We Saved You a Seat: Recent Episodes
Oklahoma Family Network
Oklahoma Family Network focuses on supporting families of children and youth with special needs via emotional support, resource navigation, and ensuring quality healthcare for all children and families through strong and effective family/professional partnerships.
Welcome to the sixth and final release of my conversation with Salena King-Coughlin. As an educator and researcher, Salena digs into the numbers of Oklahoma families who are tied to maternal morbidity. She shares ideas and additional ways to plan or advocate when you truly feel like you have exhausted all advocacy avenues.
I am so grateful to Salena for sharing her story and experience. She is a wife, educator, infant mental health specialist, Oklahoman, and mom who wants to better her community and state for those giving birth!
I know we are both hopeful that by Salena sharing her experience it will provide awareness, education, and conversation to the topic of maternal morbidity and mortality, as well as support for others who have experienced similar birth trauma and postpartum complications.
We don’t have all the answers, but I know we should all feel comfortable becoming part of the conversation and solution to help keep mothers and babies safe throughout pregnancy, delivery, and the postpartum period.
On behalf of Salena and myself I want to say thank you for listening to the hard conversation describing what Salena and her family walked through.
Every mom matters; every life matters!
Part five of Salena’s story continues to focus on her postpartum journey of advocacy, CT scans, readmission, and survival.
Thank you for listening to one story that represents many more. It’s not easy to walk back through the trauma of what happened, and we are incredibly grateful that Salena could share her story with us, and you felt brave enough to listen.
This is part five of six of my conversation with Salena. Thank you for joining us and helping us provide a little context to maternal morbidity and mortality.
Welcome to part four of my conversation with Salena King-Coughlin. In today’s episode, we begin our discussion on the postpartum experience and care Salena had.
Salena has walked us through her pregnancy, delivery, NICU, and now we begin hearing about what it was like for her in the period of postpartum, or what has been termed, "the 4th trimester".
Thank you for allowing us to break down a long conversation into smaller, digestible episodes, each shedding a new light on different aspects of maternal morbidity and mortality.
Welcome back for part three with Salena King-Coughlin. If you haven't had the opportunity to listen to parts one and two, we hope you'll go back and listen to catch up on how we got here. Salena's daughter, Sophia, landed in NICU, and this episode walks us through the emotional stress of this experience from someone who understands and studies infant mental health and attachment.
We are so thankful for Salena sharing her story and helping so many others understand how heavy this is to carry as a parent.
We continue our conversation with Salena King-Coughlin as she shares details about her delivery and some of the chaos that ensues. She shares ways she advocated for herself and her baby, as well as some moments that are hard for many to comprehend.
Salena King-Coughlin is mom to Sophia and wife to Tyler. She has her PhD, Infant Mental Health Endorsement, is a Certified Family Life Educator, and at the time of our recording was pursuing her graduate certificate in public health. Her journey through pregnancy, delivery, NICU, and recovery is the focus of this series tied to Maternal Morbidity and Mortality.
Thank you, Salena, for sharing your experience and helping others learn how to advocate for themselves or the mothers and babies in their lives.
Today we’re diving into an issue which is important to Meske and affects thousands of Oklahoma families, though it doesn’t always get the attention it deserves: early developmental screenings.
Meske provided We Saved You A Seat with lots of statistics:
- 65% of Oklahoma children between 9 and 35 months old are not receiving developmental screenings.
- Early intervention from birth costs ≈ $37,000 per child. Delayed intervention starting at age 6 costs ≈ $53,000. ➝ $16,000 more per child when we wait.
- In a 2016 Quality of Care report, OHCA shared that only 16.4% of children received a developmental screening during their first three years of life.
- The same 2016 report also noted that 56.5% of children aged three to six covered by SoonerCare received recommended well-child visits, compared to 72.2% nationally. https://www.okhca.org/about.aspx?id=22619
- Every $1 spent on early screening and intervention yields up to $17 in societal savings. (Healthcare, special ed, justice system)
When kids are identified early for developmental delays or challenges, it can change the entire trajectory of their lives. They can get the support, resources, and interventions that help them thrive at home, at school, and in their communities. When screenings don’t happen — or happen too late — children and families are left struggling, and often the cost to both the family and the state is much greater down the road.
This conversation is especially important right now, because an interim study on developmental screenings is scheduled at the Oklahoma State Capitol on October 2nd from 9:00 to 11:30 AM in Room 5S2.
This study was introduced by Representative Ellen Pogemiller and it grew from a constituent’s story — Meske and her boys’ journey through the system. Meske knows firsthand why early screenings matter, and today she’s here to share how her family’s experience is shaping policy conversations at the state level.
If you care about giving kids the best start in life, here’s one simple action you can take whether you are able to show your support in person or not- contact your legislator and ask them to attend the October 2nd interim study. The more lawmakers hear these stories and see the data, the better chance we have of building a system that works for families across Oklahoma.
We encourage people to be there for this interim study or watch online-if you're a parent on this journey, an educator, therapist or someone who just wants to learn more, there is something for all of us to learn.
If there is a resource out there, there's a good chance Meske has found it. Meske has been trained in Trust-Based Relational Intervention (TBRI), Partners in Policymaking (PIP), Parent-Child Interaction Therapy (PCIT), Circle of Security and so many others.
In this episode, Meske provides us with a glimpse into her experience with SoonerStart, Early Head Start, the struggle of trying to navigate public transportation, and highlights so many other wonderful resources Oklahoman's have access to, but doesn't always know where to find them or who to ask.
This episode truly mentions and speaks briefly on some of the resources Meske has utilized or knows about and we have provided links to all of them below, should you want to know more.
TBRI: https://child.tcu.edu/about-us/tbri/#sthash.sO4iWECF.dpbs Lilyfield: Lilyfield Empower OKC: EmpowerOKC Circle of Security: Circle of Security International Sunbeam Family Services: Homepage | Sunbeam SoonerStart: SoonerStart Making Sense of your Worth: Making Sense of Your Worth - Halo Project
Meet Meske!!
Meske will provide a voice from the mom, advocate, and survivor perspective at an interim study designed to highlight the need to improve access to developmental screenings to Oklahoma's youngest children, and we want you to know her and understand the why behind her passion.
This is episode one of three, where you get to meet Meske and learn about Meske as a mom, advocate, incredible human and friend!
Note From Meske:
"I’m not an expert in any formal sense. I don’t have a degree or credentials. Life circumstances interrupted every graduation I ever worked toward. What I do have is knowledge, experience, and perspective — a life lived in very diverse circles, literally and figuratively on both sides of the tracks.
My childhood wasn’t bad, but it was heavy. I had access to social circles some people only dream about, but life took me in a different direction. Mental health struggles, relationships, finances, global events — they all influenced my path. And while I’ve made my share of mistakes, most of the time it felt like life kept handing me situations I couldn’t control.
That’s how I came to my personal tagline: “I’m usually the exception to the rule. The medical mystery. I don’t fit in anyone’s box. The only kind of luck I have is bad luck — so I’m not a betting person.”
But over time, I began to realize my life had a bigger purpose. These experiences — the good, the bad, the unfair, the painful — weren’t meaningless. They were shaping me into someone who could see people differently, connect more deeply, and speak honestly about what most people avoid.
Still, things got worse before they got better. An important person in my childhood used to tell me to have “faith the size of a mustard seed,” so I started carrying one with me. But faith didn’t erase the pain. Time doesn’t heal all wounds, it just lets them scab over. I realized I had grown comfortable in chaos because it was familiar.
There were lessons along the way — sometimes only in the form of cliché sayings that became lifelines. And then came the next chapters: marriage, military service, two kids, deployment, divorce, relocation, three more kids, building a business, domestic violence, housing instability, PTSD, developmental disabilities, and trauma stacked on trauma. That’s where I found myself three years ago.
Since then, life has still been full of ups and downs. Healing doesn’t stop life from happening. Kids still need love, bills still come due, people still take advantage when you let them. But the difference is that I finally began prioritizing myself, setting boundaries, and holding on to integrity and accountability. That’s when the people I needed started finding me.
Along this journey, I’ve been trained in TBRI (Trust-Based Relational Intervention), Partners in Policymaking, PCIT (Parent-Child Interaction Therapy), and Circle of Security. I’ve worked on early screenings and even contributed to an interim study. Those experiences gave me language for what I had already lived — and tools to help my kids and others “from hard places” not just survive, but start to heal.
That’s the lens I bring to this conversation: lived experience, layered with training and advocacy, all rooted in a belief that stories — even the messy ones — can change systems and change lives."
Darrian Williams, a mom to two precious girls, shares with us her chaotic experience tied to giving birth to her first daughter.
The State Maternal Health Innovation (MHI) Program is one of many complementary investments made to improve maternal health across the nation. Oklahoma’s State MHI Program has partnered with the Oklahoma Family Network to help improve maternal health by providing OFN an opportunity to share family stories of those touched personally by critical health outcomes during pregnancy or soon after giving birth.
The power of educating others with personal experiences can and will improve future maternal health outcomes for our community, and we thank Darrian for sharing pieces of her journey.
If you or someone you know has experienced health complications or illness that occurred during pregnancy, childbirth, or the postpartum period, and you are ready to share your story for the purpose of awareness and education, OFN would love to connect with you.
The State Maternal Health Innovation Program is one of many complementary investments made to improve maternal health across the nation.
Oklahoma’s State Maternal Health Innovation Program has partnered with Oklahoma Family Network to help improve maternal health by allowing OFN to share family stories of those touched personally by critical health outcomes during pregnancy or soon after giving birth.
Oklahoma Family Network would like to thank this sweet mother as she shares her experience with a lupus diagnosis, pregnancy, and premature birth.
If you or someone you know has experienced health complications or illnesses that occurred during or after pregnancy, childbirth, or the postpartum period, and you are ready to share your story for the purpose of awareness and education OFN is ready to help.
Thank you for listening in today.
The State Maternal Health Innovation Program is one of many complementary investments made to improve maternal health across the nation.
Oklahoma’s State Maternal Health Innovation Program has partnered with Oklahoma Family Network to help improve maternal health by allowing OFN to share family stories of those touched personally by critical health outcomes during pregnancy or soon after giving birth.
Oklahoma Family Network would like to thank Chrissy for sharing her experiences surviving postpartum cardiomyopathy and the impact it has had on her health.
Understanding signs, symptoms, and treatment is important from a self-advocacy perspective as well as healthcare team member.
If you or someone you know has experienced health complications or illnesses that occurred during or after pregnancy, childbirth, or the postpartum period, and you are ready to share your story for the purpose of awareness and education OFN is ready to help.
Thank you for listening in today.
Robyn and her family have the unique opportunity to highlight and honor two big topics in September. September is both Hydrocephalus Awareness Month and NICU Awareness Month, and this sweet family helped bring conversation and education to both subjects in our podcast release today. Birth trauma and NICU experiences can be difficult to process. We are always thankful for those willing to share their experiences to educate and encourage others. #NICU #NICUAwarenessMonth #Hydrocephalus #HydrocephalusAwareness #HydrocephalusAwarenessMonth #WeSavedYouASeat
Welcome September and Hydrocephalus Awareness Month! Oklahoma Family Networked partnered with the sweetest mom to share her experience with her daughter's diagnosis of Hydrocephalus in utero. Throughout the month, we will share pieces of her journey through diagnosis, delivery, NICU stay, resources, and community support, as they faced an uncertain future with their precious baby girl, Eliza! You will absolutely love meeting Robyn, her husband Travis, and daughter Eliza this month, and I know all who listen will hear a testimony of faith and strength as they walked an unknown and fearful path.#HydrocephalusAwareness #HydrocephalusDiagnosis #OurJourneyWithHydrocephalus #EpisodeOne
Thank you for joining us for the second episode with guests Matt and Laura Samargis, as we continue to highlight and honor this incredible family during Deaf-Blind Awareness Month. (You can listen here to Episode One)
In this episode, Matt and Laura share impactful moments and resources for living in rural Oklahoma.
What an honor to meet and visit with Matt and Laura and know you will enjoy hearing more from them today.
Special Resources:
Active learning spaces (Activities for deafblind learning and movement)
Paths to literacy (educational resources for deafblind)
Oklahoma library for the blind (Free educational resources for deafblind) Communication Matrix (Assessment for non-verbal communication) Perkins school for the blind Christian Roman Lantzy (Cortical Visual impairment) Jane Korston (communication devices) NRCpara (national center for paraeducators, interveners, and more) Central Michigan University (Online intervener classes)
Beth Kennedy-CMU deafblind department director
Matt and Laura's Samargis, a family from rural Oklahoma share with us today some of their journey as parents who have a child in the deaf-blind community. Today we get a glimpse into their incredibly busy lives and I know you will enjoy hearing their unique testimony and learning more from them.
