the mighty max update: papa and grandma mary

Thursday, November 8, 2012

papa and grandma mary

Papa and Grandma Mary visited the weekend after the campaign and enjoyed some great playtime with all the grandkids!

My favorite moments were on Sunday after church. Mary and Dad sat with Max and drew pictures and used fun stamps. Dad drew caricatures of everyone and then Max traced them...it was pretty cute! And of course, Max showed off his amazing spelling skills!

Then we played Sign Language Bingo, and Papa and Grandma Mary got to learn some new signs. It took a little while but Max started getting the concept of the game...fun!

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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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