We Saved You a Seat

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