We met our daughter when she was 10 years old. She came from a home of gross
neglect. It took us 2 years to get her diagnosed with Sticklers Syndrome. She
has the facial features, sub-mucous cleft palate, vision and hearing
difficulties. She had her facial reconstruction done at 15 years old. We have 6
kids. I am amazed at how fast the younger kids bounce back and heal soooo
quickly from surgery. It's much, much better to have anything like that done
early. Of course, you're going to be anxious and concerned. Keep in mind that
your little one will heal quickly and not remember the experience. It is
astoundingly incredible what they can do!
 
Good luck & God bless,
 
Lori

 
 SMILE ~ It makes people wonder!
A cheerful look brings joy to the heart, and good news gives health to the
bones. Proverbs 15:30



----- Original Message ----
From: VALLEY FERRELL <valleyferrell@...>
To: sticklersyndrome@yahoogroups.com
Sent: Wednesday, June 4, 2008 2:26:41 PM
Subject: Re: [Stickler Syndrome ] new to pierre robin sequence


Marla,  thank you!  We are in   day3!  Theparents are  very frustrated already..
scared, as am I.  But thankfully they aredoing    remarkably well.     Already
able to feed      almost half of the formula she should be     drinking.      We
live in Texas just north of    Dallas.  She is still in the nicu at this time. 
So far the craniofacial guy      has been very veyr  nice..  think he'll work
well.  he's saying he would like to do surgery tentativly at about   10 months
of age.  Keep your finger's crossed, if everything goes well,  they are looking
at discharge on Monday..         if all goes well with the feeding's...
thanks again!
Val

----- Original Message ----
From: Marla Lemonik <marlarose@prodigy. net>
To: sticklersyndrome@ yahoogroups. com
Sent: Wednesday, June 4, 2008 8:31:13 AM
Subject: RE: [Stickler Syndrome ] new to pierre robin sequence

Hi Val,

My daughter was born with the Pierre Robin sequence cleft palate and
receding chin. The important thing is to find a surgeon the parents can work
with. If you're in New York, I can give you some names.
The first month or two of dealing with this condition are the hardest -
after that, it becomes routine. Feeding is critical. It's much harder for
babies with this condition to eat, they burn more calories during the act of
eating than babies without this condition so it's important to follow your
doctors' guidelines.
Our daughter had her cleft palate repair surgery this past January at 13
monts and within a week or two, you'd never have known there had ever been
anything wrong with her. She's right on target now for 18 months speechwise
(whereas she didn't babble at all before the surgery).
It's not easy but its very very doable.

Good luck!

-Marla

-----Original Message-----
From: sticklersyndrome@ yahoogroups. com
[mailto:sticklersyn drome@ yahoogroups. com] On Behalf Of Valley
Sent: Tuesday, June 03, 2008 11:30 PM
To: sticklersyndrome@ yahoogroups. com
Subject: [Stickler Syndrome ] new to pierre robin sequence

Hi, my name is Val, and I happen to be an RN. But.. my grandaughter was
born sunday June 1 , with Pierre Robin sequence. she has a cleft palate and
a receding chin. As far as sticklersyndrome, we have not be diagnosed with
that yet. I am just out here searching for information, support. This is
my son and his girlfriends second child. Looking for any support we can
arrange... thanks for any help or information.

Val

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