I' m not 100% sure that they will be doing a surgery. I'm just trying to find
out what kind of recoveries are typical after a cleft repair, to see if it's
feasible to have his feeding tube removed at this point. His speech is really
affected by the cleft, as he just turned 3, and his developmental scores for
speech are only at 20 months, and he has been seeing speech therapists for 2
years now.

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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