Hello!!! Our daughter has had two repairs done to her cleft palate. The first
one was when she was 18 months old and then a pharengeal flap when she was 3.
She also has a mickey. Our surgeon kept the mickey in for safe keeping. We are
very glad he did because she lost all interest in eating for quit awhile. She
is 5 now and is doing great. Prior to the second surgery we only could
understand about 20% of her speech. 2 months after her second surgery we were
up to 75% and now we are at 100%. She has made great strides and is doing
wonderfully. Hope this was helpful and we will keep you and your family in our
prayers.

Sincerely,

Ann-Marie

matt russell <mattnheatherr@...> wrote:
Hi! My name is Heather & 2 of my daughters & I have Stickler. My middle
daughter Paige had PRS also. She had a cleft-palate repair. The recovery from
the repair took about 2 good weeks. She is much better now. She also had a
mickey button & a trach. I would think that having the palate repaired at the
same time has the button removed wouldn't be a problem. The recovery from the
button being taken out, was minimal. She had no difficulty with it at all. She
was also 3 when it was removed. Hope that was of some help.

Heather

jennaevmooney <jennaev@...> wrote:
Whst type of surgery are they doing?

We (3 of us) all have submucus clefts and no one has suggested surgery
to close them. THe speech may be helped by a velopharyngeal
tightening, as opposed to a cleft repair.

I am just throwing suggestions out there, since submucus clefts really
only cause severe speech problems if there is VPI involved. ANd the
solution to VPI is a surgery to tighten that sphincter.


--- In sticklersyndrome@yahoogroups.com, "claykenziesmom"
<claykenziesmom@...> wrote:
>
> Hello! My name is Lachelle and I have a 3 yr old little boy that
has
> a submucous cleft. He definitely has PRS, but we've never gotten a
> sure diagnosis of Stickler's because he does not have vision,
hearing,
> or joint problems. But his speech is being greatly affected by the
> cleft, and we are fairly sure we are looking at another surgery.
The
> problem comes in here: he still has a mickey button, from earlier
> feeding issues, but we haven't used it in about 2 months. We are
> going to see the surgeon tomorrow about button removal. Question:
> Has anyone had any experience with the cleft repair surgery and
> recovery times? I'm afraid they won't remove the button if he needs
> surgery on his mouth.
>






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