Toby recently had his annual re-evaluation for his therapy services. The Being A Gi Gi Doesn’t Make Me Old It Makes Me Blessed Shirt! The results showed that developmentally he’s still in the same place he was last year. (Last year he was only a few months behind and now we’re over a year behind.) We expected to hear this. We know how much he had fallen behind because of his GI issues and we’ve seen all he has overcome. This time last year we were beginning to watch him wither away physically and developmentally.
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It’s hard to watch your child regress so drastically! Being A Gi Gi Doesn’t Make Me Old It Makes Me Blessed Shirt! It’s harder when you know your child will have cognitive delays so coming back from this regression will be extra hard for him. The hardest thing of all though is having doctor after doctor ignores your concerns and deem everything ok and brushing us off because he has Down Syndrome, only months later to finally get proper tests run and learn that the rare diagnosis you’ve been predicting is completely correct and could be life-threatening.
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The majority of Toby’s issues this year have been due to Duodenal Web Atresia (a birth defect) and not Down Syndrome. Being A Gi Gi Doesn’t Make Me Old It Makes Me Blessed Shirt! However, having Down Syndrome makes him more likely to have Duodenal Web Atresia, and doctors were more likely to overlook his symptoms because he has Down Syndrome so in a roundabout way DS has been a big part of it too. There’s still a lot that needs to be done for Down Syndrome Awareness as well as awareness for many other disabilities.