Inside the Children's Hospital

When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Today's guest joins Katie Taylor to share her daughter's Type 1 Diabetes journey—from dismissing "textbook" symptoms to navigating the financial challenges of families when it comes to chronic illness. This episode explores how one Mom moved from denial to "work mode" and how the HealthWell Foundation helps families afford life-saving medications.

Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.

Download our free Children's Hospital passport to empower your child to feel comfortable in the children's hospital.

• Medical Support: Sanford Children's Hospital, Sioux Falls, SD.

• Nonprofit Support: HealthWell Foundation (Pediatric Assistance Grant).

• Community & Education: Children with Diabetes (10-year coins) and Stacey Simms (Diabetes Connections), Headstrong Foundation

• Connect with Alicia directly

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• Visit insidethechildrenshospital.com to easily search stories and episodes

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Medical information provided is not a substitute for professional advice—please consult your care team.

Keywords: Type 1 Diabetes, T1D diagnosis, HealthWell Foundation, pediatric healthcare, medical financial assistance, insulin costs, child life specialist, diabetes symptoms in kids, middle class healthcare help, medical debt, Dexcom, Omnipod, childhood chronic illness, parenting a diabetic child, Sanford Childrens Hospital, co-pay assistance, pediatric grants, medical parenting, T1D symptoms, diabetes advocate.

When your child receives a new medical diagnosis, it can feel like the world shifts beneath your feet. Here's how to move forward with clarity, support and connection, hosted by Katie Taylor and the Inside the Children's Hospital podcast.

Listen to more stories at insidethechildrenshospital.com.

Medical information provided is not a substitute for professional advice—please consult your care team.

Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.

Keywords:

children's hospital, NICU, child life specialist, pediatric healthcare, medical diagnosis, parental support, finding the right doctor, healthcare journey, patient-provider relationship, medical trauma, chronic illness, sibling dynamics, hospital stay tips, advocacy organizations, financial assistance, HealthWell Foundation, new diagnosis, community support, emotional coping, grief and hope, navigating insurance, parent self-care, psychosocial support, family-centered care, pediatric medication costs, medical play, patient education, online support groups, rare disease, healthcare communication, palliative care

If your child is facing a diagnosis, procedure, or hospitalization — you're not alone.

Inside the Children's Hospital brings you real stories from parents who've walked this path. Not medical advice, but the kind of honest conversation you need when you're scared, exhausted, and looking for someone who gets it.

I'm Katie Taylor, a Certified Child Life Specialist with 15 years supporting families through hard moments in pediatric healthcare.

On this podcast, I interview caregivers who share what it's really like — the sleepless nights, the uncertainty, the small victories, the moments that break you and the ones that keep you going. You'll find yourself nodding along, regardless of your child's specific diagnosis.

These are true lived experiences that remind you: other parents have felt this too, and there are ways through.

Subscribe to find:

→ Stories from parents who understand

→ Practical coping strategies that have actually worked for families

→ Reassurance that what you're feeling is normal

→ Community when you need it most

This isn't a clinical lecture — it's parents talking to parents, with a child life specialist helping translate the experience. You're here because something hard brought you here. I'm glad you found us.

🎙️ New episodes every Wednesday

🌐 More resources: childlifeoncall.com and insidethechildrenshospital.com

Medical Legal Disclaimer: This podcast is for informational purposes only and does not constitute medical advice. Always consult your healthcare provider for guidance about your child's health.

Feeling alone after your child's diagnosis? Discover three powerful lessons that have changed how families find hope, support, and confidence while navigating pediatric healthcare.

In this solo episode, child life specialist Katie Taylor distills eight years of conversations with hundreds of families into three essential takeaways every parent needs when thrust into the pediatric healthcare world. If you're overwhelmed by medical decisions, uncertain about switching providers, or searching for ways to support your child—and yourself—during hospital life, this episode offers tangible steps and comforting wisdom.

