Books

Written by Rhiannon Merritt-Rubadue, a former tubie momma, whose daughter was tube-fed until the age of three. She decided to write children’s books about feeding tubes because none were available. A Day in the Life of a Tube Fed Boy/Girl is appropriate for ages 1 to 7.

The author, Mya Lin Terry, is a nine-year-old pediatric cancer patient, in the Fourth Grade. Mya enjoys cooking, writing, drawing and all animals. She decided to write this book when she learned that there were no books for kids who wanted to learn about NG-tubes. She hopes this book helps other kids be less afraid if someday they also need a feeding tube.

Follow Nico as he tells you what makes him special and why he loves his button.

My Belly has Two Buttons is about a little boy named Nico, and he tells you what makes him special…his 2nd button! Or Feeding Tube and all the things it does for him.

While their parents think they are sleeping, three brave Super Tubies – Camden, Marcel, and Lola – get calls on the Tubie Message Center and have to spring into action. Will the power from their feeding tubes help these superheroes save the day?

In the empowering Adventures of Team Super Tubie, a diversity of tubes – a G-tube, an NG-tube, and TPN – are used as these heroes fight fires, battle dragons, and capture bank thieves. Being a Super Tubie has never been so much fun!

This book was written by a parent and MitoAction member. It is written especially for children from preschool to middle-school age who either have or need a G-tube (a gastrostomy tube for feeding) or who have a sibling/friend with a G-tube. It is intended to help children with G-tubes recognize their strengths and learn more about a G-tube.

Copies of this book are available as a free service of MitoAction. There is also a downloadable PDF of the book available.

A new children’s book created by ThriveRx for children with Central Venous Lines. This book is the first in a series of books designed for children growing up on TPN.

It is intended as an early reader or read-to-me book. The book addresses the importance of good line care in a simplified manner with rhyme and repetition. It focuses on basic line care: keeping it safe, clean and dry. In addition, it also shows that even with a line a kid can still be a kid. The main character has a central line and the book stresses recognizing the line as part of their body, hand washing and keeping the line clean and dry.

For more information and ordering information email [email protected] or call 888.684.7483.

The story of a young boy with Eosinophilic Esophagitis. The story follows Ben as he has trouble eating, gets diagnosed and works with his GI to find safe foods.

By Alana Terry, the mother of a child who is tube fed. One of the main characters in the book has a feeding tube and wears his backpack! For an older child.

Authored by Joseph L. Bowes and illustrated by Jeremy Sniatecki. By using his imagination, Henry takes the trickier parts of everyday life with an ostomy, G-tube and central line and turns them into an adventure!

Jordan Tarbutton’s brother Cooper was born with medical problems. He had to undergo a number of procedures to help him cope with his difficulties. One procedure included insertion of a gastric tube into his stomach to feed him. Jordan was so proud of her little brother that she wrote and illustrated this story about his G-tube to celebrate his bravery and determination. The love she has for Cooper glows from every page.

This Raina Telgemeier graphic novel features a child with cystic fibrosis who uses a respiratory vest, feeding tube, feeding pump, and formula.

Emma’s Special Tummy is about a little girl who is diagnosed with EoE and gets a feeding tube. The author remembers how
scary this journey was when her daughter was young, and wanted to create something children could relate to. A soft Emma doll to go along with the book will be released in late June 2018.

This shows the story of a little girl that has a feeding tube, or g-tube. Maya walks you through her day to day life with a feeding tube and all that means.

The late Eric Aadhaar O’Gorman was a happy owner of a feeding tube. He combined the best and latest medical research with insights from his and others’ real-world tube feeding experiences. This helpful handbook provides comprehensive and compassionate coverage of all aspects of tube feeding and nutrition via tube, including:

• The different types of enteral feeding tubes, their placement, use and care, with loads of useful tips and tricks to make living with a feeding tube easy as can be.
• Tube nutrition, with sections on commercially available formulas, as well as a detailed approach to a blended diet (sometimes known as a blenderized diet) – how to use real food for tube feeding while ensuring complete nutrition and stress-free management of blending.
• Commonly faced problems with tubefeeding, discussed at length and with solutions presented, ranging from possible medical complications to psychological and emotional issues and the impact on family life.

25 blenderized diet recipes by a dietitian and a nurse

Cooking for Tubies is a cookbook and guidebook full of recipes and tips for preparing blenderized diets for tube feeding or liquid diets. Recipe categories include blenderless blends, recipes for the whole family including your tubie, delicious treats, and some go-to, basic blends. Each recipe includes nutritional facts and carbohydrate/fat/protein ratio along with ideas for substitutions. Recipes are designed to be balanced and full of nourishing ingredients. Happy blending!

The book contains 35 reproducible chapters and 16 food reference charts. It was written by both Suzanne Evans Morris and Marsha Dunn Klein, as well as parents of children who are fed by tube, a physician, and two dietitians. The book is designed as a reference and “how to” for parents and professionals who together are making the choice to try a homemade blended diet for tube feeding.

Written by one of the first people to live at home receiving IV nutrition (TPN) in the 1980s, this is an inspiring story of living life despite chronic illness. Inalee Koonin and her husband, Marshall, founded LifeLine, an organization that raised awareness of TPN and connected people living on alternative nutrition. The organization merged with the Oley Foundation.

Just Another Run of the Mill Day is written by Leah Atkinson, a mother to Jameson, who nearly died from a complicated bowel obstruction. He lost much of his small intestine and was put on IV nutrition (TPN). Their story is one of a family that was faced with a catastrophic health crisis when their sons were teenagers. Jameson, now an adult, has a Masters in Elementary Education.