Inside the Episode
Jess and Natalie discuss CHARGE Syndrome, a rare genetic disorder. They interview Chad and Hollie St. Arnauld, whose daughter, Cora, has CHARGE, about their experiences with learning about this condition and helping their daughter be as participatory, independent, and happy as possible. We review the common symptoms that present in children with CHARGE syndrome, and the process for diagnosis and acute treament. Chad and Hollie share their experiences in helping to promote Cora’s development, education, and social participation. They also share their personal experiences with learning to care for a medically complex child, use challenging medical devices, and adjust to the need for caregiver support.
http://sosapproach-conferences.com/about-us/the-sos-approach/ – the SOS Approach
Bone conduction implant
https://www.facebook.com/groups/BlenderizedRN/ – Great group for those wanting to feed their g-tube kids real food instead of corn syrup solid-based formulas.
https://www.facebook.com/groups/502557586477084/ – G-Tube Babies (G/J),(J),(N/G), and (N/J)
https://www.facebook.com/groups/momsoftrachbabies/?ref=group_browse_new – Moms of Trach Babies Group
https://www.facebook.com/groups/332148136907004/ – BAHA “KIDS CLUB” WORLD HEARING