I don't know, I've been trying to think up something positive to write about - but I keep thinking of a few of our sad realities. So, if you don't feel like a bit of a depressing read: Stop. Reading. Now.
Before I had Aidan, I had no idea about all of the health concerns that go along with having an extra little chromosome. I didn't know that roughly half of the babies with Down syndrome have a heart problem. I didn't know they were more susceptible to leukemia, thyroid problems, digestive problems, respiratory problems and vision and hearing issues. I wasn't in the loop. On the day he was born I was handed the book: Babies with Down syndrome: A New Parent's Guide, and read the checklist that scared the crap out of me.
Now I'm in the loop, and we have regular doctor's visits and many, many blood tests. Aidan's already been diagnosed with an underactive thyroid and takes medication to help with that. He has food sensitivity issues (milk and soy), glasses that he refuses to wear, and I've already mentioned the three holes in his heart that are now fixed (thank God for that).
What I just learned, from James last night, is that Aidan's life expectancy is currently at about 55 years. My heart sank. How can this be? James said, "but that's better than just 10 years ago, so we've got that to be thankful about."
Still, it felt like I was kicked in the stomach. I had pictured Aidan becoming a sweet old man.
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1 comment:
Awww, Carol...hopefully by the time Aidan is 55 the life expectancy will be 85. I know it's hard but remember the fun stuff and try not to think to hard about the bad stuff.
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