The letter V in VACTERL is proving to be a difficult letter. Last week, Evan had a CT scan to see how the two vertabrae are coming along (extra piece in the middle of his back and one in his neck). Since he was born, we thought for sure we would be having a surgery to fix the one in the middle. Turns out the extra piece isn't affecting him yet. Often the spine starts curving at more than a 10 degree angle and then an operation is certain. But Evan is chugging along with a less than 10 degree angle and there is a good chance he will stay that way.
It's the little bugger in the neck that we are worried about. We were never even told about it until last year and now it is a waiting game. I don't even know what we are waiting for. I guess 2 year olds don't have fully developed vertabrae in the neck. So we are waiting another year to see how his spine up there in his neck develops. And what if it develops wrong? Then what??
The doc said that he is doing amazing and there are no restrictions for him. Jumping off the couch and doing backbends? Totally OK! So I will try to not be stressed out about it. I'm sure when I get the surgeon's notes in the mail I will google everything and freak out. But I will try my best to just be happy and enjoy life with him.
1 comment:
Hi! I stumbled across your blog this morning while doing a search for VACTERL...my 2-year-old son also has this (VACRS).
I'm also fed up with the V stuff! It's like every appointment we hear the same things: 1) some new weird hemi-this or fused-that, 2) it doesn't look good, but 3) it's not bad enough to do anything about, and 4) come back in x-months for another x-ray/scan/whatever to see if the bones have calcified enough for a better image. It's like good news and bad news all wrapped up into one. So frustrating!
Your little guy is so cute. :) Just wanted to say "Hi" and that I totally understand.
- becca
Post a Comment