Re: Pierre Robin Syndrome
One more thing, you state the fundoplication truly made a difference,
do you recall what weight Emma was when they performed this? They
have continuously told us a fundoplication will be the best thing in
Maddies case b/c her reflux is so bad. She has asperated through her
trachea, and it was not pretty.
Everything w/ Madison is a weight issue, the surgeons are actually
going to put this new Mickey in, the NJ tube goes in the Mickey,
which is flush against the skin on the stomach... Yale just received
it this past week and Maddie has to be 4 kilos before she can receive
it. We have it sitting in our hospital room waiting to be placed.
Does your daughter have Pierre Robin Syndrome?
Thank you again