While Lila was in the hospital I got a comment on this blog from another mother whose child has Vici syndrome. They live in wales and their little boy is four. They just found out he has vici a few weeks ago, and did all the genetic confirming with Dr jungbluth. It has been so wonderful to talk to her. Having another child about the same age as Lila with the exact same symptoms and problems is very comforting. Not that I would wish this on anyone, but it makes you feel not so alone. We have gotten wonderful suggestions from them on things that could help Lila. Their little boy seems to be doing pretty well. In some respects I think he is far more advanced than lila. He can lift his arms to play with toys and he is constantly smiling and laughing. Lila smiles and laughs but it is not a constant thing. Finding them is like finding long lost family.
I always go back and forth if I should make this blog private. It is pretty much my personal journal, but I have found three Vici families from having this blog and that is worth its weight in gold!