What is it really like to be the sibling of a child with additional medical needs?

In this episode, I sit down with my two older kids, Keira and Asher, as they share their honest perspective on what it’s like having Ezra as their brother. From the challenges to the changes, and the resilience they’ve built along the way, this conversation shines a light on the often-unseen impact of medical complexity on siblings.

We’re also joined mid-episode by Tash and Nikki from Coasties Magazine, who are amplifying local voices and sharing community stories across the Central Coast.

You can follow them on Instagram: @coastiesmag

or visit them at coastiesmag.com.au.

This episode is proudly sponsored by Spewy - the must-have product making family life easier (and less messy!). Listeners of Beyond The Tube can access an exclusive 15% discount using the code BEYOND at checkout.You can follow them on Instagram: @spewyau or visit them at spewy.com.au.

I'd love to hear from you - please feel free to reach out!

Instagram: @beyond.the.tube.podcast 

Email: [email protected]

This is a Podvan Media production.

Listener discretion is advised. This episode contains a personal account of a traumatic parenting journey, including a brief mention of self-harm. If this conversation brings anything up for you, help is available. You can contact Lifeline anytime on 13 11 14.

In this powerful episode, Fi is joined by Amy, who shares the deeply personal and challenging story of her son, Thomas. Amy recounts how a negative experience at a residential stay led to an oral aversion, dehydration, and ultimately, an NG tube.

Amy speaks with raw honesty about the isolation that followed, the lack of resources in New South Wales, and the emotional toll it took on her and her family. She details her fight within a fractured health system, facing rejections from multiple paediatricians and navigating the conflict between public and private care. This is a story about a mother’s desperation, resilience, and the profound impact of finally finding a supportive medical team that helped Thomas become tube-free.

A massive thanks to our sponsor Blended Tube Feeding.

Join the Community!

Blended Tube Feeding Made Simple is a private online community full of resources, recipes, getting-started videos, and family-to-family connection. Normally $37 USD/month - Beyond The Tube listeners get 25% off with our exclusive affiliate link: 👉 https://blendedtubefeeding.com/blended-tube-feeding-made-simple-affiliate/?affiliate_code=db7bc8 No lock-in. Cancel anytime. Get what you need, stay as long as it helps.

Find out more and follow on Instagram: @blendedtubefeeding

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 

Email: [email protected]

This is a Podvan Media production.

In this episode, Fi chats with Hilarie Geurink, the founder of Blended Tube Feeding - a paediatric dietician and passionate advocate for real food blends. Hilarie has supported hundreds of families worldwide in making the switch to blended diets, helping them navigate medical resistance, build confidence, and simplify the process of nourishing their tube-fed children.

We explore the benefits of blended diets, debunk common myths, and highlight practical tools to make the journey feel less overwhelming.

Resources from Hilarie:

• Blenderised Tube Feeding: What Does the Research Actually Say?  

• Blended Tube Feeding Blog

Join the Community: Blended Tube Feeding Made Simple

Hilarie also runs Blended Tube Feeding Made Simple, a private online community full of resources, recipes, getting-started videos, and family-to-family connection. Normally $37 USD/month - Beyond The Tube listeners get 25% off with our exclusive affiliate link: https://blendedtubefeeding.com/blended-tube-feeding-made-simple-affiliate/?affiliate_code=db7bc8

No lock-in. Cancel anytime. Get what you need, stay as long as it helps.

Follow on Instagram: @blendedtubefeeding

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 

Email: [email protected]

This is a vital conversation for any parent navigating feeding challenges and looking for compassionate, practical guidance.

In this episode, speech pathologist Eliza from Milk and Munch joins Fi to discuss the intricacies of paediatric feeding therapy. She explains her specialisation and clarifies the key differences between a speech pathologist who focuses on communication and one who centres on feeding.

Eliza breaks down two common but often misunderstood challenges (oral aversion and dysphagia), explaining what they are, how they can co-exist, and the child-led strategies used to manage them. She reinforces that feeding therapy is a long game, emphasising the importance of building trust, advocating for your child, and celebrating even the smallest steps of progress.

Milk & Munch are a passionate and experienced Speech Pathology / Feeding Therapy team based on the Central Coast, NSW, who support infants and children with a wide range of feeding difficulties including paediatric feeding disorder, paediatric dysphagia, breastfeeding, bottle feeding, tube feeding and more. 

Connect with Eliza from Milk & Munch:

Website → www.milkandmunch.com.au

Instagram → www.instagram.com/milk.and.munch

A massive thanks to our sponsor TubieFun. Check out their products and community on Instagram: @tubiefunau 

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 

Email: [email protected]

This is a Podvan Media production.

Fi is joined by Manisha Uprety, a Nursing Specialist & Paediatric Complex Care Expert. She shares invaluable advice for parents navigating the often overwhelming transition from hospital to home with a tube-fed child.

Manisha stresses the importance of parents becoming the loudest voice for their child, ensuring they don't accept a discharge until they feel completely confident and equipped. She provides a clear framework for what to ask for (including written plans, extra training, and at-home support).

The conversation also covers practical day-to-day management, including what to do in an emergency, and how to get help for continence related issues.

A massive thanks to our sponsor TubieFun!

