January 27, 2010
I keep forgetting to write about one thing we did do for Trey early on and that was to get him a DOC band (helmet looking thing) when he was 6 months old. Trey's head was misshapen from birth, I noticed it early on and was told many times by our pediatrician his head would be fine but it never changed. His head on his affected side seem to be larger and that was with looking down so it was not do to the microtia or HFM. I found Craniotechnologies here in Phoenix and requested a referral. This was something I didn't want to do and to be honest it was for selfish reasons. I didn't want people to think I was a bad parent thinking I let my kids head get flat though I know that is not what happens. But honestly it was the best thing we did. He only had a mild case but enough that our insurance company would pay for. It gave Trey more symmetry to his face by making his left eye appear smaller, it was always bigger and I swear he was never able to close his left eye all the way (lots of eye infections that miraculously stopped after the band). I did read in one article on HFM that many kids will have some plagiocephaly (medical term for misshappen skull), usually a flattening on the skull on the affected side above the eye. This was one of Trey's issues but the main reason his left eye looked larger. Though his plastic surgeon did not feel it was related, I am sure it is. I have seen pictures of to many kids with HFM whose head shape looked like Trey's. The band was so easy and the people at cranio technologies were wonderful. Of course the band had another side effect, it brought attention to him. I had to get use to people asking questions or making comments. I really don't mind, I am all about educating people so when I am asked questions I get that opportunity. My motto is if you have a question, just ask I rather give you my answer then you just coming up with your own right or most likely wrong. Trey was also diagnosed with torticollis, he holds his head a little to the side, we did physical therapy at home with instructions Craniotechnologies provided us. I am sure we didn't do it enough because I still see it today especially when I take pictures but so far I am not sure it is a problem or will lead to one, well lets hope not.
Posted by Stephanie at 1/27/2010