What if your child still needs their feeding tube… and that’s not actually considered a failure? What if progress doesn’t mean removing the tube, but learning how to move forward with it? 

For many families, the goal starts as tube weaning. But along the way, some discover their child needs long-term support, or at least more time. For other families, you may know from the beginning that it's likely that your child will always need some form of support from the feeding tube.  This can feel like a confusing middle ground. You might wonder: Did we do something wrong? Are we stuck? The truth is, this space where tube feeds and oral eating coexist is not only valid, but it can be incredibly successful.   

It starts with acceptance. Not giving up but getting grounded in where your child is right now. When you take time to build a stable, low-pressure foundation, feeding often becomes less stressful for everyone. From there, you can better understand: 

One of the most powerful shifts you can make is focusing on autonomy and participation. 

Ask yourself: 

This can look like: 

It’s easy to fall into a performance mindset that includes counting bites, focusing on volume, or pushing exposure. But long-term progress is rooted in quality experiences, not just quantity. 

Try to instead focus on: 

Because a child who feels safe, interested, and included around food is more likely to keep moving forward. 

Tube feeding and oral eating don’t have to be all-or-nothing. In fact, they work best when they’re flexible. Some options families explore: 

The goal is to find a middle ground where your child: 

It’s often a dance, not a fixed plan. And sometimes, increasing tube feeds as kids grow or eating becomes harder is exactly what supports long-term success. One common trap? Keeping the same plan as your child grows. But feeding needs change. Schedules shift. Development evolves. 

Make space to regularly revisit: 

Flexibility is key to keeping the plan aligned with your child—not where they used to be. 

This journey can be longer than expected. And that can be hard. But staying on tube feeds while making progress with oral eating is not a step backward! It’s a thoughtful, responsive path forward. Pause when you need to. Adjust when it makes sense. Progress is still happening, even if it looks different than you imagined. 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com  

You’ve spent months (maybe years) keeping your child safe, nourished, and growing with a feeding tube. And now… the moment you’ve been working toward is here! Tube removal. But instead of just relief, you might be feeling other unexpected emotions: uncertainty, sadness, even a little fear.  Jeni and Heidi are here this week to help paint a picture of what tube removal and next steps may look like. 

Getting ready to remove a feeding tube is a huge milestone. It’s often the goal from the very beginning, but when you finally arrive, it can feel bigger and more emotional than expected. After all the effort that went into placing the tube, using it, and eventually weaning from it, many families are left wondering: What now? The truth is, there aren’t a lot of resources guiding families through this specific transition. So let’s walk through some key things to consider. 

How do you know it’s time? 

While medical providers ultimately guide the decision, here are some important readiness signs to reflect on: 

And one more that matters just as much: 

This isn’t just a medical transition! It’s also an emotional one. Take a moment to reflect on your family’s journey. The highs, the stress, the resilience. Many parents find that alongside the hard parts, there’s also growth. What you’ve learned, how you’ve adapted, and how deeply you’ve shown up for your child. 

For your child, this experience may be harder to fully understand but it still matters. For some kids, the tube has always been part of their body. Letting it go might feel: 

Just like saying goodbye to a pacifier, some children, especially older ones may need time and support to process the change. You know your child and how they handle changes and transitions.  If they need a little more time and preparation to process you can help by:   

As you move forward, think about how you want to remember this chapter. Some families choose to: 

It’s also so important to celebrate! This is a big deal. Whether it’s a quiet snuggle, a family celebration, or a simple moment of acknowledgment, try to pause and take it in. Your child has done something incredible. And so have you. Saying goodbye to the feeding tube isn’t just the end of something, rather, the beginning of a new chapter. One built on trust, growth, and everything your family has learned along the way. However it looks for you, make space for it. You’ve earned that. 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com  

Jeni and Heidi are back this week to talk about how to get back on track when things feel like they're falling apart. Tube weaning is rarely a straight line. If things feel off track, you’re actually right where many families find themselves at least once in their journey. 

