Tough Day

[Guest guest]

Hi Everyone,

We went for our initial consultation at One Step Ahead in Mayfield OH

regarding getting 's DOC Band. Well, when we got there the PT

said that our neurosurgeon had written craniosynostois on the

order. She was concerned about this because the band is contra-

indicated for cranio. I don't understand this because has not

yet had his CAT scan, and I thought that was the only way to

diagnosis cranio. I got very worried that maybe he suspected cranio

instead of plagio. Can they tell without a CT? I'm very upset about

it and just have to stew since I can't call his office until Monday.

The PT at One Step Ahead tried re-assure us that the neurosurgeon

wouldn't be able to tell if crano without a CAT scan. But then

why would he write that on the order?

It was just a really bad day all around. Almost six hours on the

road! It was too much, I think we will be staying over from now on.

Add hotel costs onto our final bill! We are exhausted and it seems

like we got nothing but bad news all day. The PT said that has

bracy and that his head shape is one of the hardest to correct. WE

should expect two bands and might get only a 50% correction. I

anticipated higher correction since he is only 7 months. She also

told us that she has never seen our insurance cover the DOC band.

Wonderful!!!!! She also felt that we should get him into physical

therapy because he is not sitting up on his own at almost seven

months. She attributed that to not having enough tummy time to

strengthen his back. Why didn't our ped. pick up on weak muscles and

recommend some physical therapy earlier? Of course they we the ones

telling us his head would round out on its own so I guess I shouldn't

be surprised. I have felt so let down by the medical community

lately. Just when I thought I was coming to terms with my guilty

feelings about all of this, another wave hit me really hard while we

were there today. It was all I could do not to cry during our

meeting. The PT was trying to be helpful but after all that bad news

she had lost me by that point. She was very nice, and very

knowledgable, but I got the feeling that she had lost touch with how

hard this can be on parents when it is all new to them. I wish so

bad that I had never taken lamaze classes. They were the ones that

scared us so bad about SIDS that we were terrified to even put

on his stomach for naps during the day. Even though no one warned us

about plagio, or stressed the importance of tummy time, I feel like I

should have somehow known and that ultimately it is my fault. I just

don't understand why this all has to be so hard? All I ever wanted

was what was best for my baby. So jealous of people that have babies

with perfect little round heads right now. I'm sure I will feel

better in the morning. Right now I'm tired, overwhelmed, and having a

pity party for myself. Sorry about that, and thanks for listening.

ps sorry this is so long