the mighty max update: wonderful beach day!

Thursday, June 28, 2012

wonderful beach day!

My brother and his family have been in town this week, and we have been enjoying such wonderful adventures together. Today we headed to Larabee for kayaking and relaxing at the beach.

While everyone had such a great time, the definite highlight for me was watching Max independently playing. First he was sitting beside me playing with rocks. Then he quietly started inching his way towards the water....he scooted the entire way up to the water. He did it all on his own and then simply started tossing rocks into the water. He knew what he wanted to do and just did it.

So simple...yet so perfect!

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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.

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