My Tubie Stories
You can follow their journey on Facebook: Watching Angus Grow Up Story contributed by Leah; February 2022
In the NICU we were taught to feed her with the tube and it became less scary.Eventually we got home but for unknown reasons she was not feeding well and allergic to everything, repeatedly for the first 18 months of her life she had tubes in her nose (nasogastric) and then just before age 2 she was changed to a permanent gastrostomy tube for enteral feeding. Dusty was not diagnosed until age 5, she has a rare chromosomal disorder meaning she has missing genes as well as extra genes where they don’t belong. If it wasn’t for her feeding tube she would not be alive today, as it took so long time to find her rare disease, no doctor could anticipate what would be wrong with Dusty or how to treat until it was happening.
Thank you to Nurse Next Door and Helen for contributing this story, February 2020. You can read the blog post on Nurse Next Door website here.
Story contributed by Tashana; February 2020
Story contributed by Emma; November 2018
Story contributed by Lisa; January 2018
Imogen needs more surgery for tonsils and adenoids removal (this will be her fifth surgery) and she will also be scoped again while she’s under GA to test again for an EGID since that hasn’t completely been ruled out yet. She’s still 100% tube fed but will occasionally nibble on a Twistie if she’s not feeling too nauseous. She is struggling quite regularly with her GTube and her gastroenterologist has already warned me that we may be looking at a JTube sooner rather than later, unfortunately.
In terms of her development, she’s hit so many milestones this year! She’s started walking, she can say about 10 words and I’ve started teaching her keyword signing which has helped with her communication tremendously. We are looking forward to what the next year will bring!! Story contributed by Melissa; November 2018
Story contributed by Shaz; November 2018