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"No act of kindness, no matter how small, is ever wasted"
You can join the TNSSG group or our cause on FACEBOOK
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This is Kathy Mox Port Orchard, WA USA
My connection is my grandson, Cory Miller-5-15-2001. He was clinically diagnosed at about 3 months. He was born with an ASD(repaired) and VSD (two holes repaired themselves-cleared by his cardiologist last year). He is growth hormone deficient (takes daily injections since he was a year old), has some physical characteristics and is hearing impaired (wears hearing aids). Cory attended developmental preschool and kindergarten. He started 1st grade this fall in a regular classroom with an IEP in place. He receives some PT (very short-not quite webbed neck) OT and Speech. Cory is having some minor behavioral issues but is learning what is being taught. Cory has experienced a number of other NS experiences...NG tubes...poor tooth enamel...prefers not to eat meat...many delayed "normal" infant/toddler milestones up until about a year ago when he finally made it to the "normal" growth chart at a wholloping 3%. None of these issues, even combined, are nearly as drastic as so many other members of our Noonan families are facing. We are all so thankful that Cory is what he is and couldn't love him anymore. I first found this group quite by accident. Cory spent the first 7 weeks of his life in a neo-natal intensive care unit. I would listen to the Doc's following what they were saying to a point...Then would get lost in some of the vocabulary. I would ask questions from what I had been told the day before after researching "the words" on the internet when I went home for the night. There was a website called TNSSG that had a great glossary of a number of terms the Doc's were using. There I started to learn about a condition I had never heard of. Shortly after Cory's diagnosis I became part of the list to gain valuable insight and practical, proven techniques to help Cory ( his mom and dad and big sister) down his life's path. I am not Cory's primary caregiver just a very involved Gramma who has used this site to gain invaluable information.
Thank YOU and all those who help make this knowledge available! |