WHAT YOU'LL LEARN: - You are not "stuck" with your child's assigned doctor and can (and should) seek a provider who fits your family's needs - Open communication and advocating for yourself and your child are vital in every medical setting - Narrating medical experiences with your child helps prepare them, builds trust, and fosters resilience - Small acts of self-care are crucial to preserving your strength as a caregiver - Every family's coping strategy is valid; don't compare your self-care to what you see on social media

TIMESTAMPS: 0:00 - Introduction & Podcast Purpose 0:37 - Wide Range of Diagnoses Covered 1:33 - Who This Podcast Is For 2:39 - Lesson 1: You're Not Stuck With Your Doctor 5:02 - Lesson 2: How Narrating Medical Experiences Supports Your Child 6:08 - Real-Life Story: Marley's Experience With Type 1 Diabetes 8:50 - Lesson 3: Redefining Self-Care for Medical Parents 10:25 - Simple Self-Care Strategies 11:41 - What's Coming in 2026 13:12 - Important Disclaimer

RESOURCES: - Book: "Real Self-Care" by Dr. Pooja Lakshman - Marlee & Bain's Story on TikTok: @BainT1D - Effie Parks/Once Upon a Gene Podcast

HOST: Katie Keating is a Certified Child Life Specialist who has spent over 15 years supporting families navigating pediatric medical experiences.

CONNECT: Instagram: @childlifeoncall

⭐ Leave a review on Apple Podcasts or Spotify—your feedback helps us reach more families!

In this profoundly moving and honest conversation, we sit down with Jeff Loving, a NICU dad, husband, and now an author, who shares the intimate and often unspoken grief experienced by fathers after pregnancy loss. Jeff walks us through the heartbreaking loss of his two sons, Davian and Jadon, the struggle to find empathy and appropriate medical care, and how these experiences ultimately led him and his wife, Cassie, to become fierce advocates for their future family. This episode is a raw look at marriage under immense stress, the importance of empathetic medical staff, and the redemptive joy of welcoming their "double rainbow" daughter, Isla Grace. Jeff also discusses his mission to help other men through their grief by writing his book, Holding Onto the Light.

Time

Topic

Key Takeaway

00:06

Meet Jeff Loving: Husband, NICU Dad, and Author

Jeff introduces his family, including his dog, Sage, his wife, Cassie, and their NICU "double rainbow" baby girl, Isla Grace, reflecting on five years of marriage and three pregnancies.

01:08

The Loss of Davian (First Pregnancy)

Jeff describes the initial shock and excitement of their first pregnancy, the sudden onset of symptoms at 19 weeks, and the devastating choice they faced in the hospital due to an infection: lose the baby, or risk losing both the baby and his wife.

04:55

The Cruel Disconnect of Grief

Jeff recounts the soul-crushing moment of holding his son, Davian, as his heartbeat stopped. He shares the struggle of navigating intense grief while the world—and Thanksgiving—kept moving around them.

07:58

Finding Support: The Power of Presence

The discussion turns to how his family supported them by simply being present, rather than offering platitudes like "it's God's plan." The importance of showing up for grieving parents is highlighted.

11:21

Empathetic vs. Detached Care

Jeff praises the nurses who were a "calming presence in the chaos" and later attended Davian's service. Conversely, he shares a painful anecdote about a male doctor's detached and jovial demeanor, asking if he wanted to cut the cord after the loss.

15:51

What Compassion Looks Like in Care

Jeff shares what he wished the doctor had said: "I know this is very hard... just know that my heart breaks for you, and I'm so sorry that you guys are going through this." This is a vital lesson for medical professionals.

16:55

Marriage Under Stress

After moving to North Carolina for a fresh start, Jeff discusses how the loss put their marriage under extreme stress—it would either break them or bond them deeper. They emerged stronger.

23:13

The Loss of Jadon (The Second Pregnancy)

The traumatic situation repeats almost day-for-day with their second son, Jadon. Jeff details the medical system's failure to provide a cerclage procedure, despite repeated requests, and the resulting emergency.

26:45

The Audacity of Poor Communication

Jeff recounts being livid when the doctor who denied them the preventive cerclage entered the room without him present to tell his wife they were losing their baby, and then left without speaking to Jeff.

