A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story
Release Date: 04/16/2025
From Bedside Nursing to Butterfly Pig: A Mission to Reduce Pediatric Medical Trauma Through Play (263)-Mary’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“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...
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"Can You Invite Her In?" — A NICU Story: Healing & Advocacy [REPOST] (262)- Tanisha's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“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...
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How to Talk with Kids About Disasters, Illness, and Other Tough Topics
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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,...
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When your Child is Diagnosed with Leukemia: Wisdom from a Cancer Parent (260)- Laura's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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: ...
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Navigating Childhood Loss Through Storytelling (259)-B.R.'s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
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How a Nurse Practitioner Faced Her Daughter’s Tetralogy of Fallot Diagnosis (258)- Sarah's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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 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...
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The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
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Helping Kids Swallow Pills:Tips and tricks for Parents from a Child Life Specialist (256)-Adina's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
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A Microtia Atresia Diagnosis: Hearing Aids, Surgery and a Journey of Hope [REPOST] - Kim's Story(255)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“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...
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Blended Tube Feeding for G-tube fed Kids & Adults: How a dietician empowers families through food - Hilarie’s Story (254)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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 , 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...
info_outlineWhat 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.
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📩 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.