hi,

Thanks for the information right now things are a little hetic with Andy b/c he
suddenly they think developed an infection but all the tests came back neg. So
they are wanting to talk to ENT and I believe they want to give him a breathing
tube but I already told them thats not gonna help him much with his tongue
falling back into his throat unless they fix it so we are butting heads so to
speak lol.

Thanks,

Kristin

laeticia_demorte <no_reply@yahoogroups.com> wrote:
Hi Kristin

i was born with prs and cleft palate in the 60's, my cleft was fixed
when i was less than a year old. I was never given a trach either
but was placed face down on a special frame that meant airways were
kept clear and the lower jaw fell forward because of the prone
position. to see me or hear me now you would never know i had a
problem.

at 14 i was told by eye doctors that i had sticklers, my joints
aren't great but i can handle that, waiting for new hips at the
moment! my eyes have always been poor but because i know/knew about
these things i have a fabulous life, my own home, good job, great
family and friends, i don't feel i've ever missed anything, i have
my own horse and ride regularly....
what i am saying is that your son has a good a chance as anyone of
having a regular life, and obviously you are a caring mum (you
wouldn't be here otherwise) - so he has a greater head start...

lots of love to you both

jane - uk
--- In sticklersyndrome@yahoogroups.com, "mommies_joy21"
<mommies_joy21@y...> wrote:
> Hi,
>
> I have a son who was born on oct. 8th and has what they call a
> pierre robin syndrome. I was wondering if anyone can share any
> experiences/wisdom on whats to come with him going thru this
> syndrome. and whens the cleft usually fixed on children born in
the
> 90's or 2000's. Because when i was born with a cleft palate it
> wasn't fixed till almost 2yrs of age was wondering if it might
have
> changed.
>
>
> Thanks,
>
> Kristin


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