Arlo's Story

My little buddy, Arlo, was born with Mosaic Trisomy 18. Trisomy 18 is a chromosomal abnormality that can be highly discriminated against in the medical community. Many hospitals refuse to do life saving surgeries on these babies, etc. 

My son came home from the NICU with a g tube at 2.5 months old, and we started feeding therapy right away as that was really important to us. We were dealing with lots of vomit, as well as constant bottle and spoon trials that created lots of stress, but got us nowhere! The therapists told me to keep trying, to use vibrating spoons and to rub them on his face, etc. That maybe he’d get it. But they were also questioning if maybe something was wrong with his brain where he just couldn’t get the eating sequence. Or maybe he just wouldn’t have the stamina to eat. (Diagnosis discrimination, if you ask me). 

I believed he could learn to eat, but I was also afraid, being the ONLY one who believed. So, I contacted Growing Independent Eaters (GIE) and they believed in him, too! They were willing to give him a chance. 

We started a wean on July 10. It was very emotionally difficult, with lots of ups and downs, but he’s been all oral on purées (he’s developmentally delayed and doesn’t grab things yet) since September 10. And, he had a well child check yesterday showing that his growth is picking back up! I’m so proud of him, and so so so so so thankful for Growing Independent Eaters!