Check out their products and community on Instagram: @tubiefunau

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

Email: [email protected]

YouTube:

https://youtube.com/@BeyondTheTube

Connect with Uprety Health:

Instagram: @upretyhealth

Website: https://www.upretyhealth.com.au

Instagram: @beyond.the.tube.podcast Email: [email protected]

This is a Podvan Media production.

Well, this episode will certainly give you the warm fuzzies!

Today, Fi sits down with two incredible sisters, Loz and Rhonda, the driving force behind Central Coast Kids in Need. They share the story of their one-of-a-kind charity that provides crucial financial support to families with sick children on the NSW Central Coast.The organisation operates with no means testing, ensuring help gets to those who need it, when they need it. Loz and Rhonda explain how they assist families with costs for accommodation, petrol, tolls, high-cost prescription formulas (like Neocate), feeding tube supplies, medications, and specialised equipment.

This conversation highlights the power of community and the profound impact of grassroots charity work.You can help make a real difference

When you donate to CCKIN you can be assured the funds are going directly to the kids - and their families - who need it the most.

Donate at: www.cckin.com.au/donate

And please follow their work on

Instagram: @centralcoastkidsinneed

A massive thanks to our sponsor TubieFun. Check out their products and community on Instagram: @tubiefunau

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

Email: [email protected]This is a Podvan Media production.

Fi sits down with Sam, the co-founder of the Heba app, a tool designed to change how families manage and navigate the care of children with additional needs. Sam shares the personal story behind the app's creation, stemming from his experiences with family and volunteering.

He explains how Heba helps families move away from paper folders and scattered notes to a single, secure digital space. Heba is a purpose-built app designed to support families of children with disabilities and complex medical needs. It brings together care coordination, progress tracking, and goal-setting into one easy-to-use platform. By helping parents stay organised and connected with their care team, Heba reduces the overwhelm and makes navigating medical needs more manageable - giving families back time, clarity, and confidence.

Heba Website: https://www.heba.care

Follow Heba on Instagram: @heba.care 

Download the App: https://apps.apple.com/au/app/heba-child-health-journal/id6448462377

And a massive thanks to our sponsor TubieFun.

Check out their products and community on Instagram: @tubiefunau

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 

Email: [email protected]

This is a Podvan Media production.

𝙇𝙞𝙨𝙩𝙚𝙣 𝙣𝙤𝙬 𝙗𝙮 𝙨𝙚𝙖𝙧𝙘𝙝𝙞𝙣𝙜 𝙛𝙤𝙧 𝘽𝙀𝙔𝙊𝙉𝘿 𝙏𝙃𝙀 𝙏𝙐𝘽𝙀 𝙤𝙣 𝙎𝙥𝙤𝙩𝙞𝙛𝙮 𝙤𝙧 𝘼𝙥𝙥𝙡𝙚 𝙋𝙤𝙙𝙘𝙖𝙨𝙩𝙨.

NEW EPISODES FORTNIGHTLY on THURSDAYS

How do you advocate for the right support when your child has complex feeding needs?

In this episode, I’m joined again by NDIS consultant Belle Kelly to deep dive into the specific supports available for our tube-fed kids—whether they’re on NG tubes, PEGs or experiencing feeding difficulties that affect day-to-day life.

We go beyond the basics and talk about the real-life challenges families face trying to get support work funded for young kids, why pre-packaged meals are still valid, and how to navigate the tricky conversation around “informal supports.”

Belle brings practical strategies and lived insight, from capacity building tips to creative ways to present funding requests that actually get heard.

Whether you’re planning your first NDIS meeting or gearing up for a tough review, this one’s full of gold.

A massive thanks to our sponsor ⁠⁠TubieFun⁠⁠. Check out their products and community on Instagram: ⁠⁠@tubiefunau⁠⁠

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

Email: ⁠[email protected]⁠

This is a ⁠⁠Podvan Media⁠ production.

What’s it like to navigate the world of NDIS as a family living with medical complexity? This episode is absolutely eye-opening, with so much to learn and advocate for.

In this one, Fi is joined by Belle Kelly, a business consultant who’s spent more than two decades in the disability sector, specialising in supporting NDIS providers and families. They get right into the complex world of NDIS plans, funding pathways and how to ensure you and your loved ones get the support you deserve.

From Belle’s personal experiences to Fi’s own journey as a self-managed NDIS participant, you’ll hear what works, what doesn’t, and how to push back against a system that can feel overwhelming.

If you’re an NDIS participant or supporting someone who is, we hope this is helpful for you.

A massive thanks to our sponsor ⁠TubieFun⁠. Check out their products and community on instagram: ⁠@tubiefunau⁠

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

Email: [email protected]

This is a Podvan Media production.

How can speech therapy make a life-changing difference for kids and their families?

In this episode, I chat with Bree, a speech therapist with over ten years’ experience who now runs a private practice and coaches other speech therapists. Bree explains how speech therapy covers so much more than just talking delays, from working with children who have feeding tubes to supporting social skills and collaborating with schools.

We discuss how building strong relationships between families, therapists, teachers and support teams is key and share practical advice for parents feeling overwhelmed about speech therapy or navigating NDIS funding.

Whether you’re a parent, carer or professional, this episode offers real life insights and hope for the journey ahead.

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

📧 Email: [email protected]

🎙️ This is a ⁠Podvan Media⁠ production.