with my son they said the same thing that he has
robinow cause je was a premmie weighing 2lbs 2ozs,the
cleft lip,palate,eyes wide apart flat nose undescended
testicles but now their saying it another syndrome, i
still find it weird that they don't have any tests for
syndromes they would go by what they see and to me he
looks normal but to other people he doesn't.
was also wondering if anyone has any young kids with
premmie problems where they need therapists weekly and
were told that when they turn 3 they'll have to start
school and would like to know if those schools would
be good for the kid. in away i think it will cause in
a regular school he might get picked on he'll be 2
yuesday so i have a whole year to think about it and
to try to get him to eat by mouth and walk cause he
has the button. he'll eat soft food by mouth but i
have to put it in his mouth he hasn't got the hang of
drinking anything by mouth yet,

if anyone know about this stuff please let me know



--- menageriehomedecor <laurie@...> wrote:

> Hi - My daughter Kimi was diagnosed at UCSF with
> Robinow Syndrome
> shortly after her birth. Kimi is now 2 1/2 years
> old and we are
> still doubting the diagnosis. I do see some facial
> charasteristics
> but I just have doubts..... The diagnosis was made
> based on her
> round, wide-set eyes. She was also born with patent
> ductus
> arteriosis (sp?) (hole in her heart); bi-lateral,
> moderate to severe,
> hearing loss; abdominal hernia; 2 hair whirls, blue
> sclera, and a
> smile & personality that melts my heart.
>
> Does any of this sound familiar?
>
> Laurie
> laurie@...
> Northern California
>
>
>




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