They share some of their favorite resources with us today, and you can find their links below:
Oklahoma Deaf-Blind Technical Assistance Project
Oklahoma School for the Blind
National Center for Deaf-Blindness
Oklahoma School for the Deaf
As we honor and celebrate Deaf-Blind Awareness Month, I'm excited for people to hear from Lisa Lawter with the Oklahoma Deaf-Blind Technical Assistance Program.
Lisa is passionate about helping and serving families who have children with unique medical needs, and this is a resource we want to celebrate and share.
https://www.ou.edu/education/centers-and-partnerships/deaf-blind-project
Lisa Lawter, Ph.D.
Project Director
Oklahoma Deaf-Blind TA Project
University of Oklahoma
Department of Educational Psychology
820 Van Vleet Oval, Room 321
Norman, OK 73019
405.325.0441
405.325.6655 fax
Friend us on Facebook at Oklahoma Deaf Blind Technical Assistance Project
Lora Roberts, Eastern Regional Coordinator for Oklahoma Family Network, helps us understand Sibshops for brothers and sisters who have a sibling with special needs. She shares more about her Tulsa Sibshops experience and what families can expect when they bring their child.
Understanding healthy boundaries in our relationships is essential to taking care of ourselves. Join us for a class as we work through misconceptions and proven strategies that help you set healthy boundaries for yourself to help in all of your relationships.
If you'd like to watch the training and view Lauren's slides, please joining us on our YouTube Channel: https://youtu.be/xuz2yg8P8S0
Celebrating Rare Disease Day with double the podcast release today!
As we continue to celebrate and honor the day set aside to bring awareness to our incredible families with a rare diagnosis, I want to thank Sky Collins for sharing in our previous release about Oklahoma Rare. She continues on to share more about the personal diagnostic journey their family experienced as they tried to advocate and find answers for their youngest daughter, Presley.
We also thank Presley for allowing her mom to share pieces of her diagnostic journey. And anyone interested can purchase Presley's book here:
https://www.makebelievebookcompany.com/product-page/better-than-a-letter-magical-mailing-kit#OklahomaRare #MalanSyndrome #OKRare #RareDiseaseAwareness #UltraRareDisease #EveryLifeFoundation #PartnersInPolicy #SB207 #SenatorCarriHicks #RareDiseaseDay #RareDiagnosis
Every year, on the last day of February, the world comes together to recognize Rare Disease Day—a global initiative dedicated to raising awareness for rare diseases and the millions of people affected by them.
Today, We Saved You A Seat is incredibly honored to share a few things Oklahoma is doing to help bring awareness, advocacy, conversation and support to and for those impacted by a rare diagnosis.
Today, Sky Collins is here to discuss the incredible community group, Oklahoma Rare, of which she is a co-founder and shares ways you can get involved.
Addition Resources Mentioned:
https://everylifefoundation.org/rare-advocates/virtual-youth-hill-day/#OklahomaRare #MalanSyndrome #OKRare #RareDiseaseAwareness #UltraRareDisease #EveryLifeFoundation #PartnersInPolicy #SB207 #SenatorCarriHicks #RareDiseaseDay #RareDiagnosis
In this presentation, we will discuss how to set goals for positive change for all ages while still having a self-compassion focus. This can help us break the pattern of shame about things we want to change and instead apply simple but profound principles for effective growth.
If you would like the presentation handouts please email:
erin-parks@oklahomafamilynetwork.org
Sometimes we are so focused on behavior that we don't realize how powerful purposeful relationships can be in responding to negative behavior and preventing things from ever happening. We will look at the work of Dr. Lori Desautels and her book Connections over Compliance to learn brain-based strategies for connecting with kids and responding to and preventing frustrating behaviors.
Welcome to National Wear Red Day 2025!
After finally getting a diagnosis of Postpartum Cardiomyopathy, Chrissy learns what her future looks like and shares with us how she processed this unexpected diagnosis and what she did to survive as a mom who needed lots of help from doctors, family, and friends.
To learn more from the American Heart Association about Postpartum Cardiomyopathy (or Peripartum Cardiomyopathy) visit the American Heart Association's website.
On December 11th, 2024 Chrissy Cleary proudly announced, "awww my Heart Failure is 18 - an adult."
Chrissy Cleary is mom to three children, and after she delivered her 3rd baby, she developed some scary symptoms that some medical professionals identified as "normal" and/or wrote off as anxiety.
In this episode of We Saved You A Seat, Chrissy describes truly easy and wonderful pregnancies, her dreams of motherhood, and having a large family. Her dreams were interrupted soon after the birth of her third child.
Thank you, Chrissy, for sharing your story of strength with us and allowing us to honor you this February and bring awareness and conversation to Heart Health during and after pregnancy.
Being a parent or a caregiver can be exhausting. We can become so overwhelmed by the never-ending list of things to do that we lose sight of taking care of ourselves and can experience burnout. Together we will complete a survey of how we are doing with self-care and build a practical plan to help us take better care of ourselves so we can also take care of the important people in our lives and avoid burnout.
Although this session was recorded in December, it is full of great information reminding us compassion fatigue is very real and takes a toll on those who are caregivers.
Happy World Down Syndrome Day (3/21)!!
World Down Syndrome Day (WDSD), March 21st, is a global awareness day officially observed by the United Nations since 2012. This day encourages conversation and education to help end the stereotypes and encourage inclusion.
Today, Carter's Mom and Sister highlight some of the amazing resources and advocacy they have been involved in as they support Carter and others with Down Syndrome!
Tomorrow is World Down Syndrome Day, and TODAY we want you to meet Carter and his family in our first release of our two-part series highlighting and celebrating those with Down Syndrome.
Today's conversation walks you through some of the emotional moments tied to learning Carter would have Down Syndrome, as well as, his delivery, NICU stay, his first surgery, and some thoughts from his sibling, Cassie.
Carter has his very own TikTok channel: https://www.tiktok.com/@carters_kitchen18
Part two of our conversation with Charity and Cassie will be released tomorrow as we celebrate World Down Syndrome Day!
WorldDownSyndromeDay #CrazySocks #DownSyndromeAssociation #DSACO
Oklahoma Family Network is thankful to have you join us today for the final release in this series and conversation with Charles, to help us celebrate what makes Charles III unique as we celebrate Rare Day today!!!
You will hear Charles brag on his daughter Zion and speak to the sibling relationship that Zion has with her little brother, Charles III. He also discussed tips he has for those in the community on engaging him and Charles III in conversation when you see them out and about. And last, but certainly not least, we wrap up our great conversation with Charles putting the disability label away and tells us about his incredible son and his big personality!
Charles has big goals and dreams; and wants others to know about SibShops through SoonerSuccess.
Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions. With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities. Rare disease statistics to share with others:* While each disease may be rare, collectively, they impact a large number of people. * 300 million people worldwide live with a rare disease. * There are over 6000 different rare diseases. * 72% of rare diseases are genetic. * 70% of these rare genetic diseases begin in childhood.
CdLS #ShareYourColors #Rare #LittleLighthouse #SoonerSuccess #SibShops
Welcome to the 3rd episode of our conversation with Charles. We continue to bring education and support to others leading up to February 29, where we celebrate the uniqueness of being rare! (rarediseaseday.org). Today we discuss Charles III's transition from Little Lighthouse into public school and the partnerships that helped make the process as smooth as possible. Charles also educates us from a parent's perspective about Cornelia de Lange Syndrome and what he wishes everyone knew about CdLS. His words and expertise from a parent's perspective help shed light on this rare syndrome.Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions. With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities. Rare disease statistics to share with others:* While each disease may be rare, collectively, they impact a large number of people. * 300 million people worldwide live with a rare disease. * There are over 6000 different rare diseases. * 72% of rare diseases are genetic. * 70% of these rare genetic diseases begin in childhood.
CdLS #ShareYourColors #Rare #LittleLighthouse
Thank you for joining us for episode 2 (of 4) with Charles Moore as we discuss some of the most impactful people in his life as he began the advocacy journey on behalf of his son, Charles III. Today's episode highlights his quest to learn as much as he can about Cornelia de Lange Syndrome (CdLS), and how incredibly helpful the cdlsusa.org website and organization has been in that search for knowledge and obtaining advocacy tips. Charles also shares with us the role Little Light House in Tulsa, OK had on him as a parent to a young child with special health care needs. Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions. With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities. Rare disease statistics to share with others:* While each disease may be rare, collectively, they impact a large number of people. * 300 million people worldwide live with a rare disease. * There are over 6000 different rare diseases. * 72% of rare diseases are genetic. * 70% of these rare genetic diseases begin in childhood.
#Rare #CdLS #Syndrome #Fatherhood #LittleLightHouse
Oklahoma Family Network's We Saved You A Seat had the incredible privilege to sit down with Charles Moore. Our fun, education, and meaningful conversation will be released fully in 4 separate episodes as we prepare to celebrate and honor the uniqueness of 300 million people worldwide who live with a rare disease on February 29th. We introduce you to Charles Moore. He is a father to two children: a 13-year-old son, Charles III, who has Cornelia de Lange syndrome (CdLS), and a 16-year-old daughter, Zion. He has independently raised his children for most of their lives. In this first episode of our 4-part release, Charles visits with us about his OKLEND (Leadership Education in Neurodevelopmental and Related Disabilities) experience. He also takes us back through early ultrasounds, delivery, and the diagnostic process for Charles III. Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions. With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities. Rare disease statistics to share with others: * While each disease may be rare, collectively, they impact a large number of people. * 300 million people worldwide live with a rare disease. * There are over 6000 different rare diseases. * 72% of rare diseases are genetic. * 70% of these rare genetic diseases begin in childhood.
#Rare #CdLS #Syndrome #Fatherhood #OKLEND
Are you being kind to yourself? Lauren Alvarez walks us through Mindful Self-Compassion and some amazing training she provided to Oklahoma Family Network families. I know you will be encouraged by her words and knowledge.
Lauren introduces us to a self-compassion test, and we encourage you to take the no right or wrong answers test to learn a little more about yourself and how you can become aware of your own self-compassion. Take the Self-Compassion Test
Welcome to Prematurity Awareness Month and World Prematurity Day! Prematurity Awareness Month is observed every November, with World Prematurity Day on November 17th, to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. An estimated 15 million babies around the world are born premature each year and more than one million of them do not survive their early birth. Today, We Saved You A Seat, visits with Kayla Pitts, mom to Zetta who was born at 26.1 weeks gestation. Her conversation (broken into 3 parts) highlights maternal mental health in the perinatal and postpartum period, her preterm delivery, breastfeeding, and the treatment options she pursued for her health and family. Part One: https://mcdn.podbean.com/mf/web/367x5m/Kayla_Pitts9pb0m.m4aPart Two: https://mcdn.podbean.com/.../Kayla_Pitts_Part_2br217.m4a
Thank you for joining us for part two of Kayla's journey with premature birth as she shares her experience where she highlights some very specific emotions and experiences tied to Zetta's birth.
Welcome to Prematurity Awareness Month!
Prematurity Awareness Month is observed every November, with World Prematurity Day on 17 November, to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. An estimated 15 million babies around the world are born premature each year and more than one million of them do not survive their early birth.
Today, We Saved You A Seat, visits with Kayla Pitts, mom to Zetta who was born at 26.1 weeks gestation.
Her conversation (broken into 3 parts) highlights maternal mental health in the perinatal and postpartum period, her preterm delivery, breastfeeding, and treatment options she pursued for her health and family.
The Author of Leon The Brave Little Lion joins us today to discuss how his experiences with childhood cancer gave him a purpose and vision to support others who are part of his childhood cancer circle.
OFN's conversation with Andrew will leave you feeling encouraged, educated, and inspired to love and support families in unique and beautiful ways.
Part three of our conversation with Jade shares the importance and impact that local non-profits have on families. You will hear Jade share just a little about some organizations that made big impacts on their family:
The Kids Korral, KClub, Wyatt's Wings, and Art with Heart are a few examples of organizations that touched the Campbell's lives and will continue to leave an impact on other families fighting childhood cancer.
You will also hear an update on how Haddie is doing now; and we never want to leave out siblings. Siblings who are being touched by a brother or sister fighting cancer, play an important role and are impacted as well; and this conversation shares some of the real and raw moments involving siblings in that care.
On behalf of the Campbell Family, thank you for listening today, supporting them, and praying for Haddie (and others) as childhood cancer impacts so many in our communities.
