the mighty max update: more snow!

Lots and lots of more snow indeed! I think yesterday we got about 6-8 inches at our house...absolutely beautiful! After getting all bundled up and staying out of the wind, Max liked it too. :)

Before it got too crazy, Bill drove me around to the school, bus station, therapy center, etc. so I could deliver Max's presents to his wonderful team. My very favorite was the "bus driver survival kit," and the response was so sweet!

We are incredibly blessed to have such a dedicated, encouraging, and knowledgable team, and I hope they realize how important they are to our family.

Happy "snowday" Bellingham...enjoy! :)

charge syndrome

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

For more information, visit http://www.chargesyndrome.org

Thursday, December 18, 2008

more snow!

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