She had been in feeding therapy for about a year prior to the second surgery.
In that year we had gotten up to eating yogurt, pudding, some baby foods. After
the surgery these things did not interest her. With a couple more months of
feeding therapy and some healing time she got back into the eating game. She is
doing sooooo well now. She still has some feeding aversions but there is enough
different types of food she can handle that we do great. As our Cranial Facial
Doc told us "I've never had a 10 year old patient who didn't eat Pizza". That
gave us hope. We are not up to pizza yet, but we will someday. If you have
anymore questions please feel free.
Have a wonderful day,

Ann-Marie

Lachelle Staggs <claykenziesmom@...> wrote:
Thanks so much! So she lost interest in food after the repair? How long had
she been eating? Clayton has only been eating for about 2 months, but now he
eats non-stop.

Lachelle

Ann-Marie Fosselman <anniefosselman@...> wrote:
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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