ANDYRetrun to 22q Stories
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My second pregnancy was announced at the 30-week ultrasound to be twin boys. We were thrilled and scared. After many pre-term labor scares and hospitalizations, the twins were born at 37 weeks weighing 5lbs 12oz & 5lbs 8oz (note: my first son was also born at 37 weeks and was 5lbs 9oz). Our 3rd son, Andy, had an umbilical hernia about the size of a gumball. Our pediatrician at the time said not to worry and that it would heal on its own. At 4 months old, Andy got his first ear infection and at 9 Â½ months old he started having problems with his lungs. When Andy was 13 months old he was hospitalized for three days with breathing problems (RSV). His first set of tubes was placed when he was 16 months old. Andy continued to have ear infections so at 23 months he had the tubes removed because we thought he was allergic to them. Andy was hospitalized at 25 months for croup and again at 26 months for RSV & pneumonia. All through this time he was behind developmentally. Andy has been through the Early Intervention program for speech, occupational therapy and physical therapy starting at the age of 22 months. He was transferred into our school districts special education pre-school at 3 years and continues in a special education classroom today as a 6th grader. When Andy was 3 years & 3 months old (in 2001), I went to our pediatrician asking for support to find out why Andy was so developmentally far behind his twin brother. The pediatrician suggested we start with a cardiologist. The cardiologist ran some tests; one of them being a F.I.S.H. test and Andy was diagnosed with 22q11/VeloCardioFacial Syndrome at 3 years and 4 months. We saw a geneticist at Children’s Memorial Hospital of Chicago who said they didn’t know enough about the syndrome and suggested we go to Children’s Hospital of Philadelphia (CHOP). Andy had a full evaluation (5 days of back to back appointments with many, many doctors and specialists) at CHOP when he was 4-½ years old. At the time we confirmed that Andy had speech and chronic ear infection issues. He also seemed to catch any cold that was around him. Currently (2010) he is receiving growth hormone injections to help with his short stature because he plateaued when he was 9 yrs old. Even more recently, he is now sleeping with a CPAP machine for his obstructive sleep apnea (the result of the pharyngeal surgery) All in all, Andy has had over 15 surgeries in his 12+ years of life. He’s been hospitalized at N.W. Community Hospital, Children’s Memorial Hospital of Chicago, Loyola Children’s Hospital and Syracuse Upstate New York Hospital for the various surgeries and illnesses. Andy is a happy 6th grader who is very active in school and Boy Scouts. We are still working on the speech issues, chronic ear infections, short stature and obstructive sleep apnea. We seem to learn something new all the time and are working on helping those around us learn too (doctors included).