next week.

Tomorrow is the Conqueor Chiari Walk Across America. I belive about 10 states are participating and we are hoping to continue this walk each year. Some of the states including Arizona has been able to recieve a proclamation making September - Chiari & Syringomelia Awareness Month. We have several of our friends and family walking with us tomorrow. It is too late to register for the race via the internet, but pre-registration begins at 6am tomorrow morning at the Desert Botanical Gardens. The walk starts at 7am. For those of you out of state, if you are interested you can still sponsor a walker. We will be walking under Mylee Eaton. Please visit the website at: https://www.conquerchiari.org/walk/ccwaa_sponsor.

I also wanted to mention a Pediatric Chiari Gala taking place in Washington DC in October. Unfortunately due to our pregnancy and the numerous therapies Mylee is needing at this time, we are unable to attend. I encourage anyone of you near the Washington DC area to attend this Gala in Mylee's honor. We need to continue to get the awareness about Chiari out into our communities and to help find a cure! Please visit the http://www.conquerchiari.org/gala/Pediatric%20Chiari%20Gala.htm . Or email me if you have any questions.

Hope everyone is doing well and I will post a blog tomorrow afternoon with pictures from the walk.

xoxox

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