Evie the Extraordinary and Her Mommy: The Journey As We Go

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 ...

Something I never thought I'd have to do when I first got pregnant was that I'd need to explain to the other kids in my daughter's class what's different about her.   And honestly, after spending a month in preschool, I don't think the other kids see too many of the differences.  The letter is more for the parents, so they won't be caught off guard if a child goes home talking about a "plastic tube that goes into Evie's stomach," or asking why Evie has a wheelchair and a walker. Evie modeling her pink wheelchair!  Insurance wouldn't cover the light-up wheels I selected (for some reason...) Our preschool team has been amazing, and one of their suggestions for the transition was to write a letter to the other families in the preschool class, explaining the g-tube in case the children asked about it.  They put me in contact with another mom, whose tubie is now in 3rd grade and flourishing. So a lot of credit goes to this mom, who gave permi...

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...

Last night, for the first time since she was born, Evie didn't get a formula feed overnight, and she didn't even get water overnight (for hydration).  She slept like a typical child in her crib, with no hookups.  I didn't have to hook up the 24" right-angle Y-port extension tube into her tummy and through a hole in her Zipadee Zip to the G-tube pump.  My husband didn't have to prep the 500 ml feeding bag and wait until she was asleep to hook up the feeding tube.   He didn't have to wake up at 5 am to turn off the g-tube pump when the alarm said the feed was done.  We didn't have to wake up because the flow was interrupted by her tossing and turning and the alarm didn't have to go off.  SHE didn't have to wake up soaking wet because there was a leak, or because the tube somehow became disconnected overnight. With that, I want to post a tribute to the IV pole.  It has faithfully stayed by her bed, standing guard and holding her food for 2 and a ...