Tube to Table

S2, Ep. 21: Illness and Tube Weaning

If your child gets sick in the middle of tube weaning, it can feel like the whole process is falling apart. It’s certainly frustrating but try not to worry. Getting sick is a normal part of childhood, and it’s something every child and family will face again and again over the years. In this episode, Jeni and Heidi talk about how illness can affect appetite, eating skills, and tube use, and they're sharing practical ways to respond without losing momentum or trust in the process.   It may be no surprise that kids get sick a lot. On average, children in daycare or preschool get sick 6–12 times per year, and elementary-aged kids 6–8 times per year. For families of tube-fed children, that means that an illness will almost certainly show up at some point during tube weaning, likely more than once.   Of course we don't want kids to get sick, but when it happens, it's important to figure out a plan that will allow you to respond safely and calmly. When kids are sick, their intake naturally changes. Children without tubes eat much less when they’re ill, and tube-fed kids are no different. During illness, many bodies need a break. That may mean loosening expectations and relying more on tube feeds for a short time and that’s okay. Supporting your child through illness may change the timeline of a wean, but it does not change long-term success.  Key points to keep in mind:  * Safety comes first. Hydration and overall stability matter more than pushing progress.  * Trust your child’s cues. Refusals, comfort foods, or reduced interest in solids are expected when sick.  * Responsiveness builds trust. Respecting “no” during illness reinforces bodily autonomy and helps kids return to eating when they’re ready.  * Kids don’t forget what they’ve learned. Even with setbacks, skills around self-regulation, trust, and feeding remain.  * Plan ahead with your medical team. Ask: “What would we do if my child didn’t have a tube?” and set clear guardrails for illness.  For children with more complex histories, it may take a little longer to return to eating after illness. We know and have seen time and time again that with time, space, and responsive support, they do. Even in cases where tubes need to stay in longer or be temporarily reinserted (like NG tubes), this does not predict weaning failure. Illness isn’t the problem. It's the way we respond that shapes the path forward. When we stay flexible, prioritize safety, and lead with trust, kids recover, reconnect with food, and continue moving forward, even when their journey isn’t a straight line.    ** 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 [http://www.thrivewithspectrum.com/]

S2, Ep. 20: Preparing for Tube Weaning

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.    * First is medical safety: can your child tolerate weaning, and is it safe for their body right now?    * Just as important (and often overlooked) is psychological, social, and developmental readiness. Tube weaning is a big change. For many families, the tube was life-saving or deeply stabilizing at one point, so the idea of removing that safety net can feel uncertain, or even frightening.    * We want to think about what else is happening in your child’s world, too. Are there new siblings, new schools, big life changes? Is this a season where your family can handle a major transition? The stars don’t need to perfectly align, but these factors certainly matter.     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 [https://www.thrivewithspectrum.com/]

S2, Ep. 19: Navigating the Holidays

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 [https://www.thrivewithspectrum.com/]

S2, Ep. 18: Choosing a Program

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

S2, Ep. 17: How to Feed Kids Responsively

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 [https://www.thrivewithspectrum.com/]