Re: Re : Appointment for Genetic Test

[Guest guest]

Dr.Rosenbaum said he would diagnose it by measuring the telecanthus

(nose bridge), and other measurements on the face. Truly, I sort of

thought he was nuts but after he explained it, I think he could

probably diagnose, maybe not 100% from 1 ultrasound, but from a few.

A baby can open their eyes between 24 -26 weeks. Lily never opened

her eyes before her surgery. That would be hard to miss on several

ultrasounds. I saw a friend's ultrasound and the baby had big eyes

wide open, I couldnt' believe it.

Sharon, I bet you could have recognized it easier than doctor!

> > >

> > > Hi to everyone but especially those I met in London.

> > >

> > > I have been trying to keep up with everyone's postings and it's

> > great

> > > to hear everyone is doing fine after their operations. Many of

> > the

> > > postings reminds me of my own operations 20 years ago. There

was

> > so

> > > little information for my own parents and I, that I just got on

> > with

> > > things and never gave it much thought for 20 years until

> > recently. I

> > > have an appointment at a genetics specialist tomorrow so this

may

> > be

> > > the start of providing me with some answers at long last. I

have

> > > found it difficult getting this referral and I have my

collection

> > of

> > > downloaded information to provide for them because they may not

> > know

> > > anything about BPES. I'll let you know how I get on and I have

> > > another appointment at a local woman's clinic on Thursday.

It's

> > > getting I little difficult at work for time off so I have

annual

> > leave

> > > tomorrow as I have not explained fully to my manager yet. Thank

> > you

> > > all for your continued support as I find posting is very

> > therapeutic.

> > > Take care everyone,

> > >

> >

>

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[Guest guest]

I believe you completely, I doubted it for a minute when he said it,

but when I thought about it, now that I know what Lily looked like as a

newborn, I really think a doctor or parent could spot it. Operative

word here is could, not definitely but possibly depending on the

picture. Also I think parents just have instincts.

I was really impressed with Dr. Rosenbaum. It was a good day for our

family, to talk to someone who is experienced, it lessons

the " aloneness " factor.

>

> This may sound strange, but I knew Tina (Younger daughter)had BPES

from the

> ultrasound scan (sonogram). I dont know if I still have the image.

She was at

> least 4-5 month when I had it done

>

> I told everyone b4 she was born, The clincher for me was the bone

structure

> of the face. So this Dr is not nuts. it is possible.

>

> Joyce

>