Congratulations! As everyone else said, your granddaughter is fortunate to be born to a caring family interested in learning more about her condition. I just have one thing to add regarding the "talking to others about her condition". When my son was born and diagnosed I was still very open about his condition. I tend to be a pretty open person and didn't think I should keep silent about a potentially serious condition. Now, however I do choose who I talk to and what I say much more carefully. My son is almost 2 and I have had several occasions where people have made very insensitive comments. I am now more aware that he will soon be understanding all of what is said and I don't want him hurt or treated differently. I think people (other than family and close friends) quickly forget some of the details and just remember the child is "different" or "sick". As an example, one mother in my son's playgroup made some comment like "oh, will he be able to play sports with . . . what's wrong with him again?" Granted she is an idiot, but it was still difficult to hear. I hope you visit this board often. It is been a wonderful place to learn and exchange support.