Re: helmet options/new pic

[Guest guest]

Manon,

I'm so happy to hear that you're seeing wonderful results for

already!

I really tried to press upon Dr. Trovato's secretary the urgency of

seeing Liliana ASAP because of her condition and age. But she only

does clinic on Mondays. They didn't give me an appt. until October

10th!!! I will call again to see if I can get in sooner to have a

good, informed, helmet-friendly neurologist asssess her. When they

gave me that date I asked if Dr. Trovato would refer me to another

colleague. She would refer to s Hopkins for neurological issues,

but JH doesn't believe in banding/helmut therapy. I thought I was

fortunate to live near JH because they were leading edge...?

In the meantime, when I called Cranial Technology in a panic over the

appointment date, they referred me to Dr. Dufresne who is a

craniofacial surgeon in Fairfax. We're seeing him on Thursday evening

at 5:30. According to CT, the clinic opens then and sees patients on a

first come, first served basis. I left a message there to verify

that's the way it works. Supposedly Dufresne knows all the ins & outs

of how to do this with insurance- the script, letter of medical

necessity, etc. I think I saw his name on this website also. I see

conflicting info regarding Blue Cross's Federal Employees Program. One

person reported coverage of 90%. CT said they're likely to cover $900

of the total cost. I'm going to call my insurance company to find out

for certain. Regardless of how much they pay, my husband and I

definitely want to try banding.

So we have the initial consult & casting date on Friday morning.

Kelsey, the absolutely fantastically helpful insurance person on-site,

pushed us on the schedule to combine the consultation and measurement

for casting at the same time. And we already have our fitting

appointment for two weeks later. Of course this is all assuming

Liliana's fontanel isn't too far closed to reshape the skull.

I still feel guilty, despite all the kind encouragement not to. But I

am doing the best I can now. I can be thankful that I found this

info-packed website and very helpful, comforting sympathesizers.

~

Columbia, MD

Liliana possible banding 9/2

> > > > > Now that I finally realize Liliana definitely

> > needs correction for

> > > > her

> > > > > brachy, I echo anxieties for the next steps.

> > > > >

> > > > > Her pediatrician said her front fontanel is

> > almost closed so I am

> > > > > hoping that it is not too late for treatment.

> > He actually said

> > > > that a

> > > > > few months ago, banding would have been an

> > option but at her 3, 4,

> > > > 6

> > > > > month appointments despite my concerns, did

> > not send me on to an

> > > > > orthotist.

> > > > >

> > > > > After looking at the helmet selection, I'm a

> > little overwhelmed. I

> > > > see

> > > > > one Docband labeled for brachy, is that the

> > only one? Of course we

> > > > > don't have an official diagnosis yet. I don't

> > think Liliana has

> > > > much

> > > > > assymetry in her face including her ears, but

> > she does have a

> > > > slight

> > > > > head tilt. It may be that I'm used to the way

> > she looks.

> >

> === message truncated ===

>

>

>

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