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We are from Pelham, New Hampshire. We have a daughter born in June of 1998 and a son born on April 2, 2000. When Roger John (RJ) was born, we noticed something wrong right away. His thumbs were broad, he had a big purple "stork bite" on his forehead and nose, and he was very ruddy. We knew from ultrasounds that he had a nonfunctioning kidney. Genetic testing later confirmed he had Rubenstein-Taybi syndrome. He spent his first 26 days of life in the special care nursery waiting for his heart and pulmonary arteries to mature. He is having a G-tube put in to help with his feeding difficulties. We are very fortunate to get a diagnosis so quickly, early intervention is already involved and have been a wonderful support to Mom and dad. His big sister, Sammie, is getting used to sharing mommy and daddy although sometimes it is difficult for her as we have to spend so much time caring for RJ. He is a beautiful boy who is quick to smile (and not just from gas)! He has touched our lives in a very special way and has brought our family closer together. We are looking forward to every milestone and know we will appreciate every one he reaches.

Katherine Yost



Update 4-16-2006

On April 2, 2006 RJ turned six years old! He is doing very well in a typical kindergarten class. He has an aide who helps him with his work. He can write his name, knows his alphabet and numbers up to 10 and is learning to add. Sign language and the Dynavox device are his main methods of communication although he is starting to say some words and is working hard at saying more. We are very hopeful he will use speech as his main mode of communication. Still wearing diapers, he is beginning to potty train. We anticipate he will be finished before he starts first grade in the fall. RJ is very happy and is quite the little character. He has a great sense of humor and loves animals, playing on the computer, books, music, TV, water, and trains. His big sister, Samantha, is very helpful with him and we are very proud of her. She was only 22 months old when he was born so it was pretty rough for her due to all the attention he got from so many different people. She is now beginning to understand why and is more understanding of the situation. We are a very happy family and are so thankful for all we have.