I talked to Children's, the doc and the therapists yesterday and it was so good because I got a lot of info. The visit at Children's isn't until Sept but, we are on the cancellation call-back list. So, really, it could be any time between now and Sept. The doc gave us some great info on syndromes and gave us his take. He was very positive and reasuring. He is going to meet with her next week. The therapists have the same thoughts as the others last week. Janie's features are not glaring but there are enough of them that it would be worth having her genetically tested. She tested well yesterday but, she is significantly delayed and in the areas consistant with syndromes. Janie's tongue is out most of the time and they are not sure yet if it is neurological or because of her oral low tone. So, we wait for answers. And in my oppinion, syndromes are just a list of symptoms anyway. She is who she is.
Moderator/WA State Co-Coordinator
Janie-5/03 (PIH, oligo and low blood flow)