Part two of We Saved You A Seat's conversation with Jade highlights the amazing community Jade and her family have surrounding them. Hearing how Jade's family, friends, and community surrounded and supported Haddie will give you ideas and inspire you to help others impacted by childhood cancer.
Today you have the incredible opportunity to meet Jade Campbell and hear pieces of their daughter's journey and diagnosis of B-Cell Acute Lymphoblastic Leukemia.
As we continue to honor families who have experienced or are experiencing the childhood cancer journey, today we are reminded to celebrate, encourage, and cheer on the families who are fighting for a healthy future.
We are releasing our conversation with Jade in three parts today and we know all who hear, who are fighting for their healthy future, will feel encouraged and inspired...
Part One: Diagnosis
Part Two: Friends, Family and Community Support (Ideas to help others)
Part Three: Resources, Sibling Support, and Update on Haddie
The Mack Impact | The Mack Impact
This release is one that openly shares and discusses the truth of pediatric oncology and the grief, no family should ever have to experience. It is important to help raise awareness, support, and educate our community that when this happens to a friend of the cousin to a neighbor who lives three doors down from you, you can help guide them to a resource tied to people who will love them and help carry them through the hard.
Thank you for being a part of this community and sharing stories of strength.
We are well aware of the reasons people don't discuss pediatric cancer... It's hard...
It's hard to think about. It's hard to think about any child experiencing cancer. It's hard to think about the possibility of your child experiencing cancer. We can become overwhelmed with grief and sadness as we imagine these things happening to others, especially children, and then deep sadness when we have to face the truth that it does happen, and when it happens, some don't survive.
Today we get to meet Mackenzie Asher, through the eyes of her daddy... You hear the hard, the love, and the strength!!
Mackenzie's family started a 501(c)(3) nonprofit organization in her honor, and you won't want to miss some of the amazing things they get to do for Oklahoma Families who are fighting life threatening illness. Things these incredible kids and families wouldn't get to do without their help!
Visit: Mackenzie’s Story | The Mack Impact today!!
Our guest today is Long Tran with F.A.I.T.H. KIDS, Inc. (https://faithkids10.org/).
Long, with his wife, Mary, started a 501c3 nonprofit organization, after their family lived through the devastating experience of their oldest having leukemia to help others. In today's podcast, you will hear pieces of their journey and learn more about how you might be able to help children and families living with cancer and other life-threatening illnesses.
F.A.I.T.H. KIDS hosts an annual bowling tournament to help raise funds for families Fighting Against Illness To Heal (F.A.I.T.H KIDS)... This year's tournament, on Saturday, September 30, 2023, will be held in Edmond, OK at Bowlero Edmond (3501 S. Boulevard, Edmond, OK 73013) and truly there is something for everyone!!
As we help kick off Childhood Cancer Awareness Month, we hope you will find FAITH KIDS, Inc on Facebook and other social media platforms, follow, and share their information so that we can unite to bring awareness, education, conversation, and support to others who might be facing life threatening illness.
Lauren talks us through logical consequences, the energy drain, and working through different perspectives of discipline and why we do what we do as parents.
Participants will explore what it means to accept, love, and support our children, as well as how we came to arrive at our own norms for parenting and family. Participants will have brief opportunities to identify motivations and goals, and areas for possible growth, because it can always be better.
This workshop is designed to help you understand why your teen may be using substances and what you can do to help them make better choices. Among other skills you'll learn how to have better conversations with your child and use behavior management techniques that can make a big difference.
Presented By: MaryAnn Badenoch
Have a loved one with a mental health condition? Feeling alone? Don't know what resources are out there? Grieving the loss of the dream you had for you and your loved one? Come learn about "The Best Kept Secret" of Family Support Groups that are facilitated by someone with personal experience!
Erin Page, with MetroFamily which is Oklahoma City's top resource for family fun is our presenter/guest today! Get the scoop on the best FREE holiday and seasonal events for families in the metro, as well as sensory-friendly attractions and resources. Plus, learn about free resources focused on family mental health offered by local and national experts through MetroFamily.
Lisa Buck has been involved in the foster/ adoption world for almost 20 years as a foster and adoptive parent as well as serving as the first Foster Care Ombudsman in the State of Oklahoma. Lisa will share both her personal journey as well as some lessons learned as the Ombudsman in caring for Oklahoma's most vulnerable children and families.
Kodey Toney is a father, advocate, and director of the Pervasive Parenting Center. The presentation is filled with stories of his son Konner and their journey through navigating the system. Attendees will learn what Autism is, the behaviors related to Autism, and what to do if they feel that their child has Autism.
Mind your manners and be polite! But really what does that mean when words change all the time like bad is good and good is good? This session will walk through disability etiquette, and respectful language, and even touch on the scrambled terms that look like alphabet soup.
Parents deeply love their children, yet not all children feel that unconditional love and care. Join us for a practical and informative class about the Five Loves Languages of Children based on the book by Dr. Gary Chapman and Dr. Ross Campbell. We will learn how to use the knowledge of the Five Love Languages to connect with our children on a deep level and prevent and respond to discipline issues. This new knowledge can also be applied to a variety of relationships and friendships to improve your connections with others.
Keynote
5 Love Languages of Children
Presented By:
Lauren Alvarez
Are you being kind to yourself as the holidays approach? Lauren Alvarez walks us through Mindful Self-Compassion through some amazing training she provided to Oklahoma Family Network families, and I know you will be encouraged by her words and knowledge.
She introduces us to a self-compassion test, and we encourage you to take the no right or wrong answers test to learn a little more about yourself and how you can become aware of your own self-compassion. Take the Self-Compassion Test
Oklahoma Family Network had the incredible opportunity to visit with Cheryl Step MS, LPC, NCC, and NCSC to discuss creating resilience through trauma in our personal and professional roles; and even how each of us can have an impact on those around us.
Cheryl has extensive knowledge regarding Adverse Childhood Experiences (ACEs). She displays expertise when presenting and training agencies' staff about developmental trauma and its effects on the brains and behaviors of children and family systems. She has experience presenting to large groups and training multiple lessons that build a foundation for trauma-informed care. She also has proficiency in consulting with agency leadership and coaching staff to use researched strategies and interventions to increase resilience. Cheryl brings real world experience and stories to her training from her 17 years of experience working in public schools as a counselor. She is certified in Traumatic Stress Studies by The Trauma Center and Trauma Research Center, is certified in ARC (Attachment, Regulation, Competency) Trauma Treatment for Children and Adolescents, and has completed training with Laura Porter and Dr. Rob Anda of ACE Interface to become a NEAR (Neurobiology, Epigenetics, ACEs, Resilience) Science trainer in Oklahoma. She is a Licensed Professional Counselor and a Nationally Board-Certified Counselor and School Counselor. She holds a master's degree in Counselor Education from Syracuse University. (creatingresilience.org)
Creating Resilience, LLC (creatingresilience.org) exists to train groups of individuals to respond and support people with trauma histories and Adverse Childhood Experiences (ACEs). Creating Resilience uses trauma-informed strategies to build safe environments, calm and focused behaviors, and increase competency and executive functions. Research shows that the power of one strong adult relationship is the key ingredient in overcoming adversity. Creating Resilience will foster strong relationships.
ACEs #CreatingResilience #Trauma #TraumaInformed #Resilience #AdverseChildhoodExperiences
Below you will find several videos from her YouTube channel emphasizing her work and sharing knowledge. 1st video in the Coming Back with Compassion series: Awareness: https://www.youtube.com/watch?v=hFCJ17kJCQo&list=PLou3lrYybv9B8NWJACqEL6pLH5wv9sbeU&index=1&t=3s 2nd video in the series: Adjustment: https://www.youtube.com/watch?v=n_lJI8j0SLs&list=PLou3lrYybv9B8NWJACqEL6pLH5wv9sbeU&index=2&t=66s 3rd: Action: https://www.youtube.com/watch?v=aeVYqTzu2QI&list=PLou3lrYybv9B8NWJACqEL6pLH5wv9sbeU&index=3&t=1s Cheryl Step, MS, LPC, NCC, NCSCTrainer/ConsultantCreating Resilience, LLCcreatingresilience.org405-612-9432cstep.cr@gmail.com
Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason. The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities. Ellyn's personal journey takes her to candidacy-level advocacy, and you will hear about some of that today.
Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area.
Understanding and explaining to parents what ABLE accounts are, is only one of Ellyn's great talents!!
In today's podcast, Ellyn educates everyone on what OK STABLE accounts are and how to use them. She also addresses the need for continued advocacy work in Oklahoma to keep ABLE accounts a top priority for families with children with disabilities as they plan for their child's financial future.
Ellyn also shares, how her experience and graduating from Catholic school provided desire and drive to help her children receive the same educational opportunities.
Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason. The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities. Ellyn's personal journey takes her to candidacy level advocacy, and you will hear about some of that today.
Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area.
Part two of our conversation with Ellyn has highlights and conversations focused on big advocacy work she's done in the community and with schools. Celebrating the 25th Anniversary of the Americans with Disabilities Act as well as her experience receiving her education from a Catholic school and having that desire for her children as well.
25th ADA Celebration Walk Highlights:https://www.oklahoman.com/picture-gallery/news/local/oklahoma-city/2015/07/26/25th-year-of-the-ada/8769003007/
Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason. The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities. Ellyn's personal journey takes her to candidacy level advocacy, and you will hear about some of that today.
Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area.
Oklahoma Family Network is incredibly happy to share the first episode of a three-part conversation with Ellyn Hefner. After the birth of her son, William, and learning how to be the best mom and advocate for William, Ellyn, shifted careers to become a family support partner for the Oklahoma Family Network.
She became more involved at the policy level after graduating from Partners in Policymaking and she served on the Interagency Coordinating Council for Sooner Start as a member and Chair.
She has spent the last 18 years as a caregiver and professional dedicated to helping Oklahoma parents find hope and resources for their children with IDD and in today's podcast with Ellyn, you will hear about foundational experiences which have opened the door, which has led her to where she is now.
We continue our conversation with Michelle Weaver about her journey after delivering her son Drew at 26 weeks and spending 99 days in the NICU. Today we discuss how she got through the holidays and their time at home, which brought its own challenges.
You will love hearing about Drew's two big sisters and feel encouraged by Michelle's story!!
Thank you, Weaver family, for sharing pieces of your story with us and pictures from Drew's First Christmas!!!
Today you have the incredible privilege of meeting a beautiful mom who celebrates so much in the month of November. Her experiences within this last year have her embracing Prematurity Awareness Month, and that combined with Native American Maternal Health Month and Adoption Awareness Month, she has big items to celebrate throughout all of November.
I know you will absolutely fall in love with the Weaver family as she shares about their premature delivery last year with their son Drew.
You will also hear her mention a preemie baby book which she purchased soon after his birth, where she documented many things. You can find that book here: My Preemie Baby Book - Etsy
Oklahoma Family Network is incredibly happy to share the first episode of a three-part conversation with Ellyn Hefner. After the birth of her son, William, and learning how to be the best mom and advocate for William, Ellyn, shifted careers to become a family support partner for the Oklahoma Family Network.
She became more involved at the policy level after graduating from Partners in Policymaking and she served on the Interagency Coordinating Council for Sooner Start as a member and Chair.
She has spent the last 18 years as a caregiver and professional dedicated to helping Oklahoma parents find hope and resources for their children with IDD and in today's podcast with Ellyn, you will hear about foundational experiences which have opened the door, which has led her to where she is now.
We are so excited to welcome Samantha Beckstrom to the podcast today. You will hear her journey through an extremely preterm premature rupture of membranes (PPROM) and NICU Journey.
Thank you, Samantha, for sharing your journey with two NICU babies and helping others find strength as they experience NICU.
Stargardt Disease is a rare genetic eye disease that happens when fatty material builds up on the macula, the small part of the retina - which is needed for sharp, central vision. Vision loss usually starts in childhood, but some people don't start to lose their vision until they are adults (Stargardt Disease | National Eye Institute (nih.gov)
Today you will hear one family's journey into discovering their son, Gabriel, has Stargardt Disease. Gabriel's Mom, Melissa Weathers, does a beautiful job walking us through a two-year timeline, trying to figure out what was happening with Gabriel's vision.
Melissa also highlights some of the amazing people and resources they've been introduced to through the past several years, as well as shares her experience transitioning Gabriel to public school and establishing an IEP with his new school.