34:20

The Blessing of Angel the Bereavement Coordinator

Jeff shares the incredible support they received from their bereavement coordinator, Angel, who handled every detail from handprints to selecting clothes, even providing a moment of much-needed humor when she accidentally gave Jadon a hilarious nickname.

36:02

Remembrance Toys: Dino Dave and Jucletus

The significance of tangible remembrance items, like a weighted dinosaur (Dino Dave) and a heartbeat bear (Jucletus), that allow Isla to connect with her "big brothers."

39:18

"This is Our Double Rainbow Child"

Jeff discusses the difficulty of answering "Is this your first?" as a parent of loss, and how he now confidently speaks of Isla as their "double rainbow child."

42:03

A Resource for Fathers of Loss

Jeff explains his motivation for writing his book, Holding Onto the Light: A Father's Journey Through Loss and Healing. He notes the lack of resources for grieving men and how he encapsulated real stories into a fictional narrative to help them feel seen and heard.

46:05

The Defining Moment

The most powerful feedback: a man who hadn't read a book in a decade finally read Jeff's book after losing his son.

48:52

Where to Find the Book and Connect

Jeff shares his book title, where to buy it, and the dedicated email address to build a community of grieving fathers.

Read Jeff's Book:

• Title: Holding Onto the Light: A Father's Journey Through Loss and Healing

• Author: J. S. Loving

• Available: On Amazon (print and Kindle Unlimited).

Connect & Share Your Story:

• Fathers of Loss Email: [email protected] (Jeff's goal is to connect with other fathers and collect stories for a future project).

Instagram: @L-O-V-I-J-E-F (L-O-V-I-J-E-F)

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

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.

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

Melanie, mom to 12-year-old Masen, shares the unexpected path to her son's diagnosis with Homocystinuria (HCU) after a routine eye exam revealed something "off." What followed was months of uncertainty, a rare diagnosis few providers had even heard of, a crash course in low-protein diets and metabolic formulas, and two back-to-back eye surgeries to prevent further damage. With gentleness, honesty, and deep advocacy, Melanie describes how they adjusted as a family, how Masen built resilience, and how finding community changed everything. A story of early detection, parent intuition, and the power of connection.

Rare disease reality: What it feels like to navigate a diagnosis most clinicians have never seen

Caregiver intuition: How a parent's sense that "something isn't right" can spark life-saving action

Practical communication: Age-appropriate ways to explain health changes, procedures & dietary needs

Health equity & systems gaps: When newborn screening misses what should have been caught

Hope forward: The resilience of kids—and the strength families build together

• Early signs Masen showed (or didn't show) before diagnosis

• How a routine eye exam led to life-changing discoveries

• What HCU is, and why newborn screening only catches ~50% of cases

• How metabolic diets work—and why the formula is so hard for kids

• Talking to kids about scary changes in simple, honest language

• Navigating back-to-back eye surgeries

• How parents balance their own needs while supporting their child

• Building resilience without expecting perfection

• The power of community: conferences, meetups, Facebook groups

• Advocating for improved newborn screening for future families

00:00 Meet Melanie & Masen: family intro, life in Vancouver 01:23 Sports, hockey, and life surrounded by nature 01:56 Routine eye exam → the moment everything changed 03:38 The optometrist's concerns & the start of uncertainty 04:01 Google panic, calling providers, needing answers 04:55 Keeping fears private during COVID 07:38 Mother's Day call: the rare diagnosis finally revealed 07:47 What HCU is and why newborn screening misses it 10:45 Treatment basics: low protein & metabolic formula 11:19 Explaining diagnosis to an eight-year-old 13:14 Parenting through fear while staying regulated 14:52 "Eat the prawns in the pantry"—navigating food changes 17:29 Building resilience while validating hard feelings 18:31 Finding community online & through HCU conferences 20:41 Masen meets other kids with HCU 22:33 Advocacy: improving newborn screening across Canada 24:28 Social media vs. real-life progress 24:58 Masen's eye surgeries & long-term vision care 27:46 What parents can request if concerned about HCU 30:22 Trusting your care team & staying curious 30:51 Who Masen is beyond a diagnosis 34:22 Where to learn more about HCU

• "My heart was racing. I knew something was off."

