202: Infantile Spasms, Healing from Trauma and Emotional Resilience
Release Date: 01/17/2024
How One Mom Navigated her daughter’s Severe Food Allergies (271)- Susanna's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
From “colic” that never eased to four pages of confirmed allergens, Susanna Peace Lovell recounts the first years of parenting her daughter, Arizona—years marked by nonstop crying, full-body eczema, and relentless advocacy. When a hypoallergenic formula finally brought relief around 18–19 months, Susanna could breathe—and begin reframing motherhood with compassion for her child and herself. She shares practical allergy survival tips (from table toppers to EpiPens), how autism diagnosis informed self-advocacy, and why community through We Are Brave Together mattered. This conversation...
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Empowering Parents Through Play-Based Physical Therapy (270)- Allison's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this episode, Dr. Allison Mell—pediatric PT and founder of Tots on Target—breaks down how therapy for kids doesn’t have to feel overwhelming. She shares real talk about what progress actually looks like, why play is so powerful, and how parents can weave therapy into everyday life without adding stress. From NICU graduates to toddlers finding their stride, Allison reminds us that tiny wins build up to big milestones. Her approachable, down-to-earth advice helps parents feel supported, capable, and ready to advocate for their child’s needs. Resources mentioned: Tots on Target...
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From Anxiety to Answers: a journey to a PANDAS diagnosis (269)- Camryn's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
info_outline![A daughter with Down Syndrome, AVSD and Pulmonary Hypertension [REPOST] (268)- Courtney's Story show art](https://assets.libsyn.com/item/37904965?height=50&width=50)
A daughter with Down Syndrome, AVSD and Pulmonary Hypertension [REPOST] (268)- Courtney's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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: – A resource hub for...
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A Tuberous Sclerosis Complex Diagnosis and Finding Strength in Vulnerability (267)- Erin's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
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Nursing and Motherhood After a Prenatal Diagnosis of Achondroplasia (266)- Victoria’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
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A Mother-Daughter Journey Through Crohn’s Disease, Storytelling, and Advocacy (265)- Quinn + Kirby's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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...
info_outline![An Unexpected Diagnosis at 22 Months: Infantile Spasms and Advocacy [REPOST] (264)-Kate's Story show art](https://assets.libsyn.com/item/37534030?height=50&width=50)
An Unexpected Diagnosis at 22 Months: Infantile Spasms and Advocacy [REPOST] (264)-Kate's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“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...
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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...
info_outlineIn this episode about parenting a child with infantile spasms, Katie Taylor, a certified child life specialist, has a profound conversation with Hailey, a resilient mother navigating the complexities of raising a child with a disability. Join us as we delve into Hailey's journey, exploring the challenges and triumphs of parenting under extraordinary circumstances.
"It's not always about thriving in the traditional sense; sometimes it's about finding small victories in our daily struggles and embracing them." - Hailey Adkisson
About the Episode:
This episode offers an intimate glimpse into the life of Hailey, a mother from the Pacific Northwest, and her blended family. Hailey shares her experiences managing her professional life while being a dedicated caregiver to her youngest child, diagnosed with infantile spasms. The discussion also touches on the significance of mindfulness and the power of being present, especially during challenging times.
From the episode with Hailey and Katie, here are three key takeaways:
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The Importance of Advocacy and Community: Hailey emphasizes how advocacy and connecting with a community have been vital for her. She discusses the therapeutic aspect of advocating for her child and how it has helped her connect with other families in similar situations.
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Challenges and Adaptations in Parenting: The conversation highlights the difficulties of parenting a child with medical complexities. Hailey shares her experiences of managing work-life balance and the adjustments she and her family have had to make to accommodate their child's needs.
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Mindfulness and Presence in Caregiving: Both Hailey and Katie touch upon the theme of mindfulness in caregiving. They discuss the challenges of staying present and mindful while dealing with recurring medical crises and the importance of finding ways to disconnect momentarily without losing focus on the child's needs.
"I've learned so much from my daughter. Even though the journey is tough, it has opened my eyes to a different kind of love and strength." - Hailey Adkisson
In our enlightening talk with Hailey, we discover the often-overlooked realities of caregiving and the resilience it fosters. Her parenting journey is a testament to the strength found in adversity and the importance of mindfulness in the face of life's challenges. We hope this episode inspires and provides valuable insights to caregivers and families facing similar journeys.
You can buy Hailey's book, What is Epilepsy?, on Amazon.
About Katie Taylor, CCLS and Child Life On Call:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.
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