Tuesday, June 17, 2008
Bananas
I just got back from our appointment and the genetic counselor shared the results with us. He said, "I wasn't sure about her. Sometimes I looked at her and couldn't tell. Her features are not so striking (I knew what he meant), but other times I was thinking maybe she does have Downs. She was fooling us." She's such a tease. Mermaid does indeed have three cute little squishy looking #21 chromosomes where most other children only have two. That's called Trisomy 21 or Downs Syndrome. My Hero said, "We put the 'O' in chrOmOsOme."
Then the geneticist joined us and said Mermaid may or may not have Mosaic Downs, but that really makes no difference because some kids with Downs have fewer limitations than some kids with Mosaic Downs and vice-versa. If we really wanted to pursue it, they would have to take different tissue samples and chase it down. But it wouldn't change the prognosis. They had only ordered the "Fish 21" in case the extra chromosome didn't show up in the original karyotype (blood test). We set up an EKG and echocardiogram and we'll meet with an opthomalogist. We spent the rest of the time talking about early intervention which generally consists of physical therapy, occupational therapy (I don't know what that means, yet) and speech therapy. They also gifted us a book, "Babies with Down Syndrome; A New Parents' Guide." Free books, definitely a benefit. All of these regular appointments will alter our freestyle life, but a little structure could be a good thing.
One thing I really appreciated was that the geneticist always referred to "children with Downs"; never "Downs children." I've been doing that, too because I feel that the person comes first. Now, that I've read Plainbellied's post, I know it's the protocol in the communities of people who love and care for children with Downs.
I guess we'll be visiting the geneticist every year moving forward, as well as the opthamologist and probably an audiologist. New friends; benefit. The four year old girl with Downs our geneticist met with before us could read and was starting to write. She carried on conversations with them, etc. My 6.5 year old still doesn't read. We'll just watch and see what Mermaid has in store for us.
Lastly, I asked about sibling workshops or something to address the needs and concerns of our other children. The counselor said, "Oh, they're going to be bananas about her! Children with Downs are so social and funny. They love music and dancing. They'll be just bananas for her!" Of course, we all are!
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3 comments:
Hi,
You have a friend, Peg, and I am her niece. I too have a daughter with Down Syndrome. My girl is 9 months and doing great. In fact, she looks SO much like your cutie. It sounds like you've got a great attitude. I found out about the DS when I was 12 weeks pregnant, and struggled for a bit. But, having my daughter here now is awesome. She is amazing, and we are meeting ALL milestones. We may be at the tail end- but we are working hard and making it. Good luck on your journey!!!
I don't know if you recall meeting me, but I lived in Germany with your other 3 sisters and have enjoyed reading your posts along with your little sis! I commend you for you wonderful perspective and attitude with your little mermaid. I think it will make a world or difference for her not to sense any turmoil in you. She is so adorable. I hope you will keep the photos coming! :)
Hi Lucky Mom,
Yes, Peg sent us an email about you and what a wonderful outlook you have and how well your daughter is doing. I'm glad you're joining us.
P.S. I think Peg said that you're in D.C. We're there every few months. Maybe we could meet up sometime.
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Rachel,
I remember you! Isn't there something about bucket-head? I hope I can fill Mermaid with love and when she does sense turmoil at least I can point her towards my solace, my Savior. I'll get some more photos up. Thanks for joining us.
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