Obviously being in Utah we hear a lot about Primary Children's but it doesn't surprise me that they found out a great deal more than your normal doctor. They are world renown in their amazing ability to find answers that nobody else can.
Is she going to be treated there? If so or if you plan on spending a lot of time in Utah, speak up. There are plenty of us here who would be more than willing to help out in anyway we can. Even if it's just an ear to talk to while things are going down.
Good luck and great story!
"Those shoes are not overland approved"