We Saved You a Seat

RARE Diagnosis: Angelman Syndrome, Episode 03

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 

RARE Diagnosis: Angelman Syndrome, Episode 02

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/)

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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

RARE Diagnosis: Angelman Syndrome, Episode 01

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

 

A Copper Penny For Your Thoughts: Episode 06 - Marriage and Menkes Continued...

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

 

 

A Copper Penny For Your Thoughts: Episode 05 - Marriage and Menkes

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

 

 

 

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