Advertise on podcast: What Am I Thankful For

Joe and Dez get real about a season that's felt a little off — and commit to showing up as their true, unfiltered selves from here on out. Then they dive into the biggest news of the season: pulling Maddux from his home school district after a budget cut stripped his one-to-one support, and the decision to homeschool for 6th grade. Along the way, they cover firing (and finding) the right pediatrician, walking away from a medical therapy program that stopped serving Maddux well, and the exhausting-but-necessary reality of appealing denials. If you're a special needs parent stuck in a system that isn't listening, this one's for you: you have options, and you don't have to settle. In this episode: Why Joe and Dez are dropping the "performing for the camera" energy and just talking straight, F-bombs and allThe full story behind pulling Maddux from his school district after 5 good years fell apart in a matter of monthsWhat actually happens behind the scenes when a district makes budget cuts that affect a medically complex kidWhy documentation and "recap it in writing" is the special needs parenting survival skill nobody tells you aboutFiring a pediatrician's office — and finding a new one within a week that actually got it rightWalking away from Maddux's medical therapy unit in search of better careThe regional center appeal that got overturned in the courtroom before the judge even had to ruleA practical breakdown of how the appeals process actually works — mediation vs. going in front of a judge, and why they usually skip straight to the latterWhy "the denial is when the fight has begun," not the end of the roadWhere to actually find support and resources (hint: it's rarely the people who are paid to provide it) What Am I Thankful For (WAITF) — a podcast about special needs parenting, advocacy, and finding your people.

Joe and Dez recap how Maddux found his way to Angel City Sports and the Junior Adaptive Camp in San Diego — from wheelchair basketball to archery to making friends IRL. They also share an update on Maddux's medical journey, including his major spinal fusion at CHLA and his recovery since. Timestamps: 00:00 Camp Application Shock00:33 Podcast Welcome Back00:52 Discovering Angel City02:13 First Games Nerves03:06 Wheelchair Basketball Breakthrough03:36 Angels on Earth05:07 A Place Without Apologies05:51 Caregiver Question Matters06:28 Day Camp Logistics07:41 Independence and Confidence Boost09:02 Medical Team Support10:25 New Sports Every Day11:14 Free Camp and Community11:55 Meeting Friends IRL12:44 Trip Planning and Packing14:55 Packing Nonnegotiables15:56 Wheelchair Forgotten Story16:38 Rolling Medical Tote Hack18:00 Tetris Packing The SUV19:11 Four Year Medical Pause20:15 Kyphosis Curve Watch23:24 Spinal Fusion Reality25:52 Recovery Milestones27:57 Gratitude And Wrap Up

We're back. After a four-year break, Joe and Desirée return to share why they stepped away, what's changed, and where things stand now with their son Maddux — an 11-year-old born with spina bifida and achondroplasia. In this episode: The real reason behind the podcasting break, Desirée putting her career on hold to become Maddux's full-time advocate and caregiver, the elementary school incident that changed everything, a current struggle with their school district over budget cuts affecting Maddux's LVN paraprofessional, and the community of families that keeps them going. If you're a parent navigating a diagnosis, caregiving, advocacy, or just need to know you're not alone — this one's for you. Timestamps:00:00 – We're back: reintroducing the show02:07 – Why they started WAITF05:10 – Setting the table: what to know about their family07:01 – Explaining the break in podcasting07:33 – Desirée putting her career on hold17:57 – The elementary school fundraiser and standing up to discrimination20:12 – What's next: storytelling episodes vs. real-time updates24:39 – Running back Maddux's elementary school journey27:38 – The incident: the stairs, the hospital, the aftermath30:05 – Finding Nicole: their one-to-one LVN44:39 – 2026 budget cuts and losing Nicole's position54:15 – Press coverage and public reaction1:04:39 – What they're thankful for

Update on how our 2022 has been going Why we haven't been recording Update on Maddux's school year Professional UpdatesBrain 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 hotelSpring 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 yearStruggles 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

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

In Episode 2, we begin to tell our story.  The first chapter of which is about Unexplained Infertility.We wanted to jump right in and discuss a topic that many have experienced but almost nobody talks about.  Other subtopics include:  -The Stigma of Infertility  -Struggles of "trying" unsuccessfully  -When sex isn't fun anymore  -The sales tactics of modern fertility clinics  -Why doesn't health insurance cover fertility treatments in America?  -Clomid Treatments  -A woman's biological clock  -Nature vs Science (how far are we willing to go?)  -Intrauterine insemination (IUI)  -The mean fertility nurse  -We finally found the right doctor for us!  (Dr. Evans)   https://www.pfcla.com/doctors/michele-evans/  -Failed attempt at IUI  -We have a heartbeatwww.thankfulforpod.com

We discuss the following: -Additional Goals for the Podcast Create awareness towards Local, State and Federal programs that help families with children that have disabilities How we manage to balance Maddux's schedule and needs with our marriage and professional goals -Current Events that have happened since deciding to release the pod Every special needs parent's nightmare! Maddux's horrific accident at school (9/7/21) that landed him the Emergency Room The struggles of trying to get him back to in-person schooling SAFELY How the public school system treats children with disabilities -Halloween - An Adaptive Wheelchair Costume Retrospective Why Maddux's Halloween Costumes are so important to us Blog Post: https://thankfulforpod.wordpress.com/2021/10/25/wheelchaircostume-2/ News coverage and support -Spina Bifida & Dwarfism Awareness Month (October) What does it mean to have a child with Spina Bifida? What does it mean to have a child with Dwarfism? A Dual-Diagnosis -Abortion Story of Matteo: https://apple.news/AbJMiavRSQxew4SwE-QCRig Doctors seem to talk families into abortion during the diagnosis Mentioned: @keep_goin_owen Hope you enjoyed the show, please check out the website: https://www.thankfulforpod.com/

We discuss the excitement and the vulnerability around starting the podcast. Introductions Goals for the Pod: Create awareness Help families that are experiencing one or several of these topics Advocate for those with disabilities Tell our story honestly and truthfullyWe want to share our amazing journey and celebrate the good times along the way!