Monday, July 28, 2008
The Down Syndrome Clinic
We have an appointment at the Down Syndrome Clinic. Not until NOVEMBER, but at least it's something. We have heard the wait is sometimes a year. The clinic has several therapists and doctors and they do a complete evaluation and recommend a course of treatment. Then we will return every year or so to follow our progress and reevaluate. The appointment lasts several hours (what appointment at TCH doesn't?) and should give us some good feedback. We have heard from several parents that this clinic is a MUST so we are glad to get an appointment. They also have social workers to help us with all of the government programs and lists that we should check out and add our names to the waiting lists. Some of the waits are very long, including the ones for group homes, so we need to get started NOW so that we are not left without when we really are needing. It's so inconceivable that we need to plan for the time when Justin will want to leave home. He's still my baby!
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3 comments:
I just found your blog today. My daughter has DS, also. She just turned 1 this weekend. And like Justin, Ainsley needed heart surgery. She was 3 months old and did exceptionally well. My prayers will be with you--I know how difficult this time can be. God has a plan for Justin's life and it is a GOOD ONE!!! Blessings to you and your family, especially Justin!! --Jen
Thank you so much Jen! Is Ainsley doing well now? What sort of advice or recommendations would you give me? Anything helps! And Happy Birthday to Ainsley! I hope it was a fun party. --Danielle
Hello!
I came across your blog and just wanted to say hello. I have 2 girls, Mira is 10 and Sophia (with DS) is 8. Your posts really brought me back to Sophia's first year. She had an ASD repair 3 days after her first birthday. the surgery had been rescheduled 3 times! It was very frustrating but hers was considered elective at that point because she wasn't in duress (not sure why anyone would wait until their kids was in duress to do surgery??) So, we postponed because of 2 colds and got bumped once. In any case, she had surgery at 7:00 a.m. on a Friday and she CAME HOME on Saturday afternoon. And this was open heart surgery! It is amazing how resilient kids are! We have not looked back since! She is an incredibly happy, loving, lovable little girl. Having a big sister greatly helps and being a big sis (or brother in your case) to a special needs sibling really creates some unique traits-tremendous compassion, kindness, and lots of the "regular" sibling stuff like fighting over toys and clothes :) If I could give you some unsolicited advice...take it one day at a time and enjoy each day! It truly goes by so fast and early on I was so freaked out I didn't thoroughly appreciate the infant stage. Everything always turns out okay :)
Visit my blog to see our pretty "normal" life:
http://lovingsophia.blogspot.com/
also check out www.gigisplayhouse.org
Jessica
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