An answer

I have found a piece to the puzzle or so I hope. I contacted one of the families in KY who has a child with PKS. I asked her where her child went to the doctor given the fact that we aren't having the best of luck at Kosairs. Her child actually goes to a doc not far from the hospital who specializes in genetics and is affiliated with Kosairs/U of L Physicians. It's crazy to us how Savannah's docs now have never mentioned him to us. We have been wondering a lot lately how much they've actually researched her syndrome. According to this other Childs mother this doc knows a lot about PKS. So, here's to hoping we can get Savannah's records and get an office visit scheduled with him on Monday so Jon and I can discuss Savannah with him. I will not go down without a fight to save my daughter's life and to make sure she doesn't leave that hospital with any further damage than what her syndrome will already cause. I am her only advocate and I wont stand to get the I don't know answers anymore.