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Cindy Gulyash MN USA My husband and I had two older kids, when we had Lance. Lance was born full term at 9 lbs. 3 oz, but quit breathing twice and was thought to have Down's syndrome. He spend 5 days in the special care nursery since his oxygen levels weren't stable until they discovered that he had severe GER. He was started on Zantac and then his oxygen levels were fine. After waiting close to 4 weeks we found out that his chromosomes were normal. Then at 3 months old we were sent to a Cardiologist and that is who first thought of NS. Once Lance was a year we had the genetic confirmation that he indeed had NS. After that we had several tests and saw a lot of specialist to check everything out. He has pulmonary stenosis, horseshoe kidneys and high BP. He has had a cranial cap and ear tubes x2. He has the delay of developmental milestones such as walking(age 2), and talking (2 1/2). He is receiving OT, Speech Therapy, and on Growth Hormone . I feel very blessed that I have Lance and that he is a joy and inspiration to us all.
Cindy Gulyash
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