Tube weaning is often expected to be a simple shift: less nutrition through the tube and therefore more by mouth. In reality, it’s much more complex. Medical needs, sensory experiences, digestion, motor skills, and emotional safety all play a role. On top of that, families are navigating stress, fatigue, and the pressure that can come with wanting the process to go well. Because of this, most weaning journeys include a moment where things feel like they’ve stalled or gone off track. That doesn’t mean your child can’t do it. In fact, these moments are so common that in our program we expect them and plan for them. 

When this happens, the goal isn’t to panic or assume the wean didn’t work. Instead, it’s about getting back on track by pausing and zooming out. Much like climbing a staircase, if you get winded you don’t go all the way back to the bottom! Instead, you might pause at the next landing. During tube weaning, that might mean adjusting support, reassessing your child’s needs, and working with your team to find the next stable step forward. 

Responsive feeding encourages families to look beyond just volumes and bites and consider the bigger picture: 

Progress during tube weaning is often subtle. Small shifts might look like more comfort at the table, a few extra bites, increased curiosity about food. All of those are meaningful steps in learning to eat. If you find yourself feeling stuck, it’s okay to pause, reflect, and seek additional support. Sometimes getting back on track simply means bringing in another responsive feeding professional who can collaborate with you and your medical team to help guide the next step. 

It's true that transitioning from the tube to oral eating can be messy, emotional, and unpredictable but that doesn’t mean you’re doing it wrong. Sometimes the most important step forward is simply pausing, zooming out, and finding the next place to begin again. You've got this and we're here to help! 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com  

In tube weaning, we hear all the time, “We just need to create hunger.” But hunger isn’t a button you push. It’s a learning process and understanding that changes everything. 

Hunger is the body’s physiological signal for energy. It’s driven by things like blood sugar and growth needs. Appetite is different: it’s the desire to eat, shaped by experience, interest, sensory input, and comfort. Both matter in tube weaning. For many tube-fed kids, hunger hasn’t been a consistent experience. Feeds are often delivered at the top end of calorie needs, which keeps children safe and growing but may leave little room to actually feel hunger. Sometimes what’s felt is relief from fullness, not true hunger. 

What Gets in the Way? 

Every child, every opportunity, and every day is different. 

What does it look like in tube-fed kids? 

We often hear from families that when they first begin introduction periods of hunger into their child's day or eating experiences is that it doesn't look like it's "working".  It's important to remember that hunger is not an on/off switch. It develops through repeated, supported experiences over time.

Early signs can be subtle: 

Those moments count.  It's important to notice those and quietly begin to build on those successes by noticing how and when your child is responding and create situations that allow them to explore and expand at their own rate.  

Give it time.  Skipping one feed doesn’t mean a child will eat that amount by mouth. It takes consistent, supportive exposure in the presence of manageable hunger. Too much hunger doesn’t help either. When a child is overwhelmed, learning stops. We’re looking for the middle: enough hunger to spark interest, not so much that it causes distress. Most importantly, we start with belief. Many children aren’t unable to feel hunger, they simply haven’t had the chance to learn what it feels like yet. 

Instead of “flipping” hunger on, we carefully create space for it by: 

Tube weaning isn’t about forcing hunger. It’s about creating safe, responsive opportunities for your child to experience their body’s signals and learn from them at their pace, in their way. 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com  

Happy Feeding Tube Awareness Week! Jeni and Heidi are here this week to celebrate your family and to talk about how to gently and meaningfully include your tube-fed child in family mealtimes without pressure to eat. Meals are about so much more than calories or consumption! They’re also about connection, belonging, learning, and shared experiences. Whether your child eats by mouth, by tube, or both, they deserve to feel included, powerful, and safe at the table. 

