Episode 80 | Bonnie’s Story - A son with Type 1 Diabetes
Release Date: 08/11/2021
228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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 (CF). Katie and Nikki discuss Nikki’s journey navigating her daughter Taylor's...
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227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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 story highlights the importance of persistence, building a support network, and staying organized....
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226. Moms on a Mission: Raising Pediatric Feeding Disorder Awareness with Jaclyn & Athena from Feeding Matters
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"Combining my personal experiences as a mom with my professional role has given me a unique perspective on the challenges families face and the solutions they need." - Jaclyn Pederson In this insightful episode, host Katie Taylor speaks with Jaclyn Pederson, CEO of Feeding Matters and mother, and Athena Flicek, a dedicated mother of a child with feeding difficulties, about the complexities of pediatric feeding disorders. Jaclyn and Athena share their personal and professional experiences, emphasizing the importance of early intervention, advocacy, and comprehensive resources. They...
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225: Embracing Alopecia: A Mother’s Journey of Advocacy, Instincts, and Resilience-Lexi's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"I feel like I owe it to him to explore other avenues. Acceptance doesn’t mean giving up; it means continuing to learn and adapt."- Lexi In this episode of Child Life On Call, Katie Taylor speaks with Lexi, a devoted mother of two, about her family's journey with alopecia universalis. Lexi shares the emotional challenges and triumphs of supporting her three-year-old son, Penn, who was diagnosed with this rare condition. Through sharing her story, Lexi highlights the power of parental instincts, blending Western and Eastern medicine, and advocating for her child's unique...
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224: A son with Burkitt lymphoma at 8 year's old - Reina's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"My immediate thought was I'm going to lose my son. That was where my head went immediately." - Reina Introduction In this episode of Child Life On Call, Katie Taylor talks with Reina, a devoted mother from Nashville, Tennessee. Reina shares her heartfelt journey of caring for her son Elliott, diagnosed with Burkitt lymphoma at eight years old. She discusses the emotional and practical challenges faced during Elliott's treatment, the importance of advocating for her child's needs, and the support systems that played a crucial role in their journey. Reina’s story highlights resilience, the...
info_outline![223: [6 minutes] Big News: The Child Life On Call App is Now SupportSpot! show art](https://assets.libsyn.com/item/31831742?height=50&width=50)
223: [6 minutes] Big News: The Child Life On Call App is Now SupportSpot!
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
Episode Description: In this special impromptu episode, Katie Taylor, Certified Child Life Specialist and CEO of Child Life On Call, shares some exciting news! We're rebranding our beloved Child Life On Call app to SupportSpot. Tune in to hear why we made this change and what it means for you and your family. Plus, get a sneak peek into the new features and benefits you can expect from SupportSpot. This is an announcement you won’t want to miss! Show Notes: [00:00] Introduction Welcome from Katie Taylor Brief overview of the exciting announcement [00:30] Reflecting on the Journey ...
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222: A son born at 25 weeks after loss, NICU NP mom and podcaster: Ashley O'Neil
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
In this episode host Katie Taylor sits down with Ashley O’Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay. Listen to hear how she balanced work, advocating for her son’s needs, coping with personal loss, as well as providing invaluable support and resources to other families in similar situations. "The hardest part isn't being in the NICU; it's the real advocating that starts after discharge." - Ashley O'Neil Key Insights: Early Challenges: Ashley shares...
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221:Collaborative care between a Child Life Specialist and Social Worker with Annie Gunning and Haley Thomas at Hope for HIE
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
On today’s episode, Katie had the privilege of speaking with , a Certified Child Life Specialist and Grief Counselor, and , a Licensed Master Social Worker, on their collaborative efforts to support families at . Annie and Haley tailor their support to each family's unique needs, dedicating time to assess and implement the most effective strategies. Annie and Haley are setting new standards in providing exceptional support to the families they serve. Key Takeaways It’s important to meet families where they are. Finding ways to help prepare children...
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220: Know EXACTLY When Rounds is Happening with Q-Rounds with Dr. Michael Pitt
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
Episode Description: Join Katie Taylor, CCLS in this episode as she talks with the founder of and a compassionate pediatrician (and magician!) dedicated to enhancing doctor-patient communication. As a child life specialist, Katie understands how crucial it is for families to not only be present during rounds but also to feel empowered and actively engaged in discussing the care plan with their team. When she learned about Q-Rounds, she knew she had to share this innovative approach with her parent and child life community. shares his insights on how healthcare professionals can better...
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219: 60 Years Later: Reflecting on a Daughter with Ichthyosis
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
“We, we weren't letting those people push us around because, believe it or not, living with us 24 hours a day, we knew more than some of the doctors.” - Skip Vilas In this heartfelt episode of the Child Life On Call podcast, host and CCLS Katie Taylor interviews Deb Vilas, an expert child life specialist, alongside her parents, Skip and Joyce Vilas. They share their story spanning over 60 years, recounting the challenges and triumphs of raising Deb, who was born with ichthyosis, a rare skin condition. The episode dives deep into the emotional and medical journey of Deb's early years, the...
info_outlineThis episode is sponsored by SmileMakers. Use code ONCALL20 for 20% off your order of smile making stickers, toys, patient supplies, and more!
Meet Bonnie, her husband and her three adult children. Bonnie calls herself "the replacement kid" after her parents lost their son to Type 1 Diabetes. Because of their history, Bonnie was hyper aware of the signs and symptoms and ended up diagnosing her own son at 5 years old with a urine test strip on the bathroom floor of their own home.
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