229: Trusting your parental Instincts when addressing your child's chronic pain- A son with Juvenile Arthritis- Kim’s Story
Release Date: 09/18/2024
![Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story show art](https://assets.libsyn.com/item/36454015?height=50&width=50)
Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
📢 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:...
info_outline
Two Sisters with Cystic Fibrosis - Laura's Story (252)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
info_outline![A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story show art](https://assets.libsyn.com/item/36190285?height=50&width=50)
A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
📢 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...
info_outline
A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
info_outline![How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story show art](https://assets.libsyn.com/item/35991140?height=50&width=50)
How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
info_outline
MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"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...
info_outline
A Cerebral Palsy Diagnosis: Traumatic Birth, Micropreemie Twins & the Power of Hope {REPOST}- Savannah’s Story (247)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“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 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...
info_outline
Pyroxd1 and the Path Forward: A Rare Disease, a Life-Saving Lesson & a Mission to Help Others- Maria + Matt's Story (246)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"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 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...
info_outline![Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245) show art](https://assets.libsyn.com/item/35575705?height=50&width=50)
Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"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 What happens when your...
info_outline
A Mother and a Physician: Navigating Her Daughter’s NMOSD Diagnosis – Maggie’s Story (244)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"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 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...
info_outline"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!
- 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.