Things to consider: 

And, if your child uses a feeding tube long-term, they can still grow up knowing they’re included and valued at mealtimes, no matter how they receive nutrition. This Feeding Tube Awareness Week, let’s celebrate every tubie, every caregiver, and every version of togetherness, because connection is always on the menu. 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com 

If you’re thinking about tube weaning, this probably isn’t a new idea. It’s a question that’s been sitting with you for a while: Is my child ready? And underneath that, how do we prepare so this can be successful? 

Readiness: Preparing for tube weaning starts well before any feeds are actually reduced, and a huge part of that is making sure your child (and you) are truly ready.  We look at readiness in a few big-picture ways.   

Understanding the Big Picture: It's important to understand that tube weaning is not a straight line and not a checklist, rather, it’s individualized and holistic. Many parents are surprised to learn that “do no harm” is more important than developing skills or "plumping" kids up in order to prepare for transition to oral eating.  Kids don’t need to eat before they can be weaned; in fact, most kids learn to eat by eating and by discovering their own internal motivation. In the same way, weaning isn't just about intake, it should foster the development of self-regulation, and "plumping kids up” can actually undermine that process.  Growth and development are personal, and externally driving intake often makes the process harder, not easier.   

Minimize the Negative: When food has felt uncomfortable, unsafe, or pressured for a long time, our first job is often to stabilize things and protect your child’s relationship with food and with the people feeding them. Sometimes that means pausing therapy exercises, backing off skill work, and creating space for rest, trust, and predictability. That pause can feel really uncomfortable for parents, but it’s often one of the most powerful ways to prepare a child for what comes next.  

Create Stability: Creating ease and predictability matters more than many people realize. Tube-fed kids have often lived through constant changes: new formulas, medical tests, feeding plans, and schedules, all on top of regular life stress. They deserve a chance to experience food and daily routines without everything constantly shifting. This doesn’t mean avoiding food altogether. We want kids to still be included at family meals and to touch, explore, and play with food on their terms.  

Foster Autonomy: Eating requires agency, and protecting your child’s ability to say “no” is not a setback. It’s a skill. Your job is to decide what food is offered and when, whereas, your child’s job is to decide if they eat and how much. A “no” is information, not failure, and learning that their body cues are respected builds trust that pays off later.  

Prepare Yourself: Finally, preparation isn’t just about your child! It’s about the grown-ups too. Tube weaning changes routines, disrupts what feels familiar, and can bring up a lot of fear and pressure to “do it right.” Thinking ahead about emotional support, logistics, and flexibility is incredibly helpful.   

Get curious: One of the most important jobs you have is getting curious, not just about food, but about your child. What helps them feel safe? What overwhelms them? How do they communicate comfort or stress? Many parents of tube-fed kids were never given the space to really learn who their child is outside of medical needs.   

When safety, trust, and autonomy come first, the process has room to unfold in the way your child actually needs. Thoughtful preparation isn’t slowing things down. Instead, it’s how we protect safety, trust, and the long-term success of the weaning journey. 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com 

Navigating the holidays while tube-weaning can feel like a lot. Busy schedules, big gatherings, and traditions with friends or family can all add extra pressure, even when you don't factor in a feeding tube!  When it begins to feel like too much, it helps to zoom out and remember the real goal of the season: connection. Your child can join in family rituals and be part of the fun even if their feeding journey looks different. When we focus less on how much they ate and more on shared experiences, mealtimes get lighter for everyone. 

Two common holiday traps are pressure (“just try a bite”) and restriction (“not that food again!”). Even well-intended comments can make kids shut down or feel guarded around food. Instead, let the holiday table be a place to explore: seeing, smelling, touching, holding a cup, or sticking with comfort foods. By letting kids engage at their own pace, they are learning what is meaningful to them, rather than simply learning to be cautious and on-guard.  

