Parent Advocacy Episodes

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 strat...

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 ...

"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 i...

"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 (C...

"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 s...

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 ...

Today's guest is Taylor Happley, a mom of a child with CHARGE syndrome. "We need to figure out why and how to help these kids get the medical attention that they need." In today's episode, Katie Taylor had an important conversation with Taylor Happley, whose son has CHARGE syndrome. Taylor's prenatal journey was filled with miscommunication and emotional challenges. Taylor's story of learning about her son's diagnosis of CHARGE Syndrome in less-than-ideal circumstances underscores the need for ...

"Sometimes it's really therapeutic though to remember all that you have gone through because I feel like there are times when we look at each other and I'm like how did we get here?" -Tayler Ransome We're grateful for our sponsor for this episode, Nestle Health Science, and are thrilled to share their incredible MyTubeFeeding.com/ChildLifeOnCall website, your go-to online resource for valuable information and support. In this episode, Katie Taylor welcomes the Ransome family, known to many as t...

"Having a medically complex child, it's like everything's fine. And then, you know, we have a morning where we've thrown up a lot or our blood pressure is too low, and it just doesn't look good. You just never know what you're going to get." - Lyndsey, Episode 211 In this deeply moving episode, we are joined by Lyndsey, who shares the compelling journey of her son James's battle with post-urethral valves before birth, leading to kidney issues and eventually a kidney transplant. Through her narr...

"Love is the most powerful force in the universe, and the invisible string is a testament to the connections that bind us all." - Patrice Karst In this special Child Life Month episode, Katie Taylor sits down with Patrice Karst, the beloved author of "The Invisible String" and several other impactful books. They explore Patrice's journey from personal challenges to becoming a source of comfort and connection for families worldwide. This conversation delves into the power of storytelling in addr...

In this profound episode, we join Katie Taylor as she delves into the inspiring journey of a military family navigating pediatric healthcare for their two medically complex children. Through the voice of the remarkable mother, Kat, we explore the unique challenges and triumphs of securing continuous, specialized care amidst the frequent relocations and complexities inherent to military life. Kat shares her experiences with advocacy, the importance of resilience, and the deep bonds forged through...

In this episode, we're honored to have Jessica Correnti, a certified child life specialist and a bereaved mother, share her profound insights on grief. Jessica's dual perspective offers a rich understanding of the multifaceted nature of grief beyond the loss of a loved one. She discusses her personal journey, the importance of recognizing and naming grief in children, and how this awareness can empower kids to navigate their emotions. Key Highlights: Jessica's background as a child life specia...

"Millie's journey has taken me to the end of myself, but it's been the most beautiful beginning of understanding humanness and how to be compassionate and how to really be kind to other people and take notice that the story that is their life may not be what you see." How does trauma affect the whole family, and how can we show compassion to adults with special needs? One thing I have learned about throughout my career as a child life specialist and have heard from many families on this podcast...

In this episode of Child Life On Call, we are honored to host Jennifer Canvasser, the driving force behind the NEC Society, as she shares her poignant journey and advocacy for Necrotizing Enterocolitis (NEC) awareness in the NICU. Join us as Jennifer unveils her personal story and how she transformed her loss into a powerful force for supporting families grappling with NEC. Gain valuable insights into the pivotal role of human milk and early intervention in mitigating the risk of NEC, and the vi...

My special guest is Rhandyl Vinyard, Deonna Wade Rhandyl Vinyard and Deonna Wade are two phenomenal mothers from Texas, each raising disabled children. Drawn together by shared circumstances, their friendship continues to strengthen others walking a similar path. Rhandyl, a physical therapist assistant, is the mother to Remy, who has required intensive medical care from an early age. Her background in healthcare provides a unique perspective into the challenges of raising a disabled child. Deon...

Do you want to become a confident advocate for your child's medical needs? Are you searching for a solution to navigate the complex world of medical care for children with conditions? Join us as we welcome Kayleigh Koehler, a Child Life Specialist who has transformed into a medical parent. She will be sharing valuable insights and strategies on how you can achieve the ultimate goal of becoming a knowledgeable and effective advocate for your child's medical journey. Get ready to embark on a trans...

Welcome to the ChildLife On Call podcast, where I, Katie Taylor, sit down with Kayleigh Koehler, a certified child life specialist, to discuss her journey as a medical mom and a child life specialist in a cardiac ICU. Join us as we dive into Kayleigh's personal story, from her gut intuition during pregnancy to her son's diagnosis, and the emotional challenges she faced along the way. We explore the importance of trusting gut intuition, the complexities of navigating the healthcare system as a pa...

A mother fights against time and navigates the emotional rollercoaster of her daughter's lung transplant, as she strives to fulfill her promise while facing the heart-wrenching challenges of the organ transplant process in a race for survival. In this episode, you will be able to: Uncover the intricate realities of pediatric lung transplants and management of exceptional medical conditions. Relate to the heart-rending emotional challenges families wrestle with during the organ transplant proc...

Empowering NICU Parents: Kimberly Reyes Shares Her Advocacy Journey If you're feeling helpless and overwhelmed in your NICU journey, despite trying to be involved and advocate for your baby, then you are not alone! It can be frustrating when your requests and concerns are not heard or acted upon by healthcare providers, and you may feel like you have no control over your baby's care. You may be spending countless hours researching and asking questions, but still feel like you're not making prog...

Do you want to feel empowered and confident in advocating for your child's healthcare needs? Are you searching for a solution that will help you effectively speak up for your child in healthcare settings? In this episode, I will be sharing the key to unlocking your advocacy potential, enabling you to achieve the outcome you desire - ensuring the best possible care for your child. By exploring the role of child life specialists, together we will explore how child life provides you with the knowl...

Dr. Maureen Michele brings such a valuable perspective to the podcast with her experience being a pediatrician and mother to a medically complex child. Maureen shares with us how to become an advocate and what inspired her to write a book called, 'Reclaiming your Life.' Her book is meant to guide parents who have a child with a medical diagnosis. Maureen shares a snapshot of her book through a thoughtful conversation with Katie. [4:00] Introductions [6;00] Motherhood and Medical School [7:02]...

On this week's episode, Katie and Co-Host Serheen Noor Ali from Hello Sleuth interview Dr. Kelly Fradin about building trusted relationships with your child's pediatrician. Dr. Fradin shines a light on parent and patient experiences through being a physician in public health and in private practice. She touches on ways to have productive conversations with your child's pediatrician to create a lasting and effective relationship. [4:00] Introductions [6:45] Barriers her patients were experienci...

Katie interviews Emma Springer, mother to Sage who was born with Trisomy 18. Emma shares her journey to parenthood and how they learned of Sage's diagnosis. Prior to Sage being born, Emma was a pediatric nurse. Emma shares the struggles she went through in Sage's first few months to find care options. She opens up about how being on social media can be so empowering but also shares some of the challenges go along with it. Through Emma, you will get to know the joy that Sage carries with her each...

On todays episode of the podcast, Katie along with co-host Mijha Godfrey from Jambo Books, interview Kayla Gunderson, who's daughter was diagnosed with Ollier's disease. You will get to hear how Kayla navigated her daughter's diagnosis just weeks after giving birth to her son and her valuable perspective as a nurse and former Child Life Specialist. We talk about navigating grief, the support of her spouse and loved ones and what Claire has taught Kayla along this journey. [4:47] Mijha shares ab...