Resources Mentioned: Two Blind Brothers (https://twoblindbrothers.com/) New View Oklahoma (https://nvoklahoma.org/) OWL (Oklahomans Without Limits) Camp: (https://nvoklahoma.org/community-programs/owl-camps) Foundation Fighting Blindness (https://www.fightingblindness.org/chapters) Oklahoma Parents Center (https://www.okdrs.gov/guide/oklahoma-parents-center) Bookshare (https://www.bookshare.org/cms/) Dean McGee Eye Institute Pediatric Ophthalmology (https://dmei.org/services-specialties/pediatric-ophthalmology-strabismus/) Dr. Michael Siatkowski (https://dmei.org/providers/r-michael-siatkowski/)
Stargardt #ChildrensEyeHealth #OWLCamp #TwoBlindBrothers #NewViewOklahoma #FoundationFightingBlindness #OPC #OklahomaParentsCenter #ChildhoodMacularDegeneration #CCTVMagnifier #IEP #VisualImpairment
Happy Father's Day to the very special dads out there!! This podcast is for YOU!!
This podcast is certainly for everyone, but especially our DADS!!! Today we have as our guest, Jeremy Warren, Executive Director, of Dads on Special Assignment or DOSA.
Jeremy hosts a variety of activities, groups, and gatherings designed to help remind dads they are not alone in their journey of parenting a child with special health care needs or disabilities. Dads On Special Assignment (DOSA) started with Jeremy and a few dads in his church as a ministry and has expanded into the community to help support the amazing dads who have been given a special assignment.
We are thankful for Jeremy and what he does to support dads and we are sure you will want to hear his words and heart today! You will hear his passion, purpose and a little about, Landon, his inspiration.
Dads On Special Assignment: https://dosausa.org/
On October 3, 2019, Ryan and Lindsay Jones delivered their precious daughters Reese and Ryleigh at just 26 weeks gestation.
While Reese was rushed to the NICU, weighing just 1 lb, 14 oz; her sister, Ryleigh was held and loved on for the next few hours by her parents, who said hello and goodbye to their sweet girl within those short three hours of her life.
Today you hear the beautiful words of Lindsay!! You hear her story and desire to bring awareness, conversation, and support to others who may be walking through this very difficult journey of twinless-twin-loss.
We are so thankful for Ryan, Lindsay and their girls!!
Twins #ReeseAndRyleigh #26Weeks #MicroPreemie #PPROM #PretermPROM #PrematureRuptureOfMembranes #InfantLoss #TwinlessTwin #Support
We are certain you will truly enjoy today's conversation! As we continue our discussion on Maternal Mental Health, we highlight today, how you can bring awareness and support to your sister, friend, cousin, brother and others in your life who might be experiencing the number one complication from pregnancy and birth, a perinatal mood and anxiety disorder.
James frequently says, "It's so important to reduce stigma and talk about mental health as much as physical health; it's not "them" it's your sister, friend, neighbor... Not them, but "us". When you have any new parents in your life, reach out and ask not only about the new baby, but how are they? Can you schedule time to hold the baby so mom can take a break? Could you set times to call or text each week so they can talk to another adult and feel more like themselves?"
James shares with us how we can get involved in our community and provides some wonderful tools which are available through the Oklahoma State Department of Health Maternal Child Health website.
Thank you for partnering with us to bring awareness, conversation, support, and education this week on the subject of Maternal Mental Health.
Community Engagement Opportunities:
OKC PSI Climb Out of The Darkness Walk: https://climbout2022.causevox.com/team/team-okc
Tulsa PSI Climb Out of The Darkness Walk Info: https://climbout2022.causevox.com/team/team-tulsa
Resources Mentioned:
Postpartum Plan: https://oklahoma.gov/content/dam/ok/en/health/health2/aem-documents/family-health/improving-infant-outcomes/maternalmentalhealth/Postpartum%20Plan_fillable.pdf
Mothership Rising App: https://www.mothershiprising.com/how-it-works/
Family Video Stories from Oklahoma: https://vimeo.com/showcase/6597453/embed
Maternal Mental Health Website: https://oklahoma.gov/health/family-health/improving-infant-outcomes/maternal-mental-health.html
Postpartum Support International: https://www.postpartum.net/
Oklahoma Perinatal Quality Improvement Center: https://opqic.org/
The Blue Dot Project: https://www.thebluedotproject.org/mmhweek2022
MaternalMentalHealth #PSI #BirthingComplication #OPQIC #MCH #MomsMindsMatter #COTD #ClimbOutOfTheDarkness #MMHWeek2022 #MakingOverMotherhood
May is Mental Health Awareness Month and Maternal Mental Health Awareness Week is Monday, May, 2 - Sunday, May 8, 2022.
Today, as we kick off Maternal Mental Health Awareness Week, We Saved You A Seat visits with James Craig, MSW, LCSW and Public Health Social Work Coordinator for the Oklahoma State Department of Health in Maternal Child Health.
In part one of our two-part podcast release this week, James helps us define what Maternal Mental Health is and gives us a clear understanding of when we should seek additional support from professionals who specialize in perinatal mood and anxiety disorders (PMADs).
Thank you, James, for providing us with information today that helps us understand maternal mental health and equips us with the tools to know where to find the best types of support for the #1 complication of pregnancy and childbirth.
Resources Mentioned:
Maternal Mental Health Website: https://oklahoma.gov/health/family-health/improving-infant-outcomes/maternal-mental-health.html
Postpartum Support Internation: https://www.postpartum.net/
Oklahoma Perinatal Quality Improvement Center: https://opqic.org/
The Blue Dot Project: https://www.thebluedotproject.org/mmhweek2022
MaternalMentalHealth #PSI #BirthingComplication #OPQIC #MCH #MomsMindsMatter
Heather Pike, Associate Director of the Oklahoma Family Network shares the "why" behind what she does professionally and personally. In our latest episode of We Saved You A Seat, Heather walks us back 23 years ago when her son, Layton, was very sick and ultimately, diagnosed with meningitis.
Heather discusses the impact meningitis had on Layton's developmental milestones, the impact it had on his little 11-month-old body and shares how important meaningful resources were to her, as well as her desire to help guide families to those wonderful resources and helpers in our community.
Some of the resources she highlights:
SoonerStart: https://oklahoma.gov/health/family-health/sooner-start.html
Hearts For Hearing: https://heartsforhearing.org/
DRS Resource: https://oklahoma.gov/okdrs.html
Become a Supporting Parent: https://oklahomafamilynetwork.org/what-we-do/become-a-supporting-parent/
For More Information on Meningitis: https://www.meningitis.org/
Today we have the privilege of introducing you to Oklahoma Family Network's newest staff member and sharing a small portion of her experience and perspective learning her daughter has Down Syndrome.
This is a real and honest conversation that will touch your heart.
We Saved You A Seat, sat down with Jamese Siranga on March 21 (World Down Syndrome Day) and discussed the impact Down Syndrome has on their beautiful family. You will walk away from today's podcast with a full heart after hearing from Jamese and want to hear more from her, as she shares her family and daughter, Selah, with us.
Resources Mentioned: SoonerStart is Oklahoma’s early intervention program designed to meet the needs of families with infants or toddlers (ages birth to 3 years old) with developmental delays and/or disabilities in accordance with the Individuals with Disabilities Education Act (IDEA). The program builds upon and provides supports and resources to assist family members to enhance infants or toddler’s learning and development through everyday learning opportunities. For more information: https://oklahoma.gov/health/family-health/sooner-start.html
Song by India.Arie: I Am Not My Hair https://g.co/kgs/rqMSL2
WorldDownSyndromeDay #DownSyndrome #Trisomy21 #TrisomyAwareness #SoonerStart #OklahomaDownSyndromeAssociation #IndiaArie
WHAT IS TRISOMY 18?
Trisomy 18, also known as Edwards syndrome, is a condition that is caused by an error in cell division, known as meiotic disjunction. When this happens, instead of the normal pair, an extra chromosome 18 results (a triple) in the developing baby and disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth. A Trisomy 18 error occurs in about 1 out of every 2500 pregnancies in the United States and 1 in 6000 live births. The numbers of total births are much higher because it includes significant numbers of stillbirths that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down syndrome, which also is caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with more medical complications that are more potentially life-threatening in the early months and years of life. Studies have shown that only 50% of babies who are carried to term will be born alive, and baby girls will have higher rates of live birth than baby boys.
At birth, intensive care admissions in Neonatal Intensive Care Units (NICU’s) are routine for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
Some infants will be able to survive to be discharged from the hospital with home nursing support to assist with care by the parents. And although 10 percent or more may survive to their first birthdays, there are children with Trisomy 18 that can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independently without full time caregiving. (Trisomy 18 Support at Trisomy 18 Foundation)
Today you hear a mother share what she knows about Trisomy 18 and how it impacted her and her son, Carter. She shares what she knows from a parent perspective and what having another baby after Carter was like.
Thank you, Caiti, for giving us a glimpse into your journey with Carter and sharing how trisomy 18 impacted your life. Thank you for bringing awareness, conversation and education to a topic that is rarely discussed and few people know about.
Trisomy18 #T18 #EdwardsSyndrome #ParentPerspective #Trisomy18AwarenessDay
We welcome back and continue our conversation with Caiti about her son Carter, who we learned yesterday was diagnosed with Trisomy 18.
In today's conversation, she shares her experiences calling 911, hospital visits, and ultimately Carter's passing. Today she shares her heart and some of the very hard choices that she and her husband made for Carter. Today she shares with us and talks about things she rarely gets the opportunity to share.
We know you will listen with compassion as a mom shares her heart and the pain associated with the death of her son.
Trisomy18 #T18 #EdwardsSyndrome #911 #PICU
Meet Caiti... Meet her husband, Dillon, and daughter Chloe Bea... and today you have the incredible privilege of meeting and hearing about their first born, their son, Chloe's brother, Carter...
Today we release part one of our three-episode conversation with Caiti, shedding light into their NICU journey with their son Carter as doctor's suspected something was wrong, but couldn't definitively say, until genetic testing came back.
Caiti walks us through her delivery, diagnosis, and transition home on palliative care.
Trisomy18 #T18 #EdwardsSyndrome #NICU #GeneticTesting #PediatricPalliativeCare #PediatricHospice #SoMuchLove #Carter
"I don't understand why some people, and some children, are afforded these beautiful miracles, and others aren't. I'll never be able to reconcile it because they all deserve it, they all deserve to live. They don't deserve to go through all of this pain, to be stuck with all these needles all the time..." - Natalie Alexander
CHD #CongenitalHeartDefect #BrokenHeart #Bandaids #NoCure #HeartsOfSteel
February may have left us, but we have one more family story to share with you surrounding the topic of congenital heart disease/defects. It's a nice reminder to all of us, that just because the awareness month and education pieces and family highlights may end, there is a great number of families living and wondering what might happen next and when with their baby's heart.
We welcome, our guest, Natalie Alexander to the podcast. She is super mom to three boys ages 10, 8, and 5. Today she shares her experience getting a grim CHD diagnosis with her second baby, Sawyer.
You will hear her story of strength, hope, and perseverance; and walk away with a clear understanding, from a parent perspective exactly what a CHD is some of the things to help process the news you may receive or how to support a family walking this difficult path.
Thank you for joining us today, for part one of Natalie's two-part podcast.
CHD #CongenitalHeartDefect #CongenitalHeartDisease #EbsteinAnomaly #HeartMonth #HeartAwareness #PrenatalHeart
We are very thankful for moms like Erin Hartzell, who share their story and help us gain perspective into the world of congenital heart disease. Those who have never walked in CHD shoes, will never fully understand all of the emotion and trauma associated with diagnosis, surgery, recovery, and strength required by these amazing families.
Today you hear Erin share her 13-year-old daughter's journey from diagnosis to surgery, amazing supports, as well as help identify other real-life struggles families in the CHD community face daily.
Erin shares some very valid and real conversation identifying emotions some families have as they rush through or avoid February and Heart Month. Many families struggle to celebrate and reflect because of how hard it is to remember their difficult journey; and it's hard to acknowledge there are others who have buried their babies/children because of a CHD diagnosis.
We are thankful to have Erin's voice provide perspective, awareness, conversation and education about Congenital Heart Disease/Defects (CHD).
CHD #CongenitalHeartDisease #CongenitalHeartDefect #TotalAnomalousPulmonaryVenousReturn #TAPVR #AtrialSeptalDefect #ASDCHD #HeartMonth #MendedLittleHearts
Excited to have you join us for part two of our "Pregnancy and Addiction" podcast. Today Traci addresses Liam’s birth and some of the things she did and has done to help her maintain sobriety.
Traci gives us a glimpse into what it’s like to live with an addiction and pregnancy as she attempts to permanently conquer the addiction, which has controlled her for so long.
Please continue to listen as she shares hope, strength and wisdom for others who are trying to overcome an addiction.
