Discover how Child Life Specialists play a pivotal role in transforming the care experience for children with kidney disease and providing essential support to their families. "As a child life specialist, watching my tiniest patients grow and accomplish so many things...
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
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