• "Most doctors have never even heard of HCU."

• "The formula tastes terrible, but it keeps him healthy."

• "You can be proud of your child's resilience and still wish they didn't need it."

• "This should have been caught at birth—we want to change that for future kids."

• HCU Network America (Instagram: @hcunetwork_america)

• CANPKU+ (Instagram: @canadian.pku)

Procedure guides, coping plans, journals, and parent resources to help families feel prepared and advocate with confidence.

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

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.

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

Tara Cohen opens up about her son Will's autism diagnosis and how it transformed her family and career. From navigating meltdowns to discovering AAC as a communication lifeline, Tara shares her honest reflections on parenting, resilience, and hope. What began as a search for a medical ID bracelet led to a career at Lauren's Hope—where she now helps other families feel safe and supported. This heartfelt episode reminds caregivers that advocacy grows from love and that even small acts of compassion can make a life-changing difference.

Timestamps

• 00:00 – Introduction

• 03:10 – Early diagnosis and emotions

• 07:45 – Advocacy and ESE Pre-K

• 12:30 – Discovering Lauren's Hope

• 18:40 – Communication with AAC

• 25:15 – Managing epilepsy

• 31:00 – Finding silver linings

• 37:00 – Advice for caregivers

• Lauren's Hope Medical ID Jewelry

• ESE Pre-K (Florida early intervention)

• Temple Grandin (2010 film)

• Children's Mercy Kansas City (neurology and epilepsy care)

Level up your parent toolkit with child life–expert guidance: 👉 Get SupportSpot on the App Store

Want to hear insights from our host, Katie Taylor, Certified Child Life Specialist?

👉Subscribe to Katie's Substack

Interested in being a guest or learning more about the podcast? Email us at [email protected]

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

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.

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

"My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live."

In this episode, TikTok Influencer and Medical Mom Marlee Brandon, a pediatric speech-language pathologist turned full-time mom, shares the whirlwind diagnosis of her 12-month-old son Bain with Type 1 diabetes and severe DKA, the traumatic hospital stay, and the everyday advocacy that followed. Raw, practical, and deeply hopeful.

• Emotional clarity: what a Type 1 diagnosis really feels like in infancy

• Practical advocacy: scripts, choices, and language that help toddlers cope

• System gaps: when even major hospitals say "we've never seen this in a baby"

• Hope forward: raising a confident kid who knows why care matters

• Early signs & ER visit: how "ear infection" symptoms masked T1D in a baby

• DKA in plain language: what "acidic blood" means and how PICU treats it

• The learning cliff: carb ratios, breastfeeding while dosing insulin, and why it's OK not to "get it" on day one

• Toddler coping: give choices, narrate care, build independence

• Rebuilding trust after mistakes: when training/tools aren't perfect

• Finding your people: groups, podcasts, and creators who answer "what now?"

• 00:00 Meet Marlee (pediatric SLP → motherhood)

• 01:40 Why speech therapy & pediatrics

• 03:55 Bain turns one → sudden "ear infection" → nonstop vomiting

• 06:30 Small-town ER: "He has diabetes" (dismantling stereotypes)

• 08:35 Life-flight & PICU: severe DKA, hourly sticks, no food for 48 hrs

• 10:20 Turning the corner: energy returns; the six-hour window

• 11:22 "I don't understand this"—carb ratios, nursing, overwhelm

• 13:05 "We've never seen this in a baby" at a major children's hospital

• 15:23 Tears → handing tasks to partner → first solo shot

• 17:20 The Chick-fil-A moment: necessity builds confidence

• 18:44 Finding community: Facebook groups, YouTube, TikTok

• 19:55 Narrating care for toddlers—SLP tools that build trust & language

• 21:19 Offering choices: stickers, shot sites, pushing the button

• 22:53 Caregiver reality: self-care with very young T1D

• 24:32 Why daycare felt unsafe: syringe mix-ups & trust

• 25:54 Joy check: rocks, crafts, and a kid excited by everything

• 27:56 Best resources for newly diagnosed families

• 29:52 "Diabetes doesn't define your life."

• "Type 1 isn't about weight or diet—my baby was still nursing."

