Re: Hari Priya, Mihir

[Guest guest]

Hi Hari,

Welcome to the list, and congratulations on the birth of your son.

I have a few suggestions:

1. Contact n Norbury (www.chargesyndrome.org) and get a copy of the

Manual as soon as possible!

CHARGE Syndrome Foundation, Inc.

2004 Parkade Boulevard Columbia, MO 65202-3121 Phone:

or Contact: n Norbury n Norbury:

(Executive Director) marion@...

Meg Hefner

(Genetic Counselor): meg@...

2. Track down Brown at California Deafblind Services (San

Francisco) - tel , also as soon as possible - he's

brilliant and compassionate and will be a wonderful resource for you and

your family!

3. Take a deep breath and try to get some rest ;-) As others on the

list have said, it all gets less overwhelming after a while (most of the

time)...

4. What about Mihir's vision? Is there any evidence of Coloboma? That

should be checked out by a specialist (ie. a genetic ophthalmologist who

is familiar with the condition) as soon as possible...

5. It's not too early to start reading, singing, talking to your son.

Stimulate, stimulate, stimulate all the senses - vision, hearing, touch,

taste, smell etc. Even if some of the senses are compromised or

incomplete, you can connect with whatever is present. BTW - how do you

know he " failed " his hearing test - were they able to quantify his

hearing deficit, and did they use an ABR test?

My daughter had two heart defects at birth; the 4mm PDA didn't close by

itself so after several rounds of prophylactic antibiotics for dental

work etc. at 3 1/2 years old she had a catheterization to install a coil

in the duct to close the hole. It appears to have been successful.

Don't hesitate to ask this list all your questions... I am sure that

SOMEONE has already been there!

Best wishes,

Anne, mom of Penina (CHARGE, 7)

Montreal, Canada