Kennedy is very excited today because it is "Field Day" at her school. Ryan & Kyle used to get really excited about it back in the day as well, because that school does an amazing job and a lot of fun things with the kids. She woke up this morning saying, "Happy Field Day, Mama!" A good dose of sunscreen, a hat, and way more energy than I ever have this early in the morning and she bounded down the front stairs and was off to have a blast at Field Day. I'm still on coffee number one; after writing almost 6 hours of exams yesterday, I need more than one.
This weekend is my first weekend "off" of crazy studying for a while with 2 exams down and a week before my stats exam, so you never know what Kennedy & I will be up to; I'll post some pictures later on in the weekend. Have a great weekend, everyone!
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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
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1 comment:
Happy Field Day Kennedy!!! I am sure it was a lot of fun!!
Hugs,
Crystal and Eva
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