Family gatherings may bring questions or unhelpful comments about eating or progress. A simple boundary or ready-to-go phrase can protect your child and keep things calm. Remember that most people mean well; they just need guidance. Your own energy matters too! When you eat what you enjoy, take breaks, and forget about trying to be perfect,  your child feels safer and more regulated. 

And remember: holiday eating is different for every kid. New environments and lots of stimulation naturally change appetite and participation. Your child might eat more, less, or barely engage and all of that is okay. What matters most is that they feel included and capable. Offer familiar foods, adjust routines if they’re overwhelmed, and give them ways to join the table that don’t involve eating. That might look like passing a spoon, chatting with family at the table, or eating separately and joining in once things quiet down. A mix of connection, boundaries, and flexibility creates a holiday season that supports both your child’s feeding journey and their overall well-being. You've got this! Happy Holidays! 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com 

Heidi and Jennifer are back today to help you feel empowered to choose the right tube weaning program for your child, your family, and yourself. Choosing a tube-weaning program is a major decision for families, especially when the information available can feel scattered or confusing. At the heart of this choice is your child’s safety, both physical and emotional. A solid program should prioritize medical oversight, work collaboratively with your child’s healthcare team, and have clear safety parameters in place for monitoring hydration, growth, and overall wellbeing. Just as important is your experience as the parent! Feeding is deeply tied to how we parent and connect with our kids, and when it becomes stressful or uncertain, that impact matters. You should be an active participant in the process, supported by professionals who listen to your insights, respect your instincts, and protect the relationship you have with your child. 

It’s also essential to consider the environment where the learning will take place. Many children do best in spaces that feel familiar and low-stress, which is why home-based approaches can be so powerful. They allow clinicians to see the real factors influencing feeding and help kids practice skills where they will ultimately use them. Inpatient or clinical programs can offer benefits too, like on-site medical support and multidisciplinary teams, but it’s important to understand what mealtimes will look like and how they plan to help your child generalize those gains back home. Virtual programs are convenient, but even if the communication is virtual, tube weaning is still a very real part of your child's health journey.  Virtual programs should prioritize safety, adapt to your child’s unique needs, offer timely communication, and avoid a one-size-fits-all model. Whatever the setting, the program should be flexible, child-led, and ready to pivot when challenges or “what if” moments arise. 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com  

Heidi and Jennifer are back! This week, they are sharing some tips and important pillars for feeding kids responsively. When children are learning to eat after having been tube dependent, it’s easy to focus on hunger only, but true progress comes from safety, comfort, and connection first. Eating isn’t just about what’s on the plate! It’s shaped by the environment, communication and language around eating and feeding, and how your child feels. Before thinking about what foods to offer, we encourage you to start by noticing who your child is outside of mealtimes. How do they handle new situations? Noise? Mess? These clues help you shape a mealtime experience that feels predictable and safe, which is where learning to eat begins. 

Early on, comfort and enjoyment matter more than how much your child eats. Food is new and can feel hard, so try to focus on helping your child feel secure and curious before volumes and varieties. That might mean sitting together on the floor, offering familiar snack foods, or keeping mealtimes playful and low-pressure. Remember the Division of Responsibility. You decide what, when, and where to offer food, and your child decides if and how much to eat. It’s about providing structure while allowing freedom, so your child can explore food at their own pace. 

Progress in tube weaning certainly isn’t linear. It’s a process of discovery. Some days will go smoothly and others won’t, and that’s okay. Reflect on what you notice, stay flexible, and keep comfort at the center of the oral eating experiences. When you focus on safety, connection, and responsiveness instead of consumption, you create the foundation your child needs to build trust with food and eventually eat with confidence and joy. 

** Please remember this podcast is NOT meant to replace the support and guidance of your child's medical team.  Consult with your doctor before starting the weaning process.** 

Don’t forget to follow us on social media for more helpful information @Thrivewithspectrum on Instagram and Thrive by Spectrum Pediatrics on Facebook. You can also find out more information about the programs we offer at www.thrivewithspectrum.com