Posted by Angela
on 11/17/2008, 6:09 pm, in reply to "Ava"
71.187.181.52
Welcome! Sounds like things are progressing pretty well for Ava. I hope it continues to do so. My daughter has PRS with a cleft of the hard and soft palate. She's 25mos and doing fantastic. Her palate is repaired, her trach is out and her speech is perfect. Hang in there, the first year is hard, but it does get better!
Angela
--Previous Message--
: This is a great website for us .we are in
: sydney australia.Ava my grandaughter is 5
: months old born with Undiagnosed bilateral
: Cleft Palate later diagnosed with PRS. We
: have only one centre in Syney at Westmead
: Childrens.Ava was in hosp for 3 Weeks after
: birth on O2 for one week unable to bottle
: feed well so has been Nasogastric fed since
: birth.On formulae plus polyjoule as the
: breast milk dried up.Ava is on Apnoea
: monitor when sleeping and on Cpap for Sleep
: Apnoea since 6 weeks ago.Her hearing and
: general health have improved since.She is
: starting to suck better so hopefully no need
: to have distraction surgery.She is also
: starting to have a voice at last,surgery is
: not till 18 months due to the size of her
: cleft"As she grows her palate will get
: smaller and it will be like a curtain
: closing that will just need stitching up
: like a zipper closing"According to the
: surgeon. my daughter lives with me and so i
: will pass on to her all this advice that I
: have been reading.All her care is free under
: the public health system we just have to buy
: machines and feeding stuff.the team at
: westmead willbe caring for Ava till she
: is 18 years old.we are lucky.
:
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