When we first decided to go to Disney, I started researching how it is having a feeding tube at Disney, and how kids with sensory issues can still enjoy the "most magical place on earth." I found information here and there on various forums, by googling "which resort has freezers," and "ice packs at Disney," and "sensory issues at Disney." I wanted to share what I learned in hopes that our experiences can help someone else. The technical 411 for fellow tubie parents: Evie is 4 years old, has a g-tube, but eats 3 meals a day of blended foods by mouth. She gets supplemental Real Food Blends 3 times a day. We are at about 30% wean. We had gone to 50% wean, but she lost too much weight. The technical 411 for fellow sensory parents: Evie is terrified in a closed room environment with a lot of people. She hates it when people speak on a microphone, and has almost physical pain when people start clapping and cheering. However, she does fine ...
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!).