Inside the Children's Hospital

When Camryn's fearless 4-year-old suddenly became anxious, her gut said something deeper was wrong. Multiple "all clear" evaluations followed—until a post-virus crash at age 6 that led to a diagnosis under the PANS/PANDAS umbrella (autoimmune encephalitis). Camryn shares how a steadfast pediatrician, early referrals, and balancing clinical guidance with peer support helped her daughter reclaim everyday life—right down to summer swim league. She also opens up about protecting her child's privacy, supporting siblings, starting trauma therapy, and building margin for joy. This is a masterclass in parental advocacy, nervous-system care, and creating a trusted circle around your child. Y Resources mentioned PANDAS Parents (national Facebook community) — peer support and practical tips. ASPIRE (clinical education & navigation for PANS/PANDAS). MomBrain.com — anonymous Q&A platform for moms (Camryn is co-founder). School-based supports (counselor, principal, buddy programs) for siblings. 🎉 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Keywords PANDAS, PANS, autoimmune encephalitis, pediatric anxiety, OCD in kids, basal ganglia inflammation, post-strep, family advocacy, sibling support, pediatrician partnership, trauma therapy, child life, SupportSpot, MomBrain, Austin families

In this reposted episode, Courtney shares her journey of receiving her daughter Annie's Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie's resilient and joyful spirit. Resources mentioned in this episode: Annie Louise Foundation – A resource hub for parents and caregivers Follow Courtney on Instagram Read Courtney's most recent blog post about how the Annie Louise Foundation helped with Central Texas Flood relief in Kerrville, TX 🎉 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 Keywords: Down Syndrome, Trisomy 21, congenital heart defect, VSD, pulmonary hypertension, NICU, ECMO, parent advocacy, child life, Spoony Threads, SupportSpot The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

Tuberous Sclerosis Complex, epilepsy in children, and autism parenting—in this powerful episode, women's health coach and mom of four, Erin Trier, shares her family's eight-year journey to finally receiving a TSC diagnosis for her son, Brendan. She talks about the early seizures, navigating a rare genetic disorder, and managing the added challenges of autism and uncontrolled epilepsy. Erin opens up about the emotional and mental toll, the power of vulnerability, and the practical organization systems that help her family thrive—including her genius laundry strategy. She also shares why self-care, community connection, and support are essential for parents raising a medically complex child. You will not want to miss this episode. Resources Mentioned: Erin's website: www.erintrier.com Instagram Podcast: Empowered in Health 🎉 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 Keywords: Tuberous Sclerosis Complex, TSC diagnosis story, rare genetic disorder, seizure disorder, epilepsy in children, autism parenting, medically complex child, women's health coach, parenting tips, self-care for parents, family organization, SupportSpot app, parent mental health, coping strategies, special needs parenting, rare disease awareness. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

Victoria Garcia—lovingly known as "Nurse Vic"—shares her powerful journey as a nurse and mom of two, including her daughter Julia, who was diagnosed with achondroplasia during pregnancy. In this heartfelt episode, Victoria opens up about the emotional and logistical challenges of navigating a rare diagnosis while working at the very hospital where she received the news. She talks about the strength she found in community, the importance of informed advocacy, and what it truly means to be in alignment with your purpose. 🎧 This is an inspiring listen for any parent facing a diagnosis or anyone who supports families in medical settings. Resources Mentioned: Victoria's landing page: www.shortlongbones.com For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → childlifeoncall.com/app Support your child through medical moments with the same guidance used by hospitals across the country. For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → childlifeoncall.com/childlifecircle The Circle is where child life professionals come together for real talk, resources, and rejuvenation. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Keywords: Achondroplasia, skeletal dysplasia, dwarfism, rare diagnosis, nurse mom, pediatric advocacy, parenting journey, postpartum, SupportSpot, Child Life On Call, Nurse Vic, community support, early diagnosis, medical parenting

In this moving and hope-filled episode, mother-daughter duo Quinn Wyatt and Kirby Larson share the deeply personal story behind their middle grade novel, Gut Reaction. Diagnosed with Crohn's disease as a teen after years of being dismissed, Quinn opens up about her experience living with a misunderstood chronic illness. Kirby, an acclaimed author, reveals what it took to revisit this painful chapter of their lives and co-write a book that helps kids feel seen. Together, they explore diagnosis delays, self-advocacy, parenting through illness, and how their storytelling became a form of healing and community connection. Resources Mentioned: Gut Reaction by Quinn Wyatt and Kirby Larson Crohn's & Colitis Foundation – https://www.crohnscolitisfoundation.org/ Learn more: https://gutreactionbook.com For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → childlifeoncall.com/app Support your child through medical moments with the same guidance used by hospitals across the country. For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → childlifeoncall.com/childlifecircle The Circle is where child life professionals come together for real talk, resources, and rejuvenation. Keywords: Crohn's disease, chronic illness in kids, middle grade books, parent advocacy, child life, invisible illness, IBD, Camp Oasis, Kirby Larson, Gut Reaction book, diagnosis journey, storytelling therapy, chronic illness support, medical parenting, Child Life On Call Podcast The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

"What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave." – Kate, founder of Brave Bears Club In this reposted and newly updated episode, we revisit Kate's emotional and empowering story as she shares her daughter Charlotte's unexpected diagnosis of infantile spasms (IS) at 22 months old. What began as a terrifying medical journey transformed into an advocacy movement—Brave Bears Club—that now supports children with pediatric epilepsy around the world. Kate reflects on the early signs of IS, how her instincts as a mom led to a critical diagnosis, and what life has looked like navigating treatments, therapies, and the unknown. You'll also hear how she turned her experience into tangible tools of hope: an inclusive children's book and EEG comfort bear to prepare kids for their medical experiences. Key Takeaways: ✅ Learn the early warning signs of infantile spasms ✅ Hear how Kate coped while pregnant with her second child ✅ Understand the emotional rollercoaster of IS treatment ✅ Discover how play and preparation inspired the Brave Bears Club ✅ Get practical advice from a parent-turned-advocate Timestamps: [03:00] Meet Kate: From Massachusetts to Colorado and back again [04:00] Diagnosis during pregnancy: Receiving life-changing news at 8 months pregnant [06:00] Trusting her mom instinct and the challenge of being dismissed [08:00] What to watch for: Rhythmic, involuntary movements and why video is essential [11:30] Comparing IS to SIDS awareness and the need for change [15:00] Two-thirds of kids don't respond to first treatments—Kate's road to success [18:30] Creating the book: Helping Charlotte and others understand IS [25:00] Turning fear into empowerment through play and preparation [30:00] Where to find the book and stay updated on Brave Bears Club 🧸 Resources from Kate: Brave Bears Club Website Follow on Instagram: @bravebearsclubco EEG Bear Kits Share This Episode If you know a parent, grandparent, or pediatric care provider who is navigating infantile spasms and seizures—please share Kate's story. It's a powerful reminder that no one is alone in this journey. A single message or text could offer the hope and strength someone needs right now. 📩 Copy this episode link and share it in your support group, hospital team chat, or parenting forum. More Ways to Stay Connected & Supported Whether you're a parent, caregiver, or pediatric professional—we have something just for you: For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → childlifeoncall.com/app Support your child through medical moments with the same guidance used by hospitals across the country. For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → childlifeoncall.com/childlifecircle The Circle is where child life professionals come together for real talk, resources, and rejuvenation. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

"The tears legitimately just turned to curiosity—and she wanted to play." – Mary Jenner, BSN and Founder of the Butterfly Pig Meet Mary, a former pediatric oncology nurse turned full-time entrepreneur and founder of The Butterfly Pig. In this heartfelt episode, Mary opens up about how play transformed her bedside care, her daughter's unexpected NICU stay due to HIE, and how she's now helping families and clinicians reduce pediatric medical trauma through imaginative medical play tools. Listen in to discover how Mary's passion is revolutionizing how we empower kids and parents in healthcare. 🔑 What You'll Learn in This Episode ✅ What HIE is and how Mary's family navigated the NICU ✅ How realistic medical play toys reduce trauma and increase confidence ✅ The power of parents in pediatric care and preparation ✅ How nurses and child life specialists can use play more effectively ✅ How Mary's business blends creativity, compassion, and advocacy 🕰️ Episode Highlights & Timestamps [00:00] Introduction [01:00] From Nurse to Entrepreneur: Mary's Journey [03:00] The Butterfly Pig Mission & Empowering Parents [06:00] Mary's NICU Experience with Her Daughter's HIE Diagnosis [07:00] How Play Changed a NICU Visit [11:00] Play as a Parenting Tool in Medical Moments [13:00] Misconceptions in Medical Play – Letting Kids Lead [16:00] From Fear to Confidence: A HLHS Echo Story [17:00] Mary's Bedside Story That Sparked It All [19:00] Building a Business That Defies Expectations [20:00] The Meaning Behind "The Butterfly Pig" [23:00] Getting Started with Medical Play at Home [25:00] Final Reflections and Gratitude 🌐 Guest Resources & Links Website: thebutterflypig.com Instagram: @thebutterflypig Email: [email protected] 📣 Share This Episode Know a parent navigating their child's diagnosis, a pediatric nurse, or child life specialist? This episode is a must-listen. One story can inspire hope, connection, and powerful play to help normalize medical treatments and procedures. 💛 For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → childlifeoncall.com/app Support your child through medical moments with the same guidance used by hospitals across the country. 👩‍⚕️ For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → childlifeoncall.com/childlifecircle The Circle is where child life professionals come together for real talk, resources, and rejuvenation. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

"I was pumping in the NICU, feeling completely disconnected—and my husband looked at me and said, 'Can you invite her in?' That moment changed everything. A nurse handed me a swab, I gave my baby colostrum for the first time, and I thought, 'I'm a mommy.'" – Tanisha NICU mom and advocate Tanisha shares her deeply moving journey through an unexpected fetal diagnosis, a 157-day NICU stay, and the powerful moments that helped her reconnect with motherhood. Diagnosed at 20 weeks with Lower Urinary Tract Obstruction (LUTO)—a rare, life-threatening condition—Tanisha's son Jaleel faced impossible odds. From transferring care to Cincinnati Children's Hospital, navigating in-utero surgery, to forming a life-saving care team that included her husband and child life specialists, Tanisha's voice is a beacon of strength, love, and resilience. 💛 Whether you're a NICU parent, pediatric provider, or anyone seeking a story of courage and connection—this episode is for you. 💛 Tanisha is a member of the Child Life On Call Parent Adivsory Council. Learn more about our members 🔑 What You'll Learn in This Episode Rare Diagnosis & Brave Decisions: The emotional impact of receiving a LUTO diagnosis at 20 weeks. Choosing Hope: Why Tanisha traveled to Cincinnati for specialized in-utero care. The NICU Rollercoaster: The grief, disconnection, and eventual empowerment she found during her son's 157-day stay. The Power of Support: How a nurse's gesture and her husband's quiet advocacy brought her back to herself. Creating Community: The birth of Medical Moms of NICU, a thriving support space for NICU moms everywhere. 🕰️ Episode Highlights & Timestamps [00:01] Meet Tanisha Introductions and the early motherhood journey with three kids, including a medically complex son. [06:00] The LUTO Diagnosis Processing a devastating and rare prenatal diagnosis—and the impossible choices that followed. [13:00] Choosing Cincinnati Children's Why hearing "Cincinnati" changed everything and led to life-saving care. [23:00] The Turning Point in the NICU A swab, a nurse's guidance, and a husband's quiet wisdom helped Tanisha reclaim motherhood. [30:00] Support Systems in Action How child life specialists and her "Daddy Doula" partner brought healing and hope. [38:00] Post-NICU Life Dialysis at home, G-tubes, and transforming their house into a place of healing—not a hospital. [44:00] A Mission to Uplift NICU Moms Founding Medical Moms of NICU to provide the community she once longed for. [47:00] Meet Jaleel Get to know the joyful, musical, and vibrant little boy who continues to thrive. 🌐 Resources & Ways to Connect Join the Community 👉 Medical Moms of NICU Facebook Group – A private space offering support, self-care, and connection. Follow Tanisha on Instagram 👉 @medicalmomsofnicu Tanisha's Book Reccomendation Set Boundaries and Find Peace by Nedra Tawab Tanisha's Podcast Medical Moms of NICU 💬 Share This Episode If you know a NICU parent, grandparent, or pediatric care provider—please share Tanisha's story. It's a powerful reminder that no one is alone in this journey. A single message or text could offer the hope and strength someone needs right now. 📩 Copy this episode link and share it in your support group, hospital team chat, or parenting forum. 📲 More Ways to Stay Connected & Supported Whether you're a parent, caregiver, or pediatric professional—we have something just for you: 💛 For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → childlifeoncall.com/app Support your child through medical moments with the same guidance used by hospitals across the country. 👩‍⚕️ For Child Life Specialists: Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → childlifeoncall.com/childlifecircle The Circle is where child life professionals come together for real talk, resources, and rejuvenation. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical atten

