Beyond The Tube: Real Stories, Real Advice

Ep28: The Blend Magazine - Changing How Tube Feeding Is Seen

I was so excited to sit down with Mel, the founder and editor of the gorgeous publication, The Blend [https://www.theblendmag.com/] magazine. Mel and I talked all about how this beautiful resource came to be, starting from a very desperate and personal place when her son, Arlo, had a horrendous start to his tube-feeding journey. Mel shared her experiences of navigating her son's diagnosis of quadriplegic cerebral palsy and why she felt compelled to challenge the clinical, sterile imagery that usually surrounds disability. We explored how the magazine acts as a mirror for little people seeing themselves represented for the first time, while also providing an authentic, premium space for adults who tube feed. Our conversation hit back hard against the "charity mindset" and "inspo porn" so often pushed by mainstream media, focusing instead on the vibrant, multi-layered reality of our everyday lives. You can find out more about The Blend and connect with Mel here: * Website: https://www.theblendmag.com/ [https://www.theblendmag.com/⁠] * Instagram: @the_blend_mag [https://www.instagram.com/the_blend_mag/] We’re building a community here - one story at a time - and I’m so glad you’re along for the ride. Please feel free to reach out! Instagram: @beyond.the.tube.podcast [https://www.instagram.com/beyond.the.tube.podcast] Email: beyondthetubepodcast@gmail.com [beyondthetubepodcast@gmail.com] This is a Podvan Media [https://www.podvan.com.au] production.

Ep27: Michelle's Story Part 2 - The Hidden Trauma of Feeding

If you're just joining us, I highly really recommend you go back to Episode 26 to hear the first part of Michelle's incredible story. In this episode, Michelle opens up about the hardest part of her journey, and her answer really surprised me. It wasn't the medical side, but the psychological impact of feeding trauma on her daughter, Mila, and the unexpected regression after a successful weaning period. We talk about the immense guilt parents can feel, the challenges of navigating public spaces with a feeding tube, and the absolute necessity of keeping detailed logs. More than anything, this conversation is a reminder that you are not alone. There is a whole community of parents who understand the fear, the exhaustion, the setbacks, the small wins and the days where you just need to vent. You can check out Mila's story from The Blend Mag here [https://www.theblendmag.com/family-stories/here-for-the-celebrating-and-the-venting] We’re building a community here - one story at a time - and I’m so glad you’re along for the ride. Please feel free to reach out! Instagram: @beyond.the.tube.podcast [https://www.instagram.com/beyond.the.tube.podcast] Email: beyondthetubepodcast@gmail.com [beyondthetubepodcast@gmail.com] This is a Podvan Media [https://www.podvan.com.au] production.

Ep26: The Part Nobody Warns You About - Isolation in Tubie Life

In this episode, I sit down with Michelle, a fellow tubie mum from New York, to talk about her daughter Mila and the long road that brought their family into tube feeding. From the very beginning, Michelle knew something wasn't right with feeding, and what followed was a whirlwind of appointments, failed feeds, hospital admissions, scary tests, and the kind of overwhelm that so many of us know far too well. Michelle shares what it was like watching Mila struggle to feed, being told she was failing to thrive, and eventually learning that silent aspiration and a laryngeal cleft were at the heart of it all. We talk about NG tube life, why it felt so traumatic, and the relief that came with moving to a G-tube. One of the biggest takeaways from this chat is that even when the medical reason for a feeding tube is sorted, feeding challenges do not always disappear. Michelle speaks so openly about Mila's ongoing journey with ARFID and paediatric feeding disorder, and why the psychological side of feeding deserves so much more awareness. I really hope this episode helps families feel less alone, more seen, and a little more understood in the middle of it all. We’re building a community here - one story at a time - and I’m so glad you’re along for the ride. Please feel free to reach out! Instagram: @beyond.the.tube.podcast [https://www.instagram.com/beyond.the.tube.podcast] Email: beyondthetubepodcast@gmail.com [beyondthetubepodcast@gmail.com] This is a Podvan Media [https://www.podvan.com.au] production.

Ep25: Why Hospital Clothing Matters More Than We Think with Jason from Supertee

I was so glad to sit down with Jason from Supertee for this conversation, because this is one of those ideas that makes an immediate difference to families like ours. If you haven't come across Supertee before, it's a medical garment disguised as a hero costume, created to help children feel more comfortable, more capable, and more like themselves during hospital stays and treatment. Jason shares the deeply personal story behind Supertee, which began during his daughter Angela's cancer treatment. We talked about the hospital gown as a symbol of illness, the power of play and imagination, and why choice matters so much for children whose lives are often shaped by medical appointments, procedures, and things they never asked for. We also spoke about siblings, dignity, medical trauma, and how small changes can completely shift how a child experiences hospital. We’re building a community here - one story at a time - and I’m so glad you’re along for the ride. Please feel free to reach out! Instagram: @beyond.the.tube.podcast [https://www.instagram.com/beyond.the.tube.podcast] Email: beyondthetubepodcast@gmail.com [beyondthetubepodcast@gmail.com] This is a Podvan Media [https://www.podvan.com.au] production.

Ep24: Beyond the Diagnosis - How To Simplify Complex Reports

I was so excited to sit down with Leticia, the CEO and co-founder of the incredible app, Understanding Zoe [https://understandingzoe.com/]. Leticia and I talked all about how this app came to be, starting from a very personal place with her daughter, Zoe, who is autistic and has ADHD. Leticia shared her own journey of discovery, and how the challenges she faced as a parent sparked the idea for an AI-powered "second brain" for families raising neurodivergent children. We explored how Understanding Zoe helps connect a child's entire care village (therapists, teachers, support workers) by providing quick, relevant information, all while maintaining a strengths-based approach. A huge focus of our chat was data safety. Leticia, with her background in big data and AI, has made sure Understanding Zoe is ISO 27001 certified (that's bank-level security!), with all data anonymised, encrypted, and stored safely in Australia, completely offline from the internet. This means your family's sensitive information is incredibly secure, which I know is a big concern for many of us. You can find out more about Understanding Zoe and connect with Leticia here: * Website: understandingzoe.com [https://www.understandingzoe.com/] * Instagram: @understandingzoe [https://www.instagram.com/understanding.zoe/] * Research on Invisible Load: understandingzoe.com/research [https://understandingzoe.com/white-paper] We’re building a community here - one story at a time - and I’m so glad you’re along for the ride. Please feel free to reach out! Instagram: @beyond.the.tube.podcast [https://www.instagram.com/beyond.the.tube.podcast] Email: beyondthetubepodcast@gmail.com [beyondthetubepodcast@gmail.com] This is a Podvan Media [https://www.podvan.com.au] production.