• "They told my husband he probably had six hours to live."

• "I thought I needed nursing school to understand our endo."

• "I won't chase him with a shot. I explain why—insulin keeps you safe."

• "You can be anything and do anything…and have diabetes."

• Support communities

  • Diapers & Diabetes (Facebook group for infants/toddlers with T1D)

  • Juicebox Podcast

• Related Child Life On Call resources

  • Explaining shots, blood draws and vaccines to kids

• SupportSpot App (by Child Life On Call)

  • Procedure guides, coping plans, journals, and parent resources to feel prepared and advocate with confidence

Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms.

Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke.

This episode is an essential listen for any parent navigating a serious pediatric diagnosis, especially those dealing with seizures. Audrey shares her family's ultimate decision to pursue a hemispherectomy after two years of failed medications, and the immediate, miraculous developmental explosion in her son's language and physical abilities post-surgery.

• Trust Your Parental Instinct: If you think something is wrong with your child's movements, something probably is.

• Demand a Specialist: If you suspect Infantile Spasms, go to the ER and demand to speak to a neurologist or epileptologist. Request video EEG monitoring.

• Video & Log Everything: Record videos of suspicious movements and log details (time, duration, what you observed) to help clinicians with diagnosis and treatment planning.

• The Difference Between a Consult and Surgery: A surgical consult is not a surgery. Referring for a pre-surgical workup opens up a new toolbox of solutions and gives you access to a world-renowned team of specialists for a more detailed look at your child's case.

• Drug-Resistant Epilepsy (DRE): Epilepsy is considered DRE if a child has uncontrolled seizures after appropriately failing two seizure medications. This increases the risk of SUDEP (Sudden Unexplained Death due to Epilepsy).

• Decision-Making: Understanding your partner's decision-making style is crucial when navigating complex medical choices.

• Guest: Audrey Vernick, Director of Patient and Family Advocacy at the Pediatric Epilepsy Surgery Alliance.

• Organization: Pediatric Epilepsy Surgery Alliance

• Website: epilepsysurgeryalliance.org.

• Resources: Offers a Parent Support Navigator Program (trained peers), financial aid for travel to a Level Four epilepsy center for pre-surgical workups, webinars, and more.

• Infantile Spasms Resource: Audrey also mentions the Infantile Spasms Action Network for resources on recognizing and acting on infantile spasms.

Time Stamp

Description

Key Information

00:00:43

Critical Advice: Surgery Consult vs. Surgery

Audrey shares the core message that a surgery consult is different than a surgery, and there is no harm in seeking a consultation for any diagnosis.

00:01:54

Bennett's Diagnosis and Surgery

Audrey introduces her son, Bennett (21), who had a stroke in utero, infantile spasms, and ultimately a hemispherectomy.

00:04:50

The Early Months: Colic vs. Seizures

Audrey describes the first five months, where unusual movements and fussiness were initially dismissed as normal reflexes and colic by her pediatrician.

00:12:08

Emergency EEG & Stroke Discovery

The night she called a new neurologist, they were admitted for a 48-hour video EEG monitoring. The next day, an MRI revealed a massive stroke in the right hemisphere.

00:14:50

Infantile Spasms: Recognize the Signs

Audrey, as a leader of the PESA, stresses that Infantile Spasms is a medical emergency. She describes the signs: head drop/nod, flexing, and subtle movements that happen in clusters.

00:17:10

Advocacy: How to Get Help

Advice for parents: Take videos, take logs, and at the ER, demand to see a neurologist or epileptologist.

00:22:15

The Surgical Seed is Planted

Bennett's first neurologist mentioned a hemispherectomy when he was only five months old, which her husband immediately dismissed, but planted a "seed" for future research.

00:24:09

Choosing Surgery and the "Elmo Song" Miracle

The family begged for surgery and two days later Bennett had his hemispherectomy. Two weeks later on the plane home, Bennett, whose speech was suppressed, sang the entire Elmo song, signaling the impact the seizures had been having.

