November 10, 2011


My buddy, aside from the extra chromosome, is a healthy little boy.  Yet that extra chromosome demands so many different doctors appointments.  As a newborn we saw a heart doctor for an echo-cardiogram and a pulminologist to try and figure out why he couldn't kick the oxygen.  We were so relieved that my buddy didn't need open heart surgery or a feeding tube or any other surgery for that matter.

He has had about 9 complete blood counts done.  Imagine holding down a screaming child with super chubby arms surrounded by at least 3 nurses attempting to find a vein.  The easiest one was done when he was born.  They took him down to the nursery and when I headed down there to see how he was doing, I almost lost my cool on some nurse.  My buddy was lying under the french fry warmer with one of those blue surgical sheets over his stomach with the opening over his belly button.  He was lying with both arms and legs out not moving at all.  Turns out he liked the heat and fell fast asleep.  They opened his belly button and got the blood they needed and closed it up like new.

We've seen an eye doctor 3 times, had 8 hearing tests all followed by appointments with the ENT.  My buddy saw a chiropractor for a while to help with misalignment that was causing excessive spit up.  All this is on top of the usual pediatrician appointments.  For a while there it felt like we were always at some doctor or another.  My buddy does tend to get sick often and he usually doesn't kick it until it turns into something major and he hits the antibiotics. 

I am heading to the CT Down Syndrome Congress annual convention in a few days.  I will learn about even more tests and procedures that are now being recommended.  We have been very fortunate that my buddy has no major eating issues or health concerns.  I want my buddy to be as healthy as he can be.  But some times I just want to whine a big, "I don't wanna," when I think about adding another test to the list.

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