Parent Advocacy Episodes

Katie along with Co-host Cortney Given, host of the podcast Mindset for Medical Moms , interviews Dana who had micro-preemie twins at home. She bravely shares her story and how she and her husband acted quickly with the unexpected home birth. Dana shares how she navigated the long NICU stay and the moments to come afterward. You will get a glimpse into their life today and what it looks like to manage their medical care. Dana's journey to advocacy and letting others into your life during challen...

Katie has a co-host, Serheen Noor Ali from Hello Sleuth on today's episode where we hear Jodi's story of developing HELLP Syndrome and having a premature birth. Jodi walks us through her birth story along with those first moments meeting her daughter. She speaks to the joy we find in the unexpected and will leave you inspired to embrace where you are today. You will get to know Jodi's heart behind the creation of Fllrish. [5:40] Full circle of relationships [6:07] The crash course of becoming ...

On today's episode, Katie shares with our listeners how Grandparents can support their kids and grandkids during an illness or diagnosis. During the holidays with lots of family time, this topic came to mind. Grandparents are an integral part of the family, whether they live near or far. This episode gives practical ways Grandparents can support their kids and grandkids. [1:58] Hard conversations during the holidays [2:17] How can Grandparents give support [4:05] When your child is hurting. y...

As a NICU Dad, Alex Zavala share his perspective and critical role as a father on today's episode of the podcast. Alex shares so many moments along his journey that impacted him and gives advice to fellow NICU dads out there. This episode is for you too moms and partners-- you will learn more about the dad perspective and how to support your spouse. [3:32] Alex shares about his family [7:39] Giving his wife daily injections [9:49] Went to the store to register for baby gifts [10:41] Alex's w...

On today's episode of the podcast we hear from Lauren about her son's diagnosis of Aicardi-Goutieres Syndrome (AGS.) She shares how her uneventful pregnancy followed by a NICU stay and numerous hospital visits with unanswered questions eventually resulted in a diagnosis. Lauren shares how coaching changed her life and how she is now a life coach for mothers of children with disabilities. [4:32] How ranch living was a dream come true [5:20] After an uneventful pregnancy, Lauren gives birth [7:...

March is Child Life month, and I wanted to feature some amazing organizations that are doing so much to support children and families in crisis. A few weeks back, I had the opportunity to interview an expert in the field of Child Life about the impact of disasters on children and families (episode 105). Child Life Disaster Relief is an organization that empowers and supports children and families in crisis by integrating Child Life professional services into disaster-impacted communities. Learn ...

March is Child Life month, and I wanted to feature some amazing organizations that are doing so much to support children and families in crisis. A few weeks back, I had the opportunity to interview an expert in the field of Child Life about the impact of disasters on children and families (episode 105). Child Life Disaster Relief is an organization that empowers and supports children and families in crisis by integrating Child Life professional services into disaster-impacted communities. Learn ...

Today I get to introduce you to Moira, the host of Surviving the Waiting Room - a podcast based on her experiences from learning how to be an advocate for her teenage children as they started to figure out their health issues. Although they have diagnoses now, there are no exact tests for Celiac Disease or migraines, so Moira has gotten really good at finding people to help give her information. She has a lot of value to share about getting answers for your kids as well as about relating to teen...

The Dad's Perspective: A Son with a Rare Genetic Disease So there is this rock star in the podcast world, and her name is Effie Parks. She hosts a podcast called Once Upon a Gene, inspired by her son who has a rare genetic disease. Effie really focuses on the idea that disability is diversity, and that is an idea I try to put into practice professionally as well as personally. Today, we are going to hear from Effie's husband. If you haven't yet, check out Effie's story. Then head back here to l...

For today's 12 minute talk, I'm interviewing Dr. Brittany Ferri. She is an occupational therapist, and she has a passion for talking with kids about disabilities. Brittany talks about her program, Social Fly, a social and motor skills curriculum that educates kids ages 5-12 about disabilities. This program is great for parents, teachers, child life specialists, and anyone else who is interested in learning how to talk to children about these topics. In this episode, we talk about… [1:10] Branchi...

It's another day in September, which means we are going to be recognizing National Sickle Cell Awareness Month. Sickle Cell Disease is an inherited blood disorder in which blood cells may become sickle shaped and harden, causing a lot of pain. On this episode, I am bringing back Lisa's Story: A Daughter with Sickle Cell Disease. I want to bring to light sicklecelldisease.org's theme for 2021, which is Sickle Cell Matters. This impactful disease can permeate every part of a person's life, from de...

September is Childhood Cancer Awareness Month. Over the last four-and-a-half years, I have had the opportunity and honor to interview many parents who are a part of a club that they didn't ask to be in. There is a common bond when you can look at another parent and say you have been through exactly what they are going through. I wanted to go through some of the amazing stories we have been able to share, and give you some of the clips and audio tips that we have gotten from so many families on t...

"It's been rough. It's like your heart is in two different places." Katie, Certified Child Life Specialist interviews Madeline, a mom from Utah that shares her son's experience with having a rare form of skeletal dysplasia and how her daughter has dealt with their journey. Madeline is host of The Rare Life podcast which was inspired by her son, Kimball after his arrival into the world. In this episode, Madeline walks us through what it's been like for her daughter. Madeline is a fierce, inspi...

Katie, Certified Child Life Specialist interviews Shay Shull from Mix & Match Mama. Shay is a cookbook author, lifestyle blogger, travel agency owner, wife and mama who loves making every day special for my family. Shay is mom to four kids and she and her husband live in McKinney, Texas. Today, we talk about her daughter Ashby and how their family copes with Klippel-Trenaunay syndrome (KTS). Ashby is one of her adopted children from China and has had over 22 surgeries since joining their family....

Katie, Certified Child Life Specialist interviews Amanda, mom to two micro preemie twins born at 23 weeks. Amanda and her husband met at Baylor University and had a normal pregnancy and delivery with their first son. Their second go at getting pregnant was not as easy and included fertility treatments, bed rest and an traumatic, emergent c-section at 23 weeks. She describes how: *Her faith was instrumental for getting through their experience *Detailed preparation from NICU team before hand help...

Katie Taylor, Certified Child Life Specialist interviews Dana Burnett, Certified Child Life Specialist for the Bougier City, Louisiana school district. Dana talks about her child life journey up until this point and how she has transitioned to supporting K-8th grade students through 1:1 interventions. She focuses on serving students with chronic illness, children facing illness and loss, and children with parents who have an illness. Follow along with Dana on Instagram @takingchildlifetoschool...

Katie talks to two Certified Child Life Specialists and military spouses, Savannah Self and Lisa McWhorter about ways to support military families. From long waits in military hospitals to helping children navigate the deployment of parents, child life specialists have an important role in helping families cope. A lack of consistency in providers due to moves across the country, and the world, is one of the biggest healthcare challenges military families face. Savannah and Lisa share tips and ...

In this episode, Katie interviews Lisa, mom to Riley. Sweet Riley is a spunky and sweet two-year-old living with Sickle Cell Anemia. Lisa talks about how they knew it would be a possibility while she was pregnant due to the trait being passed down, but they had hoped and prayed to avoid it like they did with their first born, a son who is now nine years old. She says that she can handle the frequent trips to the ER, but watching her daughter in pain is a feeling no mother should have to experi...

Meet Ashlyn, momma to her sweet and smiley boy, Myles. Myles was born with a rare disease that effects his limbs and other parts of his body. These symptoms are known as VACTERL association. As a self-proclaimed "planner," Ashlyn talks about the difficulties of having so many unknowns during her pregnancy and how she coped... and is coping... with their journey. She attributes her strong partnership with her husband and prayer as key components to getting through difficult times. If you'd like...

Meet Maura Senneff, mom to sweet Ryan. Ryan is a thriving 8-year-old boy who has Down syndrome. The amazing advocate by his side, his momma Maura, describes that "zooming out" and looking at things from wide lens helped them turn Ryan's health around. She talks about small changes and the "no limits" attitude their family lives by. If you'd like to follow along with Maura Senneff and her son, Ryan, you can follow their Instagram @Maurasenneff. Guest: Maura Senneff, Released: Aug 12, 2020 Whe...

Katie interviews Meg and Jess, two certified child life specialists who also have dual certifications in rec therapy and nursing! These two ladies host a podcast called Don't Worry Bout My Hair and they are your @friendswithfros! We tackle tough questions that are way overdue in the field of child life: Have you received any feedback or comments from black families regarding challenges due to limited diversity of the hospital staff? What's been the most challenging thing about being a black wom...

In this episode, Katie, Certified Child Life Specialist, interviews Jessica, mom to two special needs children and one of which who is on the Autism spectrum. Jessica is also an adult clinical neuropsychologist and also hosts a podcast with her husband called, Thriving in the Midst of Chaos. Jessica discusses their journey to get a diagnosis, how they are coping with virtual therapy during covid19, and provides great resources and information about the Autism community. If you'd like to share ...

Elizabeth, mom to three girls, shares with us her experience of having a daughter with cancer. In just an hour and a half, her 9-year-old daughter went from a pediatricians office to a cancer ward. Elizabeth discusses her Elizabeth's "out of body" experience, how she was able to identify the "gifts" in each of her girls, and offers wisdom and compassion to others going through similar experiences. We also talk about how the global pandemic of Covid19 and subsequent quarantine has impacted their...