In the wake of recent flooding in Central Texas, Katie Taylor—child life specialist and mom—pauses the regularly scheduled episode to speak directly to parents navigating uncertainty and grief. Whether you're facing a natural disaster, a scary news event, illness, or another tough moment, Katie offers a compassionate and practical framework to help guide difficult conversations with your child. Drawing from both her professional experience and personal moments with her own daughter, Katie walks you through a 5-step process to ensure these talks are grounded in safety, emotional connection, and honest, age-appropriate communication. Questions, media or collaborations? Reach out to us at [email protected] What You'll Learn in This Episode: Why regulating yourself is the first step to supporting your child How to assess what your child knows or believes about an event (and correct misconceptions) Strategies for explaining complex topics in clear, simple ways How to validate emotional reactions, even when you don't have all the answers The importance of ending with a bonding activity to reinforce connection and security Katie's 5-Step Framework: Regulate yourself Assess what your child knows Explain complex information simply Validate their emotions and responses Close with connection and bonding 🤝 Resources Mentioned: 🔗 Child Life Disaster Relief (CLDR) – Supporting families and professionals during crisis situations: https://www.childlifedisasterrelief.org 📚 Flooding & Crisis Resource Hub for Parents and CCLS: https://childlifeoncall.com/hillcountryfloods [00:00] – Welcome & why this episode matters right now (Texas flooding) [01:00] – The emotional toll on parents and the importance of self-regulation [02:00] – Personal reflection: Katie shares how she coped this weekend [03:00] – Step 1: Why regulating yourself is step one in helping your child [04:00] – Step 2: Two ways tough conversations begin (reactive vs. planned) [05:00] – Creating a safe environment: timing, tone, and physical comfort [06:00] – Step 3: Assessing what your child knows and clearing up misconceptions [07:00] – Example: When Katie's daughter feared the pool would flood their home [08:00] – How to explain complex topics like weather in simple, honest language [09:00] – Step 4: Reading your child's cues and inviting collaboration [10:00] – When kids ask heartbreaking questions (e.g. "Did kids die?") [11:00] – Validating your child's emotions and offering honest responses [12:00] – Step 5: How to close the conversation with a bonding moment [13:00] – Simple ideas: drawing together, taking a walk, or reading a book [14:00] – What to do when you don't have the answers to their questions [15:00] – Why the message of safety, love, and presence matters most [16:00] – Acknowledging the incredible work of Child Life Disaster Relief (CLDR) [17:00] – Where to find resources: childlifeoncall.com/hillcountryfloods [18:00] – Final encouragement: You can do this—and your words matter less than your presence

When Laura's daughter was diagnosed with leukemia, her world stopped. What followed was a powerful journey through fear, resilience, and fierce advocacy. In this episode, Laura DeKraker Lang-Ree—a lifelong educator and now author of The Cancer Parent's Handbook—opens up about the most terrifying day of her life, how she transformed pain into purpose, and why parent-to-parent support is critical in the childhood cancer community. Her reflections are raw, heartfelt, and offer wisdom for every parent facing a medical diagnosis with their child. 🗝️ 5 Key Topics in This Episode: Diagnosis day & emotional impact Finding empowerment through peer support Practical coping strategies for parents Giving kids agency during treatment Long-term reflection, gratitude & growth ⏱️ Timestamps with Details: 00:00] Introduction to Child Life On Call + meeting Laura Katie welcomes listeners and introduces Laura, an educator and mother of three, who shares her personal journey through her daughter's cancer diagnosis. [02:00] Life before diagnosis and early warning signs Laura describes her daughter Cecilia's vibrant personality and the subtle symptoms—like fatigue and pallor—that signaled something was wrong. [04:30] Diagnosis day: from classroom to clinic Laura recounts the moment she received the devastating call while teaching choir class and the whirlwind that followed as her daughter was diagnosed with leukemia. [06:30] The emotional toll and the beginning of advocacy Facing fear and uncertainty, Laura begins to advocate for her daughter's care while navigating the shock and grief that comes with diagnosis. [07:45] Camp experience and the danger of living "in cancer" Laura reflects on a pivotal moment at a childhood cancer camp where she recognized the importance of not letting cancer define her family's entire future. [09:00] Collaborating with doctors + writing the handbook Inspired by the gaps in communication, Laura begins collaborating with her care team and eventually writes The Cancer Parent's Handbook to empower other families. [11:45] The moment she knew she had to advocate fiercely After a doctor's offhand comment about potential cognitive decline, Laura took matters into her own hands and became a determined voice for her daughter's future. [14:00] Giving children power during treatment Laura explains how offering simple choices helped her daughter feel more in control and less fearful during difficult medical procedures. [16:30] Coping skills and caring for the caregiver She shares the importance of self-care, setting boundaries, and creating a support system to survive the marathon of long-term treatment. [21:00] Practical ways to normalize medical trauma Through routines, honest conversations, and using Child Life services, Laura found ways to help her daughter feel safe and empowered during medical care. [26:00] Empowerment through routine and consistency By incorporating rituals like bike rides and post-procedure treats, Laura created a sense of predictability that helped her daughter manage weekly treatments. [28:00] The unexpected gifts of reflection and gratitude Laura opens up about how practices like gratitude journaling helped her find peace and moments of beauty during even the darkest days. [30:00] About The Cancer Parent's Handbook + where to get it Laura shares her motivation for writing the book and how it's now available for parents everywhere seeking guidance through their own childhood cancer journey. 📚 Resources from Laura: 📖 The Cancer Parent's Handbook Website 🛒 Purchase the Cancer Parent Handbook here! 🌍 Follow the CancerParentHandbook on Instagram 🙌 Help Us Grow & Stay Connected If this episode touched your heart or helped you feel more prepared on your cancer parenting journey, we'd be so grateful if you could: 🌟 Rate and review the Child Life On Call Podcast on Apple Podcasts or Spotify — it helps more parents and professionals find these powerful stories. 🔔 Subscribe so you never miss an episode filled with guidance, support, and hope. 📲 Share this episode with someone who needs to hear it today. 🎈 For more resources on supporting children through medical experiences — including expert articles and downloadable tools — visit ChildLifeOnCall.com. 📲Download the SupportSpot App today for Child Life Tools in your pocket 🌟Interested in sharing your story? Reach out to [email protected] Together, we're making child life support more accessible to families everywhere. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast

This episode is dedicated to Katie's dear friend Joe, who recently passed away, leaving behind his wife and two young sons. Joe's story reminds us to live in alignment with our purpose and to cherish the people we love. In this heartfelt episode of the Child Life On Call podcast, Katie Taylor speaks with B.R. Duray, an author, filmmaker, and storyteller whose debut children's book, The Mood Swing, is rooted in his experience of losing his father at the age of 10. With it being Father's Day this past weekend, this conversation takes on even deeper meaning. B.R. shares how grief has shaped his creative life, the ways it resurfaces during important life moments, and how his book can help both children and adults find healing together. Whether you're a parent, a grieving adult, or a healthcare provider, this episode provides validation, comfort, and hope. 5 Key Takeaways from this Episode: ✅ Grief grants both pain and power B.R. explains how losing his dad gave him heightened emotional sensitivity and a creative voice to express and process those feelings. ✅ Grief resurfaces in different stages of life He shares how emotions from his childhood resurfaced 20 years later during his engagement, reinforcing that grief evolves with us. ✅ Reading about grief helps parents, too Though The Mood Swing was written for children, it often evokes emotional responses from adults who find healing in its message. ✅ The Mood Swing originated as a film The story began as a poem and animated concept, but eventually took form as a children's book—and later inspired a short film. ✅ Parents can model healthy grief Katie and B.R. discuss how parents showing emotions in front of children teaches them it's safe to feel and process grief together. 📍Episode Highlights: ⏱️ [3:00] – Katie dedicates the episode to her late friend Joe and reflects on how his life reminds us to live with purpose. ⏱️ [4:00] – B.R. shares how his father's death shaped his creativity and opened his heart to telling meaningful stories. ⏱️ [10:30] – Discussion around how grief reemerges during milestones like engagements and weddings. ⏱️ [16:30] – The story behind The Mood Swing, how it began as a movie concept, and why B.R. shifted to a book format for a deeper connection. ⏱️ [22:00] – B.R. reflects on the emotional reactions he's received from adults who have read The Mood Swing and how grief connects us all. ⏱️ [24:00] – Katie and B.R. talk about the importance of parents being open with their grief in front of children to foster healthy emotional expression. 📘 About The Mood Swing The Mood Swing follows Peter, a young boy navigating the highs and lows of emotion on a magical swing that helps him find balance through physical sensation and presence. Inspired by B.R.'s childhood grief, the book supports kids through big emotions without directly referencing death—making it a versatile tool for many types of emotional challenges. 🌐 Resources & Links from today's episode: Buy The Mood Swing on Amazon Visit moodswing-media.com – View the book trailer, film, or donate a copy 📲 Stay Connected: Follow @childlifeoncall on Instagram Subscribe and leave us a review on your favorite podcast platform Share this episode with a friend, parent, or provider who needs it today The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

We'd like to extend our sincere thanks to our episode sponsor, reStickity®. Their innovative, mess-free reusable sticker sets allow families to personalize hospital spaces with familiar photos and comforting images, helping bring a sense of home to the hospital. To learn more, visit their website and use code CLOC10 for an exclusive discount available to our listeners. In this inspiring episode, we meet Sarah Michelle Boes—nurse practitioner, entrepreneur, and mom to Meadow, who was diagnosed in utero with Tetralogy of Fallot and multiple congenital heart defects. Sarah brings a powerful trifecta of perspectives: as a medical provider, mental health advocate, and dedicated heart mom. We cover: ✅ Meadow's life-saving heart surgeries and long ICU stays ✅ How Sarah navigated new motherhood with OCD and anxiety ✅ The emotional toll of being both a medical provider and a parent ✅ Creating a connection through medical play to ease doctor visits ✅ How Sarah turned survival into purpose through national advocacy Whether you're a fellow medical parent, healthcare provider, or mental health professional, this episode will leave you with real insight into the raw challenges and unexpected joys of raising a child with complex medical needs. Key Topics & Highlights [00:00] – Meet Sarah Michelle Boes Nurse practitioner, entrepreneur, and heart mom Her daughter Meadow's surprise diagnosis of Tetralogy of Fallot at 36 weeks ⏱️ [03:00] – From Business Success to Medical Crisis Selling her business weeks before Meadow's diagnosis The shock of learning Meadow had four heart defects ⏱️ [05:00] – Learning to Navigate as a Medical Parent How Sarah's medical background helped (and complicated) her parenting Teaching her husband how to advocate medically alongside her ⏱️ [07:00] – Mother's Intuition & Switching OBs Sarah felt something was wrong during pregnancy but was dismissed A new ultrasound revealed her daughter's heart looked "weird" ⏱️ [10:00] – NICU Rollercoaster Begins Meadow intubated within hours of birth due to medication side effect Sarah and her husband find strength in teamwork ⏱️ [14:00] – Advice for New Heart Parents The overwhelm of tracking vitals and data post-discharge Feeling more like Meadow's nurse than her mom ⏱️ [17:00] – The Unexpected Second Surgery & Major Setbacks Meadow's patch failed, requiring emergency open-heart surgery Her chest remained open for a week due to complications ⏱️ [21:00] – A Brain Bleed Diagnosis & Mental Health Spiral Sarah shares how uncertainty triggered her OCD Emotional trauma of seeing Meadow cold, still, and open-chested ⏱️ [25:00] – Living in the ICU Full-Time How Sarah and her husband made the hospital their home The benefits of being physically present 24/7 ⏱️ [28:00] – Discharge Shock & OCD Diagnosis Meadow is stable—but Sarah's anxiety peaks post-discharge Diagnosed with OCD just 10 days after coming home ⏱️ [32:00] – Healing Through Gratitude & Giving Back Family vacation sparks the idea for a donation The heart institute is named in Meadow's honor with a mural ⏱️ [36:00] – Sarah's Ongoing CHD Advocacy Work Advocating for the Congenital Heart Futures Act Raising awareness for adult congenital cardiology and research needs ⏱️ [40:00] – The Power of Medical Play Meadow's echos improved after doing medical play at home Sarah incorporates play to help her daughter cope with appointments ⏱️ [43:00] – Reflections & Advice for Other Parents Learning how strong her partnership with her husband is Why having the right support person changes everything ⏱️ [45:00] – Where to Follow Sarah & Continue the Journey Website, LinkedIn, Instagram, and more Connect with Sarah Michelle Boes 📲 Website & Heart Mom Resources: www.sarahmichelleboes.com 📷 Instagram: @sarahmichelleboes 💼 LinkedIn Community & Advocacy Writing: Connect on LinkedIn ❤️ Share This Episode Know a heart mom, Tetralogy of Fallot parent, or healthcare professional who supports families with congenital heart defects? Share Sarah's courageous story to raise awareness, foster mental health advocacy, and connect families navigating similar journeys. 🧠 This episode also sheds light on the mental health challenges parents face—especially postpartum OCD—bringing compassion and visibility to an often-misunderstood diagnosis. 🎙️ Subscribe & Review: Help other heart families and caregivers discover this story by subscribing and leaving a review. 📩 Contact us: [email protected] 🎧 Listen Now and Honor the Strength of Heart Moms Like Sarah #TetralogyOfFallot #HeartMom #CHDAwareness #OCDawareness #MaternalMentalHealth #ChildLifeOnCall #ParentingThroughCHD The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may h

