Phew! All caught up! I'm totally amazed at your trip so far. I guess it is charma for all the hassles you had before you left. I can understand a little of your previous frustrations. We had a very slow start to our plans. Phoebe was approved immediately, but then it took a couple months before a wish granter contacted us. Then we met with her and wanted to take a little time (one week...) to decide what wish would be most fun for Phoebe. It took weeks to hear back from her that her official wish was approved. Then it took several more weeks before she called me to say the dates we requested were full (I guess our chapter is super busy) so I requested new dates. It took several more weeks before those were approved. Now we are waiting to hear more details, such as flight times and where we are staying...She is super sweet, and I'm sure it has more to do with being a middle man. It is just nerve wracking being told that we are going, but then nothing more....I think WISH families are all appreciative of the gift they are being given, but the whole point of it is to provide a magical experience without the hassle and worry. I'm so glad your trip was magical!!!
I am a planner so it was hard for me to wait too! We have never met our Wish granter in person. I have only communicated with her through email and by phone. That is part of the 6 hour round trip distance problem between us and the closest chapter!
How wonderful that you have met another child who is so similar! That is my only reason for wanting a diagnosis at this point. Phoebe is labeled as legally blind, CP, seizures, dev. delay, etc but having a name for the whole "package" could help us know what to expect in the future. I know what you mean about the "look" too. Phoebe has some half brothers who look quite a bit like her, but there are definitely unique traits she has. Her geneticist is convinced that she has some version of Rett syndrome but so far, all the tests have come back negative. So, awesome that you have found a family to connect with! Oh, and YAHOO!!!! on having a geneticist coming to your area!!! I complain about our 2 hrs round trip for appts, I can't imagine 6...
Looking forward to the rest of the TR!