We Saved You a Seat

Autism Awareness Month: Angela Donley with Oklahoma Family Network

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

Autism Awareness Month: Kodey Toney with Pervasive Parenting Center

 

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

Two Babies, 20 Months Apart: NICU vs. COVID

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

Joining Forces 2021: Meet Our Keynote Speakers and Some FAQ

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

Rare Day Awareness: 1P36 Chromosome Deletion Syndrome

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/

 

G-Tube and Trach Conversation: One NICU Mom's Experience

 (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 

 

NICU Awareness: Preeclampsia, Women's Heart Health, and Support through NICU

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 

For The Village, Inc: Enhancing Birth Outcomes in the Black Community

"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

NICU Awareness: 24 week twins, twinless twin, therapies, and hope

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)

National Newborn Screening Awareness Month (Jennifer Baysinger)

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