We got a very nice letter from the VA Department of Health yesterday. It was to let us know that they’d been notified that Declan has special needs, and that they have some programs available to help him. Reading through the information I found that he is is in a State database of children with birth defects.
I really have no idea if I will become used to this, but seeing the words “birth defect” really had an impact on me. Even now, typing them and “special needs” is on the hard side. I know that we are fortunate, and that so far Declan doesn’t seem to be having any develepmental problems, but nothing can change the fact that he has a birth defect. “Birth defect” will be something that he carries with him throughout his lifetime. It just seems kind of harsh if you know what I mean.
I am glad to have received the letter. We will almost certainly be taking advantage of some of the programs they were writing to tell us about. Life just loves slapping you with some reality every once in a while though, doesn’t it?
In other news, a few weeks ago Declan went for a follow up with his neurosurgeon. His shunt is doing what it does, and Declan isn’t having any problems with the fluid draining from his brain. The Doctor believes that the place where the fluid should be draining has a buildup of calcium and this is what caused the accumulation of fuid to begin with. It sounds like this is good news since this means it probably wasn’t one of the scarier things that can cause hydrocephalus.
There was “something” on the last MRI that the Doctor wants to keep an eye on. It could be “nothing”, but apparently is worth watching. Declan will be having another MRI in the next few months so they can take another look. I guess being on the edge of our seats wondering if “something” really is “something” or could just be “nothing”, is just part of being us now.
At least our kids are super cute! =)
Posted on September 8, 2011, in L-I-V-I-N and tagged hydrocephalus, parenthood, shunt. Bookmark the permalink. 1 Comment.
HA! I figured out how to leave a comment 😉
Rol, the kids are super cute and Declan’s sn/bd status, well you wouldn’t even know it unless someone told you iykwIm.
I love you guys 😀