Posted by holly
on 11/17/2008, 2:32 pm, in reply to "Ava"
68.58.169.12
Hey there...welcome to the group. I am glad to hear that your little one is doing well. The first few months can be pretty stressful. My daughter is seven months old and has prs/csp. She had a rocky start too but now is doing great. Good hearing from you.
--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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