Thursday, September 10, 2009

As if things weren't already hard enough as it is...


Let me start with the good, Jude turned one month yesterday! Exciting, right? I tried to take pictures of him, but he kept being cranky and uncooperative, plus I haven't uploaded the ones I did get onto my computer yet. Here's one I snapped with photo booth on my laptop though, he had just pooped when I took it. The milestones he has already reached are pretty amazing.
-He's very alert.
-He can hold his up very well & for longer periods of time everyday.
-He looks around at everything & I think he actually has favorite things to look at, like the toys on his baby gym, the fish tank, a green kitty rattle, and me of course.
-He sometimes smiles, but he won't do it for the camera, or I'm too slow to catch them because they come and go quickly.
-He can sometimes roll from his tummy to his back.
-I don't think he knows he has feet yet.
-He makes happy little squeaky noises instead of just cranky ones.

I picked up new diapers last weekend! I got the chinese prefolds, I just started using them yesterday because it took me that long to pre-wash them in between all the other laundry loads and Judey cries. So far, so good with these, now I just need to get my order of crunchy clean in the mail.

Now the stressful...
We saw the plastic surgeon last week (I know, I'm late on updating things). She told us that the skin tags by his ear were extra cartilage & were sometimes indicative of the inner ear not forming completely & ordered a formal hearing test to check. She said we would tentatively schedule the tag removal surgery for November. She was also concerned about the wedgedness of his noggin & ordered a CT scan to see if the metopic sutures are fused. After my mum researched it, we determined that he more than likely has craniosynostosis and that's what they're scanning for. It's extremely rare, about one in 2500-3500 children get it. After looking at pictures of kids with it & then looking at Jude's head, there's no doubt in my mind that he has it. He doesn't show most of the common symptoms of it, which is a good sign that we caught it early I guess because it does inhibit brain growth. It would need to be corrected with a surgery that reforms the skull. We go in for his hearing test & CT scan tomorrow morning at children's hospital. We haven't gotten the official word on if he does or does not have this condition quite yet, but I'm bracing myself for he does just given the pointyness of his head. All of this is probably going to delay my getting a job unfortunately. I wouldn't be able to work & cope with a serious baby surgery at the same time. It would mean that his tag removal would be postponed, because there's no way he's going through multiple surgeries before he turns one.
"Don't forget, you were going to love him if he was the one in two-hundred that had Down's Syndrome. This just makes him even more special."- My mum.

3 comments:

  1. Jude IS and always wil be special and a very much loved little boy. Gretchen

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  2. I'm sorry to hear he might need more surgeries, Kayleigh. I hope they figure out what he needs and can give it to him.

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  3. Even if your kid has a tail and downs syndrome and has some special disease where his skin is made of sandpaper I still really want to meet him.

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