Last time we did a swallow study, Evie was about 4 weeks old. She had to fast for 3 hours and she let us know she was not ok with that. She screamed all the way to the ambulance and to Childrens Hospital (even though it was across the street, we still had to take an ambulance!). We held her hand and her pacifier through portholes in the side of the plastic isolette. By the time we got to the fluoroscopy lab, she was a piece of work--flailing around and screaming her head off. At that visit, they put her behind an x-ray machine and we could see her little baby skeleton. When she finally got her milk that had barium in it, we could that sometimes she allowed milk down her airway. And so began the thickening of her milk to "nectar thick." This just means adding in baby rice cereal or oatmeal cereal to a thicker consistency. If she had really aspirated more, we might have had to go to the thicker "honey thick" consistency. Fast forward 6 months later. We wen...
While sharing our journey with Down Syndrome, we want to help other parents with our experiences, as well as spread awareness about what it means to have Down Syndrome (spoiler: it means great things!).