Read your post & want you to know that it does get better. Our daughter wasn't diagnosed until she was 5 days old & almost died at home. She had a jaw distraction at 2 weeks old & spent 6 weeks at the hospital. We have a 7 & 4 year old that I only saw on week ends when they stayed at a Ronald House with us. The first months are rough but they are amazing babies. Read & ask lots of questions be aware of your options. Hang in there & be strong.
: Hi Janice,
: 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!
: --Previous Message--
: Hi there, my daughter was born on 5/31/11
: 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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