Sarah it will all be okay. I thought having a child with PKU was scary and my son was born 2lbs 13oz. He was the smallest born with PKU reported in the U.S. Our doctors were running around trying to figure what he would need to grow. I was very scared now my son is almost four and very healthy tall and excited about santa. The best thing you can do is educate yourself and others around you listen to your treatment team. Always remember you are your childs biggest advocate. Use your knowledge to teach others.