Monday, October 3, 2011

Down Syndrome…the ins and outs of one kid with the extra chromosome.

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It is Down Syndrome awareness month. We, the parents, are supposed to tell you what it means and how it’s not a scary thing and how your life will not be over if your child is born with it! I know that my own knowledge of Down Syndrome was limited before Jimmy was born and the one fear I had right after learning about Jimmy was how would I control him when he’s bigger than me! Crazy, right?

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I learned that people with Down Syndrome have low muscle tone and that’s why it takes them longer to learn to sit, stand, walk etc. They are also smaller than typical kids.  All kids with Ds (Down syndrome), like everyone else in the world, are born with different strengths and challenges. One of Jimmy’s biggest challenges was and still is his low tone. He was low compared to many kids with Ds. His low tone has affected his ability to drink, talk, sit, stand, walk etc. The hardest thing about Jimmy being unable to do those things was having no idea when he would be able to do those things.

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Here is a list of Jimmy’s accomplishments along with his age (just FYI Jimmy has friends with Ds that accomplished many of these things at a much younger age). 

Jimmy holding his head up – 3 months

Jimmy rolling over – 8 months

Jimmy sitting with a little support – 12 months

Jimmy putting himself in the sitting position – 16 months

Jimmy pulling up to a standing position – 22 months

Standing up by himself – 27 months

Walking – 3 years and 2 1/2 months (but who’s counting?!)

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Some other random facts: Kids with Ds tend to have one teeth abnormality that range from their teeth being shorter, getting them when they are older (Jimmy got his first tooth when he was 18 months old), and/or being sharper (when Jimmy bites his tongue, he makes it bleed).

Approximately 33% of kids with Ds have a thyroid dysfunction. Jimmy is one of those and he takes a pill every morning to regulate that and has to have his blood checked twice a year to make sure the dose of Synthroid is working.

Between 38-90% of kids with Ds have hearing issues. Fortunately, with aggressive treatment and regular checkups 98%  have normal hearing levels. Jimmy has hearing issues but with tubes and antibiotics (only when he has an infection) he is doing great.

Approximately 100% of the kids with Ds are special and touch the heart and soul of everyone they meet.

As a parent of Jimmy, I am happier because of him, I love more because of him, I accept myself more because of him, I smile more because of him, I relax more because of him, I feel joy more because of him, and I am excited and thankful to watch him grow and touch the lives of everyone he will ever know.

Jimmy isn’t scary. He’s cute and sweet and loves to watch Signing Time and to dance, dance, dance!

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5 comments:

  1. Great post. Love it AND JIMMY! Jack does too.

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  2. Christi, you and Marc are an inspiration to all parents. I am in awe of all that you do and we are so happy and thankful to know and love Jimmy.

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  3. Great post, Christi. I'll have to have you write it over in Spanish to share the next time I have to give this news to a patient in my practice! Watching families overcome their fear and sadness when they learn of the diagnosis to the same sense of joy and pride as they watch their child grow and develop (on their own special schedule) is one of the great privileges of my job as a pediatrician. Jimmy IS special....as is every child I know, in their own way. I appreciate you sharing your journey with him on your blog!

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  4. This is awesome. When I was pregnant with Tabitha, there was some marker on her sonogram that led the OBGYN to think that my chances of having a baby with Downs was higher than normal. I didn't do the blood test because I didn't want to know if she did have it or not -- it wouldn't have made a difference to us. But I always did wonder what our lives would have been like if she did have it. This was great. Thanks for giving us a peek into your life on a regular basis!

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  5. this makes me smile :) love you christi! xo

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