Hi Nicole,
My daughter has just turned one and has Pierre Robin Sequence, she also has a chromosome deletion, she was in the RCH for 3 months and had jaw destraction surgary performed at 9 weeks. She is still, unfortunatly, being fed via NGT, it is very frustrating. We went through a stage at about 4 months were she was feeding really well on the habermann and she went 2 and a half days on oral feeds only, she then became sick and went backwards, now I am lucky to get 20mls a day into her. She is starting to eat solids though and we are working with speech and dieticans at the childrens to try and get rid of this tube. Matilda is currently on 3 milk feeds a day and our next plan is to cut out her lunch time milk and hope that she will get hungry and eat (I know it sounds mean, and I hate the thought), once she is eating solids properly they seem to think the drinking will follow, as with us it has not stepped to the next level.
My dinner is ready so I have to go for now but if you would like to talk more feel free to email me: dee_joint@ hotmail dot com
I am happy to talk on the phone also but I do not want to put my number in here so email me if you like.
I am in the RCH fortnightly for physio and speech, we have proberly crosses paths!
Best of luck.
Deanne.
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