What happens when your world changes with a single phone call? In this powerful reposted episode, NICU dad and advocate Alex Zavala shares his emotional journey of fatherhood after his daughter was born at just 27 weeks. From the emergency C-section and NICU stay to the emotional toll of the "NICU dad shuffle," Alex opens up about the lesser-heard experience of dads navigating medical trauma, guilt, and resilience. As the host of the NICU Dad Podcast, Alex continues to amplify the voices of fathers facing similar experiences. This conversation is an essential listen for NICU families and healthcare professionals alike, reminding us of the often unseen emotional weight fathers carry and how vital their perspective is in family-centered care. Key Takeaways from this week's episode: Premature birth can happen suddenly Fathers experience trauma too The "NICU dad shuffle" is real Life after the NICU is still challenging Community and storytelling are healing for fathers Timestamps & Key Topics [00:00] – Welcome & Episode Intro Alex's story as a NICU dad begins with two premature daughters [04:00] – The NICU Numbers That Stay With You 27 weeks. 2 lbs. 5 oz. 67 days in the NICU—numbers you never forget [06:00] – A High-Risk Pregnancy & Sudden Crisis Despite a stable pregnancy, a 9:00 AM phone call changes everything [10:00] – The Emergency C-Section Racing to the hospital, trauma in the OR, and feeling helpless [15:00] – A Whirlwind of Fear & Responsibility Trying to stay strong for his wife and unborn child amid chaos [20:00] – The NICU Dad Shuffle Begins Managing hospital visits, home life, and caring for the rest of the family [27:00] – The Guilt of Having to Choose The emotional strain of not being able to be everywhere at once [33:00] – First NICU Visit & Early Trauma Walking into the NICU for the first time—alone, overwhelmed, and unsure [38:00] – Life After the NICU: It Gets Harder Why going home with a medically fragile baby brought even more pressure [40:00] – Dads Carry Trauma Too Postpartum stress, partner support, and being the emotional anchor [42:00] – Healing Through Storytelling Why sharing his story and connecting with other NICU dads has been life-changing [44:00] – Where to Find Support 💪 Join the NICU Dad Push-Up Challenge!NICU dads carry an invisible weight—emotionally, mentally, and physically. The "Built For This" Push-Up Challenge is a powerful way to honor that strength. Complete 100 push-ups a day for the number of days your child spent in the NICU, share your journey on social, and tag fellow NICU dads to join. This isn't just a fitness challenge—it's a movement to raise awareness and spotlight the resilience of NICU fathers. 🔗 Use hashtags: #musclesandmiracles #pushwithpurpose #thenicudadpushupchallenge Resources & Links from today's episode 📌 Follow Alex & The NICU Dad Community: Website Podcast Instagram 🎧 More episodes: Child Life On Call Share This Episode Know a NICU dad, partner, or healthcare team that would benefit from hearing a father's perspective? Share this powerful story to spark compassion, awareness, and connection. 🎙️ Subscribe & Review: Help more families find these stories by subscribing and leaving a review. 📩 Contact us: [email protected] 🎧 Listen Now and Honor the Stories of NICU Fathers Like Alex The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

Learning to swallow pills can be a major milestone—and a big challenge—for many kids. In this episode, certified child life specialist Adina Levitan joins host Katie Taylor to break down the myths, fears, and best practices behind teaching children how to confidently swallow pills. From her clinical expertise to creative solutions like affirmations, games, and candy "pill" practice, Adina walks us through her unique approach to supporting kids and parents through this skill-building process. Whether you're a caregiver, clinician, or a parent trying to help your child at home, this episode is packed with insight, encouragement, and practical steps you can start today. In this episode, you'll learn: ✅ Why pill swallowing is a learned skill that takes time and practice ✅ Tools and strategies to make learning fun and pressure-free ✅ How to create a pill-swallowing kit and step-by-step plan ✅ Creative tricks like affirmations, bingo, and candy practice ✅ Why early, low-stress practice is key—and how to know when to ask for more help Timestamps & Key Topics [00:00] – Meet Adina, CCLS Child life journey and hospital experience in surgery and oncology [06:00] – The First Pill Swallowing Consult How a simple Facebook post launched a new resource [08:00] – Why It's Not a One-and-Done Skill Building confidence over weeks, not minutes [09:00] – The Candy Ladder Using sprinkles, Nerds, and Tic Tacs as practice tools [11:00] – The Birth of a Resource How Adina's workbook was created for families and clinicians [12:00] – Unrealistic Hospital Expectations Why pill swallowing consults need more time and less pressure [14:00] – Every Kid Is Different There's no one-size-fits-all technique—just trial, error, and support [15:00] – Ideal Ages and Proactive Practice Why second grade and up is a great place to start [16:00] – What's in the Pill Swallowing Workbook? Affirmations, tools, weekly trackers, tips & tricks, and more [20:00] – Setting Up for Success When to practice, how long, and how to keep stress low [22:00] – Suggested 6–7 Week Practice Plan Why taking your time is key to success [23:00] – Incentives & Bingo Making pill practice feel like play [24:00] – How to Get the Resource Details on accessing the workbook for families Resources & Links 📌Illuminate Child Life Website 📥 Pill Swallowing Workbook 📲 Download the SupportSpot app to get support for procedures and resources today! 🎧 More episodes: https://www.childlifeoncall.com/podcasts Share Your Thoughts Has your child struggled to swallow pills? What strategies worked for you? Share your story or tag us with your own tips on Instagram. 🎙️ Subscribe & Review: Help more families discover these tools by leaving a review. 📩 Contact us: [email protected] 🎧 Listen Now and Learn How to Make Pill Swallowing Easier for Kids The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

"You make the best decision for yourself and your family—and you stick with it."- Kim Pena What happens when you're handed unexpected news at your child's birth—and there's no clear roadmap ahead? In this reposted episode, educator and mom Kim Pena shares her powerful journey as the parent of a child born with Microtia Atresia, a rare congenital condition affecting the ear. Kim was one of Katie's very first guests on the Child Life On Call podcast, and her story is still a listener favorite to this day. In this repost, Katie kicks off the episode by giving us a quick update about Kim's son. From discovering her son's diagnosis at birth to making emotional, high-stakes decisions about surgery and hearing aids, Kim walks us through her family's deeply personal experience with compassion, clarity, and humor. In this episode, you'll learn: ✅ What Microtia Atresia is and how it affects children ✅ How Kim and her husband navigated hearing loss, reconstructive surgery, and insurance battles ✅ Why early intervention with hearing aids changed everything ✅ What recovery and long-term care looked like for their son ✅ How to find trusted resources and support if your child is diagnosed Kim's story offers encouragement, practical wisdom, and a reminder that joy often shines through the hardest moments. Timestamps & Key Topics ⏱️ [00:00] – Introduction: Meet Kim and Thomas Kim's background as an educator, and how her son's birth revealed an unexpected diagnosis ⏱️ [02:00] – What Is Microtia Atresia? Definition and how it affects the outer and middle ear Kim learns about the condition immediately after birth ⏱️ [04:00] – Family History and Diagnosis Challenges The connection to Kim's brother-in-law Why this condition wasn't caught on ultrasound ⏱️ [07:00] – Building a Support System How Kim's relationship with her father-in-law became essential Finding emotional and logistical support from someone who's been there ⏱️ [09:00] – First Surgeries and Hearing Tests Understanding Thomas's hearing loss The process of getting tested, hearing aids, and early therapy ⏱️ [11:00] – Choosing the Right Surgery Exploring different surgical options, including rib graft and Medpor Why Kim's family chose a single-surgery approach ⏱️ [13:00] – Surgery Day and Recovery A 13-hour surgery and the emotional toll Why recovery in California brought unexpected connections ⏱️ [16:00] – Post-Surgery Life & Daily Care What healing looked like in the months after Kim's advice on establishing trust, prepping a toddler, and using distraction ⏱️ [20:00] – The Bittersweet Nature of Change Letting go of "his little ear" Gratitude for what the journey has taught their family ⏱️ [22:00] – Research, Advocacy & Making Confident Choices The role of online communities and navigating defensiveness Why Kim recommends aiding early—and being unapologetic about your choices ⏱️ [27:00] – A Life-Changing Hearing Aid Moment The first time Thomas could hear clearly—how it changed their world Why Kim wishes she had recorded that moment ⏱️ [29:00] – Final Reflection: Raising a "Joy Boy" Despite everything, Thomas's joy and resilience shine through Why Kim's journey is one of perspective, peace, and purpose Resources & Links 📌 Learn More About Microtia Atresia: microtia.net – Up-to-date education & support earcommunity.org – Parent-led advocacy and insurance help microtiasurgery.com – Thomas's surgeon with videos and guides pediatricent.com – Additional surgical resource (Dr. Bonilla, San Antonio) 📲 Connect with Kim: Instagram Share Your Thoughts! Know someone raising a child with Microtia Atresia? Share this episode to let them know they're not alone. 💬 Leave a comment or tag us on Instagram: @childlifeoncall 🎙️ Subscribe & Review: Help more families find these stories by leaving a review on your favorite podcast platform. 📩 Contact us: [email protected] The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

What if blending real food could transform your child's tube feeding experience—and your entire family's daily routine? In this inspiring episode, registered dietitian and new mom Hilarie shares how her career in pediatric nutrition led her to create Blended Tube Feeding, a platform and supportive community designed to help families explore real food options for children with feeding tubes. Hilarie and Katie have an insightful conversation about doing what works best for your family and how it is not an all-or-nothing approach when it comes to tube feeding. From clinical frustrations to practical breakthroughs, Hilarie's story is packed with insight, empathy, and encouragement for families navigating complex feeding needs. In this episode, you'll learn: ✅ What blenderized tube feeding is—and how it helps with digestion, connection, and flexibility ✅ How Hilarie's work in a neurodevelopment clinic inspired her mission ✅ Common fears and how to overcome them when shifting from formula to real food ✅ How to start slowly and safely with blended meals (even using store-bought purees!) ✅ Where to find affordable support, recipes, and a welcoming online community Whether you're new to tube feeding or ready to explore new options, this episode offers knowledge, support, and a hopeful outlook for the journey ahead. Timestamps & Key Topics ⏱️ [00:00] – Meet Hilarie: Registered Dietitian, New Mom, Real Food Advocate How her love of cooking, gardening, and clinical work intersected in her passion project Why food is central to her family and her mission ⏱️ [04:00] – The "Aha" Moment Behind Blended Tube Feeding Real families, real frustrations, and real improvements How small changes led to big results in digestion and quality of life ⏱️ [06:00] – Formula Isn't the Enemy: Finding What Works Why Hilarie supports a nonjudgmental approach Blended food can be part-time, full-time, or not at all—it's about what's right for your child ⏱️ [08:00] – What Getting Started Looks Like Step-by-step tips: from single-ingredient purees to homemade blends Why slow is better—and how to build confidence without overhauling everything ⏱️ [11:00] – Real Fears, Real Parents Why many parents worry about "rocking the boat" What success looks like when routines become manageable and joyful ⏱️ [13:00] – Why Aren't Dietitians Taught This? The history behind formula becoming standard How schools and hospitals are starting to reintroduce food-based tube feeding ⏱️ [14:00] – Hilarie's Virtual Support Programs Online courses, a private community, and flexible coaching Affordable access to evidence-informed resources—starting at just $37/month ⏱️ [17:00] – Motherhood Perspective Shift How becoming a parent deepened her empathy for families Why accessibility, flexibility, and simplicity matter more than ever ⏱️ [19:00] – A Favorite Success Story One family's journey from 2-hour feeds and fear of leaving the house—to freedom, flexibility, and Panera bread - How small wins can transform daily life ⏱️ [21:00] – Where to Start: Free Resources & Community Instagram, blog articles, recipes, and real-life advice Why you don't have to figure it all out alone Resources & Links Get Free Resources: Starter tips, recipes, and blog articles: www.blendedtubefeeding.com Research on Blenderized Tube Feeding Links to Commercial Real Food Products 📲 Follow Hilarie on Instagram: @blendedtubefeeding 💬 Join the Community Group: Month-to-month access to guides, support, and connection Share Your Thoughts! Are you considering blenderized tube feeding for your child? Have you tried it already? We'd love to hear your story! Comment below or tag us on social. 🎙️ Subscribe & Review: Help more families discover these powerful conversations. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact us: [email protected] The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

📢 This is a special repost of one of our most heartfelt and insightful episodes. Whether this is your first time hearing Jessica's story or a revisit, her perspective as a mom of a child with Prader-Willi Syndrome will stick with you. This month is also Prader- Willi Syndrome awareness month. What happens when a diagnosis changes everything you expected about motherhood? For Jessica Patay, it sparked a journey through fear, resilience, advocacy, and ultimately, the founding of an incredible nonprofit called We Are Brave Together. In this deeply moving episode, Jessica opens up about: ✅ Her son's diagnosis with Prader-Willi Syndrome and the earliest signs ✅ The challenges of hypotonia, feeding tubes, and navigating early interventions ✅ How her family balances safety, structure, and joy with a life-altering genetic condition ✅ The impact of anxiety and food-seeking behaviors in PWS ✅ The emotional toll of parenting a medically complex child—and why self-care is essential ✅ Her mission to connect moms through retreats, support groups, and honest conversations Whether you're a parent of a child with a rare diagnosis, a caregiver, or a child life specialist, this episode offers comfort, validation, and powerful insight. Timestamps & Key Topics ⏱️ [00:00] – Meet Jessica Patay & Her Family A mom of three from California and founder of We Are Brave Together ⏱️ [04:00] – Ryan's Birth and First Signs Something Wasn't Right From a quiet newborn to a NICU stay, and the challenges of a delayed diagnosis ⏱️ [08:00] – Diagnosis: Prader-Willi Syndrome How a Google search and a persistent dad led to answers ⏱️ [10:00] – The Emotional Impact of Diagnosis The grief, the fog, and how Jessica slowly found strength ⏱️ [14:00] – Life with Feeding Tubes and Early Interventions Occupational, speech, and physical therapy in the early years ⏱️ [19:00] – Living with PWS: Hypotonia, Delayed Milestones, and Growth Hormone Ryan's journey to walking at age three and building muscle ⏱️ [20:00] – When Food Becomes a Medical Emergency How the insatiable food drive in PWS shapes daily life—and safety plans ⏱️ [24:00] – Creating a Safe Home for Ryan Locked kitchens, food schedules, and adapting to his needs as he grows ⏱️ [26:00] – Rethinking Success: What Matters Most The shift from pushing academics to prioritizing happiness, safety, and stability ⏱️ [29:00] – Parenting Through Anxiety and Fatigue How PWS affects mental health—and how Jessica copes with it all ⏱️ [32:00] – Self-Care Without Shame Why letting go of perfection and choosing peace is essential ⏱️ [38:00] – Founding We Are Brave Together Jessica's mission to combat caregiver isolation through connection and retreats ⏱️ [42:00] – How to Get Involved Join support groups, start a chapter, and access online resources ⏱️ [44:00] – What Ryan Has Taught Jessica A beautiful reflection on motherhood, perspective, and being changed for the better Resources & Links 🌐 Learn More: We Are Brave Together 📲 Follow Jessica on Instagram: @wearebravetogether 🎙️ Listen to Jessica's Podcast: Brave Together with Jessica Patay 📘 Explore Support for PWS: Prader-Willi California Foundation 📱 Access Child Life Tools Anytime: SupportSpot App Share Your Thoughts! Were you moved by Jessica's story? Are you a parent of a child with PWS or another complex diagnosis? We'd love to hear from you! Share this episode, tag us, and help other parents feel less alone. 🎧 Subscribe & Review: Every review helps more families find this supportive community. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact us: Host Katie Taylor and the team at SupportSpot 🎙️ Listen to More Episodes: Child Life On Call Podcast The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child is experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

