The conference and vacation was great, although Kennedy came back with a nasty cold. We are on hold with the after-hours clinic, hoping to get an appointment as I think she's got an upper respiratory infection. Other than that though, we had a great time and she really enjoyed her first conference. I've posted some pictures from the conference here and there are lots more to come.
More later, still unpacking...
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July 30- Aug. 2, 2015 - Chicago
Chronicling the adventures of one amazing, funny, sweet, outrageous young lady, who happens to have CHARGE syndrome!
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A welcome message from a young Kennedy circa 2006!
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What is CHARGE Syndrome?
From the
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.
Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.
One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
12th International CHARGE Syndrome Conference
July 30- Aug. 2, 2015 - Chicago
Kennedy's Friends and Links
- chargesyndrome.info (Kennedy's Old Web Site)
- CHARGE Syndrome Foundation
- 3 Little Bees
- Adele
- Alexis
- Alice
- Alissa
- Aman
- Amelie
- Ben
- Brady
- Burke
- Caelan
- Caleb
- Chelsea and Olivia
- Cheyenne
- Definitely Deaf
- Ellen
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- Eva
- Evan
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- Gannon
- Gracie
- Jeff
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- Kurby Family
- Lily
- Lucas
- Luke Snyder
- Makenna
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- Mighty Max
- Mom on a Mission
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- Reuben
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- Super Jack
- Vivian
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3 comments:
Glad you all made it home ok and I love the pictures you took!!
Hugs,
Crystal and Eva
and i love the pics to lis u r soooooo wonderful hope kyle enjoyed it
lis go view http://mkweindorf.blogspot.com/
then put to ur links its a new charge blog theres a post botu it in my blog go c hugs ellen
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