Posted by katrina
on 11/17/2008, 3:16 am
122.106.155.218
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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