This is a special repost of one of our most heartfelt and insightful episodes. Whether this is your first time hearing Jessica’s story or a revisit, her perspective as a mom of a child with Prader-Willi Syndrome will stick with you. What happens when a diagnosis...
Episode 137 | A son with Aicardi-Goutieres Syndrome (AGS)
Podcast Show Notes
On today’s episode of the podcast we hear from Lauren about her son’s diagnosis of Aicardi-Goutieres Syndrome (AGS.) She shares how her uneventful pregnancy followed by a NICU stay and numerous hospital visits with unanswered questions eventually resulted in a diagnosis. Lauren shares how coaching changed her life and how she is now a life coach for mothers of children with disabilities.
[4:32] How ranch living was a dream come true
[5:20] After an uneventful pregnancy, Lauren gives birth
[7:00] A nurse tells Lauren to get a second opinion
[9:15] Lauren and Katie chat about the NICU life
[11:00] How staying at the hospital added to the emotional and stressful times
[12:25] Asking about Lauren’s pregnancy history
[14:00] An MRI reveals some answers
[16:50] Living in flight or fight mode
[19:50] Leo stopped eating and had a swallow study
[21:00] The doctors grasp for answers
[26:30] Genetics appointment results
[27:30] How diagnosis day holds trauma
[29:11] Finding a specialist who has experience working with children who have AGS
[31:20] How Lauren found healing through coaching
[35:28] Lauren shares Leo’s love language
[37:24] Self care is what works for your stress management
[39:22] What is driving your action and feelings?
[42:27] Our definitions of being a good mom
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