What would you do if both of your children were diagnosed with a life-threatening genetic disease—and there was no support system in place for parents like you? In this inspiring episode, Katie interviews Laura Bonnell, a former Detroit news reporter turned full-time advocate and nonprofit founder. After both of her daughters were diagnosed with cystic fibrosis (CF), Laura transformed her grief and determination into the Bonnell Foundation, providing real-time support to families across the U.S. who are navigating life with CF. In this powerful episode, we explore: ✅ How Laura pushed for her daughter's diagnosis when doctors dismissed her instincts ✅ Why child life services were "among the best things" during hospitalizations ✅ What it's like raising two daughters with cystic fibrosis in the same home ✅ The emotional toll of pretending "everything's fine" as a medical parent ✅ How her foundation is providing financial relief, mentorship, and inspiration ✅ Why advocacy can take many forms—and how small actions can create significant change Whether you're a CF parent, a caregiver of a chronically ill child, or someone passionate about parent-led advocacy, this episode will move and motivate you. Timestamps & Key Topics ⏱️ [00:00] – The Power of Child Life Services How art, distraction, and support brought relief during hospital stays ⏱️ [03:00] – Meet Laura Bonnell From Detroit news reporter to cystic fibrosis advocate and nonprofit founder ⏱️ [06:00] – A Life-Altering Diagnosis How Laura's instincts—and persistence—led to a CF diagnosis after months of dismissal ⏱️ [09:00] – Fighting for Answers & Processing the News Pulling over mid-assignment to receive the call—and deciding, that same day, to keep moving forward ⏱️ [12:00] – Advocacy from the Start Speaking publicly just weeks after diagnosis and discovering the emotional weight of her new reality ⏱️ [14:00] – Life with Two Children with CF Navigating work, marriage, and hospitalization rotations while trying to maintain "normalcy" ⏱️ [16:00] – School Accommodations & Advocacy Wins How brochures, IV poles, and enzymes in every classroom made private school possible ⏱️ [18:00] – The Hidden Truths of "Being Fine" Why Laura never told friends how hard it really was—and what she wishes she could've said ⏱️ [21:00] – Building Community & Finding Strength in Other Moms How hospital garden meetups and phone calls with CF parents created safe spaces ⏱️ [23:00] – Founding the Bonnell Foundation How a calendar and a vision turned into a national nonprofit serving families with CF ⏱️ [26:00] – What the Bonnell Foundation Offers From financial assistance and college scholarships to CF masterclasses and bilingual resources ⏱️ [28:00] – "Don't F With Me": Laura's Strength as an Advocate Why she'll knock on every door, from Capitol Hill to the hospital billing department ⏱️ [29:00] – Celebrating Her Daughters Emily's resilience through hospitalizations and marathon training Molly's fearless leap to study in London and become a sustainability changemaker Resources & Links 📌 Learn More About The Bonnell Foundation: www.thebonnellfoundation.org 📲 Follow Laura Bonnell: @thebonnellfoundation 📘 Apply for Scholarships & Financial Support: CF Support Programs 🎧 More Episodes: Child Life On Call Podcast Share Your Thoughts! Did Laura's story inspire you? Are you a CF parent or caregiver walking a similar road? Share your story in the comments or tag us on social media to keep the conversation going. 🎙️ Subscribe & Review: Every review helps more families find this supportive community. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact the Show: [email protected] 📱 Get the App: Download SupportSpot to access child life resources anytime The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

📢 This is a special repost of one of our most impactful and heartfelt episodes. Whether you're hearing Ashley O'Neill's story for the first time or revisiting it, her journey continues to resonate deeply with NICU families, pediatric providers, and anyone who has faced unimaginable loss and found strength in the aftermath. What happens when your personal and professional worlds collide in the NICU? For family nurse practitioner Ashley O'Neill, the journey into motherhood brought profound loss, relentless medical advocacy, and ultimately, a passion for helping others. Ashley's story begins with the loss of her first son, followed by the premature birth of her second son Kolin at 25 weeks. What came next was 183 days in the NICU, the unexpected death of her husband, and the courage to rebuild a life—and community—from the ground up. In this heartfelt episode, we dive into: ✅ The trauma and triumph of parenting a 25-weeker through a 6-month NICU stay ✅ Navigating grief and motherhood after the loss of a child and spouse ✅ How Ashley's medical background helped—and hurt—her NICU experience ✅ The frustrating reality of fighting for services, equipment, and insurance post-discharge ✅ How her Instagram and podcast connect NICU parents to life-changing resources ✅ The upcoming launch of her children's book, It's a NICU World Whether you're a NICU parent, pediatric provider, or someone looking for hope in hard places, Ashley's story will leave you inspired, seen, and supported. Timestamps & Key Topics ⏱️ [00:00] – Meet Ashley O'Neill Nurse practitioner, NICU mom, widow, and passionate advocate ⏱️ [01:00] – A Life-Changing Journey Begins Ashley's first son, Vincent was born at 21 weeks and passed away shortly after birth Kolin's birth at 25 weeks led to a 183-day NICU stay ⏱️ [04:00] – Between Medicine and Motherhood Navigating the NICU as a medical professional and a grieving mom ⏱️ [06:00] – Finding Strength in the Smallest Movements Kolin's first days, brain bleeds, and the moment Ashley finally held him ⏱️ [10:00] – Advocacy in Action From NICU notebooks to signs above the incubator—Ashley's daily commitment to giving Kolin a voice ⏱️ [14:00] – NICU Life, Community & Ronald McDonald House How support spaces and connections with other parents changed everything ⏱️ [18:00] – Creating Community Through Instagram and Podcasting How Ashley built a space for NICU parents navigating trauma, insurance, and life post-discharge ⏱️ [22:00] – Kolin's Milestones & Medical Miracles G-tube, hydrocephalus, nonverbal communication—and now, reading, spelling, walking, and thriving ⏱️ [27:00] – No Limits: The Mindset That Changes Outcomes Why one provider said Kolin would never walk—and why Ashley refused to believe it ⏱️ [30:00] – Tips for Parents Leaving the NICU The reality of life post-discharge: equipment battles, Medicaid struggles, and why persistence is key ⏱️ [35:00] – Real Talk on Insurance & Resources How one visit to social services almost left her without home nursing Why you should never take the first "no" as your final answer ⏱️ [38:00] – The Inspiration Behind Ashley's Children's Book It's a NICU World launches soon—with more books to follow Resources & Links 📘 Ashley's Website & Resources: www.itsanicuworld.com 📲 Follow Ashley on Instagram: @itsanicuworld 🎙️ Podcast – Ask the NICU Mama: Available on all major platforms 💛 Follow Ashley's Personal Story: @onthejourneytohealing Share Your Thoughts! Did this episode resonate with you? Know a NICU parent who needs to hear this? We'd love to hear your story—tag us on Instagram or leave a review on your favorite podcast app. 🎧 Subscribe & Review: Your support helps more families find strength and support through stories like Ashley's. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact us at [email protected] 🎙️ Listen to more episodes: Child Life On Call Podcast The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

What if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby's complex and rare health conditions. In this moving episode, Alexis shares: ✅ The moment her newborn was rushed to the NICU with a collapsed lung ✅ How her daughter's recurring infections led to a diagnosis of immunodeficiency and collagenous gastritis ✅ The emotional toll—and strength—of being the medical historian and advocate for a medically complex child ✅ How weekly infusions, therapy, and figure skating are helping her daughter thrive ✅ Her advice for parents facing rare, chronic, or undiagnosed conditions This is a must-listen for anyone caring for a child with complex medical needs, healthcare providers who want to better understand the family perspective, and parents looking for inspiration and connection. Timestamps & Key Topics ⏱️ [00:00] – Meet Alexis Kaplan Mother of two, former PR pro, and fierce advocate for her daughter Gabby ⏱️ [03:00] – From a Healthy Start to a Medical Emergency Gabby is born with a spontaneous pneumothorax and was immediately taken to the NICU ⏱️ [08:00] – Life After NICU The strange silence in the hospital room and the emotional weight of an unexpected start ⏱️ [10:00] – Feeding Struggles and Early Signs Something Was Wrong Eczema, weight loss, food intolerance—and a mother's instinct in full force ⏱️ [14:00] – The Fevers Begin Raging fevers, unrelenting illness, and a trip to the ER that revealed double pneumonia and RSV ⏱️ [19:00] – ENT Visits, Hearing Loss, and the Power of Child Life From audiology tests to the first Barbie from a Child Life Specialist—how support changed their hospital experience ⏱️ [22:00] – Asthma, Immunology & The First "Red Flag" Gabby's pulmonologist recommends deeper testing, leading to a pivotal moment in her diagnosis journey ⏱️ [24:00] – Periodic Fever Syndrome & Tonsillectomy A working diagnosis leads to aggressive treatment—but symptoms persist ⏱️ [26:00] – Gastroenterology, Scopes & the Search for Answers A rare diagnosis: collagenous gastritis—so rare, the doctor had never seen it before ⏱️ [29:00] – The Diagnosis That Changed Everything Immunoglobulin deficiency is confirmed, leading to weekly subcutaneous infusions at home ⏱️ [31:00] – A Grey's Anatomy Ritual & Finding Control Gabby takes charge of her infusions, watches Grey's Anatomy, and finds a routine in the chaos ⏱️ [32:00] – Advocating for the Right Medication Alexis does her own research and fights for biologic treatment to manage Gabby's symptoms ⏱️ [34:00] – Reflecting on Strength, Resilience & Motherhood The mental toll of advocating, comforting, and never giving up—and watching her daughter skate through it all ⏱️ [36:00] – TikTok Tips & Empowerment in the Hospital Line Gabby empowers other kids at the clinic with simple strategies to get through shots and IVs ⏱️ [37:00] – Final Reflections: Curveballs, Advocacy & Support How Facebook groups, therapy, and the power of asking questions help Alexis keep going Resources & Links 📌 Follow Gabby's Skating Journey: @gkapskates on Instagram 📌 Follow Alexis' New Blog: @keep_throwing_curveballs 📲 Learn About the SupportSpot App: SupportSpot on the App Store Share Your Thoughts! Was this episode meaningful to you? Have your own rare disease parenting story or insights? We'd love to hear from you! Tag us on Instagram or leave a comment wherever you listen. 🎙️ Subscribe & Review: Help more families find support by subscribing and leaving a review on your favorite podcast app. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact: Connect with host Katie Taylor and the team behind SupportSpot. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

Knowing how to talk to kids about child abuse can feel overwhelming—but it doesn't have to be. In this impactful episode of Child Life On Call, host Katie Taylor interviews child abuse prevention advocate Jane Donovan—who also happens to be her mom. Jane shares her personal journey, sparked by a tragic event, that led to a decades-long mission to protect children and educate communities. From creating a long-running puppet program for abuse prevention to empowering kids with body safety tools, this conversation is full of actionable advice for parents, caregivers, educators, and child life specialists. This is a special repost of one of our most important and requested episodes. Whether you're hearing it for the first time or revisiting it, this conversation remains just as powerful and relevant today. In this episode, you'll learn: How to talk to kids about child abuse in age-appropriate, non-scary ways The importance of ongoing conversations about personal safety How tools like puppets, music, and hula hoops teach children about personal boundaries What parents should know about mandated reporting and how to act on their instincts How to evaluate youth-serving organizations for child safety protocols Why Children's Advocacy Centers are essential for abuse investigation and healing Whether you're a parent, educator, or healthcare provider, this episode provides the tools and confidence you need to start meaningful conversations that protect kids and empower them. Timestamps & Key Topics ⏱️ [00:00] – Introduction: Meet Jane Donovan Katie introduces her guest (and mom), a lifelong child advocate Learn how the Child Life On Call app empowers families ⏱️ [03:00] – A Personal Story That Inspired a Mission How a child's abduction changed Jane's life Why she dedicated her career to child abuse prevention ⏱️ [06:00] – What Are Children's Advocacy Centers? A child-friendly space for reporting, healing, and justice How they support kids through forensic interviews and therapy ⏱️ [09:00] – Making Conversations About Abuse Less Scary Why it's not "the talk"—it's ongoing, age-appropriate education Teaching safety in everyday moments without fear ⏱️ [11:00] – Teaching Kids About Boundaries with Puppets Introducing the "Kids Count Players" puppet show for elementary students Using storytelling and music to make serious topics approachable ⏱️ [15:00] – Personal Space for Children: Hula Hoops & "Uh-oh" Feelings How to use visual tools to teach kids about body autonomy and boundaries The difference between "good touch" and "confusing touch" ⏱️ [22:00] – Real Impact in Schools How the puppet show helped children disclose abuse Why teachers and counselors praise the program ⏱️ [23:00] – The Adult's Role in Protecting Children Tips for keeping kids safe at camp, church, and extracurriculars How to ask youth-serving organizations about their safety policies ⏱️ [25:00] – Understanding Mandated Reporting Why professionals and caregivers must report suspected abuse How to file a report, even if you're unsure ⏱️ [29:00] – Practical Safety Tips for Parents Teach proper names for body parts Encourage privacy and reinforce their right to say "no" to unwanted contact ⏱️ [31:00] – Easy Tools & Takeaways How to start the conversation—and keep it going Resources & Links 📌 Learn about Children's Advocacy Centers: www.cactexas.org 📺 Watch the Kids Count Players on YouTube 🎧 More podcast episodes: childlifepodcast.com Subscribe & Connect 👍 Was this episode helpful? Tag us on social media and share your thoughts. 🎙️ Subscribe & Review: Help others find this essential information by rating and reviewing the podcast. 📩 Contact us: [email protected] 📲 Follow on Instagram 🎧 Listen now and start protecting kids through education and empowerment. The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