00:30:52

Defining Drug-Resistant Epilepsy (DRE)

DRE is when a child has seizures after failing two appropriately dosed medications. DRE is harmful to development and carries the highest risk of SUDEP (Sudden Unexplained Death due to Epilepsy).

00:42:55

Final Message: Trust Yourself

Audrey's final, powerful advice to parents: You are the expert in your own child; trust yourself and use that expertise as a tool on your journey.

If you found value in this conversation, please check out host Katie Taylor's work and community resources:

• Join Katie Taylor's Substack for in-depth insights and articles: Join here

• Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out

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.

"The excitement that the kids feel when they are seeing you... and they know today's session with Ms. Luba and they can't wait to see you." - Luba Kaplan

When a child enters the medical system, parents often meet many specialists beyond doctors and nurses, including Speech-Language Pathologists (SLP). These professionals are vital members of the healthcare team, doing more than just helping with speech. SLPs, as Luba Kaplan explains, also explains how they look at every area of the child's development to ensure children are being fully supported.

In this episode, we introduce Luba Kaplan, a passionate SLP, Oral Myofunction Therapist, and mother of three who is the visionary behind Kidology. Celebrating 10 years in private practice, Luba has made it her mission to bridge gaps in access to therapy. She even created the Therapy Bus—a half-size school bus that travels to families who can't leave home or have transportation issues.

Luba Kaplan is a Speech-Language Pathologist and Oral Myofunction Therapist. As the founder and owner of Kidology, she has built a practice that offers a multidisciplinary, team approach to therapy, including Speech, Occupational, Physical, and Behavioral services. Luba is driven by a deep passion for helping families achieve change and is dedicated to cancer research in honor of her mother, Angela, who worked in oncology research for 25 years.

Luba on Social Media:

• TikTok, Instagram, Facebook: @KidologyInc (KIDOLOGYINC)

• YouTube Channel: Find Kidology's content on YouTube

Luba shares crucial advice for working effectively with a Speech-Language Pathologist:

• Build Strong Rapport: Share everything that is going on in your child's life, even seemingly small struggles like a supermarket meltdown. The more the provider knows, the more they can help.

• Look for a Global Approach: Seek a provider who utilizes a multidisciplinary, team approach and is willing to screen for or refer to other needed services (OT, PT, behavioral services).

• Early Intervention is Key: Don't wait or assume your child will simply "grow out of it.". Addressing issues sooner, not later, can put your child ahead.

• Ensure Family Alignment: Everyone in the child's life (parents, grandparents, etc.) must be on the same page with the therapy goals to ensure the proper foundation for progress. Otherwise, therapy won't work.

• Trust the Independent Session: While parental presence is key in a hospital setting, giving your child space to learn independently in a non-threatening environment allows them to develop their own voice and thrive with the therapist.

• Stay Committed: Stick with the therapy program even when you think your child is "okay". Commitment is essential for your child to be better off post-program.

• 00:00: Introduction to the role of a Speech-Language Pathologist.

• 01:00: Introducing Luba Kaplan, the visionary behind Kidology and the innovative Therapy Bus.

• 02:30: Luba's passion for change and her personal connection to cancer research.

• 06:00: Tips for parents on finding an impactful provider and the necessity of sharing full history.

• 09:30: Navigating the system and the need for a team approach in therapy.

• 11:00: Strategies for carryover at home: portals, homework, and getting the whole family on the same page.

• 15:45: The difference between presence in an acute trauma setting (hospital) vs. a non-threatening environment (therapy clinic).

• 19:30: The growth of Kidology: from one suburban office to two central clinics with play gyms.

• 22:00: Final takeaways: the importance of commitment and not delaying intervention.

Child life specialists are experts who help families navigate the overwhelming and confusing world of healthcare. Now, you can access these valuable tools and resources outside of the hospital setting through the SupportSpot App.

Parents, get empowered! The SupportSpot App provides tools to:

• Understand and explain medical procedures to your child.

• Help your child feel less anxious.

• Feel informed and confident in your child's healthcare journey

Join Katie Taylor's Substack for in-depth insights and articles: Join here

Child Life Specialists- join the circle. There is a seat here for you to recieve support, professional development, and access to clinical supervision.

🌟 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 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 provide