Just saw your post and wanted to say hang in there! It really sucks bit it does get better! I have a 20 month old and a seven month old, both of which have prs. We were the same as you with our first and the first few months are a whirlwind of information, appointments and adjustment but it really is worth it. The biggest thing I have taken from it is what amazing kids we have! It can be a terribly isolating condition in the fact it's not widely known about but the main thing is it's fixable and most people will never know they are any different! Try and use all your resources and make sure you are fully informed about all aspects of the condition! Feel free to contact me and ask any questions!
Good luck and congratulations on your new little bub!
: Hi there, my daughter was born on 5/31/11 and
: diagnosed with Pierre Robin that day. She's
: still in the NICU trying to get a handle on
: eating and breathing and she'll likely be
: there for a few more weeks.
: Just looking for any advice or words of
: wisdom! This has been so hard on us all (we
: have a son who will be 3 tomorrow) and I'm
: dying for her to come home!
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