Our family has a lot to be thankful for this Thanksgiving. We are thanful for Evan's continual improvements in health and development--it seems like he is doing something new almost every day. We are thankful for all the love and support we get from both sides of our family. We are thankful for all our wonderful friends and neighbors--those we have known for many years as well as newer friendships. We have met so many incredible people not only in the CHARGE and special-needs community, but also as close as our own street.
Our thoughts are with families who have recently lost children, or are battling serious illness, or frustrations with transitioning to life at home after a long hospitalization (Thanksgiving 2005 for us was full of worries about that last one).
What is CHARGE???
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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November
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- Elfed
- Thankful
- First Snow of 2007
- The Bee Movie
- Two Bottles
- Washoe
- Remember when you had this much energy?
- Evan ate three times today!
- Carrot Snot
- November is Prematurity Awareness Month
- Night Party
- BAER Results
- The "Opposite" of Eating...
- BAER Hearing Test Today
- First night in the big boy bed...
- Great Day at PT
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November
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2 comments:
Hugs and Happy Thanksgiving to you all!! Evan I hope you have some great and wonderful new taste today.
Hugs,
Crystal and Eva
Hello There,
Evan, I just love that picture of you with the lovely tree. I can't believe you've had snow already! It was 65 degrees here today and now it's 35 and getting colder. Crazy weather!
Hope you've had a good weekend. I had some Sweet Baby Rays the other day and thought of you! It's our favorite sauce as well. In fact, Ray is a nickname of Peyton's. Long story.
Keep up the eating!! Tate's doing Vitalstim like you but he's not so fond of it some days. I think they push him a bit too much.
Love from MO,
Corrie
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