/CHARGE Syndrome: Client Story Telling

CHARGE Syndrome: Client Story Telling


Cora St. Arnauld - CHARGE SyndromeCora St. Arnauld - CHARGE Syndrome

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.

References:

CHARGE Syndrome

http://pedsinreview.aappublications.org/content/38/1/56.full

http://sosapproach-conferences.com/about-us/the-sos-approach/ – the SOS Approach

Bone conduction implant

http://www.cochlear.com/wps/wcm/connect/us/home/treatment-options-for-hearing-loss/bone-conduction-implants

 

Resources:

http://www.nbcnews.com/nightly-news/video/inspiring-america-amputee-gives-stunning-performance-on-prosthetic-945566787507

http://thebeautifulbrain.com/2016/06/self-reflected-greg-dunn-interview/ – Brain Art

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

 

2017-08-01T12:07:36+00:00 June 18th, 2017|