"I've learned so much in this whole process. It's like you have a depth inside of you that resurrects as an advocate and high alert, and it lives inside of you when you need it." -Aspen, Willa's Mom In this episode of Child Life On Call, host Katie Taylor and guest...
Episode 162 | Kayla’s Story – A daughter with Ollier’s Disease
Podcast Show Notes
On todays episode of the podcast, Katie along with co-host Mijha Godfrey from Jambo Books, interview Kayla Gunderson, who’s daughter was diagnosed with Ollier’s disease. You will get to hear how Kayla navigated her daughter’s diagnosis just weeks after giving birth to her son and her valuable perspective as a nurse and former Child Life Specialist. We talk about navigating grief, the support of her spouse and loved ones and what Claire has taught Kayla along this journey.
[4:47] Mijha shares about Jambo books
[7:00] Kayla introduces herself
[9:40] Small bumps on her daughter’s finger
[10:27] Full body rash from amoxicillin reaction
[12;23] Playing phone tag with the doctor
[12:44] Mention of Ollier’s Disease
[15:29] Emotions run high after receiving a diagnosis of Ollier’s disease
[16:50] Blaming yourself
[19:12] Understanding Ollier’s disease
[20:40] Expressing her feelings at her postpartum appointment
[22:17] Ollier’s is a rare disease
[23:18] The delivery of information can make or break you
[24:07] Mijha shares how she learned of her daughter’s condition
[26:00] X-rays revealed she had endchondromas in her hands and feet
[27:59] The grief process
[29:41] Supporting those walking down the same road by sharing Claire’s story
[31:06] Being grateful for the timing of the diagnosis to be together as a family
[31:50] The support of family
[33:25] Genetics appointments and advocating for an earlier time
[34:22] Relationships and connections are important
[35:35] Understanding her own fragility
[37:00] Giving others the avenue to support you
[39:38] Coming to terms with the birth of her last baby
[41:10] Motivation and inspiration
[42:30] Listening to podcasts is healing
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