So what the heck is happening?Posted: February 11, 2013
Friends and family, you are probably wondering what the heck is going on in our neck of the woods. I get it. One day you are just going along, minding your own business. You fiddle with your smartphone, because you can’t help it, and you have another email. Joy! Hope it is something fun, not just a Groupon email. What? Your baby has Down Syndrome? The baby you just had? The baby I’ve seen pictures of?
Yeah, we were just as surprised. Right now, since he was born at home and just got the diagnosis, we’re in the process of screening him for all sorts of health issues more common in babies with Down Syndrome. As of right now, we have no indication that he has any health issues at all. (Please go find some wood to knock on right now. Thanks.) Be that as it may, there are lots of things that are hard to detect in babies. Three different doctors, a nurse, and a midwife have all listened to his heart, and think it sounds pretty good. Apparently, however, it is possible that LP might have a congenital heart defect that doesn’t present with an audible murmur. So that means we are going to go have the ticker looked over. It is also common for babies with Down Syndrome to have issues with their vision and hearing. While neither Latke nor I think this is so (he seems to see and hear just fine), we think it is important to check, since vision or hearing loss at this point in his early life could have a big (negative) effect on his later ability to speak and learn other important skills. We might see a geneticist. I’m unsure on that one, more later.
I promise I will try to keep this blog updated as we go through those appointments. To be perfectly honest, it makes me a little uncomfortable to constantly talk about medical stuff. Part of it is that I don’t want people to feel compelled to wish us “good luck”. Because what will I say if it isn’t “lucky”? We did beat some pretty stiff odds for LP to have Down Syndrome in the first place. 1 in 900, in fact. I’d rather not repeat the same info a bunch of times. But I also just plain don’t like doctors and hospitals. The whole process is kind of lame. Insurance checking, waiting, getting your questions half answered, filling out the same &%*&#@% information over and over again, the list goes on. Rehashing that experience is part of the lameness. So I’m hoping everyone can just check in here, and they’ll know if anything important is afoot. Deal? Deal.