Eliza Tubie Testimonial
Welcome back to TubieTalk! We are so excited to begin a new segment of blogs dedicated to Tubie Testimonies. We are hopeful this will continue to create an advocacy for those who are a part of the tubie community by sharing stories, first-hand advice, and tubie fun facts! For the month of September, we are highlighting Eliza Pye’s story.
Join us below to read Eliza’s Tubie Testimony and learn all about what #Elizasays is made of!
Meet Eliza Pye!
She is a 6-year-old girl who has CHARGE syndrome. CHARGE syndrome is a rare + complex condition which affects her severely in many ways including her breathing, mobility, senses, eating + hearing. She has always been tube fed due to her unsafe swallow + various medical challenges.
“We started with a NG-tube quite soon after birth then moved onto her G-tube / Fundo at around 18 months which for us was life changing. She went from surviving to thriving. Her weight + strength started to build + have not been stopping her since. She has now been given the go ahead to try puréed food + drinks orally but as you can appreciate progress feels painfully slow at the moment. Around 6 months ago I made the decision to try a blended diet via her Gtube, with the support + guidance of medical professionals we have slowly begun to introduce blended meals. So far this is going really well + Eliza enjoys being a part of the process of making the blended feeds.”
What is Eliza’s Favorite Activity?
“Karate + Horse Riding”
What is Eliza’s Favorite Color?
“Red”
Eliza’s Top Tubie Memory
“My favorite memory I have with Eliza was watching her playing on the beach for the first time. Sat playing in the sand, dipping her toes in the water is just something I will never get tired of watching, we had put off doing certain activities in the beginning, but I soon realized there’s nothing holding us back we can do + achieve anything.”
A Tubie Challenge Overcame by Eliza + Family
“Traveling with a tubie can be challenging + require lots of planning but it’s something I would recommend to all tubie families. On one of our most recent holidays to Cyprus Eliza had caught her button overnight, unaware to us she had no button in for hours. When she woke distressed in the morning covered in milk + only a pin hole for a stoma all I could think of was we needed to get that button back in. It took us some time + was upsetting for us all, but we managed to re-open to stoma + replace the button. Panic over + Eliza was straight back to enjoying her holiday.”
Tubie Advice from Eliza + Her Family
“My advice would be to other parents/caregivers is to not let tube feeding be a barrier around oral feeding situations. I have always included Eliza around mealtimes + feeding-related activities as food is a big part of life + I didn’t want her excluded from these situations. Even though she is tube fed she still enjoys baking + also joining us or her peers at the table at mealtimes.”
Guest Author: Lorenza (Eliza’s Mother)