Re: Waiting for Confirmation-

September 25, 2010

,

Sorry it has taken so long for the reply, I just started a new job and I am

always so tired when I get home. My daughter is 8 now and has been wearing a

brace for a year or so. She did have other problems and we were told at the 20

week ultra sound that there was a risk there was some kind of abnormality

because of the single artery umbilical cord. She had an extra thumb at birth

and has had hernia surgery. She has some abnormalities in various places in her

body above her hips, no problems below. I experienced great frustration in

trying to find care for her when she was an infant. The impact on our life has

been huge, most of this impact has been dealing with what to do and who would

treat her, etc. Getting a dr. to recognize that there was something wrong was

like moving mountains.

Honestly, the hardest part has been getting a doctor who our insurance covers,

to actually think about her case when we are in the office. We travel from

Chicago to Philly Shriners and although it is far, I just can't handle changing

to another one at this point. She absolutely hates her brace, but she is highly

distractible, so once she is distracted, she stops thinking about it.

It sounds like your son is doing well, did they take any x rays yet?

> > >

> > > Hello everyone! My name is and my 4-month old son was

just referred to a peds ortho specialist for congential OR infantile scoliosis.

We don't know yet. I am thrilled to be connected to you, and I have already

taked to over the phone. Although we live in VA, we are seeking

admission to Shriners in Philly to avoid lots of " wait and see. " That being

said, we don't know ANYTHING yet regarding 's COBB, etc. We have not had

XRays done yet, because our pediatrician wants the specialist to do them. Any

advice about what to expect at our first appointment? If anyone has seen Dr.

Cahill (at Shriners, if Jax gets in)-what has your experience been with

him? I'm hoping we get good direction right from the beginning. Also, in WHAT

cases is it okay to " wait and see " if ever? Any advice would be greatly

appreciated! Thanks!

> > >

> >

>

Recommended Posts