We Saved You a Seat

A Copper Penny For Your Thoughts: Episode 04 - The Bucket List

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 

CHD: One Mom's Experience with Diagnosis, Surgery and Support

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 03 - GTube, Ventilators, DNR, Palliative Care

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

 

Family Story: Down Syndrome, Oncology, & Health Equity - Angela Hornsby

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 

A Copper Penny For Your Thoughts: Episode 02 - More About Menkes

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

 

A Copper Penny For Your Thoughts: Episode 01 - Meet The Klingenbergs

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 

Early Hearing Detection and Intervention: Kaele Montgomery - Cochlear Implants

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

Dad Discussions, Episode 1: Jeff Roby

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

CMV Awareness Month - Episode Two: Linden Priddy

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

CMV Awareness Month - Episode One: Cara Gluck

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