Evie stands voluntarily now! The thing about having a toddler on a feeding tube is that they become more active, and burn off the calories you work so hard to put in to gain weight. It used to be just using Pediasure formula to fatten her up when she was an infant, but it's more complex now. She actually weaned off eating with the iPad (whew!), but I wanted to show that she likes chocolate pudding! In the latest chapter in the saga of helping Evie to gain weight, we hit a plateau where we were giving her formula by tube and then feeding her pureed foods orally, but she was still growing at a slower rate than optimal. At that point, the GI doc was concerned, and we could start seeing her ribs, despite adding oils and Duocal supplement to every meal. We were so close to weaning her off formula, and then she started learning to walk and going to school to learn to be a big girl! It felt like a step backwards to add back in more formula. I was so...
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!).