We shared at the end of our last podcast about the STAR Prenatal program; STAR stands for Substance use Treatment And Recovery (STAR); and the STAR Prenatal Clinic at OU Health Sciences Center seeks to provide prenatal care for those with an addiction and coordinate treatment and mental health services at the same time. Please check here for more information on the STAR Prenatal Clinic: https://oklahoma.gov/odmhsas/treatment/children-youth-and-family-services/stars-program.html
Again, thank you for joining us today and hope you will, once again, open your heart to compassionately hear more of Traci’s words and story!!
Addiction #STAR #Recovery #Prematurity #SubstanceUseAndPregnancy #Strength #Support #Sobriety
On today's podcast we discuss pregnancy and addiction with our guest Traci Cates, who is a mother living sober, who survived a life of addiction and has the incredible desire to help others understand addiction. She wants to help young women experiencing addiction and pregnancy find hope, support, and share more about her sweet baby boy who helped her find strength to seek sobriety and maintain it, for him.
We have separated Traci’s podcast into two releases and today you will hear the historical piece of her addiction, the challenges she faced every time she tried to gain or maintain sobriety, and her desire to have and live a full life with her kids.
We are so proud of Traci and extremely touched she is willing to share her experiences so others may understand addiction and find the support they need.
Thank you for joining us today as you open your heart to compassionately hear Traci’s words and story!!
STAR (Substance use, Treatment And Recovery) Prenatal Clinic Information: https://oklahoma.gov/odmhsas/treatment/children-youth-and-family-services/stars-program.html
Addiction #Recovery #PregnancyAndAddiction #STARSPrenatalProgram #SubstanceUseTreatementAndRecovery #Prematurity #NICU #Sobriety #Strength
Today, we have saved you a seat, to hear how Amy LaRue's faith and support from others played an impactful role, as she has dealt with addiction in her home and how gathering the right tools and support united her family. Amy now works for Hope is Alive as the Finding Hope Coordinator and we are excited for you to hear more about how you can get involved and find support, if someone in your family is living in or recovering from an addiction. Thank you, Amy! Thank you for sharing your heart and giving others hope as they seek out support. Hope is Alive will host a retreat entitled: Journey to Joy. This retreat will be held in Tulsa on March 25-27, 2022 and we hope you will consider attending if you find yourself impacted by someone you love and their addiction. You can find more information on the retreat by clicking here: https://hopeisalive.net/finding-hope/journey-to-joy-retreat/ To learn more about sober living, support groups, or to ask questions, you can check out their website at: FindingHope.Today Amy's Contact Information Is: Amy@hopeisalive.net Retreat: Journey to Joy March 25-27 Postoak Lodge & Retreat (Tulsa, OK) $275 Individual $425 Couple
Addiction #HopeIsAlive #HIA #Recovery #SoberLiving
February 7th-14th is Congenital Heart Disease Awareness Week... Go Red Day is February 4th, 2022 and the entire month of February has been designated as American Heart Month.
Today, we are excited to introduce you to Nanna Leaper, her amazing children and the impact of congenital heart disease (CHD) has on their life. You will learn about Parker's prenatal diagnosis, his journey through multiple surgeries, and hear a little about what they anticipate for his future.
Thank you, Nanna, for sharing Parker's journey with us and giving us a glimpse into your day-to-day routine with Parker, to keep him healthy and strong.
CHD #CongenitalHeartDisease #CongenitalHeartDefect #GoRedDay #MendedLittleHearts #CICU #NICU #PediatricHeart
Today we welcome Melanie Hollins to the podcast as she discusses her delivery at just 25 weeks gestation. You will hear her story and how she processed the birth of her beautiful daughter Emily. She also speaks to the things she did that helped her survive mentally and physically, 156 days in NICU, not knowing from day to day what the outcome might be, but believing the truths she spoke out loud and over her daughter each day.
Thank you Melanie for sharing your story, family and journey!
Welcome back to Part Two of our conversation with Mandi and Cristina.
Today's podcast takes us further and deeper into the journey after Laurel was discharged from NICU and how they worked to obtain answers that might explain some unique attributes, as well as, bring closure to "momma gut" questions.
Positive attitudes, kindness in inquiry, surgeries, IEPs, cochlear implants, and so much more are discussed in this episode.
If you missed part one, please catch up with their story by clicking here: https://www.podbean.com/ew/pb-gbvyb-10fc4e8
HIE #HypoixIschemicEncephalopathy #NICU #TermBaby #40and1 #NICUAwareness #Surviving #Fighter #GTube #Seizures #MiracleBaby #NewbornHearingScreening #H4H #HeartsForHearing #Therapies #GeneticTesting #HearingLoss #KabukiSyndrome
We are excited to introduce you to Laurel O'Connor and her Moms today!!
Carrying a baby to term is one incredible experience, and when a mother reaches 40 weeks gestation, one often thinks, nothing can go wrong now. Today you will hear Mandi and Cristina describe Laurel's delivery and NICU experience. You will hear how their excitement transitioned quickly; their hope turns to unbearable grief; and then grief to elation as they transition home! The transition home came with a few challenges, and today you will hear them share their journey, strength and positive outlook on life!!
We have saved you a special seat today, to hear a small piece of their journey with beautiful Laurel!!
HIE #HypoixIschemicEncephalopathy #NICU #TermBaby #40and1 #NICUAwareness #Surviving #Fighter #GTube #Seizures #MiracleBaby #NewbornHearingScreening
Happy Birthday in Heaven, Evan!!!
Join us today and on Evan's birthday!! You'll hear about his celebration of life and hear how his parents are processing each day without him here; moving forward, choosing joy!!
Jump in and hear how Lauren works hard to choose joy every day, about the trips they've squeezed in as they learn to move forward with Evan, and hear how Lauren anticipated and processed her plans for this day!!
Today, Lauren and Sam, we help you celebrate your boy, Evan!!
"NICU Moms are my Heroes" - Quote from Cheryl Coleman as we discuss breastfeeding and pumping while in the NICU.
Today you will hear a beautiful and candid conversation with a Coalition of Oklahoma Breastfeeding Advocates Board Member and IBCLC (International Board Certified Lactation Consultant) Cheryl Coleman on the tough topic of breastfeeding our baby while in the Neonatal Intensive Care Unit.
Cheryl is a retired lactation consultant. She has been a registered nurse for over 45 years and an International Board Certified Lactation Consultant for 10 years. She served as the lead for Hillcrest Medical Center's Baby-Friendly designation.
Prior to working at Hillcrest, Cheryl worked as an Education Specialist and Clinical Nurse Manager at Oklahoma State University Medical Center. She has served as a board member with the International Childbirth Education Association (ICEA) for 14 years in various capacities, including Director of Public Relations, Secretary, President-Elect and President. She was on the faculty for ICEA Basic Teacher Training and Postnatal Educator Workshops for many years.
Cheryl lives in Verdigris, Oklahoma with husband, Bob. They have 2 children and 2 grandchildren. Cheryl is passionate about Sooner sports, the Chicago Cubs, Oklahoma City Thunder, breastfeeding families, and doing the Happy Breastmilk Dance.
Sixteen years ago today (10/7/2005) JB and Melanie Edwards endured a loss no young family ever thinks will happen to them. Their sweet girl, K.J., (born still), would help them create the organization we know and love, Kids Joining Eternity.
Today, you'll hear Melanie share her story and the reason they pour their heart and soul into supporting families across the state who have lost a child to pregnancy and infant loss.
Kids Joining Eternity (KJE) partners with many wonderful organizations to help hurting or grieving families know they are not alone and there are ways to move forward with their baby, their experience, and the grief they now carry. KJE also provides wonderful peer-to-peer opportunities ranging from coffee shop gatherings, dinner groups, family gatherings, and ceremonies to help kick off Pregnancy and Infant Loss Awareness Month.
Listen in today, as Melanie and JB celebrate and honor the life of their first born, Kendal Janae on what is her sweet 16 and discover how they help impact the lives of precious families, not only during the month of October, for pregnancy and infant loss awareness, but throughout the year.
PregnancyAndInfantLossAwareness #KidsJoiningEternity #SweetSixteen #Stillborn #BornStill #BornSleeping #Miscarriage #InfantLoss #1in4
Today, We Saved You A Seat beside Tracy Whitaker for the second half of our conversation.
While Tracy has previously worked in education and is a certified Occupational Therapist, she currently works at the Toby Keith Foundation as the Guest Relations and Volunteer Coordinator for the OK Kids Korral. Her work supporting families experiencing a Childhood Cancer diagnosis is impactful and meaningful to those she meets.
In today's (part two) episode you'll hear how she continues to work with families through many organizations, partnerships, and programs raising funds and support for those in the community.
Her son, Mitchell, continues to have a lasting impact on those who knew him and his family, as well as, those who hear his story and their journey as a family!
We are all thankful for the impact the Whitaker family has had on the community and those around them! Thank you Tracy for sharing Mitchell, your vision, and bringing awareness, conversation, education, and support to Childhood Cancer.
ChilhoodCancerAwareness #ChildhoodCancer #AcuteLymphoblasticLeukemia #ALL #Leukemia #SiblingEngagement #JEC #JimmyEverestCenter #14YearsAgo #GoGold #GoMitchGo #KeepFighting #TobyKeithFoundation #OKKidsKorral #OklahomaFamilyNetwork #BeTheMatch
Fourteen years ago today, (September 27th) a 10 year old little boy left this world and went to be with Jesus, because of Childhood Cancer. Today you will hear Mitchell's story, through his Mom, Tracy Whitaker.
This month our podcast series has focused on childhood cancer awareness and we released three incredible family stories, each with a different diagnosis and each with some really incredible outcomes.
I want to prepare our listeners today that our family story will shine a light on a piece of childhood cancer we really do not enjoy talking about, but is a conversation we want to have for several reasons. Childhood cancer sometimes has a devastating end. The child is not always cured and does not always go home after their treatment plan has ended. We want to talk about the hard, and the hardest.
This family story is a story of great strength, faith, fight, determination, never giving up, always bringing awareness, and provides each of us with information on how to live day to day when the hard turns to the hardest.
I had the incredible privilege to interview Tracy Whitaker, Mitchell’s mom, for our podcast today and I know her words will touch your heart. I want to thank you for listening today and hearing Mitchell’s story. I want to thank you for allowing Mitchell’s name to be said over and over as Tracy shares their journey through childhood cancer and the toll it took on their family!
Many hugs and much love to the Whitaker Family today as they celebrate Mitchell's life, legacy, contributions to Childhood Cancer treatment and support for others!
ChilhoodCancerAwareness #ChildhoodCancer #AcuteLymphoblasticLeukemia #ALL #Leukemia #SiblingEngagement #JEC #JimmyEverestCenter #14YearsAgo #GoGold #GoMitchGo #KeepFighting
Relapse... Her AML is back... now what?
In part two of Michelle's podcast release today, you will hear what steps they had to take when Abby's AML returned. You will hear today how they balanced life and responsibilities and found the right resources at the right time.
The Gamble family works hard to celebrate and bring awareness to the important topic of childhood cancer and today you'll hear her heart and passion as she describes how they try to impact and support the community with their knowledge and experiences.
AcuteMyeloidLeukemia #AML #AplasticAnemia #BellsPalsy #StevensJohnsonSyndrome #10thFloor #PediatricICU #JimmyEverestCenter #JEC #ChildhoodCancerAwareness #ChildhoodCancerAwarenessMonth #GoGold #Relapse #CavettKids #TobyKeithFoundation #KidsKorral #KidsKorralTobyKeithFoundation #BeTheMatch
Today, through the podcast, you will meet Michelle Gamble and her incredible family who walked together through a diagnosis of Acute Myeloid Leukemia. Michelle shares with us the step by step process they experienced to try and find answers for their daughter's (Abby) health concerns.
Abby's health concerns began in 2013 and they worked hard to find the answers. Their answers came in 2014 when they heard the words Acute Myeloid Leukemia for the first time.
Today, you'll hear an emotional story of diagnosis, challenges, faith, strength, and survival. You'll hear how a diagnosis from seven years ago is still very real and raw and full of blessings.
Thank you Gamble Family for sharing your Childhood Cancer Awareness Story!!
AcuteMyeloidLeukemia #AML #AplasticAnemia #BellsPalsy #StevensJohnsonSyndrome #10thFloor #PediatricICU #JimmyEverestCenter #JEC #ChildhoodCancerAwareness #ChildhoodCancerAwarenessMonth #GoGold #Relapse
We continue our Go Gold for Childhood Cancer Awareness Month podcast series, and You will not want to miss part two of Neil's family story and experience with his son's diagnosis of Acute Lymphocytic Leukemia, at just three years old.
