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We thought that the doctor meant something like a heart defect, or some other serious problem. We were informed that he had been born with some abnormalities of the fingers and toes, and that genetics testing would also need to be done.
Adrian was in the NICU for ten days, after which we took him home not knowing what we were facing. He was hospitalized two weeks later for feeding difficulties, and at that time we first heard the name Rubinstein Taybi Syndrome. Adrian has all of the physical characteristics of RTS. We had no idea what RTS was, so we rushed home to the internet and found the RTS Website and Our Pages. I was totally devestated at first. Being the daughter of a special education teacher I knew the implications of having a child with special needs.
Healthwise, Adrian has battled ear infections and does not like to eat. He remains pretty small - at three months he weighs only 8 pounds, 2 ounces and is 22 inches long. We may be looking at a feeding tube in the near future, but for now Adrian is holding his own. When Adrian is happy he is about the cutest little guy you could ever meet. Both our families adore him, and he is becoming alert and active. He loves to push himself up when on the floor to see what is going on, and he loves to cuddle. His older brother Benjamin (almost 3) just loves him, and talks to him and pats him on the back and sings to him. Benjamin also likes to play with all the hair that Adrian was blessed with.
While Adrian's diagnosis hasn't been easy, I think we are finally starting to understand our role as parents with a child with special needs. We are learning to take it one day at a time, and to see things for what they are. We have already started Adrian in an Early Childhood Intervention program, and feel that is going to beneficial to his progress. Adrian himself has already touched our lives in ways that we could not have imagined. There is a long hard haul ahead, but I would not change who Adrian is for anything.
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