"The future looks good for our little angel...." by Stefanie July, 2006 ...Anthony was sent to UCLA in Los Angeles California, where we thought he was going to get the best care he could get. We were wrong; they did agree that Anthony showed signs of having Jeune’s Syndrome. The only think they could tell us to do was,let him go! The doctors there didn’t show much interest in figuring out what to do to better Anthony’s chances of survival. In the third week of July 2005, we made the choice to have Anthony moved to Children’s Hospital Los Angeles. That was the best choice we could have ever made. As soon as he got there they were trying to figure out what was going on. It was there that Anthony got his tracheotomy done and g-tube put in. All the doctors agreed that they felt deep down that it was Jeune's all along. Anthony was sent home on Jan 10 2006. We were sent home with no diagnosis, just an educated guess. Anthony came home on a home ventilator and no nursing! It wasn’t until April of 2006 that we took Anthony to see Dr. Skaggs at Children’s Hospital, that we got a for sure answer. As soon as Dr. Skaggs took one look at Anthony’s chest he said that is classic Jeune Syndrome! We were so happy to get an answer but at the same time sad and scared about what the future would hold. Anthony has been home with us for over 7 months now and just had his first birthday! We thought that we would never see the day he turned 1! He has had one cold and didn't have to be admitted to the hospital. We were able to fight it off at home with antibiotics and lots of love! He is an amazing little boy! He is still behind in a lot of things. He weighs 16 pounds and is 25 inches long. The only complications he has, is of course breathing well on his own. He is starting to catch up developmentally wise. He is starting to roll, sit up, and stand with help. He is amazing us with words he is learning. So far he's got Papa, Ma, Boo and No down! The future looks good for our little angel. Many surgeries to come, hopefully starting in October. We will keep every one updated on our angel as much as we can!