Today you'll learn how Neil and Conner got involved with the Leukemia Lymphoma Society and how Conner and Neil continue their fight against Childhood Cancer and what the lifelong process of being a cancer survivor looks like.
If you missed part one of Neil's family story, here is the link: https://www.podbean.com/ew/pb-xnufy-10d4b15
ChilhoodCancerAwareness #ChildhoodCancer #ALL #Leukemia #ERVisits #BeTheMatch #BloodDoner #Chemo #HellWeek #Steroirds #RingTheBell #EmergencyFlightFunds #MeicalBills #Supports #EndOfTreatmentParty #LeukemiaLymphomaSociety #BoyOfTheYear #ChildLife #SiblingEngagement #JEC #JimmyEverestCenter #3YearOldWithCancer #TakeCareOfYourself #Therapy
We are excited to introduce Neil Lloyd and his precious family! Today, Neil shares with us how he was thrown into a world he knew nothing about, Childhood Cancer!!
Neil shares about his son, Conner, and their journey with him through and with the diagnosis of Acute Lymphoblastic Leukemia, at just three years old. Neil speaks to the impact it had on his family, the need for supports, and how he started giving back to the Childhood Cancer Community in unique ways.
Thankful for families like the Lloyds who share their stories to help bring awareness, conversation, education and supports for Childhood Cancer Awareness Month!
ChilhoodCancerAwareness #ChildhoodCancer #AcuteLymphoblasticLeukemia #ALL #Leukemia #Port #794DaysOfTreatment #58RoundsOfChemo #ChildLife #SiblingEngagement #JEC #JimmyEverestCenter #3YearOldWithCancer #TakeCareOfYourself #Therapy #HairLoss
Meet Jared and Tammy Cox. They are the parents to three amazing boys and today you will hear why Childhood Cancer Awareness Month has such a special place in their hearts!
Jared and Tammy sat down and shared their family's journey through diagnosis, supports, resources, and perspective. Their desire to bring conversation and awareness to the hard topic of Childhood Cancer is a mission they hold close to their heart and truly have a desire to help others find a network of support and resources, as they walk a new or difficult path.
Jared and Tammy help facilitate a group called, Cultivating Connections, which brings together those who might want or need tips, ideas, or information from a parent/family perspective.
As you listen in today, you will hear not only their story, but also their strength and heart! You will hear their overwhelming gratefulness to those who loved them well and supported them in unique ways as they walked a hard and unknown path.
WilmsTumor #Nephroblastoma #CultivatingConnections #PediatricOncologySupportGroup #JEC #JimmyEverestCenter #CavettKids #CavettKidsFoundation #RingTheBell #KClubKindness #TogetherWeLighthouse
Today we kick off Childhood Cancer Awareness Month by welcoming Dr. Pokala to the podcast.
You will walk away from this podcast with a better understanding of pediatric cancer and hear how Dr. Pokala personally serves families in Oklahoma with children who are experiencing pediatric cancer!!
Thankful for Dr. Pokala and so many other physicians and team members who serve families who are walking a difficult path of pediatric oncology.
Our fourth and final released tied to the same conversation we recorded on August 27th.
Welcome to the third episode tied to the conversation we recorded with Sam and Lauren on August 27th. If you have not heard the previous conversations tied to this recording date, I hope you will look back and download the previous episodes.
At one point in the conversation with Sam and Lauren, I asked if they might share how they handle or process conversation which comes out wrong from people who love and care about them deeply.
So many of us don't have the words or know what to say, so I asked them to help know better, so we can do better.
Welcome to the second episode which is a continuation of the conversation with we with Sam and Lauren on August 27th.
If you missed the first piece of the conversation please go back and download the episode just prior to this one (A Cooper Penny For Your Thoughts: Episode 13).
Welcome to the the first podcast with Sam and Lauren since Evan passed away. Sam and Lauren are the face and voice behind A Copper Penny For Your Thoughts and how incredibly honored we are that they share Evan and their journey with us, even in their grief.
Our conversation was heartfelt and emotional. Lauren and Sam wished to bring the raw and real to their community who love them. They wished to bring the hard conversation of grief to the table. And, they wished to help others who know and feel this type of heartache, to know they are not alone.
They accomplish these goals beautifully in this conversation.
Please know we have broken the conversation into four shorter episodes, but have released them all in the same day, if you would like to listen to the entire conversation without delay.
Menkes #EvansArmy #EvanKlingenberg
Several weeks prior to Evan's passing away, Lauren had sat down with us to discuss something near and dear to her heart, Evan's Private Duty Nursing. She shares how the nurses are extensions of their family and how they allow her to wear a mom-hat for Evan when they are there, and not just his care takers.
Our conversation about private duty nursing expanded into the subtopic of TEFRA and Lauren does a beautiful job explaining how TEFRA impacted their life and helps them in so many ways!
TEFRA #SelfCare #HomeHealth #PrivateDutyNursing #Menkes #EvansArmy
“Grief is the price we pay for love.” - Queen Elizabeth II
“Grief is not a disorder, a disease, or a sign of weakness. It is an emotional, physical and spiritual necessity; the price you pay for love. The only cure for grief is to grieve.” – Dr. Earl A. Grollman
Having friends and family who you can process the hard with can make all the difference. This family spoke of and provided us a glimpse into the way in which they process grief together. This episode is the final release of the conversation we recorded on July 31, 2021.
There may be one or two bonus stories in this podcast as well about the Arnold family, Sibling Love and Support, and Processing Grief!!
This release of "A Copper Penny For Your Thoughts" episode, is a continuation of the beautiful conversation with Lauren's extended family on July 31, 2021. We are honored to share it with you, and yet, we know you will walk away from this episode experiencing a wide range of emotions, knowing that these memories, this conversation, these very specific words, were recorded just 17 days prior to Evan's passing.
When your sister, cousins, aunt, niece & nephew, mom, grandma and littles all come to visit [Lauren] in her home, you know it's going to be a good time; and to have an opportunity, to sit and hear their stories, and share in their expressed love for Evan and each other, you will wish you were part of their family.
Big Stories; Big Emotions; Big Memories, BIG LOVE!!!
Menkes #Family #NoOneFightsAlone #TakeThePicture #EvansArmy #EvanKlingenberg #ShowUp
I want to provide our listeners with the very hard and sad news of Evan passing away.
Sam and Lauren Klingenberg released a statement on August 17th that read:
"It has been and will continue to be the honor of a lifetime to be known as Evan’s parents. We couldn’t be more proud of the way he fought, smiled, giggled, and loved. Which is why it’s so hard to share that Evan passed last night peacefully in our arms as we said we loved him and kissed him goodbye. We find peace and happiness that Evan is no longer ill and is now in arms greater than ours.
We will have a longer post of love and reflection when the time is right. We appreciate the love, support and friendship from all of who have kept up with our journey, supported us, prayed for us, and blessed us. Loving and providing for Evan was the easy part. And while we’ve talked about life after Evan, nothing can truly prepare us for the days and weeks to come. We are well taken care of right now and appreciate everyone trying to help in our grief, but we don’t need anything immediate at the moment. Please be considerate if we don’t answer or respond immediately but I promise your kind words, thoughts and prayers don’t go unnoticed or unappreciated.
We will post later about celebration of life which will take place in the upcoming weeks.
Thank you for everything and for always choosing joy. #EvansArmy"
The next three "A Copper Penny For Your Thoughts" podcasts we release this week, were recorded on July 31, 2021 when so many of Lauren's family were in town to visit. This family has a motto, "No One In This Family Fights Alone"!!
As you listen to their words and stories, you will hear their love and strength... and you will walk away knowing they do not lie when proclaiming that statement.
Precious Klingenberg family... you are loved!!!
Menkes #EvanKlingenberg #FamilyIsEverything #NoOneFightsAlone
This episode is full of raw and real emotion.
Momma D and Lauren jump in quickly explaining some of the emotional experiences they've shared, as well as, what has provided Lauren with the most encouragement from her own momma and family!
Menkes #ShowUp #NoOneFightsAlone
If you think you missed episode 07 of "A Copper Penny For Your Thoughts", you didn't, I promise. We recorded episode 07 and decided to publish it after this next group of podcasts. Very recently Lauren had lots of family visit and we had the opportunity to record some of the family stories and their voices. These first two episodes are strictly Lauren and her mom, Debbie. We have additional family members join us in the following episodes, which you will not want to miss.
With our first release this week we welcome Lauren's Mom, Debbie, also known as, "Momma D" in Evan's world. You will find this episode to be full of laughs, strength, and reflection. You will hear a grandmother share her heart and express all the joy of being a grandparent, as well as, gain some insight on what having a grandchild with high medical needs/terminal illness looks like.
This episode of "A Copper Penny For Your Thoughts" is fun, uplifting and I know you will enjoy hearing Lauren and Momma D bounce the conversation back and forth.
Menkes #MommaD #Grandparents #Family #13PeopleComingThisWeek #EvanKlingenberg
Our third and final episode with Chelsea gives us a glimpse into the relationship Kenna has with her brother as well as discusses a couple of additional medical challenges Kenna has faced the past few months.
For those wishing to follow along in Kenna's journey, feel free to join her Facebook page: Kenna's Journey
Thank you Chelsea for sharing Kenna. You brought awareness, education, conversation and support to many who needed to hear your words and thoughts surrounding Angelman Syndrome.
AngelmanSyndrome #TonicClonicSeizure #HenochSchonleinPurpura #HSP #JuvenileArthritis
Join us today as we continue our conversation with Chelsea. She provides us with information about Angelman Syndrome from a parent perspective and shares with us some wonderful resources which have been extremely helpful to/and for her and her family.
We also hear from Chelsea about some unique to Kenna health concerns that have plagued her for several months. Chelsea describes what it was like trying to be the advocate Kenna needed.
Resources Mentioned:
FAST: Foundation for Angelman Syndrome Therapeutics: (https://cureangelman.org/)
Angelman Syndrome Foundation: (https://www.angelman.org/)
What is Angelman Syndrome?
Angelman syndrome (AS) is a rare disorder caused by the loss of function of a single gene and affects approximately 500,000 people worldwide.
Symptoms typically become noticeable around the age of 6-12 months and may include difficulty suckling and eating, gastrointestinal issues, delayed crawling and babbling, balance and motor impairment, and seizures. Some individuals never walk, and most do not speak. And while they require continuous care, they have a normal life expectancy and a distinctly happy demeanor, characterized by frequent laughing, smiling and excitability.
AngelmanSyndrome #FAST #ASF #Genetics #RARE
Meet the Lawson family!!!
In Today's podcast you'll hear how Chelsea knew something wasn't "right" with her new daughter, Kenna, and simply wanted, needed, answers. After multiple hospital admissions, discharges, readmissions, and a stay at Bethany Children's Rehabilitation Center they finally received a diagnosis.
Listen in today as Chelsea describes what the first four months of Kenna's life consisted of, as they tried to find ways to help their daughter and get the answers they needed to move forward.
NICU #Polyhydramnios #FloppyAirway #Laryngomalacia #TCC #BethanyChildrensRehabilitationCenter #AngelmanSyndrome
We continue our conversation with Sam and Lauren today. We discuss speech devices, communication with dad, and talk about how much Evan loves his dad.
We also ventured in to some very hard conversations today, and Sam provides us some perspective on what "end of life" conversations sound like with physicians, and how they prepare themselves, their family, for that hard moment.
Menkes #MarriageAndMenkes #EndOfLife #CommunicationDevice #HardTopics #EvanKlingenberg
Today we release "A Copper Penny For Your Thoughts" episode #5 - Marriage and Menkes...
Our special surprise guest Sam Klingenberg (Evan's Dad) joined Lauren and I, to discuss one of their favorite topics, Evan!!
We had an amazing discussion with Sam and I know you will enjoy hearing their podcast today...
If you haven't heard episodes 1-4 yet, you really need to start at the beginning to hear how it all began...
Episode 01: https://www.podbean.com/ew/pb-bkq38-10746c9
Episode 02: https://www.podbean.com/ew/pb-pemk9-10746d0
Episode 03: https://www.podbean.com/ew/pb-deipj-107478d
Episode 04: https://www.podbean.com/ew/pb-j9v87-1080ec9
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Today we have double the guests with Lauren and Sam (Evan's Dad) joining us! Evan's Dad brings unique perspective and having Lauren and Sam bounce conversation and thoughts off of each other provides fun dialogue!!
As you listen in today you'll hear Sam and Lauren discuss how Menkes has impacted their marriage, influenced the hopes and dreams they both had, and how they work together to give their family all the special memories. You will also hear Sam's heart as he shares some of things he cherishes most!!