"We followed Dahlia's lead—and Dahlia was not going to let this stop her." — Jessica Fein What happens when your child's diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia's MERRF Syndrome meant redefining motherhood, finding joy in unexpected places, and transforming grief into connection and advocacy. In this honest and deeply moving episode, we explore: ✅ What it's like to go on a diagnostic odyssey, and finally get answers that bring more questions ✅ The complexity of parenting a child with medical needs, including the realities of home care and hospital stays ✅ How grief exists even while your child is alive—and what ambiguous grief means for medical parents ✅ The power of storytelling, finding meaning through writing, and connecting with community through shared experience Whether you're a parent, provider, or someone looking to better understand the emotional layers of complex care and rare disease, this episode will resonate with you. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Meet Jessica Fein and hear the quote that shaped this conversation ⏱️ [01:00] – Jessica's Story Begins Navigating the early years of parenting without answers ⏱️ [03:00] – Diagnosis & the Unknown The journey to a MERRF Syndrome diagnosis and what came next ⏱️ [09:00] – Life With a Rare Disease Hospital stays, trachs, and becoming the expert in your child's care ⏱️ [13:00] – Following Dahlia's Lead Letting joy and silliness guide the way ⏱️ [17:00] – Who Dahlia Was A peek into Dahlia's personality and how she impacted everyone she met ⏱️ [20:00] – Writing As Healing How Jessica turned to writing as an act of reflection, advocacy, and self-care ⏱️ [24:00] – What Helps in the Hospital Tangible ways friends and providers can support caregivers ⏱️ [30:00] – Grief, Then and Now Understanding ambiguous grief—and the evolution of loss after death ⏱️ [33:00] – How to Connect With Jessica Where to find her book, podcast, and writing Resources & Links from today's episode: 📕 Read Breathtaking by Jessica Fein: [Available on Amazon and wherever books are sold] 🌐 Visit Jessica's website: www.jessicafeinstories.com 🎧 Listen to her podcast: I Don't Know How You Do It 📷 Follow Jessica Fein on Instagram, Facebook and LinkedIn Share Your Thoughts Did this episode resonate with you? Do you have a story of parenting through rare disease or complex medical care? We'd love to hear from you—tag us or leave a comment! If you found this episode meaningful, please subscribe and leave a review—it helps more families discover these conversations. ❤️ SupportSpot is Here for You SupportSpot gives you instant access to expert child life tips, emotional support, and medical journey resources. Try it FREE for 7 days! Subscribers can book a complimentary visit with a Child Life Specialist through Child Life On Call. Start now at childlifeoncall.com/supportspot 🎙️ Meet the Host Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform connecting families and care teams with expert child life services. A certified child life specialist for over 13 years, Katie has worked across pediatric healthcare settings, presented nationally, and is the author of a children's book. She hosts the Child Life On Call Podcast to amplify parent voices and emphasize the value of child life services. 📱 Instagram.com/childlifeoncall 📘 Facebook.com/childlifeoncall 🔗 linkedin.com/in/kfdonovan The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Keywords: MERRF Syndrome, Rare Disease, Medical Parenting, Grief, Child Life

"It wasn't any kind of strength within myself that helped me get through the NICU. It was the strength they had—they gave it to me."- Savannah O'Malley We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. What happens when your birth plan is shattered in an instant? For Savannah, the unexpected arrival of her micropreemie twins at just 24 weeks turned her world upside down. One of her sons faced significant medical challenges, including brain bleeds and a cerebral palsy diagnosis, while the other grew without complications. Through it all, Savannah found healing in advocacy, art, and the power of sharing her story. In this moving episode, we explore: ✅ The emotional and medical complexities of delivering micro-preemie twins ✅ How a cerebral palsy diagnosis reshaped their family's journey ✅ The silent struggle of maternal mental health after a traumatic birth ✅ Why peer support and storytelling matter in healing and advocacy ✅ How Savannah's Cards of Hope project is making a difference for other NICU moms Savannah's story is a testament to resilience, love, and the incredible strength of mothers navigating complex medical journeys. Whether you're a NICU parent, a healthcare professional, or someone seeking inspiration, this episode will leave you feeling empowered. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Welcome to today's episode featuring Savannah O'Malley The importance of sharing NICU and maternal mental health stories ⏱️ [01:00] – Meet Savannah Mom to three, including twin micro-preemies Advocate for maternal mental health and children with disabilities ⏱️ [03:00] – The Unexpected Arrival: 24-Week Twins How Savannah's pregnancy took a sudden turn Navigating a traumatic birth and immediate NICU admission ⏱️ [09:00] – The Medical Rollercoaster Begins Brain bleeds, heart complications, and emergency surgeries Balancing hope with overwhelming medical challenges ⏱️ [13:00] – A Life-Changing Diagnosis: Cerebral Palsy & Hydrocephalus How Lachlan's brain injury shaped their early intervention journey The emotions of receiving a CP diagnosis and shifting expectations ⏱️ [24:00] – Maternal Mental Health: The Hidden Battle Why Savannah struggled with PTSD and anxiety The moment a medical professional finally validated her trauma Why maternal mental health screenings should extend beyond the NICU ⏱️ [30:00] – The Power of Peer Support Finding community in other NICU and disability moms How social media became a lifeline for connection and hope ⏱️ [38:00] – Turning Pain into Purpose: Cards of Hope How Savannah combined her love for art with her advocacy Sending free, uplifting artwork to mothers of traumatic births How small acts of kindness can have a profound impact ⏱️ [44:00] – Lessons from Motherhood & Advocacy Why Savannah wouldn't change a thing about her son's journey The importance of celebrating progress, not just milestones How caregivers can find strength in their child's resilience ⏱️ [50:00] – Where to Find Savannah & How to Support Cards of Hope How you can receive or gift a Card of Hope Why sharing your story can be the start of healing Resources & Links 📌 Sign Up for a Card of Hope: SavvyJane.com 📥 Follow Savannah's Journey on Instagram: @SavvyJaneOMalley 🎨 Support the Cards of Hope Project: Purchase art prints to fund outreach 🎧 Listen to more episodes: Child Life On Call Share Your Thoughts! Did Savannah's story resonate with you? Have your own experience with micropreemies or maternal mental health? We'd love to hear from you! Leave a comment below or tag us on social media. 🎙️ Subscribe & Review: If you enjoyed this episode, be sure to subscribe and leave a review—it helps more families find these powerful conversations! 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact us: [email protected] The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information pr

"What we realized was that rare isn't as rare as we think—there are so many of us out here searching for answers, fighting for our kids, and trying to make a difference."- Maria Granados We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. What if a simple miscommunication in the hospital could have cost your child their life? For Maria and Matt Granados, parents of a daughter with Pyroxd1, that terrifying moment led to a groundbreaking realization—and a mission to help other families facing rare diseases. In this powerful episode, we dive into: ✅ The challenges of diagnosing and living with Pyroxd1, a rare neuromuscular condition ✅ A near-fatal hospital mistake that could have changed everything ✅ How they turned their personal struggles into Take Part Foundation, a nonprofit funding rare disease research ✅ The power of storytelling, advocacy, and community for families navigating the unknown Maria and Matt's story is one of resilience, innovation, and advocacy, proving that "rare is more common than you think." Whether you're a rare disease parent, medical professional, or someone looking for inspiration, this episode is a must-listen. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Welcome to today's episode featuring Maria & Matt Granados Why raising awareness for Pyroxd1 is so important ⏱️ [01:00] – Meet Maria & Matt Their family's journey: married 9 years, three kids, and an entrepreneurial spirit How flexibility in work became essential for parenting a child with complex medical needs ⏱️ [03:00] – The Start of Their Rare Disease Journey Pregnancy and early signs something was different with Natalie The challenges of getting doctors to take concerns seriously Being told "don't worry" for a year—while their instincts said otherwise ⏱️ [09:00] – The Thanksgiving Hospital Crisis That Changed Everything Natalie's sudden health decline and emergency hospitalization The shocking realization that hospitals don't share medical records effectively How a simple website they built saved Natalie's life by preventing a life-threatening medication error ⏱️ [13:00] – Turning Their Experience Into a Mission How their frustration with the system led them to found Take Part Foundation Why families need access to their child's full medical history The power of self-advocacy in rare disease care ⏱️ [24:00] – What Is Pyroxd1? Understanding This Rare Condition A breakdown of what Pyroxd1 is and how it affects the body The difficulty of finding a diagnosis and why many families go undiagnosed ⏱️ [30:00] – The Reality of Rare Disease Research & "Death Valley" Funding The shocking truth: 95% of rare diseases have no FDA-approved treatment Why promising research often stalls due to lack of funding How Take Part Foundation provides grants to researchers in need ⏱️ [38:00] – How Take Part Helps Families Get Genetic Testing Many families can't afford genetic testing—so Take Part is filling the gap The impact of a diagnosis on getting insurance coverage for therapies and equipment ⏱️ [44:00] – Strengthening Their Marriage Through the Rare Disease Journey The emotional toll of raising a medically complex child The mindset shift that saved their marriage: "If Natalie's not offended, I don't need to be offended." The importance of seeing doctors as humans, too ⏱️ [50:00] – Let Your Fight Shine: A Message for Other Rare Parents Maria's beautiful perspective on embracing the fight instead of hiding it Why advocacy is the most powerful tool rare disease parents have ⏱️ [52:00] – Where to Find Maria & Matt + How to Support Take Part Foundation How to get involved, donate, or apply for support Why storytelling is a crucial part of the rare disease journey Final words of encouragement for other families Resources & Links 📌 Learn More About Pyroxd1 & Take Part Foundation: www.take-part.org📥 Apply for Genetic Testing Support: Take Part Foundation Resources (Coming Soon!) 📲 Follow Take Part on Instagram: @TakePartFoundation 🎧 Listen to more episodes: Child Life On Call Share Your Thoughts! Did you find this week's episode helpful? We'd love to hear from you! Leave a comment below or tag us on social media. 🎙️ Subscribe & Review: If you enjoyed this episode, be sure to subscribe and leave a review—it helps more families find these helpful conversations! 🔗 Follow us on Instagram:@childlifeoncall 📩 Contact us: Lyndsey Fedorko ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child's anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to he

"I remember sitting in the NICU thinking, 'Am I going to lose my baby? Is this the best outcome for him? What will his life look like?' And then I realized—I wasn't alone in these thoughts. Other parents had been here before, and they found a way forward. That's when I knew we needed a community like Hope for HIE." — Betsy Pilon, Founder Hope for HIE We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. What happens when your child's birth doesn't go as planned, and you're suddenly navigating a diagnosis you never expected? For Betsy, the experience of welcoming her son Max was a crash course in resilience, advocacy, and finding a community that changed everything. In this heartfelt episode, we explore: ✅ What HIE (Hypoxic Ischemic Encephalopathy) is and how it affects newborns ✅ The emotional rollercoaster of an unexpected NICU stay ✅ How Betsy became involved with Hope for HIE and transformed it into a global support network ✅ The power of peer support, self-advocacy, and the importance of access to resources Whether you're a NICU parent, healthcare professional, or simply looking for an inspiring story of perseverance, this episode is for you. 📢 This Episode is a Repost! We're bringing back this powerful conversation with Betsy from Hope for HIE—an episode that resonated deeply with so many listeners. Whether you're hearing it for the first time or revisiting her inspiring journey, this story of resilience, advocacy, and community is one that never loses its impact. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Welcome to today's episode featuring Betsy and her journey with Hope for HIE ⏱️ [01:00] – Meet Betsy How her son Max's unexpected birth led to a life-changing mission Her background in healthcare communications and how it shaped her advocacy ⏱️ [03:00] – The Start of an HIE Journey Betsy's pregnancy, the first signs of concern, and an unexpected emergency C-section The overwhelming first hours and days in the NICU ⏱️ [09:00] – Understanding HIE & Cooling Therapy What cooling treatment is and how it helps babies with HIE The difficult reality of not being able to hold or interact with your baby immediately ⏱️ [13:00] – The Emotional Impact of NICU Life Coping with uncertainty and the rollercoaster of NICU ups and downs How self-advocacy played a role in making decisions for Max's care ⏱️ [24:00] – Finding Hope for HIE How a Google search connected Betsy with a community of families navigating the same diagnosis The power of peer support in the rare disease and medical parenting world ⏱️ [30:00] – From Personal Experience to Advocacy Turning lived experience into action by growing Hope for HIE into a thriving nonprofit How Hope for HIE provides resources, education, and community for families worldwide ⏱️ [38:00] – Life After the NICU: Max's Journey Today Max's growth, resilience, and the realities of life after an HIE diagnosis Balancing family life, advocacy, and raising awareness ⏱️ [44:00] – Advice for NICU & HIE Families What Betsy wishes she had known during those first days and weeks The importance of connection, education, and taking things one step at a time ⏱️ [50:00] – How to Connect with Hope for HIE Where to find support, resources, and get involved The mission to ensure no parent faces HIE alone Resources & Links 📌 Learn More About HIE & Hope for HIE: www.hopeforhie.org 📥 Request Support Materials for NICUs & Families: Hope for HIE Resources 📲 Follow Hope for HIE on Instagram: @HopeForHIE 🎧 Listen to more episodes: Child Life On Call Share Your Thoughts! Did this episode resonate with you? Do you have an HIE or NICU experience to share? We'd love to hear from you! Leave a comment below or tag us on social media. 🎙️ Subscribe & Review: If you found this episode helpful, please subscribe and leave a review—it helps more families discover these stories and resources. ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child's anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking this link. 🎙️Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life a

