Baby born the drs think she had aperts syndrome! looking for info!?

I had a beautiful baby girl may 31, 2011 at 1:05 pm! 4pounds 7oz 16 1/4 inches long! she was born at 35 weeks and is in nicu! My question is does anyone know anything about aperts syndrome? They are sending her test out on monday to find out if she does have it! I have read tons of websites about it! I would like to know more about the syndrome! If someone could talk to me about it! I would like to talk to someone who has a child with aperts or knows someone who has the syndrome! Thanks in advance!