Menkes #MarriageAndMenkes #MakeMemories #ItIsAllHard #BreakfastDates #EvanKlingenberg
Listen in today as Lauren shares how they were inspired to create their own bucket list for Evan. While the reason behind the bucket list is heavy and hard to think about, the family stories, memories created, and creative inspiration to distract from the every day "heaviness" of Menkes is something important to them and their family.
In the podcast you will hear about some of the memories they've made and the experiences they've had while marking items and activities off the bucket list.
For more information about the Quinn Madeleine Foundation: www.quinnmadeleine.org
BucketList #QuinnMadeleineFoundation #MakeTheMemories #TakeThePictures #HotAirBalloons #EvanHatesSnow
Meet Brittani Condit, beautiful mom of two, who has experienced some really hard and scary times with her youngest, who was diagnosed prenatally with a heart defect.
Listen in today as Brittani describes some difficult conversations and moments in diagnosis and surgery; amazing supports; and a great display of strength and hope!
Resource:
Hearts of Hope Network: HeartsofHopeNetwork.org
CHD #HeartDefect #HofH
A Copper Penny For Your Thoughts: Episode 3, is a little longer than our typical podcast, and worth every minute of your time.
Today, Lauren immediately captures our attention and discusses Evan obtaining a GTube during his first hospital stay. Lauren has some wonderful information regarding GTube tips and tricks and perhaps a fun story or two of learning how to navigate the GTube best.
As we discuss Gtubes, our conversation unintentionally transitions into a bit heavier topic of ventilators and a what a DNR looks like for their family, at the moment. She shares her thoughts, highlights the progression of their DNR journey, and some things they've learned along the way.
Menkes #MenkesLife #GTubes #GravityFeeds #FeedTheBed #Ventilators #DNR #DoNotResuscitate #AmbuBag #PalliativeCare #HardConversation #TalkAboutTheHard #Grief
We are super excited to have Angela Hornsby as a guest on the podcast this week!! Angela does a beautiful job sharing her son, Malachi’s, journey of strength and perseverance!
On this episode, you will hear an honest and open reflection as Angela processes with us what it was like learning her baby has Down syndrome; learning to be Malachi’s biggest and best advocate; touch on their heart surgery experience; how leukemia became part of their story; and of course we can’t leave the conversation without her sharing some of their school experiences and IEP expertise!
Angela has a strong voice, dedicated to advocacy in the disability community and health equity. We are proud to bring Angela’s story and voice to We Saved You A Seat.
DownSyndrome #Leukemia #WrightslawCenter #Inclusion #IEP #Advocate #CHD #AVSD #HealthEquity #LEND
We continue our wonderful conversation with Lauren and jump right back in, where the conversation left off with the last episode.
In this episode, Lauren specifically educates us with more information about Menkes and the genetic process they went through to confirm diagnosis. She gives us a glimpse of what it was like to add Ryan, a typically developing brother, to the family; and we learn about Evan's favorite things to do and watch.
We hope you walk away with knowledge about Menkes, one family's perspective, and knowing 5 year old, Evan a little better.
Menkes #CopperDeficiency #SiblingAdvocates #Genetics #RARE
Photo Credit: Brandon Burton Photography (https://www.brandonburton.info/)
Meet Lauren Klingenberg and her precious family!!
We Saved You A Seat has partnered with Lauren Klingenberg, who is the Special Needs Division Leader for MOMS (Moms on Missions) and has experience in both PICU (son Evan) and NICU (son Ryan), to create a new series titled: “A Copper Penny For Your Thoughts”.
We are honored to bring you thoughts, conversation, education and awareness specifically surrounding Lauren’s son, Evan, and his diagnosis of Menkes.
Lauren eloquently and openly shares her thoughts, experiences, dreams, hopes and grief; giving listeners an honest and open conversation into her world.
Lauren has indeed saved everyone a seat, next to her, as she shares her family, Menkes, and so many tips getting through the really hard days.
Menkes #CopperDeficiency
Kaele Montgomery joined We Saved You A Seat and shared a tiny bit of her 143 day NICU experience and a lot about her experience deciding cochlear implants were the right decision for her daughter and their family after a very specific diagnosis of auditory neuropathy.
Oklahoma Family Network continues to have conversations about early hearing detection and intervention (Early Hearing Detection and Intervention) and we appreciate Kaele sharing her family, experiences, and wisdom as they discussed their options for Josie's hearing loss.
EHDI #H4H #HeartsForHearing #EarlyHearingDetectionAndIntervention #NewbornHearingScreening
Happy Father's Day Weekend!!!
Today we welcome Dad, Jeff Roby, to the podcast!! Jeff is a dad to two precious girls and husband to beautiful wife, Ashley. Jeff shares with all of us his experience becoming a first time dad and having his daughter in the NICU.
Today you will hear Jeff address the need of fathers finding each other and supporting each other as their babies are in the NICU; he shares about keeping dad's physical and mental health strong; and his experience trying to keep his family healthy and strong while having his second daughter immediately after the pandemic shutdown occurred, as well as, the losses he and his wife experienced together.
HappyFathersDay #DadsMatter #DadsMentalHealth #NICUSupport #DadsOfNICU #DadDiscussions
We continue to bring awareness and conversation to the topic of CMV by sharing family stories and experiences highlighting CMV and it’s direct impact on families in Oklahoma for June, CMV Awareness Month!!
Today we welcome Linden Priddy to the podcast and she shares her experience with receiving a CMV diagnosis, the antiviral meds treatment, and their experience sharing with their daughter about her own diagnosis as they work to create an independent, future self advocate. Listen in today to feel encouraged by Linden!!
CMV #CMVAwareness #CongenitalCMV #NewbornScreening #FacesOfCMV #CMVStory
Cara Gluck returns to We Saved You A Seat podcast and we continue the CMV conversation from a year ago, for CMV Awareness Month 2021 (June). Today's dialogue provides very specific knowledge about CMV from a mother who became an advocate and expert in CMV because her son, Parker, was born with Congenital Cytomegalovirus (CMV).
Thank you Cara for sharing your knowledge and inspiration as we continue to educate others and bring awareness to young women, pregnant women, and providers to know what and who to ask about this very specific and preventable virus, which impacts many.
To hear Cara's delivery and diagnosis experience please feel free to listen in here: https://wesavedyouaseat.podbean.com/e/cmv-awareness-stories-facts/
Cara and her family participated in a project for the Oklahoma State Department of Health, which brought awareness and conversation to CMV, please continue to share these videos with others.
https://vimeo.com/353672542 (PSA)
https://vimeo.com/374041725 (Meet the Gluck Family)
Additional CMV Resources:
National CMV Foundation: www.nationalcmv.org
Newborn Screenings Listed By State: www.babysfirsttest.org
CMV #CMVAwareness #CongenitalCMV #NewbornScreening #FacesOfCMV #CMVStory
Each May, Better Hearing and Speech Month (BHSM) provides an opportunity to raise awareness about communication disorders and the role so many play in providing life-altering treatment. For 2021, the theme is "Building Connections."
Today, Oklahoma Family Network introduces one of their own, Renee Powell, through the podcast. Renee shares her heart, her journey, and educates us on the Early Hearing Detection and Intervention (EHDI) goals and objectives, and how we can apply them throughout Oklahoma.
Renee shares her personal story and experience with her son Nolan, and their journey finding the right diagnosis surrounding hearing loss and finding the right resources for their family!
Resources Mentioned:
List of Accommodations - Hands & Voices: https://handsandvoices.org/pdf/IEP_Checklist.pdf
Better Hearing and Speech Month: https://www.asha.org/bhsm/
EHDI #BetterHearingAndSpeechMonth #HearingLoss #EarlyHearingDetectionAndIntervention #Amplification #AmericanSignLanguage #SigningExactEnglish #ScreeningIsOutOfRange #IEPvs504
Welcome to part two of our podcast highlighting Stroke Awareness Month with Stephanie Tachell. Today Stephanie shares about her typical day, highlights some resources, speaks about the relationship her son and Lynnex have, and so much more.
TEFRA (Tax Equity and Fiscal Responsibility Act of 1982): https://oklahoma.gov/ohca/individuals/programs/tefra-children-overview-care-for-children-with-disabilities.html
StrokeAwarenessMonth # PerintalStroke #TEFRA #SoonerCare #PrivateDutyNursing #DNR #FamilySupport #YouCanDoIt
We present another two part series podcast today, to help bring conversation, awareness, and education to the topic of strokes, specifically perinatal stroke, for stroke awareness month. In today's podcast you will meet Stephanie Tachell, as she shares her powerful story and experience with two of her immediate family members having strokes, possibly hours apart.
In part one of this conversation, you'll hear Stephanie share her birth story, NICU experience, and diagnosis. Powerful words and experiences are shared as Stephanie gives us a glimpse into their world after their daughter, Lynnex, was born.
Thank you Stephanie for sharing with us today!
StrokeAwarenessMonth #PerinatalStrokeAwareness #NICUAwareness #PostPartumHemorrhage #PPHN #MeconiumAspiration
Today's podcast completes the conversation two moms (Heather Ashwood and Megan Smith) are having as they process the future for their young children, who have cystic fibrosis. They share their thoughts about the possibility of of lung transplants, medications, what a day in their life looks like, education and their future plans as they integrate Cystic Fibrosis into their world and every day life.
Thank you Heather and Megan for sharing, bringing awareness, and educating many about cystic fibrosis and what your daily routine looks like.
CFAwarenessMonth #CysticFibrosis #FacesOfCF #NICU #MeconiumIleus #65Roses #CFWarriors #AbigailsAdvocates #AidensArmy #CysticFibrosisAwarenessMonth
(Ashwood Family)
(Smith Family)
Cystic Fibrosis Facts courtesy of www.cff.org :
- Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
- The Cystic Fibrosis Foundation is the world's leader in search for a cure for cystic fibrosis.
- More than 30,000 people in the United States are living with cystic fibrosis.
Today we hear from two families who have children with cystic fibrosis and their stories of birth, diagnosis, and surviving the first few months of learning about Cystic Fibrosis.
We desperately want to share today how Heather Ashwood and Megan Smith connected and bonded, because of their shared experience with cystic fibrosis, the NICU, and the cystic fibrosis community and hope others will get involved after hearing their stories.
Resources mentioned in this podcast:
Cystic Fibrosis of Oklahoma (Cystic Fibrosis Foundation - Central/Western Oklahoma Chapter): www.eff.org/okc
Oklahoma Family Network: http://oklahomafamilynetwork.org/what-we-do/talk-with-another-family/
CFAwarenessMonth #CysticFibrosis #FacesOfCF #NICU #MeconiumIleus #65Roses #CFWarrior #AbigailsAdvocates #AidensArmy #CFMomma
Happy Mother's Day Weekend to all the moms out there!! Mom's health matters and we would like to take a moment and tell all the moms out there "thank you" and remind them how much they mean to the community they live in!!
Today's podcast highlights one mom's journey into motherhood and we hope you'll listen in as Desiree shares her journey with Multiple Sclerosis; accomplishing life goals in education, marriage, and motherhood, with the birth of her son Caleb at 25 weeks; and then shares openly about the challenges she faces day to day.
We hope her words will inspire and touch your heart as she brings awareness and education surrounding Multiple Sclerosis, prematurity, placental abruption. and so much more.
HappyMothersDay #MultipleSclerosis #Prematurity #PlacentalAbruption #NICUAwareness #HealthyMoms #MothersDay #MomsMindsMatter #25Weeker #NICU
As we prepare to welcome the month of May, we know it will bring us flowers, sun, warmer temps, but please don't miss out on the special focus it provides for Mental Health and specifically today, we honor Maternal Mental Health.
Please help me welcome Emily Clark to the podcast as she shares candidly about the mental health crisis experience she had during pregnancy and postpartum. Perinatal Mood and Anxiety Disorders (PMADs) can be a hard topic to openly engage others about and sometimes new moms find it hard to seek support for fear of judgement and harsh ridicule.
Knowing where to go, who can help, or what to do when perinatal or postpartum depression or anxiety begin to creep in is key. Listen in today and take notes as Emily shares ideas on how to help or what to do next when faced with unfamiliar emotions about motherhood.
Resources:
Climb Out of The Darkness Walk: https://cotd-2021.causevox.com/team/climb-out-of-the-darkness-team-okc
Oklahoma State Department of Health Maternal-Child Health: https://oklahoma.gov/health/family-health/improving-infant-outcomes/maternal-mental-health.html
The Blue Dot Project: https://www.thebluedotproject.org/
PSI #PerinatalSupportInternational #MomsMindMatters #MMHweek2021 #PMADs #PPD #PostPartumHealth #MaternalMentalHealth
As we continue to provide awareness and education around the topic of autism, we welcome Angela Donley, with Oklahoma Family Network, to the podcast. Angela shares a few pieces of autism puzzle with us and her journey with her son Jackson surrounding their real-world-experiences around Jackson’s diagnosis of autism.
