What Am I Thankful For What am I Thankful For

Update on how our 2022 has been going

Why we haven't been recording
Update on Maddux's school year
Professional Updates

Brain Surgery #14

Diagnosis from routine MRI
Typical signs of shunt failure
Famous sports figures who wore #14 (https://www.ranker.com/list/best-athletes-who-wore-14/ranker-sports)

Our brain surgery playbook

Quarantine leading up to surgery
Have to shave his head bald
Bowel management
Stay at a nearby hotel

Spring Break - Hawaii Trip

Trouble with COVID Protocols
Flying with special accommodations
Beach photoshoot
Hiking Pill Box (http://www.lanikaipillbox.com/)
Rental Equipment (https://www.babyquip.com/)

Maddux's other accomplishments

School year awards
Challenger Little League Baseball
Abilities Expo
Celebrity Encounters (https://www.instagram.com/whatamithankfulfor/)
Maddux was in a children's book (https://theablefables.com/product/garys-gigantic-dream/)
Complete his 5th 5K this year

Struggles with Medical Insurance

Lagging authorizations
Rising Co-pays
Outright denials of things that he needs
Leads to hours and follow-up calls and frustration
How do other families navigate this?

Check out the blog: https://thankfulforpod.wpcomstaging.com/home/

As we continue to tell our story of Fetal Surgery at UCSF we get into post-surgical and recovery topics such as:

-The 1st ultrasound after fetal surgery

-How to help your loved ones in the hospital

-Life on bedrest

-A surprise request to sign a DNR order at the worst possible time

-A THANK YOU to nurses

-The outpouring of support for Maddux (including his namesake)

-My baby is no longer moving/kicking

-Our car gets towed in SF, insult to injury

-The Fetal Surgery PLAYBOOK

In Episode 5, we discuss the amazing experience that is Fetal Surgery to repair Spina Bifida (Myelomeningocele).  This process includes a surgical repair to a fetus at roughly the half-way point of a pregnancy.  The baby is operated on in-utero and then placed back into the uterus to continue the pregnancy for as long as possible until a "second-birth" is needed.  This procedure comes with some major benefits but also several risks to an otherwise healthy mother and her baby.  We share the entire experience leading up the the day of surgery in this episode.

Subtopics include:

-The MOMS trial: https://www.chop.edu/centers-programs/center-fetal-diagnosis-and-treatment/management-myelomeningocele-study 

-A breakdown of some of the positive outcomes of Fetal repair 

-Avoiding the s-word (Shunt)  

-What we were hoping to gain from Fetal Surgery 

-We began to educate our family and friends around the diagnosis, the plan for fetal surgery and potential outcomes 

-Traveling to UCSF: https://fetus.ucsf.edu/spina-bifida/ 

-Navigating career challenges and paid leave 

-Subtle coincidences 

-A fearless mother on the day of surgery

Thank you for listening!

www.thankfulforpod.com

In Episode 4, we continue to unpack the moments and reactions to receiving Maddux's diagnosis of Spina Bifida.  In this episode, we take a deeper dive into how we dealt with our feelings and depression.  How we each managed to pick ourselves up from depression and mourning and see the light that would lead to an important decision.  How would we proceed with this pregnancy?

Other subtopics:

-We believe that families should have the right to choose how they proceed post-diagnosis 

-The 2nd opinion that set us back on track 

-Bedside manner and connection is so important 

-The best advice we have ever received 

-RESEARCH - RESEARCH - RESEARCH 

-What Do You Do Dear? Blog

-#spinabifida #spinabeautiful

-What do families affected by Spina Bifida look like?

-What would happen to our family?

-Meeting with the Jenkins

-Are we really doing this Fetal Surgery thing??



www.thankfulforpod.com

Topics:

Creating the Podcast


We discuss the challenges in writing, creating, recording, editing and publishing new episodes.  We also discuss feedback from our listeners

Special Needs Parenting Means______?


We discuss what Special Needs Parenting means to us based on our experiences

Listener engagement from Social Media


Feedback from Part 1 of the Spina Bifida diagnosis episode from listeners affected by Spina Bifida

Update on Maddux’s Return to School


The challenges, setbacks and resolution that lead to Maddux going back to school (in-person) for the first time in over 2 months after his horrific injury

Our son is growing up right before our eyes


A night out with Maddux

Do we drink too much??  (Spoiler: Probably)

@whatamithankfulfor_ on Instagram

www.ThankfulforPod.com

In Episode 3, we discuss the events surrounding Maddux's diagnosis of Spina Bifida.  This diagnosis happened in the first trimester of the pregnancy and forced us to deal with the so many emotions.  Any parent that has faced the diagnosis of a disability or abnormality can relate to our account of the story.

Other subtopics include:   

-Infertility struggles recap  

-Nutrition Response Testing (For Fertility)

-What causes Spina Bifida?     

-Folic Acid/Folate Supplements   

-Don't blame yourself (even though you will!)   

-Genetic Testing   

-Diagnosis Day   

-When doctors recommend abortion   

-The different phases of diagnosis grief


Shock  
Denial  
Anger  
Depression  

-Get off the mat and do your research!     

-2nd Opinion  

-Decision timetables

-Fetal Surgery https://fetus.ucsf.edu/spina-bifida/   

www.thankfulforpod.com