"I thought my job was to save my daughter, but I realized my job was to show her how to live with strength and resilience." – Dr. Maggie Kang We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. In this powerful episode, Dr. Maggie Kang shares her deeply personal journey as a physician and a mother navigating her daughter's rare disease diagnosis, Neuromyelitis Optica Spectrum Disorder (NMOSD). She discusses the emotional and medical challenges she faced, her transition into advocacy, and how she now supports families through life coaching. In an insightful conversation, Katie and Maggie explore the complexities of grief, resilience, and advocacy. Maggie opens up about the difficult moments in her daughter's diagnosis, how she learned to trust her instincts, and the importance of both self-care and community in the rare disease journey. Together, they discuss the emotional weight of parenting a child with a chronic illness and the ways families can empower themselves in the healthcare system. What You'll Take Away from This Episode: 🏥 Navigating the Medical System: She shares how she advocated for faster testing, sought expert opinions, and utilized her connections to expedite care. 🤝 The Importance of Community: Connecting with other rare disease parents provided knowledge, support, and hope for the future. 💔 Processing Grief and Change: Katie and Maggie discuss the emotional toll of rare disease parenting and how healing often begins after leaving the hospital. 📢 Advocacy Matters: Maggie's push for better understanding of NMOSD has helped bring awareness and improve care options for future patients. 💙 Self-Care for Caregivers: She emphasizes how caring for oneself is critical in sustaining long-term caregiving and preventing burnout. Connect With Dr. Maggie Kang Link to Dr. Maggie's Website Dr.Maggie's TEDx Talk Nell's Book ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child's anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking this link. 🎙️Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Keywords: NMOSD, Female Physician, Doctor Mom, Pediatrics, Child Life Specialist

"If something doesn't feel right, don't ignore it. Keep asking questions. You know your child better than anyone."-Jessica Baird, CCLS We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. What do you do when doctors keep telling you nothing is wrong—but your child is in pain every single day? For Jessica, a child life specialist and mom, that answer was simple: keep pushing until someone listens. In this powerful conversation, Katie sits down with Jessica to talk about the emotional, and eye-opening journey she went through to get answers for her daughter. What started as mild COVID symptoms quickly turned into persistent leg pain, countless doctor visits, dismissals, and dead ends—until finally, they got the diagnosis: long COVID. Katie and Jessica dive into what it feels like when medical professionals dismiss your concerns, how to find the right doctors who will listen, and why trusting your instincts as a parent is everything. They also talk about how long COVID is still misunderstood, especially in kids, and what families can do if they suspect their child is affected. What You'll Take Away from This Episode: 💡 Your intuition is your superpower – If you feel something isn't right, don't back down. 💡 Not all doctors get it right the first time – Second (and third) opinions can make all the difference. 💡 Long COVID in kids is real – But many medical professionals still don't recognize it. 💡 You're not alone – There are resources, specialists, and support groups out there to help. Links & Resources: 🔗 Connect with Jessica Kids Can Cope Instagram Kids Can Cope Website Listen to Jessica's episode with Katie where they talk about Child Life in the ER. Long Covid Resources Mentioned in Today's Episode Cleveland Clinic-"What to know about Long COVID in Kids" Nationwide Children's-"Practical Reccomendations for Long COVID in Children" Long Covid Kids Organization ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child's anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking this link. 🎙️Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

"I had to teach myself to advocate – no one should leave a hospital with more trauma than they came with."- Julie Walters We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. In this episode, Katie speaks with Julie Walters, a mom of two neurodivergent children, entrepreneur, and fierce advocate for inclusion and health equity.Julie shares her deeply personal journey navigating her daughter's epilepsy diagnosis, the challenges of parenting through complex medical experiences and how these experiences led her to create The Connected Parent – a resource hub empowering families to find critical services for children with medical complexities or neurodivergence. Julie's story is one of strength, determination and advocacy. Key Takeaways we learn from Julie and Katie's Conversation: ✨ Becoming an Advocate Early: Julie's passion for advocacy began in childhood, growing up with a mother who had schizoaffective disorder. She learned how to find resources through persistence and necessity. 💡 Navigating Medical Crises as a Parent: Julie recounts the night she discovered her daughter's epilepsy through a life-saving baby monitor alert and the emotional toll of multiple seizures, hospital stays, and sleepless nights at the PICU. 🩺 Parent-to-Parent Support: During one of the hardest times in the hospital, another mom introduced Julie to epilepsy resources – reinforcing the power of community and shared experiences. 🌐 Creating The Connected Parent: Julie's frustration with the lack of easily accessible resources for medical and neurodivergent families led her to create The Connected Parent, a platform like Yelp for finding therapists, schools, camps, and more. 👩‍👧 Involving Her Daughter in the Mission: Julie's daughter, Violet, plays an active role in the platform – from Instagram content to product ideas. Her participation highlights the importance of empowerment and shared purpose. Links & Resources: 🔗 The Connected Parent: Visit TheConnectedParent.net ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child's anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking this link. 🎙️Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"Our goal wasn't to build something huge overnight – it was to listen to families, fill the gaps, and take that first step." – Cheryl Whitty We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. In this heartfelt episode, Katie sits down with mother-daughter duo, Cheryl Witty and Kimmy Witty to hear the inspiring story of how their family journeyed through chronic kidney disease and how a kidney transplant led to the creation of the Children's Transplant Initiative (CTI). Kimmy shares her personal experience of being diagnosed at age 12, receiving a life-saving kidney transplant, and how that experience fueled her passion for helping other families. Kimmy is now a certified Child Life Specialist and shares how her experiences inspired her to choose this as her career. Cheryl reflects on her journey of being a mother and caregiver and how CTI has grown to provide housing, financial assistance, and mentorship for transplant families across Texas. Cheryl and Kimmy shares her experience transitioning from pediatric to adult care and how the role of parents can shift as their children grow into adulthood. 🔑 Key Points: Kimmy's Transplant Journey: Diagnosed at 12 with a rare kidney disease, Kimmy received a life-saving transplant from her father, inspiring her passion for helping others. Founding Children's Transplant Initiative (CTI): Kimmy, Cheryl and Ross created CTI to support transplant families through mentorship, financial aid, and housing programs. Programs and Growth: CTI began by mentoring one family at a time and has grown to provide housing for families in Houston and Austin, with plans to expand to Dallas. Kimmy's Career Path: Inspired by her experiences, Kimmy is starting as a Child Life Specialist to support children facing medical challenges. Family Strength and Advocacy: Cheryl and Kimmy reflect on resilience, emphasizing how personal experiences can drive advocacy and create lasting impact for others. ✨ Takeaways for Listeners: The importance of starting small—CTI began with just one family in need. Pediatric transplant patients often face lifelong medical journeys, highlighting the need for continued advocacy and resources. Personal experiences can lead to powerful career paths—Kimmy's journey inspired her to become a Child Life Specialist. 🌐 Links and Resources from today's Episdoe Visit the Children's Transplant Initative's Website to learn more about the incredible resources they offer to families in Texas 📲 Follow CTI on Social Media: Instagram Facebook ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child's anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it free by clicking this link. 🎙️Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

In this episode of Child Life On Call, host Katie Taylor, a certified child life specialist, shares personal experiences and practical advice on maintaining calm during your child's medical procedures. Katie recounts a traumatic incident with her daughter, emphasizing the natural parental panic response and how to manage it. She offers three key strategies: getting informed about medical procedures, finding a supportive role during the process, and taking care of your own physical and emotional needs. Katie introduces the Support Spot app as a valuable resource, providing step-by-step guides for over 50 medical procedures. This episode aims to equip parents with the tools and confidence needed to support their children effectively during medical challenges. 00:00 Introduction and Personal Story 02:30 Understanding Parental Panic 03:11 Managing Emotions During Medical Procedures 03:28 Empowering Yourself with Information 04:24 Finding a Role to Play 05:27 Taking Care of Your Needs 06:05 Conclusion and Final Thoughts 07:53 Support Spot App and Resources 09:24 Closing Remarks When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"Hope doesn't take away the darkness, but it shines some light in it."- Abby Zachritz We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. In this powerful first episode of the year, Katie sits down with Abby Zachritz—better known as Advocacy Abby—who shares her journey from personal tragedy to becoming a beacon of hope for families in need. Abby recounts the near-drowning accident that changed her son Wyatt's life and how her unwavering hope and faith led her to discover vital resources. Now, through her platform, Abby connects families with grants and support they may not even know exists. This conversation is filled with practical advice, emotional insights, and inspiration for any parent navigating complex medical journeys. Katie and Abby dive into deep conversations about what it means to have hope during difficult seasons. 🔑 Key Points: Abby's Story: Learn how Wyatt's near-drowning accident, the initial prognosis, and how faith and hope played a role in his recovery. The Role of Hope: Why hope is essential for families facing medical uncertainty, and how it impacts not just parents but the entire care team. Community Support: How Abby's community rallied around her family with meals, transportation, and childcare during hospital stays. Discovering Grants and Resources: Abby explains how she found grants to fund life-changing therapies and equipment for Wyatt. The Birth of Advocacy Abby: How Abby's personal experiences led her to create a platform that connects families with essential grants and resources. The Connect Platform: Abby's resource for families to search for grants by location, diagnosis, and need—streamlining a once overwhelming process. ✨ Takeaways for Listeners: Hope is a Lifeline: Even in the darkest moments, holding onto hope can make a difference in your child's recovery journey. Ask for Help: Don't be afraid to lean on your community and accept support—it's vital for your well-being and your child's care. Grants Exist for a Reason: There are countless grants available for equipment, therapy, and even family vacations—many families just need to know where to look. Preparation is Key: Keep diagnosis letters, IEPs, and insurance denials in one file to simplify grant applications. Advocacy Matters: What you learn from your experience can help another family; advocacy can start with sharing one resource or grant. 🌐 Links and Resources from today's Episdoe Connect Platform Follow Abby on Instagram ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child's anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it free by clicking this link. 🎙️Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

Navigating Medical Rounds: Tips for Parents from a Child Life Specialist In this episode, Katie Taylor, a certified child life specialist, offers critical insights and tips for parents navigating medical rounds with their hospitalized children. She introduces Q Rounds, a new tool developed by Dr. Mike aimed at making rounds more predictable and accessible for families. Katie explains the purpose and structure of rounds, highlighting the importance of family-centered rounds. She provides strategies for effective communication with the healthcare team, including preparing questions in advance and understanding the role of nurses during rounds. Katie also emphasizes the value of collaboration and offers solutions for parents who can't be physically present, such as using apps like SupportSpot for consistent support and information. The episode aims to empower parents with the knowledge to advocate for their child's healthcare needs effectively. 00:00 Welcome and Introduction 00:08 Understanding Medical Rounds 00:56 Introducing Q Rounds 02:08 The Importance of Family-Centered Rounds 03:47 Tips for Effective Rounds Participation 06:50 Alternative Ways to Participate in Rounds 07:48 Conclusion and Additional Resources When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"Hope isn't about avoiding the hard truths. It's about staying grounded in them and still believing that something good is possible."- Katie Taylor In this final episode of 2024, Katie dives deep into the meaning of hope, exploring its role in navigating challenges for parents, children and Child Life Specialists. Reflecting on personal experiences and heartfelt conversations with families, this episode unpacks how hope isn't blind optimism but a source of strength that coexists with pain and uncertainty. With stories, reflections, and an invitation to carry hope into the new year, this episode is a comforting reminder of resilience and connection. Key Highlights Reflecting on the Year: A heartfelt wrap-up of 2024 with reflections on challenges, growth, and achievements in child life advocacy and care. Unpacking Hope: Hope is often misunderstood as blind positivity, but it's actually about survival and resilience in the face of reality. The Role of Hope in Healthcare: For families navigating diagnoses or healthcare challenges, hope provides strength and a way to keep moving forward, even amidst uncertainty. Children and Hope: Children express hope in simple yet profound ways, teaching us to approach challenges with courage and trust. A Message to the Child Life Community: Encouragement for continued growth, innovation, and using technology to expand child life's impact on families. An Invitation to Reflect: Listeners are encouraged to reflect on their own hopes and carry them into the new year. Resources for Listeners: SupportSpot App: A free 7-day trial available on iOS and Android, designed for families, clinicians, and child life specialists to support children through healthcare experiences. Child Life On Call Website: Explore resources and previous episodes, and learn more about child life services at ChildLifeOnCall.com. Advocacy Abby's Episode (Coming Soon): Look out for the upcoming episode in January featuring Abby's story of hope after her son's near-fatal drowning accident. A HUGE thank you to our sponsors: BeginHealth Prebiotics: Nutrition support for healthy digestion. Use code "ChildLifeOnCall" to get 25 percent off. 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®'s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child's favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"Life is always in the mix of joy and grief, and those things coexist. But this is how I'm going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with disabilities. From navigating her eldest son Benjamin's rare brain malformation, lissencephaly and complex medical needs to supporting her younger son Sebastian, who is on the autism spectrum. Joanne discusses the challenges, victories, and personal growth she's experienced. As a mother and special education teacher, and now an advocate for families of children with special needs, Joanne reflects on the importance of building community, embracing support, and living fully in the moment. Her story offers hope and practical wisdom for parents and professionals alike. Key Insights: The Power of Community: Joanne emphasizes the importance of connecting with other families who share similar experiences, as they provide invaluable emotional and practical support. Advocating for Your Child: Joanne shares her approach to advocating for her sons, including the importance of interviewing healthcare providers to ensure they see her children as whole individuals. Living in the Moment: Joanne describes how her background in modern dance taught her to "live in the movement," helping her find balance and perspective amid constant challenges. Adapting Over Time: Joanne reflects on how the challenges of parenting evolve as children grow, from educational decisions to navigating adult systems of care. Strength in Vulnerability: Through writing and advocacy, Joanne has found a way to process her experiences and turn them into a source of strength for others. A HUGE thank you to our sponsors: BeginHealth Prebiotics: Nutrition support for healthy digestion. Use code "ChildLifeOnCall" to get 25 percent off. 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®'s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child's favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer Resources and Tips Shared: Joanne's Blog and Book: Visit Joanne's blog at special-educationmom.com to learn more about her book, Fallen Recovery, and read more through her blog posts. Support Groups for Rare Conditions: Joanne highlights the value of connecting with email support groups and online communities for rare conditions. Search for condition-specific groups on platforms like Facebook or Yahoo Groups. Begin Health Prebiotics: The gut health of children is important. Visit BeginHealth.com and use code ChildLifeOnCall for 25% off products. SupportSpot: Download the SupportSpot app at childlifeoncall.com/supportspot for resources tailored to families navigating pediatric care. Tune in for an episode filled with vulnerability, wisdom, and a reminder of the strength found in community and resilience. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences t

