Katie talks to Dominique, mom to Mila, who shares her birth story and NICU experience. Born at just 1lb 11ounces at 26 weeks old, Mila has made tremendous progress thanks to proactive parents, therapies and her momma's un conditional love. 

Dominique talks about the fear that comes with being an African American pregnant woman in the healthcare setting as well as the impact that sharing her story and community has had on her ability to cope with their journey.

You can follow Dominique Pompey through her blog www.dominiquepompey.com on Instagram and YouTube @dominiquepompey. 

Child Life On Call | Instagram | Facebook | Twitter

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 more at www.cldisasterrelief.org.

Today I’m talking with Sehreen, who has so much wisdom to share. She is doing big things for the world of children’s health, but she is also a mom whose daughter has had some medical challenges. I’m excited for her to share her experiences with you in this episode.

In this episode, we talk about…

[2:25] Sehreen’s background and family

[4:11] Concerns with her daughter missing developmental milestones

[9:03] Seeking answers about her daughter’s development

[12:48] Advocating for your child in medical situations

[15:00] How Sehreen coped while waiting for a diagnosis for her daughter

[18:18] How Sehreen’s daughter coped during her time in the hospital

[24:25] The role of child life specialists

[26:02] What helps Sehreen to recharge 

[27:31] The difficulties with having a child with medical needs

[29:02] What Sehreen’s daughters have taught her

[31:52] Sehreen’s children’s health startup (Sleuth)

CONNECT WITH SEHREEN

Website

Instagram

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Katie, Certified Child Life Specialist talks with Lauren Holley, CCLS and Professor answers the question and discusses the topic: Should Young Kids Go To Funerals?

We talk about:

+How to assess whether or not your child is ready to attend the funeral

+Concrete language to prepare a young child for a funeral

+Ways to support your child during and after the funeral

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

Meredith, mom to now 8-year-old Lola, shares her experience with her daughter who was diagnosed with Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) shortly after she was three-years-old. However, their story didn't begin there.  

As an adventure, Meredith talks about how she and her husband moved to Costa Rica from Indiana after they were married. Lola was born there and shortly after birth, her mom began having questions about her health and development. From infantile spasms to possible lissencephaly (smoothing of the brain), they searched for answers and were eventually led to the NR2F1 gene mutation which explained many of Lola's symptoms.

Meredith gets real in our conversation about the ups and downs associated with having a child who is legally blind and has developmental delays. She talks about her own struggles and how she finds balance being a working mom. 

If you would like to connect with Meredith, you can send her an email or find her on Instagram and Facebook at Say Hola Lola. 

Please rate and review this podcast on iTunes so that it makes it easier for other parents and listeners to find us.

Child Life On Call | Instagram | Facebook | Twitter

April is Child Abuse awareness month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse.

Today’s guest expert is my mother, Jane Donovan, who is a child abuse advocate. She is here to provide tangible ways to make this concept less scary and to empower kids and parents. We want to leave you feeling confident about how to teach kids about child abuse.

In this episode, we talk about…

[3:50] Jane's background and her passion for advocacy

[8:48] Using puppets to talk to kids about child abuse

[15:04] Good touches versus confusing touches

[15:54] Empowering children to tell an adult about abuse

[17:31] Respecting personal space

[21:08] Feedback about the puppet program

[22:35] Reporting child abuse

[25:42] Engaging in conversations with kids about child abuse

[31:06] A safety sheet to create with your children

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Dr. Korie Leigh is our guest today on the podcast, sharing with our listeners what grief feels like. Dr. Leigh is a  Child Life Specialist, Thanatologist, Associate Professor, and most recently a Children's Book Author. Katie and Dr. Leigh have an essential conversation surrounding grief and what it feels like and how her new book, "What does grief feel like?" can guide parents and professionals to navigate the questions that come with talking about grief with children.

[3:55] Dr. Leigh introduces herself

[5:00] Sharing her why

[6:24] Growth in grief

[7:49] Dr. Leigh's new book launched

[9:33] Helping children navigating grief

[11:02] Reflecting on the grief process

[12:47] Conversations about grief take place over time

[13:42] How grief is felt in the body

[15:51] Asking for feedback and input to expose pre-teens and teens

[17:43] Dr. Leigh's new book

Connect with Korie

Bookshop link: https://bookshop.org/a/85078/9781631987069

Publisher link -the 20% off code is A23LEIGH

https://www.teachercreatedmaterials.com/free-spirit-publishing/p/what-does-grief-feel-like/899857/

Amazon link https://www.amazon.com/What-Does-Grief-Feel-Like/dp/1631987062

My website: www.korieleighphd.com

Instagram: https://www.instagram.com/drkorieleigh/

Tiktok: https://www.tiktok.com/@drkorieleigh

Twitter: https://twitter.com/drkorieleigh

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

At just 25 weeks pregnant, Courtney was diagnosed with pre-eclampsia and was hospitalized. Just 5 days later and after a terrifying emergent c-section, she would meet her daughter, McKenzie. In this episode Courtney talks about her entire experience from her own hospitalization and her daughter's 5-month stay in the NICU, and eventually going home. She talks about the balance of being a single, working mom and the struggles that come along with having a child with medical needs. Courtney will leave you feeling inspired and in utter awe of how she loves and supports her daughter. 

Courtney recommends Preemies - Second Edition: The Essential Guide for Parents of Premature BabiesHelping Your Child with Extreme Picky Eating: A Step-by-Step Guide for Overcoming Selective Eating, Food Aversion, and Feeding . If you'd like to connect with Courtney you can find her on Facebook, Instagram, Twitter or on her blog.

Thank you to Laura Morsman Photography for the beautiful pictures of Courtney and McKenzie. 

Follow along with this podcast on Facebook, Instagram and Twitter.

I'm SO excited to share a new podcast series we are starting at Child Life On Call!

[You can watch this via a screencast on YouTube here]

Child Life 101 is a new 10-week podcast series dedicated to all things related to all things child life specialists and the important role they play in the lives of children and families.

This series was born from some of the questions I've gotten over the past 6 (almost 7!) years that we've been producing Child Life On Call.

Each week we will cover a new topic:

1. Child Life 101: What is Child Life
2. Child Life 101: Kids in Pain and Procedure Support
3. Child Life 101: Difficult Conversations with Kids
4. Child Life 101: Preparing Kids for Procedures
5. Child Life 101: Empowering Parents
6. Child Life 101: Digital Resources in Hospitals
7. Child Life 101: Child Life Entrepreneurship & Private Practice
8. Child Life 101: Family-Centered Care
9. Child Life 101: Child Life Tips
10. Child Life 101: How to Support Child Life Programs

I promise to keep it awkward (like always) and fumble over my words in the most Katie-way possible.

Join us as we explore topics such as pain management, coping strategies, therapeutic play, and much more. 

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you. 

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Follow us on Instagram

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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 the difficulties of having a baby born at 25 weeks and the emotional turmoil of seeing healthy babies at work while her own child struggled in the NICU.

Advocacy: Emphasizing the importance of advocating for her child, Ashley highlights how she meticulously kept records, attended rounds, and communicated her son's needs to the medical staff.

Support Systems: The significance of community support and online groups played a crucial role in her journey.

Resilience: Despite being told what her son might not achieve, Ashley remained steadfast in her belief in his potential, advocating for her son, and celebrating every milestone and victory.

Navigating Systems: The real battle often begins after leaving the NICU, dealing with insurance, medical equipment, and ensuring her child receives the necessary care and resources.

Resources and Tips

Ronald McDonald House: Provides essential housing and support for families with hospitalized children. 

Insurance Navigation: Practical advice on dealing with insurance companies and securing 

Kids Grief Support:  Find information and resources to support grieving children.

When parents feel empowered, everyone wins – kids thrive and the care team excels!

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

Answering parent questions in a 12 minute talk.

Katie, Certified Child Life Specialist talks with Lauren Holley, CCLS and Professor discusses the topic: How to Talk to Kids About Death.

We talk about:

+How to concretely explain death to kids at all stages of development

+What emotional responses kids may display after the conversation

+Ways to keep the conversation “ongoing” to help kids feel supported

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

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On today’s episode of the podcast, we will hear from Ryan Judd, Music Therapist and creator of Cool Koala. In this episode, Ryan places an emphasis on helping our children develop gratitude, compassion and learning how to cope with our worries. He shares how music helps children feel relaxed and how having the practice of guided meditation can carry into creating healthy habits for children as they move through the different stages of life and into adulthood. Ryan shares vital information on how to teach these practices to children in the hospital and in our everyday routines at home.

[3:30]-Ryan shares how he started working with kids

[4:20] Discovering Music Therapy as a profession

[5:56] Ryan shares about his family

[6:36]Ryan’s music on the App

[7:24] Ryan shares about Cool Koala and when to do meditation 

[9:00 ]Alexa Skill integration and Cool Koala Collab 

[10:05] How music calms the nervous system 

[11:05] Letting go of worries

[12:18] Sleep is the foundation of health

[15:00]Worry Box and Gratitude Garden 

CONNECT WITH RYAN:

Instagram

Facebook

You Tube

Cool Koala Facebook Page

LinkedIn

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifeoncall.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know

Thank you to the sponsor of today's podcast: Begin Health

In this episode of the Child Life On Call Podcast, hosts Katie Taylor and Emily Martinec, both certified child life specialists, discuss strategies for preparing, supporting, and responding to children during flu shots.

The conversation extends to other medical experiences, offering developmentally appropriate ways to engage children. They emphasize collaboration with medical professionals, highlight coping techniques, and provide resources like the Support Spot app and a digital flu shot preparation course for parents. The focus is on empowering parents and creating a positive healthcare experience for children.

00:00 Introduction to Flu Shot Preparation

01:10 Empowering Parents and Respecting Medical Professionals

03:05 Understanding the Emotional Impact of Shots

04:08 Practical Tips for Flu Shot Day

09:31 Pain Management Techniques

21:07 Post-Shot Processing and Recovery

24:37 Final Thoughts and Encouragement

When parents feel empowered, everyone wins – kids thrive and the care team excels!

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

Katie, Certified Child Life Specialist talks with Jessica Patay, Founder and Executive Director of We Are Brave Together.

Her own story as a mom of a child with special needs began in 2003 when her second son, Ryan, was born and diagnosed with a rare, genetic disorder, called Prader-Willi syndrome. Within two days of receiving this diagnosis, she received a phone call from a mentor mom from the Prader-Willi California Foundation.  Immediately she felt relief and comfort knowing she was NOT ALONE. 

In this episode, we talk about:

1. How hearing from medical staff, “I’ve never heard of this before” is NOT helpful
2. What Jessica wished she would have known 18 years ago about where she is today
3. How community has shaped her ability to cope and thrive

Learn more about Jessica’s organization and make sure to follow her on Instagram and Facebook. 

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

On this episode, Savannah shares what it means to have wreck-less hope. Through her traumatic birth, having micro preemie twins and receiving a cerebral palsy diagnosis for one of the twins, Savanah explains how her twins have changed her outlook on life and how she cherishes the little things life has to offer. Savannah opens up about maternal mental health and how it affected her. It is her mission to help other moms experiencing a traumatic brith feel not alone through the gift of artwork and support.

[4:05] Introductions

[4:55] Stories of hope

[6:47] History of pre-term labor

[7:29] Going into labor at 24 weeks gestation

[8:34] Journaling became therapeutic

[11:32]  Finding out both boys had brain bleeds

[13:00] Cerebral Palsy and Hydrocephalus diagnosis

[14:45] Leaning on each other and family and friends

[17:00] The answers to the hard questions

[20:00] The shift of worry

[22:30] Charm and Wit of Lochlan

[25:29] Staying in the present

[27:05 The strength within came from

[30:30] Cards of hope for mothers who experienced a traumatic birth

[31:27] Survival mode

[36:00] Caregivers needs the proper help

[40:21] Beads of Courage

Connect with Savannah

Website

Instagram

Additional Resources

Dear NICU Mama

March of Dimes

Hand to Hold

Beads of Courage

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Episode 69 | Liza’s Story - A daugther with Lyme Disease
“I don’t think I would have ever done the work on myself had it not been for my daughter’s struggle.”

Katie, Certified Child Life Specialist talks with Liza Blas from Very Happy Stories. We talk about:

+How Liza found her purpose and began her own healing journey
+Liza believes her daughter's highly sensitive characteristics played into her chronic health issues
+Resources to help other parents going through experiences like theirs
Resources recommended in this episode for hospitalized families facing chronic health issues:
Epidemic answers

We are sponsored by: Jambo Books

A Jambo Books subscription is like hitting the easy button for great diverse literature for your children. Every month, Jambo Books sends you 2 or 3 age-appropriate fiction books that star children of color. Jambo Books is a great gift for baby showers, birthdays, holidays or just because. Jambo serves children from birth to age 13.

Have you heard? The Child Life On Call mobile app for parents, kids
and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

"I think this may be a parent's worst nightmare.”

Katie, Certified Child Life Specialist interviews Holly, mom to three children living in Northern California. Holly’s son, Austin, was typical until just after his 1st birthday, then started regressing in gross motor including balance and weak tone and eventually spasticity, which is their biggest concern to this day.

Holly has a sense of humor and outlook that will make you instantly feel connected to her and her family. She talks about the crazy amount of testing that Austin had to go through to find his diagnosis and she also shares stories of what NOT to say to parents who have kids with special needs. My favorite part of our conversation is when Holly talks about how she hates playgrounds but found a way to turn that passion into something for good, their foundation Walk With Austin. 

Follow Walk with Austin:

Instagram and Facebook

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

This episode is sponsored by SmileMakers. Use code ONCALL20 for 20% off your order of smile making stickers, toys, patient supplies, and more!

This episode is also sponsored by Magic Mind, the World's First Productivity Drink Go here and enter code childlifeoncall20 for 20% off your order

This is a quick 12-minute talk addressing how to prepare children for back-to-school.  My son is going into first grade, and during last school year I was able to apply a lot of my Child Life skills to him.  I want to share with you how you can help your child (and yourself!) get ready for the next school year, especially in light of all the unknowns.

In this episode, I talk about…

[1:43] Start slowly back into your routine

[2:52] The importance of preparation

[5:00] Focusing on the new positive relationships they will build

[6:02] Guiding the conversation toward what works best for your child

[8:54] Supporting your child when you aren’t with them

[9:31] The follow-up once they get home from school

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Today’s guest, Elizabeth, had never heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection) when her son was diagnosed with it. PANDAS is a tough diagnosis, because some doctors believe in it while others do not.  Having a child with this diagnosis that only some doctors believe in is incredibly hard to navigate, to say the least.  PANDAS is an autoimmune disease closely related to infections, so you will hear Elizabeth talk a bit about how her son’s ear infections seemed to lead to PANDAS.

Elizabeth also shares her thoughts about how society does not judge kids with colds, cancer, or appendicitis, but society tends to look down on you when your child suffers from neuropsychiatric symptoms.  There are misconceptions that these symptoms are related to bad parenting, violence in the home, poor role models, lack of discipline, or just being a “bad child”.  Parents of children with PANDAS have a lot to carry on their shoulders, and I am so glad Elizabeth is here to share her story.

In this episode, we talk about…

[2:46] Elizabeth’s family and background

[5:17] Elizabeth’s son’s first symptoms of PANDAS

[9:01] Getting the diagnosis of an acute onset of PANDAS

[12:33] Being discharged from the hospital 

[16:28] More strep, different symptoms

[23:38] Juvenile court and the path to treatment

[33:58] Searching for the source of PANDAS with medical testing

[43:58] How Elizabeth’s son and family are doing after medical treatment

[45:09] Elizabeth’s book: What’s Wrong With My Child?

Connect with Elizabeth:

Website

Book: What's Wrong With My Child?

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Episode 127 | Courtney’s Story - A daughter born at 25 weeks [MOST DOWNLOADED]

At just 25 weeks pregnant, Courtney was diagnosed with pre-eclampsia and was hospitalized. Just 5 days later and after a terrifying emergent c-section, she would meet her daughter, McKenzie. In this episode, Courtney talks about her entire experience from her own hospitalization and her daughter's 5-month stay in the NICU and eventually going home. She talks about the balance of being a single, working mom and the struggles that come along with having a child with medical needs. Courtney will leave you feeling inspired and in utter awe of how she loves and supports her daughter. 

[2:47] Courtney is informed she has high blood pressure and is admitted to Labor and Delivery

[4:24] Courtney is transported to a larger hospital that has a higher-level NICU

[6:35] Courtney asks tough questions about her condition and her daughter

[9:12] Courtney is informed she will need to have a c-section

[11:12] Courtney is informed she will need an emergency c-section as she has developed HELLP syndrome

[15:44] Courtney describes the overwhelming emotions she felt meeting her daughter for the first time in the NICU

[19:44] A primary nurse keeps Courtney accountable in the NICU about pumping. Courtney shares how important this was to her and her journey with McKenzie. 

[21:24] Learning how to do McKenzie’s care in the NICU helped Courtney feel empowered

[22:45] Courtney describes the roller coaster ride she experienced while McKenzie was in the NICU 

[24:20] She explains how she stayed in the hospital recovering from HELLP syndrome

[24:50] That punch in the gut feeling Courtney felt after learning the significance of a white flower posted outside of a neighboring NICU room 

[26:50] Courtney shares how she advocated for McKenzie, even when others did not agree with her

[29:35] She shares about life after the NICU + rooming in with McKenzie

[33:15] Courtney shares about McKenzie’s feeding journey and oral aversion and the ups and downs with her feeding including developing, GERD and getting an NG tube

[36:41] She recalls how McKenzie’s nurse, now friend, came to the rescue to help drop McKenzie’s NG tube

[38:32] Courtney shares how she came to the decision to get McKenzie a g-tube and how it affected her as a mother

[40:15] She shares the love and hate relationship with the feeding tube and how she came to the understanding that even though it wasn’t preferable it helped her nutrition

[43:00] Changes she had to make in her life to support McKenzie including staying in during cold and flu season

[43:50] The beautiful gesture of friends supporting her during their NICU stay, bringing her to lunch each Sunday, and giving her weekly care packages. 

[45:35] Courtney shares her struggle of finding quality childcare for McKenzie and how difficult it was to find someone whom she could trust

[48:12] Courtney relied on her faith and prayer to cope with what was going on in her life and with McKenzie

[50:18] Courtney’s friend Ebony, encourages her to get help and go to therapy after she describes some dreams and things during her day that remind her of being in the hospital

[54:00] She shares how difficult it was for other people to understand what she was going through 

[55:09] Courtney describes how she puts her own needs aside to give McKenzie the selfless care and love she needs and deserves

CONNECT WITH COURTNEY

Instagram

Facebook

Twitter

Blog

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit. 

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Cindy and Gavin share about their son Ryan and his battle with Osteosarcoma. Cindy shares about how she created a Case for Smiles to help her cope with Ryan's diagnosis. Gavin brings the perspective of dad and professional and shares how he started a new position at the Hospital his son was being treated at the very same day as a diagnosis. They openly share the ups and downs of their journey and how Ryan's legacy lives on today.

[3:16] Introducing their family

[5;34] A bike accident lead to the shocking diagnosis

[6:26] Going into remission

[7:00] Gavin begins a new job as a CFO the same day they got the Osteosarcoma diagnosis

[8:30] Diagnosis day

[9:30] Bedside Manner of Pediatrician

[10:26] Balance between hospital and home

[13:32] Being open with Ryan during his treatment

[15:38] Ryan learned how to golf during his treatment period

[18:03] Cindy shares about how she made a pillowcase for Ryan to make each stay more comfortable

[19:50] Finding out Ryan was terminal

[21:30] Case of Smiles being formed after a Martha Stewart Contest entry

[23:00] Coping with the new reality and loss

[25:20] Using Ryan's experience to help cope with a cancer diagnosis

[28:40] Finding your advocate voice

[30:00] The joy in Ryan's pranks

[32:32] Learning the ropes quickly

[33:05] Evolution of care

[35:15] Smiling and laugh through the hard times

[39:02] Just Sibs Program

Connect with Gavin and Cindy

Instagram

Website

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Here we are in the last week of February, which is heart month, and I am so honored to bring you Melissa’s story. We have discussed other heart defects before, such as tetralogy of fallot and hypoplastic left heart syndrome. This is the first time we are talking about transposition of the great arteries, or TGA. TGA is diagnosed in utero and requires surgery within days. I know Melissa’s story will bring so much value, comfort, and validation to other parents.

In this episode, we talk about…

[1:54] Melissa’s background and family

[3:29] Getting the diagnosis of of transposition of the great arteries (TGA)

[9:26] Melissa’s son’s birth and treatment after birth

[15:11] Melissa’s son’s surgery

[25:24] Stenosis after surgery

[29:15] A second surgery to patch arteries

[32:24] Inflammation of the thymus

[34:45] Recovery after two surgeries in two weeks

[37:15] What helped Melissa through this experience in the hospital

[42:00] Going home after five weeks in the hospital

[44:50] Update on Melissa’s son

Connect with Melissa:

Facebook

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Episode 7 features the first part of Mandy’s story. Her son, Nolan, was born five weeks early with a host of symptoms which led them to find that he was diagnosed with a condition that only four other people are currently living with. Nolan is the ninth person in the history of medical science that has been diagnosed with Mandibuloacral Dysplasia Type B (Mad B).

In part one of Mandy’s story, she talks to us about how doctors and specialists eventually came to diagnose Nolan. It ended up being an unsuspecting doctor appointment with a Dermatologist who had studied Progeria in medical school who wrote the diagnosis on a sticky note that led them to this rare condition.

Part two of Mandy’s story will be available next Monday morning when she talks about what living with a child who has Mad B is like, how undeniably amazing Nolan is, and how she and her family cope with it.

Thank you to Gruene Photography for the beautiful pictures of Mandy, Nolan and their family. We can’t thank you enough for taking the time to give Mandy and her family these georgeous photos that they will keep forever. If you are near New Braunfels or Gruene, Texas, go book Gruene Photography. Follow her on Instagram or Facebook.

Thank you to Stephanie Sobic Gauthier for help in the storyline editing of this episode.

Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email info@childlifepodcast.com or submit your information via the website childlifepodcast.com.

Today I’m talking with Megan, who is the mother of three wonderful children. Her first was born with a rare genetic condition called Williams Syndrome. They did not discover this syndrome until he was five months old, and you will hear in her story how those first five months felt like five years. Megan is also a social worker, and she has developed a program that we will talk about at the end of the interview.

In this episode, we talk about…

[1:53] Megan’s family

[3:24] Williams Syndrome

[4:30] Megan’s pregnancy and delivery with her son

[6:21] Getting a diagnosis of Williams Syndrome

[13:45] Feeling lonely after getting the diagnosis of Williams Syndrome

[21:24] Family support and coping as parents of a child with special needs

[23:36] Living with Williams Syndrome

[26:52] How Megan takes care of herself day to day

[30:03] An update on Megan’s son and what he has taught her

[32:43] Tulip Families: The program Megan developed for families navigating disability and neurodiversity

CONNECT WITH MEGAN

Website

Instagram

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

After a long fertility journey and a high risk, stressful, and very sick pregnancy, Stephanie gave birth at 26 weeks due to severe preeclampsia. 

Stephanie, mom to Adeline, shares her experiences in the NICU and describes Addie’s difficulty with digestion. A long road of unknowns eventually led to a diagnosis of functional short bowel syndrome. 

Stephanie shares her perspective about important topics like how having a child with an "invisible disease" can be a blessing and a curse, how she actually felt relief when they received Addie’s diagnosis, and how she handles tough to answer questions from well-meaning friends and families. 

Stephanie talks about how she has been an advocate for her daughter and fought for a diagnosis, and how she continues to fight to give her daughter the best care possible and her family travels every 4 to six weeks to Boston from Baltimore to get Addie around and in front of experts in the field. Listen to Stephanie's story on the Child Life On Call Podcast.

Follow Stephanie and Addie: @addie.belle + She Got Guts

Child Life On Call | Instagram | Facebook | Twitter | Email

What if we could prevent more kids from having to have invasive surgery? During this episode, we are joined by Katie Corrado, who invented a product that works as an alternative to surgery for babies and children. Tune in to hear how her first-hand experience of watching her child struggle with an umbilical hernia led her to an innovative solution that she now offers to other families facing the same challenge. You’ll also learn why Katie is an advocate for proactive rather than reactive medical solutions and how her passion for connecting with kids led her to work as a Physical Therapist rather than a Paediatrician. Join us today to hear all this and more. 

Watch the episode on YouTube

Key Highlights:

• The Penn State Dance-Off Fundraiser and all the connections it facilitates.

• Katie’s journey to becoming a Doctor of Physical Therapy with a Board Certification in Pediatrics.

• The story of an out-of-the-box solution that Katie developed to resolve her son’s umbilical hernia, now known and sold as The Navel Cradle. 

• Differentiating between reactive and proactive medical care and testing non-invasive solutions.

Quotes:

“The resiliency of children is just unmatched and it is amazing to be a part of that.” — Katie Corrado [0:11:50]

“The idea that the best advice to me was to do nothing [about my son’s hernia] was awful. I felt so helpless.” — Katie Corrado [0:24:46]

“Just because there isn’t a treatment for something yet doesn’t mean that there’s never going to be one.” — Katie Corrado [0:27:41]

Resources Mentioned:

Kate Corrado’s LinkedIn: https://www.linkedin.com/in/cathlyn-corrado-pt-dpt-pcs-00305326/

The Navel Cradle:  https://www.navelcradle.com/

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

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 challenging seasons as a medical parent is something that is talked about enough in this important conversation on today's episode of the podcast.

[10:50} Introductions

[11:47] Fertility struggles reveals PCOS diagnosis

[13:04] Finding out she was having twins

[13:55] Ultrasound revealed possible complications

[14:30] Delivering the babies at home

[15:57] How giving medical history is a whole process

[17:41] Lower back pain just before bedtime

[18:56] Dana delivers at home

[19:55] James begins to breathe

[20:34] Vera was born breech

[21:44] Not cutting the umbilical cords saved their lives

[23:42] Babies rushed to level 4 NICU

[25:44] A humbling experience

[26:39] Being released 3 hours after giving birth

[28:02] No explanation of early delivery

[30:08] The support of family

[32:10] Allowing others to support you as a medical parent

[34:16] Learning to be an advocate

[38:00] It's ok to snooze support groups

[40:30] James and Vera today

[41:21] Mild Cerebral Palsy diagnosis

[44:51] Giving people the benefit of the doubt

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

podcast, Katie interviews Crystal Polk, a Social Worker and Licensed Therapist speaks about the dual role parents of medically complex children hold as caregiver and parent. Crystal specializes in working with families who have children with special or medical needs. She gives parents practical things they can do today to start on the path of healing. 

[3:30] Crystal introduces herself

[6:00] Identifying the differences between caregiving and parenting

[8:30] Acknowledging the stages of grief

[9:40] Grieving what you once imagined

[11:03] Delegation, being heard and frustration are common themes

[14:08] Healing unprocessed trauma using EMDR

[16:19] Lean into mindfulness

[17:53] Giving your self the the gift of consistency

[21:13] Type of support families receive varies from state to state

[22:24] Parents are demanding positive changes

[25:04] Getting the word out about parent caregiver support

Connect with Crystal

Website

Instagram

Crystal recommends using Psychology Today to search for a qualified therapist. View Crystal and other therapists here.

Crystal is LEND Certified. Read more about the LEND program here. 

Unseen Caregiver Documentary

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

"What we can do as parents and professionals is look past the behavior."

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

Friends, you are not going to want to miss this episode! On today’s episode of the podcast,we hear about Laura’s Birth story and the beginning of her son Trey’s journey with congenital Leukemia. Laura shares the raw emotion and grief when she and her husband learn of Trey’s diagnosis. She goes intimately into detail about her first time seeing her newborn son, how it broke her to her core and how she began to pick up the pieces. Laura shares how her friends rallied behind her during this extremely challenging time and how we can support others going through a crisis. There is a part 2 to Laura’s story, sharing all about life during and after an extended stay in the hospital. 

[4:10] How they chose Trey’s name

[5:20] Unexpected diagnosis 

[9:25] Emergency C-Section

[10:48] Pep Talk with Mom

[15:59] Neonatologist gives them difficult news

[19:40] Laura describes that ‘tsunami’ feeling of their world crashing down around them

[22:24] Meeting the transport nurse who helped transport her son

[27:12] Meeting Trey at CHOP for the first time

[31:10] Processing the events

[33:58]Reality of the diagnosis sinking in 

[35:15] the Importance of taking care of yourself

[39:00] How to help in times of need

[42:19] How Laura’s friends and family supported her every step of the way

CONNECT: 

If you would like to connect with Laura, please reach out to Child Life On Call

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

My guest today, Samarrah, is sharing her story about her son being diagnosed with a brain tumor. I encourage you to be present as you listen to her story and take the wisdom she is offering.

In this episode, we talk about…

[1:49] Introducing Samarrah and her family

[2:53] Getting the diagnosis of an ependymoma brain tumor

[6:19] Processing the brain tumor diagnosis

[8:44} Treatment for ependymoma

[12:43] The role of parents in a child’s cancer treatment

[15:32] Finding support and community

[19:13] How Samarrah’s daughter handled the situation

[23:21] What helped Samarrah to cope with her son’s  diagnosis and treatment

[26:59] What Samarrah’s son has taught her throughout this process

[28:06] The importance of a high-quality hospital experience and medical team

[29:43] How Samarrah plans to help her son process this experience

[31:15] Life post-diagnosis

[32:23] Samarrah’s book and the foundation she and her husband created to support ependymoma research

Connect with Samarrah:

Instagram

Facebook

Twitter

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: https://childlifepodcast.com

Merch: https://bonfire.com/store/childlifeoncall

Instagram: https://instagram.com/childlifeoncall

Facebook: https://facebook.com/childlifeoncall

Twitter: https://twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Today’s guest is Betsy, from an organization called Hope for HIE (Hypoxic Ischemic Encephalopathy). HIE refers to brain injury in an infant, and Betsy will share more specifics about the condition and her family’s experience with it  in our discussion. I originally learned about this organization through working in the NICU here in Texas, and it is a wonderful source of support for parents struggling in completely unknown territory with their babies.

In this episode, we talk about…

[1:19] HIE: Hypoxic Ischemic Encephalopathy

[2:29] Betsy’s family

[3:02] The beginning of the HIE journey

[11:36] Brain cooling (therapeutic hypothermia)

[15:10] Seeing your baby in the NICU

[24:06] Warming after therapeutic hypothermia

[24:41] MRI day and diagnosing the severity of HIE

[30:58] Leaving the NICU

[36:01] Moving forward with career and family as parents of a child with HIE

[41:20] A current update on Betsy’s son and family

Connect with Betsy:

Website

Instagram

Facebook

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

For today’s 12 minute talk, I’m speaking with Kat Harrison. At the end of 2021, I shared Kat’s episode (episode 99) in which she talked about what it was like being a teenager with chronic illness.  During that episode, we touched on what helped her the most when she was a teenager in the hospital and how to support adolescents coping with different medical or mental challenges.  I’m so excited to share this talk with you today so you can be more prepared when you’re talking to your own teenager or working in the field with adolescents.  

In this episode, we talk about…

[2:46] Kat’s background

[3:19] How parents can empower their teens living with medical and mental health challenges

[5:26] Planning for appointments

[8:17] Preventing a diagnosis from becoming an identity

[10:02] Mental health

[11:41] Asking your teen how they want to be supported

[13:04] Kat’s books

Surgery on Sunday

Migraine and Mia

Connect with Kat:

Website

Instagram

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

"It's not a time to say I'm sorry, It's a time to acknowledge that, yes in fact you had something you did not plan for, a traumatic event. But also you did have a baby and to step into that joy and gratitude and not lose sight of those things.-Jamie Cline

Jamie shares how her daughter Callie has persevered with tetralogy of fallot and later on a limb loss.She learned about her daughter's tetralogy of fallot just hours after having her 7 weeks premature. When Callie turned one, she shares how they came to the decision to do a lower leg amputation. Jamie shares Callie's journey of learning to walk with a prosthetic as well as the emotional journey she embarked on as a mother.

[3:00] Jamie shares about their family and hobbies

[4:50] Close monitoring during Jamie's pregnancy due to her pre-existing type 1 diabetes

[5:37] Callie was born 7 weeks early via c-section

[6:43] Learning of Callie's heart condition, Tetralogy of fallot

[8:30] The grief and anger to follow the initial diagnosis

[10:35] Feeling cheated of hopes and dreams she had

[11:40] Sharing the emotional challenges of others saying they are sorry rather than celebration

[13:12] Callie had to be transferred to a different hospital for the surgery

[15:00] How their community rallied around supported their family

[17:18] Callie went between the NICU and PICU for close to 3 months

[20:40] The best Christmas gift- Callie got to come home for Christmas

[21:40] Noticing Callie's limb difference shortly after birth

[26:05] At 19 months old, Callie had her amputation surgery

[27:30] Decision making process

[30:08] How grief was a big part of Jamie's journey to healing

[32:00] Jamie shares how she took care of her self during this difficult time

[36:00] How Callie has changed their lives and the positive things she has gleaned from being her mother

Connect with Jaime:

 Instagram

Website

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Sarah shares her experience with a son who acquired a common called RSV and how it eventually led to pneumonia and being hospitalized for a week. We talk about some of the hardest parts of being in the hospital like waiting for a diagnosis, not being able to cuddle your child who is hooked up to oxygen and IVs, and trying to find ways to cope cope as a mother during the experience.

Sarah discusses about how this entire experience has changed the way she looks at health, being aware of spreading germs, not taking for granted the small moments in life like a cuddly or clingy toddler and being aware of what really matters in life. 

Sarah shares tips from how to support a toddler for a week-long hospital in addition to the recovery period at home. She also talks about how one night nurse completely helped make their hospital experience so much better.

If you would like to follow along with Sarah you can find her on Instagram and Twitter. Thank you to Janet Anderson Photography for the beautiful pictures of Sarah and her family. Go book Janet Anderson Photography today! 

In this episode, Annie, Certified Child Life Specialist, talks to Eilieen. She is the amazing mom of a determined, fun loving, 4-year-old hero named Brady. Brady was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB).

While he inspires all who meets him, his favorite thing is just being a typical boy and being treated as such. After a move from Texas to Colorado to find the best care and environment for him, life shifted and their family became advocates in the RDEB community.

Eileen is on the board of the EB Research Partnership and they have an absolutely star studded (like for real a ton of A-listers) event coming up on November 18th that will be streamed on Amazon. 

Follow along with Eileen and Brody on Instagram and Facebook.

Find more resources, parent stories and support on www.childlifepodcast.com.

Child Life On Call | Instagram | Facebook | Twitter

Episode 8 is Part 2 of Mandy and Nolan’s story. If you haven’t listened to Part 1, head on over to Episode 7 so you have a better understanding and appreciated for Mandy’s story. I mentioned that Nolan was scheduled for surgery and I’m sure you’re interested in an update… and this is directly from Mandy: The doctors were able to perform a scope of his airway to identify the obstruction that is causing the apnea; however, after getting a closer look at just how constricted his airway is, they decided they could not safely proceed with the surgery. We are now discussing a more involved approach to the surgery and exploring other options all together. We are disappointed but thankful to be working with a team of doctors so dedicated to finding solutions for our one in a billion patient.

On this week’s episode, we learn how incredible Mandy and Nolan are and how MadB does not define him as a child. Mandy talks honestly and candidly with us about what it’s like to live with a child like Nolan and how the experience parallels emotions that she had in high school when she lost her mom to cancer. Mandy shares real stories about how others treat and react to Nolan, and she also talks about how incredibly adorable Nolan is and some of his favorite things: trucks, books, and a Bob Marley song.

Mandy also gives incredible advice about what she and her husband do to cope and gives these suggestions for other families feeling isolated by an illness or diagnosis:

1) Go hug your child and keep loving them - the diagnosis doesn’t define your child.

2) Try not to get too focused on the future, focus on making the most out of the present.

3) Don’t go through it alone.

4) Learn everything you can about your child’s diagnosis so you know that you’ve made the best decision you can.

 If you would like to reach out to Mandy, please message me and I will get you in touch with her through email.

Thank you to Gruene Photography for the beautiful pictures of Mandy, Nolan and their family. We can’t thank you enough for taking the time to give Mandy and her family these gorgeous photos that they will keep forever. If you are near New Braunfels or Gruene, Texas, go book Gruene Photography. Follow her on Instagram or Facebook.

Thank you to Stephanie Sobic Gauthier for help in the storyline editing of this episode.

Please subscribe to the Child Life On Call Podcast and leave a review on iTunes. If you would like to share your story or have questions about this podcast, you can email info@childlifepodcast.com or submit your information via the website childlifepodcast.com.

Today I’m talking with Amy, who discovered her son had a brain tumor after noticing something different about his eye one morning. The brain has a lot of jobs, and it has affected his everyday life in many ways. Amy is an incredible mom, and she shares their story so beautifully. Her ultimate goal is to support other parents going through similar things.

In this episode, we talk about…

[2:19] Amy’s family

[3:59] Finding out about her son’s brain tumor

[8:55] Emergency brain surgery 

[14:32] Complications after brain surgery

[18:34] Researching, asking questions, and advocating while caring for a sick child

[22:08] Starting a foundation

[25:05] Coping with the emotional toll of caring for a child with a brain tumor

[36:00] Intentionally looking for blessings

[37:32] The Raymond A. Wood Foundation

[44:48] An update on Amy’s son and what he has taught her

CONNECT WITH AMY

Website

Facebook

Instagram (Foundation)

Instagram (Personal)

LinkedIn

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

"A patient becomes so vulnerable with them because they don't even realize what they are doing. When you are in that moment petting the dog, every emotion, feeling and thought runs free because you aren't having to focus on a conversation, it is so natural."
-Shelby Bonnet, CCLS

Shelby Bonnet, a certified Child Life Specialist and Animal Assisted Therapy Coordinator, shares how facility dogs are utilized in children's hospitals. This episode is packed full of information on how facility dogs impact patient care and how to balance patient and clinician needs. If you are a parent who has ever wondered about the purpose of a facility dog in hospitals or a clinician who is wanting to have a facility dog be apart of their hospital's program, you will want to give this episode a listen!

[3:00] Shelby shares about her career being a Child Life Specialist and Facility Dog handler

[5:00] How they started the Facility Dog Program

[6:30] Child Life Specialists role with Facility Dogs

[7:12] How her workflow changed

[8:25] Balancing the needs of patients and clinicians

[10:10] Being intentional with your time

[11:18] How Pinto, the facility dog helped with a with an intervention with an oncology patient

[14:08] How Pinto altered the entire families experience, not only the patient

[17:38] Common misconceptions of having a facility dog

[19:07] Life at home with Pinto

[21:04] How to get the process started

[23:22] Splitting time amongst different units in the hospital

Connect with Shelby:

Instagram

Shelby's Recommended Resources:

Canine Companions

Canine Assistants 

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

At Alex's 20-week ultrasound appointment, she and her husband learned that their daughter, Lucy, had heterotaxy and congenital heart defects. From that moment, their lives changed and they became advocates and fighters for their spunky daughter who is now one year old.

In this episode, Alex talks about Lucy's birth, surgeries, hospitalizations and ER visits. She talks about how their cardiologist became one of their biggest champions and what a difference the congenital heart defect online community has made for them. 

Alex recommends the poem Welcome to Holland and the Mended Hearts organization for parents going through similar situations. If you'd like to connect personally with Alex, you can do so on Instagram or Facebook. 

Alex would like to share Lucy's diagnoses:

Heterotaxy: right sided stomach, midline liver and gallbladder, mirror lungs, asplenia.
Congenital heart defects: complex Single ventricle with: complete unbalanced AV canal defect, hypoplastic left heart, double outlet right ventricle, total anamoulous pulmonary venous connection, pulmonary atresia, and bilateral superior vena cava.

On today's episode of the podcast, Ashley + Martha from Dear NICU Mama share their personal stories of trials and joy as they navigated difficult seasons as NICU moms themselves. You will feel right at home with the wit and charm Martha and Ashley bring to this episode. You learn why and how these amazing women created the Dear NICU Mama community all while giving us bits of wisdom, laughter and empowerment along the way.

**Trigger Warning**: This episode talks about infant loss. If your heart isn't in the place to listen today, feel free to fast forward through Martha's part of the story.**

[3:30] Introducing Dear NICU Mama

[3:48] Martha Introduces herself

[5:11] Sharing how she became septic and had to have an emergency c-section

[6:48] Her son was born at 25 weeks gestation

[7:24] Receiving a bleak prognosis

[7:58] How JP's life changed the trajectory of Martha's life

[8:14] Discovering she had a bicornuate separate uterus

[9:00]  JJ was born at 29 weeks gestation

[10:09] Struggles with PTSD from the past

[10:50] Ashley's story

[12:33] Finding out she had sub-chorionic hemorrhage in early pregnancy

[15:45] Learning her son had a heart condition

[16:35]  Ashley becomes pre-eclamptic

[17:55] Ashley was rushed to the OR for an emergency C-Section

[18:55] Silas was transported back to their local NICU

[19:37] Adjusting to a private room from a pod

[21:34] Ashley's positive emergency room experience

[22:55] Ashley posting about her NICU journey lead to Martha reaching out

[26:25] Unfollowing accounts on social media is allowed

[29:05] The power of Facebook groups

[30:50] Delivering a message of hope

[33:07] Research about private rooms vs pods

[36:06] Empowerment and validation for parents on the facebook group

[37:53] Grief and joy can co-exist

[40:05] Leaning into grief and pain, finding the beauty in it all

[42:33] Every day is a miracle

[44:37] the fierce loyalty of the sisterhood of NICU moms

Connect with Martha + Ashley at Dear NICU Mama

Website

Instagram

Facebook

Course recommendation from Katie:

Soul Care

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

This episode originally aired in March 2020 at the beginning of the pandemic. This topic is so important and rightfully so, it is our 2nd most downloaded episode of all time. When it comes to COVID-19, how we inform our children is incredibly important. If you’re wondering how we can talk to our kids about COVID-19 when we as adults still don’t know exactly what’s happening, you’re not alone. This episode covers suggestions for age-appropriate language to use as well as general considerations to keep in mind as you talk to your children about COVID-19. Children are looking to adults for honest, easy-to-digest information. Give a listen to learn how to break it down into a way that they can understand.

[3:20] Katie explains that children and adolescents crave a strong compassionate leader who establishes boundaries

[6:00] It's important to remind children that a lot of the information they hear may not be factual

[8:53] Katie explains to empower your children by validating what they are already doing 

[9:19] She shares how hand-washing is an easy practical way fuel empowerment when discussing COVID-19

[10:10] t is ok to admit that there are unknowns about COVID-19 and acknowledging that we don’t know the answers and that is ok

[11:06] Katie shares the importance of setting a good example.You want to model behavior that your children will follow

[12:00] Offer to have a check in with your child if they are feeling worried

[12:22] Katie’s key to success is to be a strong and compassionate leader and exhibit the behavior you want your child to have. Be a buffer!

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit. 

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

In this first episode of the second season of this podcast, we hear from a self-proclaimed "crunchy granola mom" Nina, whose fourth child was born with what she calls "a funny shaped head." 

Nina goes on to describe her son's first few weeks of life and her appointments with her pediatrician and an osteopathic doctor. With little to no help from the osteopathic doctor, she trusted her instincts and returned to her pediatrician who then referred her to a surgeon at Children's National Medical Center in Washington D.C. and would learn that her son had craniosynostosis. 

Nina then discusses their surgical journey and all that in entailed. In addition to the stress of building a new business and homeschooling three other older children, Nina talks about the challenges and emotions that she felt at that time. She also talks about how her view of what a hospital is like has changed and how she talked to her older children about what Cohen was going through. 

She attributes the help of her friends and church congregation to helping her family cope with this experience. 

If you would like to follow along with Nina and her family, you can find her on Instagram or through her family's wellness business, True Whole Human. 

Today's guest on the podcast is Dr. Barbara Hecht, National Director of Strategic Initiatives and Partnerships at Clarke Schools for Hearing and Speech. She shares with us how to support Deaf, Deaf +, and Hard of Hearing students. Dr. Hecht shares about early intervention, brings awareness to CMV (cytomegalovirus), and how telehealth has positively impacted students. Katie and Dr. Hecht have such an important conversation you will not want to miss on today's episode of the podcast!

[2:20] Dr. Hecht introduces herself

[3:40] Being involved with the IDEA law

[5:42] How she became involved with Clarke Schools

[10:00] Diagnosing hearing loss in infancy

[12:40] Two major causes of hearing loss

[13:16] Cytomegaolvirus (CMV) during pregnancy

[15:12] Importance of early intervention

[17:50] Early Intervention is available in every state

[18:39] Pleasantly persistent parent

[20:00] Acess to Clarke Schools

[21:36] Efficiency of teleservices

[24:33] How Clarke Schools support families

[26:45] Explaining Deaf +

[28:40] Integrating a tool for everyone

[31:00} Normalization n the atypical

Connect with Clarke Schools

Clarke Schools Wesbite

Instagram

Twitter

Facebook

LinkedIn 

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

For today’s 12 minute talk, I’m talking about the COVID-19 vaccine and how to discuss it with kids.  I’m going to give you some ideas, with the caveat that you don’t have to use the exact words I use.  You know your child best.

This is also not meant to be an episode that tells you to get your child vaccinated. That is not my area of expertise.  You can discuss that with your child’s doctor and your family.  If you are deciding to get the vaccine, I think it’s important to have a conversation with your child ahead of time.  I want to empower you to have this conversation with your kids, and you could also play this podcast with your kids to jumpstart it.  If you want to skip forward in the episode to my message, I’m going to talk directly to your child.

In this episode, we talk about…

[2:24] Having an open and supportive conversation with your child

[3:31] Incorporating your own experience into the conversation

[4:06] The preparation portion of the conversation

[5:52] Empowering your child

[7:13] Checking in with your child after the first shot

[8:24] Not feeling well after getting the vaccine

[9:20] My message for your child(ren)

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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.

Child Life On Call | Instagram | Facebook | Twitter

This episode features Alexandra Ortega, mom of three. She shares the stories of her two son's Theo and Noah. First, we talk about her second-born, Noah, who suffered a traumatic brain injury during his birth at 35 weeks. Next, we talk about her third-born, Noah, who was born at 28 weeks. Alex talks about their NICU experiences, the ups and downs of having children with special needs, and how she copes herself. Alex's words in this episode will resonate with anyone who has a child or loved one who needs medical care. She is inspiring and it's an honor to share her story with you.

Follow along with Alex and her family on Instagram or Facebook.

This podcast is a place for parents and loved ones to find connection in one another’s stories. 

Child Life On Call | Instagram | Facebook | Twitter

"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 needs. Her story offers valuable insights for parents and professionals alike, emphasizing the power of resilience and community in pediatric healthcare.

Key Insights:

Early Diagnosis and Gut Instincts: Lexi's intuition played a crucial role in identifying her son's alopecia early on, showcasing the importance of parental instincts, and advocating for them, in healthcare.

Navigating Emotional Challenges: Lexi discusses the emotional impact of her son's diagnosis and how her husband’s positive outlook has been a source of strength for their family.

Advocacy and Medical Care: The necessity of finding specialized dermatologists and the integration of Western and Eastern medical practices are highlighted as key components of Penn's care.

Coping with Public Reactions: Lexi shares strategies for handling public reactions and educating others about alopecia, aiming to foster empathy and understanding.

Community and Support Systems: The episode underscores the value of support systems, both within the family and from the wider community, in navigating a rare medical condition.

Resources and Tips:

National Alopecia Areata Foundation: Connect with support groups, explore treatment options, and find resources tailored for alopecia families. 

https://www.naaf.org/youth-mentor-program/: Support group pairing kids with mentors that Lexi mentioned.

When parents feel empowered, everyone wins – kids thrive and the care team excels!

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

“Being a child life specialist with this population is not just about supporting them through their hospital experience, its about preparing them for the rest of their life.”

Katie, Certified Child Life Specialist talks with two child life specialists, Katie and Jessica, from the transplant team at MedStar Georgetown Hospital. 

These essential members of the care team talk about:

• The ways they developmentally and emotionally support pediatric transplant families
• How they address hard questions for older teens who transition to adult care
• Why supporting infants is important to reduce the impact of medical trauma

Resources recommended in this episode for hospitalized families:

• Hope for Henry
• Make-A-Wish
• Icing Smiles
• The Confetti Foundation

We are sponsored by: Jambo Books

A Jambo Books subscription is like hitting the easy button for great diverse literature for your children. Every month, Jambo Books sends you 2 or 3 age-appropriate fiction books that star children of color. Jambo Books is a great gift for baby showers, birthdays, holidays or just because. Jambo serves children from birth to age 13.

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

My guest this week is Taraneh, sharing her story about having a son with cleft palate.  

In this episode, we talk about…

[2:24] Taraneh’s background and her family

[3:54] Taraneh’s pregnancy and birth experience with her son

[5:23] Cleft palate and Pierre Robin Sequence diagnoses

[12:35] Flexibility with feeding a baby with a cleft palate

[15:40] Leaving the hospital and transferring care to a clinic

[20:44] Taraneh’s son’s surgery

[29:28] Surprising or unexpected moments from going through this experience

[31:39] How Taraneh’s son is doing now

[34:22] Shifting priorities in the face of a child’s medical issues

[36:08] What Taraneh wishes she had known before being thrown into the “medical world”

[41:09] Piper and Enza: providing resources to support kids and families with medical issues

Piper and Enza:

https://www.Piperandenza.com

https://www.instagram.com/piperandenza

https://www.facebook.com/piperandenza

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: https://www.childlifepodcast.com

Merch: https://www.bonfire.com/store/childlifeoncall

Instagram: https://www.instagram.com/childlifeoncall

Facebook: https://www.facebook.com/childlifeoncall

Twitter: https://www.twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Julie May has been a child life specialist for almost 20 years. She is here today to talk with us about how to talk to and support kids who have an adult in their lives who has an illness.  Julie talks about what Wonders and Worries does, and what is accessible for families today. You can get support anywhere in the United States completely for free! You won’t want to miss this episode, because Julie also shares how to read cues based on a child’s development, how to know if you have taken the conversation too far, if it’s time to play, or if they need any other intervention.   Julie is a wealth of knowledge, and I am so glad we get to learn from her.

In this episode, we talk about…

[2:02] Julie May’s personal and professional background

[4:52] Wonders and Worries: a pioneer program in the child life field

[8:42] Advice for parents who want to protect their child from their illness

[18:39] Developmental stages and what information children can handle

[25:17] Showing emotions in front of children

[28:29] Why Julie thinks it is so important to talk to kids about illness

[34:51] Getting involved with Wonders and Worries

Connect with Julie:

Instagram

Wonders and Worries Website

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

On this week's episode, Katie wraps up the year with, Lyndsey  (CLOC admin + podcast editor) sharing about what the common themes across the episodes were in 2022. This year was a memorable one as there were so many parents who so candidly shared their story on the podcast and clinicians who shared their expertise to inspire our listeners. 2022, you were SO good to us! 2023 we look forward to all the amazing stories and insight this next season will bring! 

[00:45] Lyndsey Introduces herself

[3:34] Listening to stories while in the hospital

[4:09] Diversity of topics in 2022

[4:32] Paola's Story {Episode 131}

[5:30] Laura's Story {Episode 123 + Episode 124}

[6:02] Dear NICU Mama's Story {Episode 145}

[6:28] Feeding pump interruption

[8:00] Acceptance of being an advocate and expert

[8:25]Find your people

[9:09] It's ok to use google

[11:20] We are grateful for you

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

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. your heart is in a million pieces

[4:45] When is it ok to ask questions

[5:25] "Can you let me know when a good time is?"

[6:32] I love you, I'm here, I want to be useful

[7:00] Let them know that you are there without expecting a response

[7:58] Write down your questions

[8:30] How can Grandparents advocate?

[9:26] Sitting down with your child and ask their wants and needs

[10:00] Helping with everyday tasks

[11:07] Resources for Grandparents

[11:32] Online resources to help navigate

[12:38] The role of Grandparents is so important

Download our free grandparents guide here.

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Episode 126 | Supporting Children in Hospice

On this week's episode, Shani Thornton, CCLS,  from Child Life Mommy shares how to support children in hospice. Shani wears many different hats in the Child Life world including supporting children in the hospice setting .Shani shares how to connect with children during this difficult time and ways to explain things that are honest and easy to understand. To help children feel more connected during this challenging time she shares some of the meaningful exercises and activities she does to help children cope. 

Connect with Shani:

Instagram

Website

Click on this link to view the books Shani talked about in today's episode! 

[6:50] Shani talks about working with a local hospice agency to provide support

[8:44] Interventions in the hospice setting 

[10:07] Importance of following the child’s lead. 

[11:05] How children digest information

[13:35] Explaining differences in medication, for illness versus comfort

[15:22] Explaining to children the care team that will be helping

[16:10] Processing hospice care 

[16:30] Using play to help children to understand terminal illness

[18:00] How to explain illness not seen by the eye

[19:17] Importance of validation, security, emotional safety and being seen 

[19:35] Creating fingerprint charms, handprint molds, handprint tree and bracelets to commemorate 

[21:25] Importance of giving parents space to share and how witnessing, validating and listening is key

[22:54] Communication with social worker and hospice agency

[24:40] Additional ways to support the family

Sign up for FREE Parent Support Group with a Child Life Specialist beginning, Monday June 27th at 10am CST

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifeoncall.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

"I've learned so much in this whole process. It's like you have a depth inside of you that resurrects as an advocate and high alert, and it lives inside of you when you need it."  

-Aspen, Willa's Mom

In this episode of Child Life On Call, host Katie Taylor and guest Aspen share an intense and educational journey through pediatric appendicitis. Aspen recounts her daughter Willa's sudden illness, misdiagnosis, and the emotional rollercoaster of a ruptured appendix leading to urgent surgery. This story not only highlights the challenges and nuances of navigating pediatric healthcare, but also underscores the importance of parental intuition and the vital role of child life specialists in supporting both children and their families during medical crises.

Katie and Aspen dive into topics such as parental intuition, medical advocacy, and the impact child life can make. Aspen's experience stresses the importance of trusting your parental instincts when you feel the medical assessments are overlooking the correct diagnosis. The conversation also discusses the significant positive impact of child life specialists in managing a child's anxiety and discomfort through creative and empathetic interventions, as well as the emotional toll on parents and the necessity of finding support during a child's medical emergency. 

"I wish I would have pressed harder to say, let's just do a scan. What's the worst thing that's gonna happen? 

Aspen, Willa's Mom

The resources mentioned in this episode are:

• Child Life On Call: Access comprehensive guides and support for parents and healthcare providers on Child Life On Call.

• Hospital Playrooms: The therapeutic benefits of play, the use of hospital playrooms to aid recovery and normalcy for hospitalized children. Read more about creating a comfortable and child-friendly environment in medical facilities here

• Preparation Books: The importance of specialized books for children undergoing medical procedures to help them understand and cope with their experiences.

Engage with us on Instagram @ChildLifeOnCall for more stories from parents and practical tips. Check out our Amazon storefront for recommended products that support your child's development. Interested in enhancing your organization's pediatric care? Request a demo of the Child Life On Call app today!

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.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

Instagram | LinkedIn | Amazon 

For today’s 12 minute talk, I’m interviewing Ashley McGaughy.  Ashley is a pediatric occupational therapist from Chicago, and she primarily works as an independent contractor with kids in intervention programs, ages zero to three.  She works on everything from play to daily life skills, and she gets to see kids both in their homes and in private community settings. She has a lot of expertise to offer, and I’m so excited to share it with you.

In this episode, we talk about…

[1:09] How Ashley got into occupational therapy and her current work

[3:00] Beneficial occupational therapy in the home setting

[5:37] Activities that get great engagement and feedback from kids

[6:22] Parent engagement in occupational therapy

[7:21] Fun and surprising moments as an occupational therapist

[8:50] Ashley’s favorite part of being an occupational therapist

[9:56] How to follow and learn from Ashley

[10:44] Go with your gut when it comes to your child

Ashley McGaughy

Pediatric Occupational Therapist

instagram.com/ashtheot

youtube.com/c/ashtheot

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Katie, Certified Child Life Specialist, talks with Jamie Gentille, Director of Child Life Services at Inova Children's Hospital and Dr. Jody Thomas, from the Meg Foundation for Pain, in this episode.

Dr. Jody Thomas is a licensed clinical psychologist, and specialist in pediatric medical illness and trauma and the founder of the Meg Foundation for Pain. She discusses the mission of their organization which addresses pain in children head-on. Listeners today will walk away with a better understanding about why children shouldn't be in pain if there are ways to reduce it as well as tangible tools the foundation is working on to support parents and children.

Jamie adds her own perspective as someone who has spent her life in the medical world, personally and professionally. Jamie's stories show the reality of how the trauma of pain in childhood has effected her to this day.

Child Life On Call | Instagram | Facebook | Twitter

After a long pregnancy on hospitalized bedrest, Kelli describes the birth and first year of her twin girls, one of which was born with two genetic conditions, Caudal Regression Syndrome and Goldenhar Syndrome. The journey to diagnose these conditions was a long one, and Kelli talks about what that process was like, and what is like to have a child with these two syndromes.

Kelli recommends a several resources, www.isacra.com and the Goldenhar Syndrome Facebook group.  

Kelli also recommends rarediseases.org’s network for a community of support and information on Goldenhar syndrome.

If you would like to connect with Kelli personally, you can follow her on instagram at @kelita83, on her blog at www.babygruens.wordpress.com and at Austin Moms Blog.

If you would like to share your story or have questions about this podcast, you can email childlifeoncall@gmail.com or submit your information on childlifepodcast.com.

Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge.

“You want to make sure that you are ready to be able to prepare not only yourself but your kiddo.” - Emily Martinec, CCLS

In this episode host Katie Taylor chats with Emily Martinec, another experienced Child Life Specialist. These two dive into the complexities of preparing children for an upper GI procedure. They provide valuable insights and practical tips for both parents and fellow specialists, sharing lessons learned from their work in pediatric radiology and GI. From scheduling the procedure to supporting children emotionally and physically, Katie and Emily guide listeners through every step of the process for both kids and parents. Whether you're a parent or a professional, this episode is packed with advice to help create an emotionally safe and successful experience for children.

A HUGE thank you to our sponsors: 

BeginHealth Prebiotics: Nutrition support for healthy digestion. Use code “ChildLifeOnCall” to get 25 percent 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 want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. 

Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages.

Key Insights

Preparation is Key: Schedule the procedure around your child’s routine (e.g., feeding and nap times) and advocate for care at a pediatric facility.

Child-Led Support: Tailor explanations based on your child’s age—toddlers need short, concrete steps, while older children benefit from a detailed walkthrough.

Creative Coping Strategies: Bring familiar items like a favorite cup or lovey, and offer simple choices (e.g., flavoring options for the barium).

Parent Emotional Regulation: Stay calm and positive, which helps children feel safe and supported during the procedure.

Teamwork with Staff: Collaborate with radiology staff and child life specialists to create a smooth experience tailored to your child’s needs.

Resources and Tips:

Support Spot App: Step-by-step guidance and visuals for procedures like the upper GI. Download here

Age-Appropriate Preparation Tips: This episode provides strategies tailored to each age group, offering practical and developmentally appropriate tips to help ease anxiety and ensure a smoother experience for both kids and caregivers.

When parents feel empowered, everyone wins – kids thrive and the care team excels!

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

In this episode you will hear from Gillian, cohost of the For Grits and Giggles podcast. Gillian describe her personal journey that includes a cancer diagnosis for her infant daughter and life altering accident that happened a year after she finished chemotherapy. She shares her own personal struggles in coping and how she sought medical help, and she’ll describe how meeting another mom whose life paralleled hers turned into a lifelong friendship and a special bond that will stay with her forever. 

To follow along with Gillian's story, you can find them on Instagram. 

Child Life On Call | Instagram | Facebook | Twitter

Spit up, and even reflux, can be a common problem for infants, but what happens when it's more than that?

In this episode, Amrita shares with Katie, Certified Child Life Specialist, about what happens when a child's reflux became severe and leads to a three-week hospitalization, a feeding tube, and ongoing support from developmental therapists.  This is the reality of severe gastroesophogeal reflux disease.

Listen to Amrita's story to hear how she has coped with this experience and how her son is now thriving with love and support from his amazing parents.

Listen to more stories and get resources to support your children at www.childlifepodcast.com

Child Life On Call | Instagram | Facebook | Twitter 

“It was a life or death... that was our life and we rose to the occasion.”

Katie, Certified Child Life Specialist talks with Laurie Strongin from Hope for Henry.

We talk about:

+How parenthood started out with hearing the news no parent wants to hear

+How Laurie’s growing family lived out of hotels and Ronald McDonald Homes for years

+The impact her first born’s death has had on his siblings

+How the first birthday without a “birthday boy” sparked a mission that has reached over 55,000 children in hospitals.

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

Today we have another Dad on the podcast. Katie interviews Oliver Bernier, father of Emilio and filmmaker, about his son's unexpected diagnosis of down syndrome. You will learn what inspired Oliver to create a film to educate and empower parents of children with Down syndrome how to navigate the school system and be the best advocate for their child. Oliver's passion to educate parents about the importance of inclusivity will shine through as he shares an inspiring message.

[3:45] Introductions

[5:10] Forever connection to New York

[6:22] Filming the moments

[7:12] Misconceptions about Down syndrome

[9:28] Giving Emilio the world

[10:22] Building the bridge to understanding living with disabilities

[12:17] An atmosphere of acceptance

[15:01] Putting a dent the world to raise awareness

[17:20] Sharing other families stories on the film, giving him hope

[19:28] Living in the moment

[21:34] Universal design for learning

[23:18] Empathy taught by practice

[24:53] All parents advocating to be in classes with differently abled child

[26:45] NICU is a mirror of an inclusive classroom

Connect with Oliver

Forget Me Not Documentary

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Swapnil, father of two, shares on this episode of the podcast about his daughter, Anya, who has severe food allergies.  Swapnil shares about Anya's first symptoms of a food allergy and the event that revealed the severity of her allergies. Whether you are a parent or Clinician, you will gain so much understanding and knowledge about food allergies by listening to Swapnil's story.

[2:10] Value of resources along the journey

[4:00] Introducing the family

[4:56] Eczema struggles at 6 months old

[5:30] Anya had a anaphylactic reaction to cashew butter

[6:44] Awareness is arising about food allergies

[7:46] Preparation for Anya to go to school

[9:07] Testing from a local allergist

[10:20] Keeping a variety of foods in her diet

[11:30] Keeping a spreadsheet to keep track of food and reactions

[14:50] How manufacturing changes created an issue

[16:00] How mitigating the risk is a form self care

[17:23] Sub-lingual Immunotherapy treatment (SLIT)

[19:00] Finding a team of allergists for Anya

[21:30]  The differences in a school settings and away from home

[25:13] Swapnil wrote a book to help Anya cope

[26:10] How the Allergy Community online was extremely helpful

[28:22] Practical ways to remember to take the Epi pen

[31:08] Using the epi-pen is never easy

[32:00] Sharing about Anya's character

Connect with Swapnil

Instagram

Recommended Resource

Book by Swapnil Patel

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

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 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 for procedures with items you have at home empowers children and their families. 

• Supporting the non-patient can be very impactful to families, this includes the siblings and parents. 

• Loss and Bereavement support is crucial to families. Grief is not linear and the community as a whole can be affected by a loss. Annie and Haley support these families through monthly support groups. 

• Collaborative support from one another professionally can create strong partnerships with the best interest of the family and child at heart.

• When seeking help in a hospital setting, reach out to the person who makes you feel most comfortable. If they cannot provide the specific support you need, they will know who can and will direct you to the right resource.

 Learn more about Hope for HIE here.

 Parent Stories Matter

If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys.

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Empower Parents & the Care Team with SupportSpot

• 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface.

• 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.

• 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.

• 73% of parent users believe the Child Life On Call App 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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

"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 discuss how Feeding Matters supports families and healthcare professionals, helping them navigate the challenges of feeding disorders. This episode provides a valuable perspective for both parents and child life specialists, highlighting the impact of community and support in overcoming these challenges.

Key Insights and Lessons:

• The Importance of Early Intervention: Identifying and addressing feeding disorders early can significantly reduce long-term psychosocial impacts on children.

• Advocacy and Empowerment: Parents must learn to advocate for their children, even when it feels overwhelming, to ensure they receive the necessary care and support.

• Comprehensive Support Systems: Organizations like Feeding Matters offer essential resources, peer coaching, and financial assistance to families facing pediatric feeding disorders.

• Understanding Pediatric Feeding Disorders: Awareness and education about feeding disorders are crucial for both parents and healthcare providers to properly support affected children.

• Mental Health Support: Prioritizing mental health for both parents and children is essential in managing the stress and challenges associated with feeding disorders.

Resources and Tips:

• Feeding Matters: An organization that supports parents of children with pediatric feeding disorders through advocacy, education, support, and research

• Peer-to-Peer Support: Connect with other parents through Feeding Matters’ peer coaching program for shared experiences and support.

• Financial Assistance: Due to the high costs and low insurance coverage of treating pediatric feeding disorders, Feeding Matters provides financial assistance. 

• Annual Pediatric Feeding Disorder Conference: Attend or participate in the yearly conference organized by Feeding Matters to stay updated on the latest research and resources.

  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 Child Life On Call App’s comprehensive resources and user-friendly interface.
  • 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.
  • 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.
  • 73% of parent users believe the Child Life On Call App 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

  Facebook.com/childlifeoncall

  linkedin.com/in/kfdonovan

   

Answering Parent Questions: How Do I Tell My Kids that I Have Cancer?

Katie, Certified Child Life Specialist gives you tips, language and things to consider when you’re telling children about a cancer diagnosis in the family.

We talk about:

+How to assess your child’s reaction to the news

+Concrete language to describe cancer and chemotherapy

+Ways to keep the conversation open-ended

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

Advocacy, Compassion, Innovation: Elise's Child Life Journey

"Working with children with medical complexity and developmental differences isn't just a job; it's rooted in who I am." - Elise Cofer, CCLS

Research Article: Fitting the Pieces Together 

Lead Researcher: Elise Cofer

In this captivating episode of Child Life On Call, Katie Taylor sits down with Elise, a Nashville-born child life specialist who brings her passion and dedication to the hematology oncology unit at Vanderbilt. Elise's journey into child life, driven by a background deeply embedded in caring for children with special needs, showcases her commitment to enhancing pediatric healthcare. Through her story, listeners will gain insights into the challenging yet rewarding world of a child life specialist. Elise discusses the evolution of her career, her groundbreaking research on caregiver support, and her vision for a more inclusive and personalized approach to pediatric healthcare.

"Elise's insights remind us of the critical role child life specialists play in not just supporting children, but whole families through their healthcare journeys." - Katie Taylor, CCLS

Key Insights and Lessons:

• The Holistic Approach: Elise's interdisciplinary background highlights the importance of integrating care for children with special needs, emphasizing a holistic approach to their well-being.
• Research as a Pathway for Change: Elise shares her research findings on caregiver experiences, revealing a profound need for targeted child life interventions that support not only the child but the entire family unit.
• Advocacy and Empowerment: Through her work and research, Elise emphasizes the power of advocacy by caregivers and the role of child life specialists in empowering families to navigate the healthcare system effectively.
• The Importance of Listening: One of the most critical skills in child life work, according to Elise, is the ability to listen—to truly hear the needs and wishes of children and their families, thereby tailoring support to each unique situation.

Recommendations:

• For Families: Elise recommends resources that provide guidance on navigating the healthcare system for children with medical complexities, emphasizing the importance of community support and advocacy.
• For Child Life Specialists: Insights into integrating research findings into practice, enhancing the child life specialist's toolkit for supporting families dealing with medical complexities.

🌟 Connect and Share Your Story: Join our community on Instagram @ChildLifeOnCall to share your journey and find support from others navigating similar paths. 

As we continue to explore the depths of pediatric healthcare through stories like Elise's, we are reminded of the resilience, courage, and love that drive individuals to make a significant impact. Stay tuned for more inspiring episodes from Child Life On Call.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

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 to follow along with Ashlyn and Myles, you can follow their Instagram account at @_aboutlaw.

Child Life On Call | Instagram | Facebook | Twitter

My guest today is Carrie Holt. Carrie is one of those people who, when you talk to her, you feel like you’ve known her your whole life AND it feels like you’re there in the room with her.  She has such a great perspective on having a child with a diagnosis and special needs, and she also hosts a podcast called Take Heart Special Mom.  I’ll be sharing a bit about what I’m grateful for this Thanksgiving week, and then we will jump into Carrie’s story.

In this episode, we talk about…

[1:24] What I am grateful for

[4:07] About Carrie Holt

[5:16] Getting diagnoses of spina bifida and hydrocephalus

[8:43] The second half of Carrie’s pregnancy after these issues were discovered

[13:37] Bonding with a baby that has to have surgery right after birth

[19:30] A trip to the pediatric intensive care unit

[25:54] Coming home with a ventilator

[27:54] What Carrie wishes she had known at the beginning of this journey

[31:39] How Carrie’s other children have grown through this experience

[38:31] What Carrie’s son has taught her since he entered her life

Connect with Carrie:

Website

Podcast

Instagram

Facebook

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: https://childlifepodcast.com

Merch: https://bonfire.com/store/childlifeoncall

Instagram: https://instagram.com/childlifeoncall

Facebook: https://facebook.com/childlifeoncall

Twitter: https://twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

On today's episode of the podcast, Katie interviews Lo Nigorish, certified IBCLC Lactation Consultant and Host of The Milk Making Minutes Podcast. Whether your journey consisted of breastfeeding or not she shares how lactation consultants can assist with feeding the NICU and beyond. Lo shares her heart and mission behind supporting families. Whether you are a parent of a baby in the NICU or a clinician, you will not want to miss this episode.

[4:21] Introductions

[6:05] Parents are experts

[7:04] Perceptions of what a lactation specialist is and does

[8:38] Listening is so important

[10:45] Helping families feel heard and supported

[13:00] Focusing on what you can do in those moments

[14:12] Bottle feeding support

[17:20] It's ok to say no

[18:50]  The evolution of breast feeding

[20:47] Congenital Heart Defect Mama's breast feeding journey

[22:32] Support is key

[23:09] Reframing your mind and not comparing your journey during

[24:00] How Chelsea's Story inspired Lo to connect with Child Life Specialists

[25:00 ] Assessing needs as a clinician prior to seeing the parent

[26:00] Creating an inclusive community

[28:00] Judgement free support zone

Connect with Lo

Instagram

Quabbin Birth Services

The Milk MakIng Minutes Podcast

Link to Show

' Letting go of Breastfeeding Comparisons'  episode with Chelsea Bea

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

April is Child Abuse Prevention Awareness Month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse.

Today’s guest expert is Jane Donovan, who is a child abuse prevention advocate. 

"And like we say in child life, you have to prepare. So you know what to expect and you know how to cope with what's going to happen next." - Katie Taylor, CLOC

In this crucial episode, Katie Taylor is joined by a child abuse prevention advocate, Jane Donovan, to delve into the sensitive and vital topic of child protection within the healthcare system. The discussion focuses on how child life specialists can play a crucial role in identifying and responding to signs of abuse in children. Through detailed education on proper documentation, response strategies, and the importance of preparation, this episode provides essential insights for any adult from child life specialists to parents, underscoring the role of education in prevention and the duty to teach children how to keep their bodies safe.

Key Insights and Lessons:

• Importance of Proper Documentation: Understanding how accurate and detailed documentation can aid in protecting children and supporting further investigations.
• Recognizing Signs and Symptoms: Learning the subtle signs and symptoms of abuse to ensure early intervention and support for the affected children.
• Educational Role of Child Life Specialists: How child life specialists can educate and prepare themselves to better support children who may disclose abuse.
• Empowering Children: Strategies for teaching children about body safety and self-protection in a manner that is appropriate and empowering.

Resources and Tips:

• Kids Count Players Safety Sheet for Parents and Caregivers
• Kids Count Safety Sheet for Kids

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

In another version of "Katie and Jamie's Top 5" these two friends and child life specialists try to lighten the mood by talking about our favorite things of 2020. We can all admit the year was...meh... so why not chat about some of the good parts.

Jamie and Katie talk about fun things like their favorite lounge wear, shows to binge, holiday traditions and more game-changing revelations like favorite recipes (spoiler: wine).

From Jamie's favorite flavor of NyQuil to "sympathy chores" she had as a "sick child"... we hope to make you laugh, smile, and feel like you're hanging out with your friends. 

Listen to other episodes with Jamie here: 

• Top 5 things about being a Cardiac Kid for Heart Month
• Liz and Jamie's Story - A daughter with Tetralogy of Fallot and HIV
• Pediatric Pain with the Meg Foundation
• Katie Chats with other Child Life Specialists

Child Life On Call | Instagram | Facebook | Twitter

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.

She describes how:

*Learning to navigate the intimidating healthcare system took time

*Ashby’s optimistic attitude helps her implement coping skills to deal with pain

*Their family was blessed with this sweet girl who has in turn prompted other families to adopt from China

You can follow Shay on Instagram, Facebook and Pinterest.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

“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 evolution of parental advocacy, and the power of family and community support in navigating the complexities of pediatric healthcare.

Takeaways from Skip and Joyce:

The Power of Advocacy: Joyce and Skip's relentless advocacy for Deb's health and well-being, challenging medical professionals when necessary.

Importance of Parental Presence: The emotional and developmental impact of parental presence and touch, even in limited hospital circumstances.

Resilience and Adaptation: Deb's strength and resilience in the face of social challenges and medical hurdles.

Evolution of Pediatric Care: A reflection on how pediatric care has evolved, highlighting the necessity of family-centered approaches.

“The advocacy role is important. And of course, that's one of the roles that Child Life has for children." - Skip Vilas

Resources and Tips:

Foundation for Ichthyosis and Related Skin Types (FIRST): Provides support and resources for families dealing with ichthyosis. Learn more

National Conferences by FIRST: Opportunities for families to connect and share experiences.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

"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 addressing themes of separation, loss, and the enduring strength of love. Patrice shares her inspiration behind "The Invisible String" and its profound impact on both children and adults, emphasizing our universal connectedness and the healing power of love.

"The messages of love and connection I write about are not just for children; they resonate with the inner child in all of us." - Patrice Karst

Key Insights or Lessons Learned:

• The concept of "the invisible string" as a universal metaphor for love and connection that transcends physical presence and even loss.
• The importance of acknowledging and discussing feelings of loneliness and the power of finding one's inner best friend, as explored in "Ruby and Lonely."
• How creativity and storytelling can be therapeutic, providing solace and understanding in times of grief and separation.
• The role of child life specialists in utilizing literature like Patrice's to foster emotional safety and understanding among families facing medical challenges.

"Every letter I receive is a reminder of the profound impact stories can have on healing and connection." - Patrice Karst

Resources and Tips Shared in the Episode:

• "The Invisible String" by Patrice Karst: A must-read for anyone seeking to understand and teach about the bonds of love. 
• Other books by Patrice Karst
• Child Life On Call App: Explore this invaluable tool for additional support and resources for navigating pediatric healthcare challenges. Request a Demo.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

I'm his mom, and I carried him for almost nine months, and no one loved him more than me. I'm his expert, and I'm going to own that. - Kathryn Whitaker

Have you ever found yourself amazed at the strength people find in the toughest of times? 

Well, on today’s podcast, we’re talking about one of the common themes we’ve seen over the past 200 episodes of Child Life On Call and something I consistently see parents share on social media. 

We’re talking about the incredible phenomenon of PTG, or post-traumatic growth. We're taking a special look at one of the deeply personal journeys a parent has embarked on during and after their child's medical battles. Together, we'll explore how these intense experiences can unexpectedly sow seeds of strength, knit tighter family connections, and awaken a profound appreciation for every precious moment of life. And guess what? We have a special guest, parent, and passionate advocate, Kathryn Whitaker, who's here to share her inspiring story. So grab your favorite cup of comfort, settle in, and join us as we uncover the resilience and beautiful transformation hidden within the heart of every parent's medical challenge.

Kathryn Whitaker, a proud 6th generation Texan and a mother of six, brings a wealth of personal experience and resilience to the Child Life On Call podcast. With a background in agriculture and marketing, Kathryn's journey as a seasoned NICU parent has inspired her to advocate for families facing similar challenges. Her work with Hand to Hold, a national nonprofit supporting NICU families, showcases her passion for providing strength and support to others dealing with the NICU experience. Through her difficult experiences, Kathryn has found personal growth and hope, offering valuable insights to parents navigating similar paths. Her unique perspective and unwavering resilience make her a compelling voice for anyone seeking strength and inspiration during challenging times.

You are not going to be the same person, thankfully, but hopefully a stronger, better version of the person who walked in the door, as opposed to the person who walks out. - Kathryn Whitaker

The resources mentioned in this episode are:

• HandtoHold.org

• Check out the NICU Heroes podcast for NICU professionals looking to earn continuing education credits while learning from amazing guests.

• Purchase Kathryn Whitaker's book Live Big. Love Bigger. on Amazon or wherever books are sold for an inspiring and transformational read about living an intentional life.

• Kathryn on Instagram.

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.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

Instagram | LinkedIn | Amazon 

In this episode, we will hear from Laura about navigating hospital life and finding the balance between caring for her family and taking care of herself. She focuses on the importance of self care and how it has made her be the best version of herself. Laura shares how life after the hospital doesn’t have this glamorous feeling but is another marathon in itself. In this episode, she speaks on the positive takeaways from this journey. This episode is full of nuggets of wisdom that you will not want to miss! If you are in the middle of a long hospital stay, this episode will speak to your heart. 

[3:54] Leaving Trey for the night

[5:56]- Daily Routines

[7:40]- making time special with the big kids

[12:07]-Touching interaction with CT Tech

[17:47]- How our children heal us and we re-strengthen bonds 

[18:50]- Dividing and Conquering responsibilities

[19:57]- Trey’s homecoming

[22:00]- Feeling of being alone

[24:49] Trey’s strong emotional intelligence

[28:29] Laura shares how motherhood is a privilege

[33:00] Taking care of you!

[35:40] The daily high 5

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 more at www.cldisasterrelief.org.

Today I’m talking with Paige, who shares her daughter’s experience with Nursemaid’s Elbow. On this podcast, sometimes we talk about really intense diagnoses that last years and have a significant medical impact. Other times we talk about acute issues that are not severe but require medical attention - and today is one of those days. Check out this episode to hear about what Nursemaid’s Elbow is and how to fix it.

In this episode, we talk about…

[3:05] Paige’s background and family

[4:55] Finding out about Nursemaid’s Elbow

[12:57] Treating Nursemaid’s Elbow

[17:09] What to do if you suspect Nursemaid’s Elbow

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 your story on the Child Life On Call podcast, please send an email to info@childlifepodcast.com

Child Life On Call | Instagram | Facebook | Twitter

In this episode, we talk about…

[1:51] Dimitra’s family and background

[3:37] Adapting to changes outside of our control

[5:19] Getting the diagnosis of transposition of the great arteries (TGA)

[14:05] Pregnancy after confirming a heart defect

[18:59] Dimitra’s son’s birth 

[24:01] Coping with setbacks after birth

[28:49] Finding out about her son’s coarctation of the aorta

[30:52] Dimitra’s son’s surgeries

[39:36] Life after two heart surgeries

[43:30] What Dimitra’s son has taught her

[48:30] How Dimitra processes and copes with her experiences now

Connect with Dimitra:

Instagram

Website

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. 

 Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages.

In this episode, Katie Taylor interviews Heather, host of the Navigating Childhood Cancer podcast and mother of a teenager diagnosed with leukemia, in honor of Childhood Cancer Awareness Month. They discuss the challenges of receiving a cancer diagnosis for your child, managing cancer treatments, including pill swallowing, and navigating parent guilt. Heather shares her family's journey and how she balanced protecting her son while also being open about her experience to support other families. Through her podcast, Heather provides a space for families to share their stories, giving listeners the strength to cope with childhood cancer.

Key Insights & Lessons Learned:

• Pill Swallowing is a Process: Sometimes the goal isn’t mastering a technique but simply finding what works, even if it means grinding pills for an extended period.

• The Importance of Listening to the Child: Empowering the child to make decisions about their care, like how they take their medicine, can alleviate unnecessary stress.

• Parent Guilt is Real, but Not Always True: Parents often struggle with feeling responsible for their child's illness, but as Heather was reminded, it's not your fault.

• Sharing Helps, But Boundaries Matter: Heather highlights the balance of sharing personal experiences while respecting her son's privacy, which is crucial when sharing such a sensitive journey.

Resources and Tips:

• Navigating Childhood Cancer Podcast: Hosted by Heather, this podcast shares stories and lessons from families going through childhood cancer. Listen here

• Book Recommendation: What’s an IV? by Melissa Fadel and Rosemary Pang – a child-friendly guide of the IV process.  Get the book here

Begin Health

To learn more about the sponsor of today's episode, Begin Health, click the link here to get a 25% off coupon! 

When parents feel empowered, everyone wins – kids thrive and the care team excels!

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

(This episode was developed in partnership with Aflac. I was compensated for this episode, but all opinions are entirely my own. #ad)

In this episode, Katie Taylor, Certified Child Life Specialist talks about the importance of a community for caregivers. She interviews Nichole who shares what her son's experience with cancer has been like. Sara Stewart, Child Life Specialist at Lurie Children's Hospital discusses how she supports children and families during their cancer journey. 

Nichole refers to My Special Aflac Duck as a “game changer” for her son during his second fight with cancer. My Special Aflac Duck gives kids with cancer the chance to find joy through play. From feeding and bathing the duck to singing with it and hearing its heartbeat, this interactive companion helps kids find a distraction from their diagnosis.

Listen to more stories and find more resources for children, professionals and families at Child Life On Call.

This podcast episode is featured in Aflac’s "Do Good" community newsletter, which spotlights insights, ideas and individuals making a difference in the pediatric cancer community. Visit Aflacchildhoodcancer.org to sign up for their newsletter and register for a My Special Aflac Duck. Authorized professionals at licensed health care facilities can order a duck free of charge to give to pediatric cancer patients, age 3+, to own forever, and use with them during their cancer care.

Child Life On Call | Instagram | Facebook | Twitter

Katie, Certified Child Life Specialist is interviewed and asked about ways to support children of chronically ill or medically complex children. 

Questions that Katie discusses include:

+How to have hard conversations with children

+How to keep siblings included and understood

+When is the best time to have a baby after having a child with medical needs

Madeline is the host of The Rare Life podcast and this episode is also featured on her show. 

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

"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 power of community, and the significance of effective communication in pediatric healthcare.

Key Insights:

Early Diagnosis and Challenges: Elliott's diagnosis journey began with a seemingly minor issue, leading to the discovery of a large mass in his tonsil, which was diagnosed as Burkitt lymphoma.

Importance of Advocacy: Reina emphasizes the critical role of parental advocacy, including meticulous record-keeping, clear communication with medical staff, and involving Elliott in his care decisions.

Support Systems: The support from family, the school community, and the involvement of a Child Life Specialist were invaluable in navigating the complexities of treatment and providing emotional and practical help.

Emotional Coping: Reina discusses the emotional toll of her son's illness, the importance of mental health support, and the strategies used to help Elliott cope with the changes and challenges of his treatment.

Creating Resources: Inspired by their experience, Reina has created children's books to help other families navigate similar journeys, emphasizing the importance of involving children in their care and providing accessible resources.

Resources and Tips:

"When a Kid Like Me Fights Cancer" and other resources for helping children understand and cope with cancer.

Read "A Brave Kid's Guide to Lymphoma" and"A Brave Kid's Guide to Leukemia"  to help your child cope with a lymphoma or leukima diagnosis. 

To learn bout the mission of Hello Brave, founded by Reina, visit their website here.

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Get the SupportSpot app! Now available for ALL parents without a hospital code!

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

Lyndsey's daughter failed her newborn hearing screening soon after birth, but it didn't alarm Lyndsey since her son had also failed his first test after he was born. After a second failed test, Lyndsey was asked to return soon after for another exam from an audiologist. They would soon learn that her daughter had severe hearing loss. 

Lyndsey talks about her experience and feelings with the process of learning this news and then deciding to go through with getting cochlear implants. She talks about how they came to that decision, the five-hour surgery, what it was like when her daughter heard her voice for the first time and then how they've moved forward with auditory verbal therapy. Lyndsey talks about how thankful she was for the resources and support from Texas Hands and Voices. 

If you’d like to get in touch with Lyndsey and have any questions for her about her experience or the resources she mentioned, get in touch with me at Info@childlifepodcast.com and I will connect you with her. Thank you so much to Lyndsey for sharing your story with our listeners today. 

A big thank you goes out to Laura Morsman Photography for the amazing photos of Lyndsey and her family. If you live in Austin, you need to book Laura Morsman Photography to capture beautiful moments of you and your family. 

Connect with this podcast and learn more on Instagram, Facebook and Twitter. 

Not only does Sara talk with us about getting diagnosed with breast cancer at the age of 34, but she also talks about how she went through it as a single mother navigating life with a six-year-old.

We talk about

+How she advocated for herself and encourages parents to ask the same things for themselves that they do for their children

+How asking for help was non-negotiable and she had to learn to get comfortable with it

+How she told her six-year-old that she had cancer and her daughter’s emotional response to having a mother go through chemotherapy and painful surgeries.

Learn more about Sara’s calendar and book resources for families going through difficult experiences through Mighty and Bright.

This episode is full of tangible truth about what it means to be a caregiver and advocate. Kelly shares about her daughter's epilepsy diagnosis and how it changed her entire world. After a normal pregnancy and delivery, Adelaide wasn't gaining weight and had low muscle tone which was the beginning of her epilepsy diagnosis. Kelly became involved in CURE Epilepsy's mission and shares how Adelaide's spirit lives on through the work she does today. 

**Trigger warning: Kelly talks about her daughter's death in this episode**

[3:20] Introductions

[4:35] Adelaide's diagnosis

[5:15] Miguel getting the call

[6:00] Moving to Chicago

[7:50] A friend's advice

[10:35] Learning how to find your voice as a medical parent

[14:05] Talking with other parents

[16:40] Adelaide's seizures

[17:31] Having a plan for seizures gave control over the situation

[19:08] Regression after seizures

[21:00] Accepting the reality of the situation

[22:20] Finding empowerment and advocacy through working with CURE Epilepsy

[24:51] CURE Epilepsy's research on Infantile Spasms

[26:24] Adelaide passed away in 2019

[29:00] Adelaide's spirit lives on with the research

[31:15] The forever connection with epilepsy families, clinicians and doctors

[33:31] Learning patience along the way

[36:00] How to connect with Kelly

Connect with Kelly

Website

Twitter

Instagram

CURE Epilepsy 

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Today in [Child Life 101] we are answering the question we get ALL THE TIME:

WHAT IS CHILD LIFE?!

You've asked and now we're answering.

Did you know that SO many of the parents on our podcast haven't ever even met a child life specialist before our interview?!

Our goal during this series is to help people understand what child life is all about by getting rid of any misunderstandings or roadblocks.

• What do child life specialists do?
• Why is play an essential component of child life services?
• Family Centered Care and Child Life Services
• How do you become a Child Life Specialist?
• Where do child life specialists work?
• Why Should Hospitals invest in Child Life Services?
• Challenges and Barriers in the Field
• Wrapping it Up

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

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 want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. 

 Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages.

"Being both a NICU nurse and a mom transformed how I view and support each child and family I work with."

In this episode host Katie Taylor speaks with a NICU nurse and mother, Brittney, who shares her unique perspective on navigating the healthcare system from both sides; a NICU nurse and NICU mama. Brittany reflects on her journey as a NICU nurse who then became a NICU mom of twins, describing how her experiences inspired her to write a NICU-themed children's book and launch a publishing company. Her story highlights the emotional, mental, and logistical challenges of parenting in a NICU environment and how she uses her experiences to support families facing similar journeys.

Key Insights and Lessons:

• Value of Empathy and Shared Experience: Brittney's journey as a NICU mom brought a new level of empathy to her work, allowing her to connect deeply with the parents she now supports.

• Empowering NICU Parents: Brittney emphasizes the importance of empowering parents with hands-on involvement, helping them gain confidence in their caregiving roles despite medical complexities.

• Advocating for Comfort in the NICU: Encouraging parents to bring personal items, create a nurturing space, and advocate for their emotional needs helps make the NICU environment feel more like home.

• Navigating the Unknowns of NICU Life: For Brittney, the hardest part of the NICU experience was the slow, unpredictable progress toward discharge, which she now prepares her patients’ families for, emphasizing resilience and patience.

Resources and Tips:

• Find Brittney's resources at Thrift Publication Company. This includes:

• Her childrens book “Cradles of Courage: Adventures in the NICU” in both pink and blue

• “I am a NICU mom: Coloring Book”

• A NICU journal, “The Journal of Our Story: A Medical Notebook for the Organized NICU Parent.” which is designed to help parents track progress and milestones

• Brittney's Instagram for updates and NICU-related content: @thriftpubco

When parents feel empowered, everyone wins – kids thrive and the care team excels!

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

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan