When Laura's daughter was diagnosed with leukemia, her world stopped. What followed was a powerful journey through fear, resilience, and fierce advocacy. In this episode, Laura DeKraker Lang-Ree—a lifelong educator and now author of The Cancer Parent’s Handbook—opens...
Episode 165 | Kelsey’s Story – A daughter with gastroparesis and hereditary spherocytosis
Podcast Show Notes
Katie, along with co-host Serheen Noor-Ali from Hello Sleuth interview Kelsey Ward, mom to Scarlett who was diagnosed with gastroparesis and hereditary spherocytosis as an infant. Kelsey shares the ups and downs of what it means to be a medical mom and how Scarlett’s diagnosis strengthened her marriage. Body confidence is something near to Kelsey’s heart. She shares about how she empowers Scarlett to be proud of her g-tube and scars. This episode is packed with great dialogue and you will get at insight from both Kelsey and Serheen on navigating medical parenthood.
[3:40] Kelsey introduces herself and her family
[4:04] Finding out she had a blood disorder
[4:31] Scarlett was losing weight at 2 months old
[6:10] Gastric emptying scan revealed answers
[6:56] G-tube placement
[7:29] G-J tube placement
[7:57] Pyloroplasty surgery success
[9:27] Behind on developmental milestones
[11:24] Connecting with parents on social media
[12:20] Feeding Therapy 101
[13:21] Swallowing vs Textural
[15:10] Sibling bond and integration
[16:00] Balancing information sharing with her siblings
[17:26] Medical supplies and home integration
[18:46] Finding your family’s new normal
[21:09] Post discharge to do lists
[21:39] Post g-tube replacement
[22:58] Hospital shower woes
[24:55] Prioritizing yourself
[26:02] Celebrating everything
[27:46] Perspective on body image
[29:12] Lack of accessibility
[31:00] Everybody is different
[33:12] Sharing about
[34:13] Do what works for your family
[36:12] Social Media boundaries
Connect with Kelsey
Link to Present not Perfect’s store front here.
Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.
Parents, download our free parent starter kit.
When you download our starter kit, you’ll learn how to:
- Give medicine to your child without it becoming a wrestling match
- Prepare your child (and yourself) for a shot so they can feel less anxious
- Create and use a coping plan for any medical appointment or procedure
The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.
Child life specialists, get affordable PDUs on-demand here.
Shop for your CLOC gear here.
You Might Also Like…
259: Navigating Childhood Loss Through Storytelling -B.R.’s Story
This episode is dedicated to Katie’s dear friend Joe, who recently passed away, leaving behind his wife and two young sons. Joe’s story reminds us to live in alignment with our purpose and to cherish the people we love. In this heartfelt episode of the Child Life On...
258:How a Nurse Practitioner Faced Her Daughter’s Tetralogy of Fallot Diagnosis- Sarah’s Story
We’d like to extend our sincere thanks to our episode sponsor, reStickity®. Their innovative, mess-free reusable sticker sets allow families to personalize hospital spaces with familiar photos and comforting images, helping bring a sense of home to the hospital. To...