"If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child."-Kathy In this heartfelt episode, Katie Taylor sits down with Kathy, a mother who shares her journey of raising and caring for her daughter Lauren through multiple medical challenges and eventual passing. Kathy's story is both heart-wrenching and inspiring. Kathy reflects on the emotional, physical, and logistical challenges of managing long hospital stays, becoming a caregiver to a child with complex medical needs, and balancing self-care amid unimaginable circumstances. Her insights on resilience, self-advocacy, and the deep bond with her daughter provide comfort and inspiration. Kathy's story is a powerful reminder of the strength it takes to navigate pediatric healthcare, turning pain into purpose, and the lasting impact of a parent's love. "I was there when that beautiful creature wandered into my life, and I was there when she drifted out." – Kathy Key Insights: The Importance of Self-Care: Kathy emphasizes the need to care for oneself to better support a sick child and encourages parents to take breaks from the hospital without guilt. Parent as Advocate: Transitioning into the role of a medical advocate for her daughter, Kathy highlights how training, learning, and persistence made a difference in Lauren's care. Finding Strength in Connection: Kathy discusses the vital role of family, friends, and small acts of kindness in sustaining her during Lauren's long hospital stays. Maintaining Normalcy: From packing business-casual clothes to involving Lauren in picking outfits, Kathy underscores the importance of preserving a sense of normalcy amid medical chaos. Legacy of Resilience: Kathy's advocacy didn't end with Lauren's passing; she continues to support others by sharing her story and working on resources for long hospital stays. A HUGE thank you to our sponsors: BeginHealth Prebiotics: Nutrition support for healthy digestion. Use code "ChildLifeOnCall" to get 25 percent off. 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®'s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child's favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer Resources and Tips: Support Spot App: Tailored guidance for families navigating medical experiences. Learn more Support Win Win Charity's mission of bringing smiles to children, families, and hospital staff nationwide. Join us to celebrate 12 years of inspiring performances, powerful stories, and magical moments. For a minimum donation of just $12, you can access Win Win Charity's 2024 Telethon fundraiser show in honor of our 12 years of bringing smiles to children in hospitals nationwide! Join the celebration featuring our 2024 "Entertainer of the Year" Tom Pesce, our 2024 "Hospital of the Year" Le Bonheur Children's Hospital, and our first-ever documented patient journey. There are two ways to join the experience on December 2nd! #1 Attend virtually on LeaderPass from anywhere in the world with a virtual pass. #2 Come to our in-person watch party at The Beverly Theater in downtown Las Vegas. We have a special surprise performance at our rooftop reception following the Telethon for those attending in Las Vegas. Simply donate $12 (or more), and we'll see you there! Reserve your spot: https://winwintelethon.com/ When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital pla

Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge. "You want to make sure that you are ready to be able to prepare not only yourself but your kiddo." - Emily Martinec, CCLS In this episode host Katie Taylor chats with Emily Martinec, another experienced Child Life Specialist. These two dive into the complexities of preparing children for an upper GI procedure. They provide valuable insights and practical tips for both parents and fellow specialists, sharing lessons learned from their work in pediatric radiology and GI. From scheduling the procedure to supporting children emotionally and physically, Katie and Emily guide listeners through every step of the process for both kids and parents. Whether you're a parent or a professional, this episode is packed with advice to help create an emotionally safe and successful experience for children. A HUGE thank you to our sponsors: BeginHealth Prebiotics: Nutrition support for healthy digestion. Use code "ChildLifeOnCall" to get 25 percent off. 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®'s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child's favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer Key Insights Preparation is Key: Schedule the procedure around your child's routine (e.g., feeding and nap times) and advocate for care at a pediatric facility. Child-Led Support: Tailor explanations based on your child's age—toddlers need short, concrete steps, while older children benefit from a detailed walkthrough. Creative Coping Strategies: Bring familiar items like a favorite cup or lovey, and offer simple choices (e.g., flavoring options for the barium). Parent Emotional Regulation: Stay calm and positive, which helps children feel safe and supported during the procedure. Teamwork with Staff: Collaborate with radiology staff and child life specialists to create a smooth experience tailored to your child's needs. Resources and Tips: Support Spot App: Step-by-step guidance and visuals for procedures like the upper GI. Download here Age-Appropriate Preparation Tips: This episode provides strategies tailored to each age group, offering practical and developmentally appropriate tips to help ease anxiety and ensure a smoother experience for both kids and caregivers. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

A huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®'s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child's favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer "Being both a NICU nurse and a mom transformed how I view and support each child and family I work with." In this episode host Katie Taylor speaks with a NICU nurse and mother, Brittney, who shares her unique perspective on navigating the healthcare system from both sides; a NICU nurse and NICU mama. Brittany reflects on her journey as a NICU nurse who then became a NICU mom of twins, describing how her experiences inspired her to write a NICU-themed children's book and launch a publishing company. Her story highlights the emotional, mental, and logistical challenges of parenting in a NICU environment and how she uses her experiences to support families facing similar journeys. Key Insights and Lessons: Value of Empathy and Shared Experience: Brittney's journey as a NICU mom brought a new level of empathy to her work, allowing her to connect deeply with the parents she now supports. Empowering NICU Parents: Brittney emphasizes the importance of empowering parents with hands-on involvement, helping them gain confidence in their caregiving roles despite medical complexities. Advocating for Comfort in the NICU: Encouraging parents to bring personal items, create a nurturing space, and advocate for their emotional needs helps make the NICU environment feel more like home. Navigating the Unknowns of NICU Life: For Brittney, the hardest part of the NICU experience was the slow, unpredictable progress toward discharge, which she now prepares her patients' families for, emphasizing resilience and patience. Resources and Tips: Find Brittney's resources at Thrift Publication Company. This includes: Her childrens book "Cradles of Courage: Adventures in the NICU" in both pink and blue "I am a NICU mom: Coloring Book" A NICU journal, "The Journal of Our Story: A Medical Notebook for the Organized NICU Parent." which is designed to help parents track progress and milestones Brittney's Instagram for updates and NICU-related content: @thriftpubco When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

A huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®'s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child's favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer "When children are better prepared for a procedure or medical situation, it doesn't eliminate all of the struggles, but it builds a level of trust." - Alessandra In this week's episode of The Child Life On Call Podcast, host Katie Taylor sits down with Alessandra, the founder of PrepMeKids, to discuss her personal journey navigating her son's rare medical condition, breath-holding spells, from the NICU to childhood. Alessandra shares the emotional toll of advocating for her son in a foreign country, where she had to bridge communication gaps and trust her instincts in a healthcare system very different from the one she knew. Her story highlights the power of preparation and communication with children, especially in medical situations, and how her personal experiences led her to create customizable books to help kids feel empowered and prepared for medical procedures. Through her experience, Alessandra emphasizes the importance of honesty, advocacy, and resilience in medical parenting. "Parents do know their children, even if they're very young, and we do have gut instincts. It's okay to ask questions and to push back." - Alessandra Key Insights: Preparation is crucial for both children and parents when facing medical procedures. Customized books like PrepMeKids help reduce anxiety and build trust. Advocacy is an essential skill for parents, especially when navigating different healthcare systems. Alessandra emphasizes trusting your gut and asking questions, even when it's uncomfortable. Honesty with children about what to expect in medical procedures fosters trust and resilience; Alessandra narrates her son's breath-holding spells to help him understand what's happening. Tracking and organizing medical symptoms can help parents notice patterns and advocate for appropriate care. But knowing when to stop tracking is essential for mental well-being. Emotional overwhelm is common for parents and caregivers. Finding tools and strategies to manage stress, like Alessandra's tips on preparation, is key to long-term resilience. Resources and Tips Shared in the Episode: PrepMeKids: Customizable books designed to help children prepare for medical procedures. Support Spot App: A tool to help parents track symptoms, write down questions, and advocate for their children during medical appointments. What's an IV: A children's book by child life specialist Melissa Fadel and nurse Rosemary Pang, aimed at preparing kids for the IV process in a simple, non-scary way. @PedsDocTalk on Instagram recently shared a video of a child having a breath-holding spell that went viral. Click here to watch When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews

Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know Thank you to the sponsor of today's podcast: Begin Health In this episode of the Child Life On Call Podcast, hosts Katie Taylor and Emily Martinec, both certified child life specialists, discuss strategies for preparing, supporting, and responding to children during flu shots. The conversation extends to other medical experiences, offering developmentally appropriate ways to engage children. They emphasize collaboration with medical professionals, highlight coping techniques, and provide resources like the Support Spot app and a digital flu shot preparation course for parents. The focus is on empowering parents and creating a positive healthcare experience for children. 00:00 Introduction to Flu Shot Preparation 01:10 Empowering Parents and Respecting Medical Professionals 03:05 Understanding the Emotional Impact of Shots 04:08 Practical Tips for Flu Shot Day 09:31 Pain Management Techniques 21:07 Post-Shot Processing and Recovery 24:37 Final Thoughts and Encouragement When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story "We've joined a club that nobody wants to be a part of, but the good part is we have the best members." A huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®'s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child's favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer In this episode, Katie Taylor interviews Heather, host of the Navigating Childhood Cancer podcast and mother of a teenager diagnosed with leukemia, in honor of Childhood Cancer Awareness Month. They discuss the challenges of receiving a cancer diagnosis for your child, managing cancer treatments, including pill swallowing, and navigating parent guilt. Heather shares her family's journey and how she balanced protecting her son while also being open about her experience to support other families. Through her podcast, Heather provides a space for families to share their stories, giving listeners the strength to cope with childhood cancer. Key Insights & Lessons Learned: Pill Swallowing is a Process: Sometimes the goal isn't mastering a technique but simply finding what works, even if it means grinding pills for an extended period. The Importance of Listening to the Child: Empowering the child to make decisions about their care, like how they take their medicine, can alleviate unnecessary stress. Parent Guilt is Real, but Not Always True: Parents often struggle with feeling responsible for their child's illness, but as Heather was reminded, it's not your fault. Sharing Helps, But Boundaries Matter: Heather highlights the balance of sharing personal experiences while respecting her son's privacy, which is crucial when sharing such a sensitive journey. Resources and Tips: Navigating Childhood Cancer Podcast: Hosted by Heather, this podcast shares stories and lessons from families going through childhood cancer. Listen here Book Recommendation: What's an IV? by Melissa Fadel and Rosemary Pang – a child-friendly guide of the IV process. Get the book here Begin Health To learn more about the sponsor of today's episode, Begin Health, click the link here to get a 25% off coupon! When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"Trust your gut. If your parent radar comes up and says this is not right, keep pushing." – Kim In this episode, Katie Taylor speaks with Kim Miller, a mother whose journey navigating her son Grant's diagnoses of juvenile arthritis reshaped her life. Kim shares how her relentless advocacy led her family through unimaginable challenges, including managing chronic pain and finding the right medical care. Her inspiring story unfolds from the hardships of watching her son struggle to walk, to his incredible transformation into an NFL player. The episode highlights the critical role of trusting your parental instincts, advocating for your child, and finding innovative ways to manage chronic pain, offering hope to parents in similar situations. Key Insights: Trust Your Instincts: Kim emphasizes the importance of trusting your gut as a parent and advocating persistently when something feels wrong, despite resistance from doctors. Holistic Care: The integration of multiple specialists and specialties working together in a holistic manner, including both physical and psychological treatment methods, was key to finding a comprehensive treatment plan for her son. Creative Healing: Techniques like art therapy, music therapy, and acupuncture played a significant role in managing her son's chronic pain and improving his quality of life. Resilience Leads to Success: Despite the odds, Kim's son went from a wheelchair to playing in the NFL, showcasing the power of determination, support, and a positive mindset. Support Networks Matter: Finding others who understand your struggles, whether through social media or hospital communities, can provide invaluable emotional and practical support. Resources and Tips: Creative Healing for Youth in Pain (CHYP): Offers free online resources for adolescents and families managing chronic pain. Visit mychipchyp.org for webinars, creative healing workshops, and more. Mindfulness & Pain Management: Dr. Zeltzer's pioneering work in pediatric pain management focuses on rewiring the brain through techniques like self-hypnosis and mindfulness. Sour Candy Tip for Pain Management: A sour candy before a painful shot can help trick the brain into focusing on the sour taste instead of the pain. Book Reccomendation: What's an IV Start by Melissa Fatal, A Child Life Specialist, and Rosemary Peng, a nurse is a new favorite of ours, walking us through how to prep a child for an IV start. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"We are the experts on our daughter and we deserve a say, and we deserve to be given the time to ask questions." – Nikki DeLeo We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. In this heartfelt episode, host and Certified Child Life Specialist Katie Taylor speaks with Nikki DeLeo, a mother of Taylor, her daughter who has Cystic Fibrosis (CF). Katie and Nikki discuss Nikki's journey navigating her daughter Taylor's diagnosis from day one, the emotional rollercoaster of becoming a medical parent, her advocacy for Taylor's care, and the importance of equity in newborn screenings for CF. With Taylor's unique case, Nikki discusses the challenges and triumphs of managing a life-changing diagnosis, emphasizing the role of medical teams and community support in fostering resilience and hope. Key Insights: The Importance of Early Diagnosis: Nikki emphasizes how critical early diagnosis was for her daughter Taylor, who started life-saving medication within months of her birth. Advocacy and Education: Nikki shares how she became an expert in her daughter's care, highlighting the necessity of parents being active members of the care team. Equity in Healthcare: Nikki passionately discusses the disparities in newborn screenings for children of color and the need for equity in medical care to prevent delayed diagnoses. The Power of Community: Finding other parents online and connecting with the Cystic Fibrosis Foundation were vital for Nikki in navigating the challenges of CF. "Finding other parents online who are going through the same thing has been a lifeline for me." – Nikki DeLeo Resources & Tips: Cystic Fibrosis Foundation: Visit the CF Foundation to find local chapters and resources for parents and caregivers. Book Recommendation: Breath from Salt - An insightful book about the CF community and the advancements in CF care. Follow Nikki's Journey: Check out Nikki's Instagram page, @salt_for_sweet_t, for more on her family's journey. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"If you have a doubt about something with your child or a family member, it's just really important to keep pushing through and get to the answers." – Gay Grossman In this episode, host Katie Taylor speaks with Gay Grossman, a passionate patient advocate and mother, about her journey navigating the rare disease world. Gay shares her experience of seeking a diagnosis for her daughter, advocating for genetic testing, and supporting families through complex medical and educational challenges. Her story highlights the importance of persistence, building a support network, and staying organized. Gay's insights provide invaluable advice for both child life specialists and parents and caregivers dealing with rare diseases. Key Insights: The significance of early genetic testing in providing crucial information and guiding treatment decisions. The importance of building a support network to navigate the medical and educational challenges. Staying organized and persistent in the face of numerous medical consultations and uncertainty. The emotional and psychological toll of advocating for a child with a rare disease. The role of patient advocacy in supporting families and advancing research. Resources and Tips: GeneDx: Genetic testing and counseling services. Child Neurology Foundation: Resources for fighting insurance denials and other support. Women In Bio and Athena: Support network for women in science and biotechnology. Connect with Gay on LinkedIn. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"Combining my personal experiences as a mom with my professional role has given me a unique perspective on the challenges families face and the solutions they need." - Jaclyn Pederson In this insightful episode, host Katie Taylor speaks with Jaclyn Pederson, CEO of Feeding Matters and mother, and Athena Flicek, a dedicated mother of a child with feeding difficulties, about the complexities of pediatric feeding disorders. Jaclyn and Athena share their personal and professional experiences, emphasizing the importance of early intervention, advocacy, and comprehensive resources. They discuss how Feeding Matters supports families and healthcare professionals, helping them navigate the challenges of feeding disorders. This episode provides a valuable perspective for both parents and child life specialists, highlighting the impact of community and support in overcoming these challenges. Key Insights and Lessons: The Importance of Early Intervention: Identifying and addressing feeding disorders early can significantly reduce long-term psychosocial impacts on children. Advocacy and Empowerment: Parents must learn to advocate for their children, even when it feels overwhelming, to ensure they receive the necessary care and support. Comprehensive Support Systems: Organizations like Feeding Matters offer essential resources, peer coaching, and financial assistance to families facing pediatric feeding disorders. Understanding Pediatric Feeding Disorders: Awareness and education about feeding disorders are crucial for both parents and healthcare providers to properly support affected children. Mental Health Support: Prioritizing mental health for both parents and children is essential in managing the stress and challenges associated with feeding disorders. Resources and Tips: Feeding Matters: An organization that supports parents of children with pediatric feeding disorders through advocacy, education, support, and research Peer-to-Peer Support: Connect with other parents through Feeding Matters' peer coaching program for shared experiences and support. Financial Assistance: Due to the high costs and low insurance coverage of treating pediatric feeding disorders, Feeding Matters provides financial assistance. Annual Pediatric Feeding Disorder Conference: Attend or participate in the yearly conference organized by Feeding Matters to stay updated on the latest research and resources. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"I feel like I owe it to him to explore other avenues. Acceptance doesn't mean giving up; it means continuing to learn and adapt."- Lexi In this episode of Child Life On Call, Katie Taylor speaks with Lexi, a devoted mother of two, about her family's journey with alopecia universalis. Lexi shares the emotional challenges and triumphs of supporting her three-year-old son, Penn, who was diagnosed with this rare condition. Through sharing her story, Lexi highlights the power of parental instincts, blending Western and Eastern medicine, and advocating for her child's unique needs. Her story offers valuable insights for parents and professionals alike, emphasizing the power of resilience and community in pediatric healthcare. Key Insights: Early Diagnosis and Gut Instincts: Lexi's intuition played a crucial role in identifying her son's alopecia early on, showcasing the importance of parental instincts, and advocating for them, in healthcare. Navigating Emotional Challenges: Lexi discusses the emotional impact of her son's diagnosis and how her husband's positive outlook has been a source of strength for their family. Advocacy and Medical Care: The necessity of finding specialized dermatologists and the integration of Western and Eastern medical practices are highlighted as key components of Penn's care. Coping with Public Reactions: Lexi shares strategies for handling public reactions and educating others about alopecia, aiming to foster empathy and understanding. Community and Support Systems: The episode underscores the value of support systems, both within the family and from the wider community, in navigating a rare medical condition. Resources and Tips: National Alopecia Areata Foundation: Connect with support groups, explore treatment options, and find resources tailored for alopecia families. https://www.naaf.org/youth-mentor-program/: Support group pairing kids with mentors that Lexi mentioned. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

"My immediate thought was I'm going to lose my son. That was where my head went immediately." - Reina Introduction In this episode of Child Life On Call, Katie Taylor talks with Reina, a devoted mother from Nashville, Tennessee. Reina shares her heartfelt journey of caring for her son Elliott, diagnosed with Burkitt lymphoma at eight years old. She discusses the emotional and practical challenges faced during Elliott's treatment, the importance of advocating for her child's needs, and the support systems that played a crucial role in their journey. Reina's story highlights resilience, the power of community, and the significance of effective communication in pediatric healthcare. Key Insights: Early Diagnosis and Challenges: Elliott's diagnosis journey began with a seemingly minor issue, leading to the discovery of a large mass in his tonsil, which was diagnosed as Burkitt lymphoma. Importance of Advocacy: Reina emphasizes the critical role of parental advocacy, including meticulous record-keeping, clear communication with medical staff, and involving Elliott in his care decisions. Support Systems: The support from family, the school community, and the involvement of a Child Life Specialist were invaluable in navigating the complexities of treatment and providing emotional and practical help. Emotional Coping: Reina discusses the emotional toll of her son's illness, the importance of mental health support, and the strategies used to help Elliott cope with the changes and challenges of his treatment. Creating Resources: Inspired by their experience, Reina has created children's books to help other families navigate similar journeys, emphasizing the importance of involving children in their care and providing accessible resources. Resources and Tips: "When a Kid Like Me Fights Cancer" and other resources for helping children understand and cope with cancer. Read "A Brave Kid's Guide to Lymphoma" and"A Brave Kid's Guide to Leukemia" to help your child cope with a lymphoma or leukima diagnosis. To learn bout the mission of Hello Brave, founded by Reina, visit their website here. When parents feel empowered, everyone wins – kids thrive and the care team excels! Get the SupportSpot app! Now available for ALL parents without a hospital code! SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

Episode Description: In this special impromptu episode, Katie Taylor, Certified Child Life Specialist and CEO of Child Life On Call, shares some exciting news! We're rebranding our beloved Child Life On Call app to SupportSpot. Tune in to hear why we made this change and what it means for you and your family. Plus, get a sneak peek into the new features and benefits you can expect from SupportSpot. This is an announcement you won't want to miss! Show Notes: [00:00] Introduction Welcome from Katie Taylor Brief overview of the exciting announcement [00:30] Reflecting on the Journey Katie's background and passion for child life services The origin of the Child Life On Call podcast and its impact [01:00] The Big Announcement Introducing the rebrand: Child Life On Call app is now SupportSpot Reasons for the change: Enhanced Clarity: SupportSpot better reflects the app's purpose and broadens its appeal Broader Appeal: Communicates the app as a comprehensive family support resource during medical experiences [02:00] The Power of Prepared and Empowered Parents The importance of parents knowing what to expect and how to advocate for their children The impact of child life services beyond children's hospitals [03:00] The Evolution of Child Life On Call From podcast to app: How Child Life On Call grew to SupportSpot The incredible journey and feedback from parents and care teams [04:00] Features and Benefits of SupportSpot Overview of new features and improvements Access to resources, child life tips, procedure guides, therapeutic activities, and more [05:00] How to Get SupportSpot Available for download on iOS and Android Keeping the price low to ensure accessibility for all families Encouraging parents to spread the word [06:00] Continuing Hospital Partnerships Ongoing collaboration with hospitals to ensure families have access to the app at no cost The vision for future growth and impact [06:30] Conclusion Katie's promise to parents: Empowerment and confidence in healthcare situations Closing remarks and gratitude for the support Links and Resources: SupportSpot Website Download SupportSpot iOS or Android Follow us on Instagram Don't forget to subscribe, rate, and review Child Life On Call on your favorite podcast platform. Your support helps us reach more families and provide them with the tools they need for a positive healthcare experience.

In this episode host Katie Taylor sits down with Ashley O'Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay. Listen to hear how she balanced work, advocating for her son's needs, coping with personal loss, as well as providing invaluable support and resources to other families in similar situations. "The hardest part isn't being in the NICU; it's the real advocating that starts after discharge." - Ashley O'Neil Key Insights: Early Challenges: Ashley shares the difficulties of having a baby born at 25 weeks and the emotional turmoil of seeing healthy babies at work while her own child struggled in the NICU. Advocacy: Emphasizing the importance of advocating for her child, Ashley highlights how she meticulously kept records, attended rounds, and communicated her son's needs to the medical staff. Support Systems: The significance of community support and online groups played a crucial role in her journey. Resilience: Despite being told what her son might not achieve, Ashley remained steadfast in her belief in his potential, advocating for her son, and celebrating every milestone and victory. Navigating Systems: The real battle often begins after leaving the NICU, dealing with insurance, medical equipment, and ensuring her child receives the necessary care and resources. Resources and Tips Ronald McDonald House: Provides essential housing and support for families with hospitalized children. Insurance Navigation: Practical advice on dealing with insurance companies and securing Kids Grief Support: Find information and resources to support grieving children. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot App's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpotApp helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot App has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpotApp has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

On today's episode, Katie had the privilege of speaking with Annie Gunning, a Certified Child Life Specialist and Grief Counselor, and Haley Thomas, a Licensed Master Social Worker, on their collaborative efforts to support families at Hope for HIE. Annie and Haley tailor their support to each family's unique needs, dedicating time to assess and implement the most effective strategies. Under the visionary leadership of Betsy Pilon, Executive Director of Hope for HIE, Annie and Haley are setting new standards in providing exceptional support to the families they serve. Key Takeaways It's important to meet families where they are. Finding ways to help prepare children for procedures with items you have at home empowers children and their families. Supporting the non-patient can be very impactful to families, this includes the siblings and parents. Loss and Bereavement support is crucial to families. Grief is not linear and the community as a whole can be affected by a loss. Annie and Haley support these families through monthly support groups. Collaborative support from one another professionally can create strong partnerships with the best interest of the family and child at heart. When seeking help in a hospital setting, reach out to the person who makes you feel most comfortable. If they cannot provide the specific support you need, they will know who can and will direct you to the right resource. Learn more about Hope for HIE here. Parent Stories Matter If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys. When parents feel empowered, everyone wins – kids thrive and the care team excels! Empower Parents & the Care Team with SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

Episode Description: Join Katie Taylor, CCLS in this episode as she talks with Dr. Michael Pitt the founder of Q-Rounds and a compassionate pediatrician (and magician!) dedicated to enhancing doctor-patient communication. As a child life specialist, Katie understands how crucial it is for families to not only be present during rounds but also to feel empowered and actively engaged in discussing the care plan with their team. When she learned about Q-Rounds, she knew she had to share this innovative approach with her parent and child life community. Dr. Mike shares his insights on how healthcare professionals can better connect with their patients and the impact of these interactions on the overall healthcare experience. From amusing anecdotes with medical students to practical tips for introducing oneself to patients, Dr. Mike's stories and advice are both enlightening and entertaining. In This Episode, You'll Discover: Dr Mike's Focys on Enhancing Doctor-Patient Communication: Dr. Mike discusses his research on effective communication in healthcare, including a study conducted at the state fair on how patients prefer their doctors to introduce themselves. Q-Rounds Launching in Children's Hospitals Exciting news! Q-Rounds, a virtual queue that sends real-time notifications to patients, families, nurses, and other stakeholders of when to arrive for rounds and gives families the opportunity to join virtually if they can't be there in person, is now being deployed in children's hospitals, with Dr. Mike at the forefront of this initiative. Parent Stories Matter If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys. When parents feel empowered, everyone wins – kids thrive and the care team excels! Empower Parents & the Care Team with SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan