Inside the Children's Hospital

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

Today I am introducing you to Dr. Jin Lee, a licensed clinical psychologist with experience working in hospitals. She now has her own private practice, and she specializes with teens who have functional neurological or post-concussion disorders. You will hear some great information and feedback from Dr. Lee about how to support teens through chronic pain. In this episode, we talk about… [1:54] Dr. Jin Lee's background [2:51] Working with children and teens with chronic illness [5:57] How Dr. Lee supports her patients [12:04] How patients and their families evolve through working with a clinical psychologist [17:52] Advice for parents of teens with chronic illness Connect with Jin: yourpediatricpsychologist.com docjinlee.com 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 we have another story from a heart mama. I wanted to fit them all into February, but I couldn't quite make it. So we are just creeping into March here with Dimitra and her story. Her son also had transposition of the great arteries (TGA), which we heard about in last week's episode. It's interesting to see where the two stories are parallel and where they differ. 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

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 When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

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 When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

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? When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

Today's 12 minute talk became a 20+ minute talk, and Cara Smith and I discussed how parents can connect with their children after a disaster. Cara is an amazing pioneer in the child life field, and she has valuable tips both for child life specialists as well as for parents in the wake of a natural disaster, a pandemic, or any other stressful event. In this episode, we talk about… [1:41] Cara's background [4:18] Burnout as a child life specialist [6:44] Cara's experience working with children in the wake of a traumatic event [14:13] Supporting caregivers after a disaster [21:39] Giving children the tools to be resilient [24:29] Learning more about working as a child life specialist in disaster relief Connect with Cara: Website Instagram Facebook When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

Today's guest is Maureen, and she found out at her 20 week ultrasound that her daughter had clubfoot. She shares what families have to endure when confronted with a child with clubfoot. You'll hear about B and B (boots and bar), serial casting, surgeries, doctors' visits, and the amount of parent intervention that has to take place in the first four to five years of these kids' lives. In this episode, we talk about… [2:07] Maureen's family and background [4:53] Getting a clubfoot diagnosis in utero [11:39] Processing her daughter's clubfoot diagnosis [13:28] Medical treatment for clubfoot [17:14] Handling the stress of her daughter's diagnosis [23:32] The parental workload involved with clubfoot maintenance and treatment [26:34] Maureen's advice for other parents going through the boots and bar scenario [30:05] Sleep challenges related to clubfoot [31:52] Treatment since the boots and bar [34:35] Maureen's book: Clubfoot Chronicles [40:27] What Maureen's daughter has taught her through this experience Connect with Maureen: Website Instagram Podcast When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

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

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 When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

As we kick off the new year, my guest Christiana is sharing the story of her son's osteosarcoma. Nathaniel has passed away, but his family created Nathaniel's Childhood Cancer Foundation in his name and legacy. Christiana walks us through his experience with osteosarcoma from the beginning, and she shares details about his battles with childhood cancer. In this episode, we talk about… [1:27] Introducing Christiana and her family [3:09] The beginning of Nathaniel's story with osteosarcoma [11:49] Nathaniel's osteosarcoma diagnosis [14:32] How Nathaniel reacted to these sudden life changes [18:52] What was helping Christiana through her son's cancer battle [21:02] Health insurance and hospitals [23:01] Nathaniel's experience after amputation [28:06] Finding out that Nathaniel's cancer had spread [32:13] Getting fitted for a prosthetic and accessing video games post-amputation [35:11] Treatment after radiation [36:19] Nathaniel's last days [40:28] Nathaniel's Childhood Cancer Foundation Connect with Christiana: Website Instagram Facebook When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

It's the 100th episode! Today I'm opening up a bit and letting you get to know more about me as well as more about what a child life specialist does. I will be sharing my thoughts about the holiday season, and then I will answer some questions about child life. In this episode, I talk about… [2:57] The child life perspective on dealing with holiday feelings [7:21] A commonly held belief about my role that I passionately disagree with [8:41] What I wish my younger self knew about being a child life specialist [9:22] What I would buy with ten times my current budget [10:35] Something everybody in my industry should start doing [12:11] The biggest challenge child life is facing today [13:37] How I self-educate [13:56] The topic of a book I would want to write [14:29] Wrapping up the year 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, Kat, is sharing her story as a child and now as an adult with chronic illness. I think it's important for us to change our perspective a bit and hear what the patient has to say. Kat is the community manager at The Mighty, and she has also written two children's books: Migraine and Mia and Surgery on Sunday. She is such a creative spirit, and she gets really honest with us about what it was like being a teenager in the hospital. She shares what her parents did that worked well, what could have been done differently, and how to support teens with chronic illness. In this episode, we talk about… [1:25] Kat's background [2:28] The beginning of Kat's health issues [4:01] What helped Kat when she was in the hospital [5:51] Looking back on Kat's surgical experiences [7:36] Handling physical differences as a teenager [11:30] The vestibular system and its role in the body [13:02] How Kat's parents helped her deal with chronic illness as a teenager [16:57] Coping with pain [19:02] Kat's advice for herself as a teenager [20:30] Connecting with others in similar circumstances 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

Happy December! I'm changing things up a big this week, and sharing my discussion with Meg and Jess from Friends with Fros. I first interviewed them in June 2020, so please feel free to go back and listen to their anti-racism and diversity episode before enjoying this conversation. Meg and Jess host a podcast called Don't Worry 'Bout My Hair, and they also hold dual certifications as child life specialists along with rec therapy and nursing. In this episode, we talk about… [1:47] Life updates all around [6:19] Hospital experiences during the COVID-19 pandemic [12:24] Working as a child life specialist while pregnant [14:53] Processing difficult experiences [18:02] Cultural considerations for families coming from Afghanistan [24:11] Anti-racism in the child life field [26:35] Changes in care for diverse families Connect with Meg and Jess: Podcast 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

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

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

Meet the author, Priscilla Morgan. She gives us exactly what we need to know to start a gratitude journal with kids, without making it a chore. She teaches us how to find the emotional connection with gratitude to make it meaningful, as well as the power of what gratitude can do now and in the future. Gratitude Journal for Kids by Priscilla Morgan is available on Amazon and Barnes and Noble. In this episode, we talk about… [1:00] Priscilla's background [2:45] Helping children navigate the journey of gratitude journaling [9:18] Gratitude for future events [9:54] The power of writing [11:23] How Priscilla encourages journaling with her own daughters When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

Today I get to introduce you to Moira, the host of Surviving the Waiting Room - a podcast based on her experiences from learning how to be an advocate for her teenage children as they started to figure out their health issues. Although they have diagnoses now, there are no exact tests for Celiac Disease or migraines, so Moira has gotten really good at finding people to help give her information. She has a lot of value to share about getting answers for your kids as well as about relating to teenagers and supporting them as they grow into young adults. In this episode, we talk about… [1:29] An introduction to Moira and her family [2:43] Getting a diagnosis of Celiac Disease [4:51] Puberty and health problems [5:44] Experiencing migraines [7:41] Finding answers for unexplained medical issues [11:28] Getting a diagnosis of Chronic Fatigue Syndrome [13:14] Invisible illness [16:50] Treatment for Chronic Fatigue Syndrome [19:04] Supporting teenaged and adult children with medical conditions [21:11] Ehlers-Danlos Syndrome [22:46] Self-care as the mother of children with chronic illnesses [25:18] How these experiences changed Moira [29:49] Considerations when sharing medical information about your children Connect with Moira: 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

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.

The Dad's Perspective: A Son with a Rare Genetic Disease So there is this rock star in the podcast world, and her name is Effie Parks. She hosts a podcast called Once Upon a Gene, inspired by her son who has a rare genetic disease. Effie really focuses on the idea that disability is diversity, and that is an idea I try to put into practice professionally as well as personally. Today, we are going to hear from Effie's husband. If you haven't yet, check out Effie's story. Then head back here to listen to Casey, Ford's amazing dad. In this episode, we talk about… [1:57] What it's like to be married to Effie Parks Casey has nothing but positive things to say about his wife. She is effervescent, she is funny, and she can connect with anyone. When they discovered their son Ford's rare genetic disease, Effie had a new focus. Casey has really enjoyed watching her journey from a hair stylist to a podcaster and public speaker. Effie is so inspiring, and Casey is incredibly proud of her. [4:59] Learning about their son's differences Casey thinks he and Effie had very different experiences during this time in their lives. He describes his response as having "blinders on" when they started noticing some differences with Ford. He has an optimistic streak, and he convinced himself that everything was going to be fine. At four months old, Ford was diagnosed with failure to thrive and they gave him a feeding tube. Casey thought he would put on a few pounds and hit his milestones. A doctor told Effie that Ford had microcephaly, and a nurse made some offhand comments in that appointment that scared her. Casey wanted to get another opinion. He had his blinders on, and Effie was experiencing the flip side. Even though she is all about finding the joy and happiness in life, at that point she was seeing the dark things in what they were saying. [8:53] Coping with learning about Ford's disability While it, admittedly, wasn't the healthiest coping strategy, Casey focused on work. He asked the doctors about the long-term effects of Ford's condition and the chance that they were wrong. Casey was not convinced there were going to be long-term issues, until Ford was diagnosed with CTNNB1 at 16 months old. CTNNB1 is the deletion of a gene that prevents him from creating beta-catenin, a type of protein. It has resulted in global disabilities. Ford cannot sit up on his own, he does not walk, and he does not talk. Once they gave Ford this diagnosis, the doctors shared with Casey and Effie the singular study they had on CTNNB1 syndrome. There were around 32 known patients in the world, and they weren't able to get a lot of information about it. Knowing that, Casey decided to see how Ford developed. Somewhere along the way, he became comfortable with the fact that Ford is Ford. Casey has watched him and has processed the things he is able to do and the things he is not able to do, without focusing on the loss of the things he cannot do. [12:15] Casey's favorite parts about being Ford's dad First, Ford has an unbelievable laugh. It is such a pure expression of joy. If you check out Effie's podcast, Once Upon a Gene, his belly laughing is included in every episode. Casey says that the joy in his eyes and face matches his amazing laugh. Tickling is a favorite activity, and seeing other people happy can bring that out in Ford as well. [16:17] What they want medical care teams to know about Ford's condition Casey and Effie need to make sure Ford's medical team is aware of all the different components of his medical chart. He sees a lot of different specialists and they all have extremely important information that the team as a whole needs to understand. As Ford's parents, they have to bring all the pieces together and make sure everyone is on the same page. Sometimes they also have to educate people on the syndrome itself, because there isn't a lot of information out there about this rare condition. In the beginning, the best source of information Casey and Effie found was a Facebook group for CTNNB1 families. They can bring commonalities they have seen or things that other people have experienced as they have grown older to Ford's medical providers. [19:15] Connecting with other parents of children with rare disabilities Casey shares that he is an introvert, but it's always wonderful to get to know other families with kids who have CTNNB1. All the kids they have met are older than Ford, so they feel like they have seen into Ford's future a bit in some ways. Casey has been able to connect with other dads through Effie's podcast as well as through Facebook. [21:28] The hardest parts about having a child with a rare genetic condition For Casey, the hardest thing was the grief and loss he felt for Ford. It was difficult to let go of the things he wanted for Ford and to accept him the way he was. This is something that can be tough for all parents, but it's extremely difficult and it hurts to learn that your child's life will not be the way you envi

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

Today I'm introducing you to Jenny Hull, a single mom to Josie who just turned 20 years old. Jenny is also the CEO and founder of a nonprofit organization called Once Upon a Room. They are changing the game for kids in hospitals, and we'll get into all the amazing things they do toward the end of our conversation. Jenny is one of the most comforting and compassionate people I've ever had the pleasure of talking with, and her family story is unlike any other - from head-conjoined twins given less than a 1% chance of survival, to adoption, to starting a nonprofit with the help of two incredible teenagers. I can't wait to share this story with you! In this episode, we talk about… [1:12] Meet Jenny Hull [2:40] When Josie and Teresa came into Jenny's life [5:42] Helping Josie to thrive [8:45] Teresa's story [11:41] Discussing the twins' medical issues with Josie over the years [16:31] Staying on top of medical and therapy appointments as a single mother [22:10] The evolution of Once Upon a Room [31:30] The requirements for having your room decked out [36:56] Connect with Once Upon a Room and check out their work onceuponaroom.org instagram.com/onceuponaroom facebook.com/onceuponaroom When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

For today's 12 minute talk, I'm interviewing Dr. Brittany Ferri. She is an occupational therapist, and she has a passion for talking with kids about disabilities. Brittany talks about her program, Social Fly, a social and motor skills curriculum that educates kids ages 5-12 about disabilities. This program is great for parents, teachers, child life specialists, and anyone else who is interested in learning how to talk to children about these topics. In this episode, we talk about… [1:10] Branching out from our professions to broaden our reach [2:19] The Social Fly program [4:29] Key takeaways for parents who want to talk to their children about disabilities [5:39] Integrating occupational therapy into everyday life [7:32] Phrases to use to discuss disabilities with kids who are typically developing [9:15] Having tough conversations with your kids [12:25] How to connect with Dr. Brittany Ferri Dr. Brittany Ferri Occupational Therapist at Simplicity of Health Creator of Social Fly www.simplicityofhealth.com 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 an incredibly rare experience to sit next to someone else who "gets" what you're going through… exactly. That's what support groups are for, right? Well, today you're getting an inside look into what young adults who have experienced childhood cancer are saying in their support group. These amazing individuals were treated at Hershey Medical Center and now share their support group on a live forum through their Life On Pause podcast. Go listen and share ALL of their episodes. We can learn so much by listening. It's an honor to be able to share this episode with you on Child Life On Call, but please go check out the Life On Pause podcast and listen to all of their episodes! This episode was originally published on September 7, 2021: Whether small or large, physical scars often mark the bodies of cancer survivors. In this episode, the Life on Pause crew shares stories of moving through the world with a body and spirit transformed by the experience of cancer.

I connected with one of today's guests, Brady, through our shared alma mater, Penn State University. He has dealt with cancer not once, but twice, and he agreed to come on the podcast with his mother, Lisa. I'm so honored to have both of them on the show to share their experiences, and to continue to spread awareness about this terrible disease during Childhood Cancer Awareness Month. In this episode, we talk about… [2:35] Lisa's and Brady's family [3:30] Brady's cancer diagnosis [9:05] Feeling helpless as a mother [12:03] Brady's memories surrounding his diagnosis [16:15] Handling cancer treatment as the patient and as the parent [24:50] Brady's takeaways about himself and his relationship with his mom [29:54] The bond between Brady's medical caregivers and his family [32:40] Brady's bone marrow transplant [36:53] How Brady supports other families dealing with childhood cancer [41:59] A few of Brady's favorite things [44:42] What Lisa's children have taught her about life 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

I'm so excited to have my friend Starlyn on the show today! She and her husband have struggled with infertility for years, and she is here to share the miraculous story about having one embryo and ending up with four babies. Today we will hear all about what it's like to be pregnant with quadruplets, to be separated from them (and her older daughter) in antepartum, and to be unable to visit them in the NICU due to a natural disaster (the Texas snowstorm in March 2021, plus the COVID-19 pandemic). In this episode, we talk about… [3:52] Starlyn's infertility journey [5:32] Finding out she was pregnant with quadruplets [11:16] Gathering information about fetal reduction [16:28] The antepartum phase during the COVID-19 pandemic [20:48] Preparing big sister to have four siblings [24:24] Mentally preparing for surgery [26:10] Going into labor naturally with quadruplets [28:47] The babies' births and first days in the NICU [34:07] How to speak to moms without shaming [36:13] What Starlyn has learned since having quadruplets Connect with Starlyn: https://www.tiktok.com/@caffsquad https://www.instagram.com/caffsquad YouTube Channel 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 another day in September, which means we are going to be recognizing National Sickle Cell Awareness Month. Sickle Cell Disease is an inherited blood disorder in which blood cells may become sickle shaped and harden, causing a lot of pain. On this episode, I am bringing back Lisa's Story: A Daughter with Sickle Cell Disease. I want to bring to light sicklecelldisease.org's theme for 2021, which is Sickle Cell Matters. This impactful disease can permeate every part of a person's life, from deciding if they will have children and pass on the trait, to dealing with pain crises, and coping with someone passing away due to sickle cell disease. These are all things that Lisa had to navigate as she was coming into motherhood, and as you listen to her story, I want you to really understand that sickle cell matters. It matters to know the facts. It matters to be aware of what is happening. It matters to be supportive to families. In this episode, we talk about… [4:23] Description and prevalence of sickle cell disease [5:24] Lisa's journey to motherhood [15:24] Finding out that her daughter has sickle cell disease [22:29] Learning more about sickle cell disease [26:19] How Lisa handles her daughter's pain crises [34:53] Coping with having a child with sickle cell disease [39:07] Lisa's advice for other parents of children with sickle cell disease [42:51] What Lisa has learned from her daughter [44:31] Lisa's favorite sickle cell disease resources Connect with Lisa: https://www.instagram.com/thelisasykes When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

September is Childhood Cancer Awareness Month. Over the last four-and-a-half years, I have had the opportunity and honor to interview many parents who are a part of a club that they didn't ask to be in. There is a common bond when you can look at another parent and say you have been through exactly what they are going through. I wanted to go through some of the amazing stories we have been able to share, and give you some of the clips and audio tips that we have gotten from so many families on this podcast. This episode includes clips from… [0:55] Tara Garaghty, founder of Making Cancer Fun [4:45] Rosaria, sharing her experience of when her son was diagnosed with cancer [5:38] Gillian, sharing her experience with her daughter's infant leukemia and its long-term effects [10:03] Scott Kramer, who turned his journals from his daughter's hospitalization with a brain tumor into a book, and started an organization called Dancing While Cancering [15:49] Elizabeth Billups, who wrote a book for her daughter called The Puddle Jumper's Guide to Kicking Cancer Along the way, we've been able to share a lot of family stories about dealing with cancer and you can go find all of these and more at childlifepodcast.com, as well as a lot of resources you can print and share for children and caregivers. 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

When it comes to talking about cancer with kids, there is no one that compares to Holly Senn (Certified Child Life Specialist at Inova L.J. Murphy Children's Hospital). We're going to share some tips for parents, teachers, and anyone else who works with children, so that you can approach this serious topic in a really open, kind, and educational way. In this episode, we talk about… [1:16] Holly's experience in the Child Life field [3:19] Working with hematology-oncology families [4:30] Engaging in an open and honest conversation about cancer with a child [7:58] Handling a child's emotional reaction to the conversation about cancer [9:20] Being open and honest about our emotions, as adults [13:31] Wrapping up a difficult conversation [15:40] Resources for dealing with childhood cancer Resources: What About Me? When Brothers and Sisters Get Sick by Allen Peterkin The Puddle Jumper's Guide to Kicking Cancer by Elizabeth Billups (guest on episode 38 of Child Life on Call) Leukemia & Lymphoma Society American Cancer Society American Childhood Cancer Organization The Child Life department at your closest children's hospital! Connect with Holly: https://www.instagram.com/hesenn23 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 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

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

This episode is sponsored by SmileMakers. Use code ONCALL20 for 20% off your order of smile making stickers, toys, patient supplies, and more! Meet Bonnie, her husband and her three adult children. Bonnie calls herself "the replacement kid" after her parents lost their son to Type 1 Diabetes. Because of their history, Bonnie was hyper aware of the signs and symptoms and ended up diagnosing her own son at 5 years old with a urine test strip on the bathroom floor of their own home. 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

Answering parent questions in a 12 minute talk. This episode is sponsored by SmileMakers. Use code ONCALL25 for 20% off your order of smile making stickers, toys, patient supplies, and more! Katie, Certified Child Life Specialist gives specific language to use when talking with your child about an upcoming surgery. +When to bring up the topic before surgery day +Things to do prior to surgery to get prepared +How to address pain, fear and the unknown 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

"For me, it's balancing supporting him in full honor of his disabilities and making sure I am advocating for him AND relating to him as fully capable and strong." Katie, Certified Child Life Specialist talks with mom of four, life coach and podcast host, Kara Ryska. Kara's son was diagnosed with a brain tumor shortly after he turned 18 months old. We talk about what it's like to hear that piece of information in the waiting room of a hospital and how differently people can react in that moment. Kara attributes her faith and her ability to continue to find "tools" to process her emotions have helped her go throughout this journey. 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

Answering parent questions in a 12 minute talk. Katie, Certified Child Life Specialist talks with Christine Bomberger, Music Therapist at Cleveland Clinic Children's. We talk about: +Why music therapy should be a staple in every children's hospital +An example of how "Baby Shark" helped a child through a painful dressing change +How you can seek out music therapists in your community 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

Katie, Certified Child Life Specialist talks with Cortney Given, Life Coach and Host of the Mindset for Medical Moms Podcast. Cortney could have never guessed that the high school paper she wrote HLHS would be given to her second daughter. Having just moved to Hawaii to start a family adventure, Cortney and her daughter had to relocate back to California for medical care. In this episode, we talk about: +How living apart from her oldest daughter and husband to seek medical care was challenging and what their reunion was like +Focusing on gratitude helped her state focused and move forward each day +She used her experience and now helps other moms facing similar situations. Follow along with Cortney and and make sure to follow her on 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. Child Life On Call | Instagram | Facebook | Twitter

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 When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

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: How hearing from medical staff, "I've never heard of this before" is NOT helpful What Jessica wished she would have known 18 years ago about where she is today 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. Guest: Jessica, Released: Jun 30, 2021 When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpot app's has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

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

"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

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

Katie, Certified Child Life Specialist talks with Sara Olsher, mom, cancer survivor, and owner of Mighty and Bright. 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.

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

"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

"We had to learn everything we could because our son's life was literally on the line." Katie, Certified Child Life Specialist talks with Todd and Morgan who just a few weeks after the birth of their first child were faced with the truth that he had a life threatening condition called Biliary Atresia. The cure? A liver transplant. Despite the many challenges they faced, Todd and Morgan talk about: +How they used family to be their "google doctors" +How to find your voice during bedside rounds +Why started a business called Child Life Coffee *Sponsor: 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

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

"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

Mijha and her husband live in Atlanta with their three daughters—ages 9, 5, and 8 months at the time of this conversation with Child Life On Call. Her middle daughter, Violet, was born with challenges that became evident only months after birth, leading the family on a journey through genetic testing, therapies, advocacy, and acceptance. Violet's Early Story Violet spent two nights in the NICU after birth due to jaundice. Though prenatal testing showed no abnormalities, and doctors initially sent the family home without concern, Mijha later learned that Violet's Apgar score had not been typical. At three months, her pediatrician noticed Violet seemed "floppy" and referred the family to a neurologist. Over time, it became clear that Violet's development was delayed. A genetic test revealed a rare triplication on chromosome 15Q—a condition associated with developmental delays, autism, seizures, hypotonia, and significant cognitive challenges. Navigating a Rare Diagnosis Violet's symptoms include severe developmental delays, autism, and seizures. She is able to walk but remains nonverbal. For Mijha, these realities were especially difficult given her deep value for education and academic achievement. Mijha describes the emotional toll of the diagnosis: the guilt she carried, the grief over the family she had imagined, and the ongoing process of shifting her mindset. She emphasizes the added burden of advocating as a Black woman in healthcare—where small details, presentation, and preparedness can make the difference in how a family is treated. Therapy, Growth, and Personality Violet has participated in speech, occupational, physical, hippotherapy, ABA, and school-based therapies. While some therapies were exhausting, others brought out Violet's unique personality. ABA therapy, in particular, allowed Mijha to see her daughter's stubbornness and humor shine through. "I thought I wasn't going to get to know her personality," Mijha says. "But we have—she's stubborn and she thinks she's funny." Lessons in Acceptance Mijha admits she once thought she could never handle parenting a child with special needs. Yet Violet has taught her the true meaning of acceptance: To release the idea of "what should have been." To allow space for anger and disappointment as part of the grieving process. To recognize that joy, connection, and love often look different—but are just as profound. Her advice to parents: Don't put so much pressure on yourself. You're already doing your best. You don't have to be your child's therapist—you just need to be their parent. It's okay to feel mad, sad, or disappointed. Those emotions are part of moving toward acceptance. Beyond Parenting: Jambo Books Inspired by her daughters, Mijha also founded Jambo Books, a children's book subscription service delivering stories that feature children of color in everyday, Western settings. From slaying dragons to playing at the park, these stories show kids that they belong and their identities matter. "I want to be able to send books that teach children that it's okay to be different," Mijha says. "It's just a different way of being in the world." Learn more at jambobooks.com. Memorable Quotes "It's alright to be disappointed. It's alright to be angry. For me, it was one of those stages of grief—letting go of the family I thought I was going to have so I could embrace the family I have." "I had such a monolithic view of people with special needs. I thought I wasn't going to get to know her personality, but we have—she's stubborn and she thinks she's funny." "I want to send books that teach children it's okay to be different… it's just a different way of being in the world."

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"It's been rough. It's like your heart is in two different places." Katie, Certified Child Life Specialist interviews Madeline, a mom from Utah that shares her son's experience with having a rare form of skeletal dysplasia and how her daughter has dealt with their journey. Madeline is host of The Rare Life podcast which was inspired by her son, Kimball after his arrival into the world. In this episode, Madeline walks us through what it's been like for her daughter. Madeline is a fierce, inspiring and talented human who has an ability to connect with other parents and professionals. She reminds others often that "your feelings are valid, and you shouldn't feel shame about them."