Monday, August 27, 2012

A Book for Tube Fed Children

My Tubey book, feeding tube, special needs children, G-Tube, GT, Rhiannon Rubadue, backback, feeding pump, EnteraLite Infinity Enteral Feeding Pump
We love this book-"My Tubey: A day in the life of a Tube Fed Boy". J and L love sitting down and listening to the story. L always has to pull up his shirt and show his tube when we read it. This book came about because a mom (Rhiannon Merritt-Rubadue) wanted a kid's book for her toddler who was tube fed. The toddler was starting to notice that no one else in her family had a feeding tube and there were no books written for kids about children with feeding tubes. She didn't get to writing it immediately as she was busy with a tubey toddler and siblings but her idea remained active in her head. In 2011 she wrote "My Tubey: A Day in the Life of a Tube Fed (Boy/Girl)". I love that she wrote a book for a boy and a book for a girl. We found out about this book from a support group we were attending for parents of special needs children. The book hadn't been published yet but we anxiously waited until it was for sale and got it as soon as it was available. The boys were too young to really understand what it all meant at that time but now they understand and like hearing the story.

J asking questions about one of the pictures showing a bolus syringe and feeding pump.
 L loves to sit and look at pictures.

She is currently writing several more books including:
  • There's More Than One Way to Eat
  • Bye-Bye Tubey: It's Time to Remove My Tube!
  • My Tubey Goes to Preschool
From what I can tell none of the new books are not out yet but looking at her facebook page there was a comment stating that she is working hard to get the first book finished and it should be out in September. I am looking forward to seeing and getting the Bye-Bye Tubey book whenever it gets published. I pray we get to read it to L to prep him for getting his tube out soon (like within the next 2 years).

Take a look around her website there are several different thing to point out:

  • There is a link to her Amazon store where you can purchase her books
  • There is a little photo gallery that she shows some pictures from first NG to tube being taken out. Her quote is "I hope these pictures are a comfort to you as you may see your own tube feeding life mirrored back!".  My FAVORITE picture is about half way through where mom and daughter are sitting on the floor and both are covered in formula throw up. It is my favorite because the first year L had his feeding tube that was our daily normal until he got his GJ tube. Glad that we aren't the only ones!
  • There is a feeding tube resources page. I will be posting about some of those sites at another time along with some other cool sites I have found!
  • My second favorite picture on the website is on the "Contact Us" page. It is the mom holding her little girl and reading her a homemade book about getting her tube out. I love it because it is such a simple thing to do--make a quick fun book--but I would have never thought about making L a book. This mom has lots of imagination and a drive to make it happen! I envy those creative types that can bring a dream into reality. I can dream but when I wake up it is left behind and quickly forgotten. 

  • You can go to the My Tubey website or you can also click on the tab above for our Amazon store to find the books.

    No comments:

    Post a Comment