the mighty max update: reuben and caleb

Saturday, August 11, 2007

reuben and caleb

Please continue to keep Max's friends, Reuben and Caleb, in your thoughts and prayers.

Reuben had a successful extubation this week, which was amazing! The relief and love is overflowing in the photos! But now we need to ensure he continues to breathe independently without overexerting himself. I *believe* heart surgery may be the next step.

Caleb is having a difficult time and his parents are very concerned. He has a possible infection and this is very serious in a kiddo with no immune system. PLEASE send lots of love and prayers his way.

Thank you everyone...what a journey our special children endure every day!

1 comment:

Unknown said...: i have posted to my blog bout them to and about max coz i thought he was in thehosp; August 11, 2007 at 5:44 PM

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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.

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