One of Angela's favorite quotes is by Joseph Campbell, “We must be willing to let go of the life we planned so as to have the life that is waiting for us” and has actively applied these words to her life.
Oklahoma Family Network is thankful for the leadership and experience (personal and professional) Angela provides. Angela and Steve are amazing parents to Jackson and love to share their wisdom with others, advocate, and create awareness around the topic of autism.
To learn more about some of the resources Angela mentions:
SoonerStart: https://sde.ok.gov/soonerstart
Early Foundations: https://www.autismcenterok.org/early-foundations/
Oklahoma Family Network Support Parent: http://oklahomafamilynetwork.org/what-we-do/talk-with-another-family/
AutismAwarenessMonth #AutismAwareness #AutismSupport #SoonerStart #EarlyFoundations
Welcome to April 2021 and welcome Autism Awareness Month. Today’s podcast is highlighting the Pervasive Parenting Center. The Pervasive Parenting Center serves families in rural, Eastern Oklahoma and Director Kodey Toney visits with us about how they started, what they do to serve families in Eastern Oklahoma, and the incredible investments they are making in the community.
Kodey brings personal knowledge, professional experience and a big side of fun and humor to the table when he meets with others or shares his story. He advocates, educates and spreads autism awareness everywhere he goes.
Oklahoma Family Network is thankful for the partnership we have with Kodey and the Pervasive Parenting Center.
To learn more about Pervasive Parenting Center: http://www.pervasiveparentingcenter.org/
Additional Resources Mentioned:
Sibshops: https://soonersuccess.ouhsc.edu/Services-Programs/Sibshops
SoonerStart: https://sde.ok.gov/soonerstart
Oklahoma Autism Center: https://www.autismcenterok.org/
Developmental Disability Council of Oklahoma: https://okddc.ok.gov/
Oklahoma Disability Law Center: http://okdlc.org/
Oklahoma Parents Center: https://oklahomaparentscenter.org/
Kodey Toney’s Book: https://www.amazon.com/dp/B07TTKFL5V/ref=rdr_kindle_ext_tmb
AutismAwarenessMonth #AutismAwareness #AutismSupport #SibsShops #PervasiveParentingCenter #SocialGroup #DDCO #RuralEasternOklahoma #BigFoot
On March 11, 2020, the WHO declared COVID-19 a global pandemic. Where were you? Listen in today as one mother shares her journey of delivery, when hospitals were trying to figure out what was going on and how to keep families, mothers and babies safe/healthy.
Brie Medaris and her husband have two incredible baby boys, River and Ronin, with two very different delivery experiences. Listen in as Brie shares a little about her NICU journey and the emotional toll it took on her, as well as the struggles COVID presented, as she sought support, help, and therapies in the midst of a pandemic.
MomsMindsMatter #GlobalPandemicDelivery #NICU #NICUvsCOVID
On March 26th, 2021 from 9:00am - 12:00pm, Oklahoma Family Network will host our 14th Annual Joining Forces Conference, with Keynote Speakers, Dr. Jennifer Jones and Dr. Kami Gallus (from Oklahoma State University) and we are excited to host them on the podcast today. After a brief introduction, sharing their mission and professional vision, they provide us a glimpse into their keynote address for the Joining Forces Conference.
We follow up Dr. Jones and Dr. Gallus' interview with Oklahoma Family Network Associate Director, Heather Pike, who answers some frequently asked questions about Joining Forces.
Join us for the 14th Annual Joining Forces Family & Professional Partnership Conference!
MISSION -- To provide learning opportunities for supporting individuals and families through partnerships of community members, agencies, and organizations throughout Oklahoma.
OVERVIEW -- Joining Forces: Family & Professional Partnership Conference brings together local, state, and national leaders to discuss best practices and promising practices in the area of family-professional partnerships. Come join us as we learn together from some amazing Oklahoman's and how we can all Foster Belonging with HOPE and working together in community. This is where you "belong".
JoiningForcesConference #FamilyProfessionalPartnerships #Belong #HowToBelong #Inclusion #IBelong #OthersBelong #Diversity #OklahomaFamilyNetwork #OklahomaStateUniversity
Welcome to Rare Disease Day, which is celebrated the last day of February every year. Today we want to honor all the amazing families who walk daily in the world of "rare", and take a moment to share one family's journey through birth, diagnosis, therapies, and awareness.
"Rare Disease Day is a day where people can see this and realize the hardship of fighting something you know nothing about." - Sumathy Lal
"Nothing about rare diseases is simple - not the diagnosis, not the daily care, not the long term." - Unknown
Rare Disease Day is designed to bring awareness to rare diagnoses and the journey many families face alone or quietly. Today, we hope you will hear the words from a beautiful young mom who faces the world of rare head on, as she searches for answers and understanding.
For more information on rare disease day please visit: https://www.rarediseaseday.org/
For more information on 1p36 Chromosome Deletion Syndrome please visit: http://1p36.com/
(Photo Credt: Scantling Photography)
Christel Longoria has shared her birth story many times with many families. This podcast shares a piece of her NICU journey, that primarily focuses on the emotional decision to provide Declan with a trach, and then a g-tube.
Christel is always willing to have tough conversations around hard topics with other families as they process making difficult decisions from a parent perspective regarding feeding tubes and tracheostomies.
GTubeAwareness #FeedingTubeAwareness #PrematurityAwareness #NICU #TrachAwareness #25Weeker #FeedingTherapy
If you've met the Mahler family, you have made life-long friends. Cara and Matt's son, Silas, born at 28 weeks and 6 days gestation, weighing just 1 pound, 11 ounces provided these first time parents with memories they'll never forget. Listen in as she describes the (minimal) early preeclampsia symptoms and the slow road to recovery, after Silas was born, including keeping her heart healthy after preeclampsia.
Cara shares how some amazing nurses took care of Silas and her in postpartum; and then describes why she didn't get involved in support groups initially, yet eventually sought out peer support as she transitioned home with a NICU baby.
NICUAwareness #SoonerStart #Preeclampsia #HeartHealth #Prematurity #IUGR
"In the United States a Black baby is 2-3 times more likely to die before reaching their first birthday compared to a white baby. A Black woman is 3 to 4 times more likely to die due to pregnancy or labor complications compared to a white woman. Providing informed, genuine, empowering, and evidenced-based support to Black families during the peri-natal period will make a difference with these statistics. When these services are provided to Black families by Black birthworkers we have the potential to make an even bigger impact." - For The Village, Inc.
Listen in today as Oklahoma Family Network introduces you to For The Village, Inc., a non profit established to enhance birth outcomes in the Black community.
Today you will meet Farah Antoine-Mayberry, OT, CLC and hear her heart, as she speaks to the: what and why, For the Village, Inc was established; and then hear how you can become an active part of the solution for better outcomes in the Black community.
To learn more about For the Village, Inc, visit: https://forthevillageinc.org/
BlackHistoryMonth #ForTheVillageINC #HealthEquity #BlackMaternalHealth #BlackInfantMortalityRates #BlackMaternalHistory
Today our guest host Tamra Crabtree, speaks with mom, Gabbi Gifford, about her twin girls Eliana Rose and Harper Mae, born at just 24 weeks and 1 day gestation. Gabbi gives us a glimpse into some heartbreaking and precious moments, she and her husband Sirandon, had during their 98 day Neonatal Intensive Care Unit stay.
We skim the surface on topics like prematurity, twins, raising a twinless twin, transition from NICU, integrating therapies into their lives, Oklahoma resources (SoonerStart, SoonerRide), and how we tend to compare our children to others.
To learn more about the resources Gabbi mentions in her podcast, please take a look at the resource links below: SoonerStart (https://sde.ok.gov/soonerstart) SoonerRide (https://oklahoma.gov/ohca/individuals/soonerride.html)
September is National Newborn Screen Awareness Month.
Jennifer Baysinger, Progam Manager for Oklahoma State Department of health has been a registered nurse for over 19 years. She obtained a Master’s Degree in Nursing Administration in 2013. Her primary career has been centered on the health of infants and children. In 2008, Jennifer joined the Oklahoma Newborn Screening Program as the nurse coordinator. She was in this role for three years and then had to move to another state with her family. During her time away from newborn screening she worked in a variety of nursing roles, but nothing tugged at her heart the way newborn screening does. Jennifer returned to the Oklahoma Newborn Screening Program as the Program Manager in summer of 2018 for the Oklahoma State Department of Health.
Contact Information:
Jennifer Baysinger, MSN, RN
Newborn Screening Program Manager
Oklahoma State Department of Health
405-271-6617 ext 56756
jenniferxa@health.ok.gov
Resources:
Oklahoma Newborn Screening Program Website: nsp.health.ok.gov
September is National Newborn Awareness Month:
Passionate about helping families find good quality healthcare that transcends cultural and language barriers, Annie Evans works to creatively engage different stakeholders in Expecting Health’s programs through outreach efforts, development of practical tools, and monitoring of impact for quality improvement. She focuses mostly on our online engagement initiatives from both a technical and conceptual perspective.
Annie currently manages the Newborn Screening Family Education Program which created Navigate Newborn Screening, the free, online educational module for families. Annie received a Master of Public Health from George Washington University.
Susan Mays lives in Mukilteo Washington with her husband and two children. She is a passionate advocate for Newborn Screening after their life got flipped upside down when her oldest daughter was born with a rare metabolic disorder. After an uneventful pregnancy and delivery they couldn't wait to start their lives as a family of 3. Then 2 weeks later came the call which would change lives forever.
Indie, Susan's daughter, had tested positive for a life threatening metabolic disorder which was thankfully caught during a routine public health program called Newborn Screening. Without this early detection and diagnosis, Indie's condition is lethal. Because of it, treatment and management was able to be started right away and Indie is having the opportunity to grow and develop typically. Susan believes every baby born in the U.S. deserves this same privilege and because of this she advocates for NBS in a variety of ways. One of which is volunteering with the Expecting Health team and is an ambassador for the Navigate Newborn Screening Program.
Helpful Links:
- Baby's First Test
- Expecting Health
- Navigate Newborn Screening
- Oklahoma Family Network
- Expecting Health Contact: info@expectinghealth.org
DeAnn and her husband Scott Warfel live in Oklahoma City and are the parents of five daughters ages 25 to 12. Three of their daughters are adopted through DHS and two are biological. DeAnn graduated from Oklahoma City University School of Law and worked in the health care field for many years; however, God called her home to home educate her children when their health issues became significant. Through the years their family has dealt with many concerns such as epilepsy, autism, bipolar, addiction, anxiety, depression, suicide attempts, self-harm, disruptive mood dysregulation disorder, RAD, and many more. DeAnn realized how important it was to find a network of people who could help you through some of these issues and people who could remind you that you are not alone. She has taught classes through the National Alliance on Mental Illness and continues to support families as she can. She currently continues to homeschool the last of her five children.
Oklahoma Family Network: http://oklahomafamilynetwork.org/
National Alliance on Mental Illness: www.nami.org
Valuable site for teaching how to deal with a child who is mentally ill. Helps with teaching communication skills and collaboration skills: www.livesinthebalance.org
Between 50 percent and 80 percent of adults in the United States have had a CMV (Cytomegalovirus) infection by age 40. Once CMV is in a person's body, it stays there for life. CMV is spread through close contact with body fluids. Most people with CMV don't get sick and don't know that they've been infected. (https://medlineplus.gov/)
CMV affects 1 in every 200 babies born. The symptoms range from completely asymptomatic to severe. It is the most common non-genetic cause of hearing loss at birth and unfortunately often contributes to progressive hearing loss. Many babies are born with no (or missed symptoms), but may later develop hearing loss or have other development issues. Pregnant women should take appropriate precautions to reduce their risk.
June is CMV awareness month. Guests Ellie Pryor and Cara Gluck share their personal stories of giving birth to their children whom received a diagnosis of CMV and what they would like other families to know about this common virus.
ADDITIONAL RESOURCES:
www.oklahomafamilynetwork.org
https://www.nationalcmv.org/
https://www.facebook.com/oklahomafamilynetwork/
In the first episode of "We Saved You a Seat", Joni Bruce (Executive Director) and Heather Pike (Associate Director) chat about how Oklahoma Family Network was formed, their involvement and their hopes and dreams for families in Oklahoma.