Resources

Caring for a Child with a Tracheostomy

St. Jude Children’s Research Hospital: Educational Series for Families. Information includes how to change a trach tube; changing trach ties; cleaning the trach tube; home care trach supplies; cleaning the trach site; how to suction; things to avoid when your child has a trach; preparing the trach to-go bag; and using the passy-muir valve http://www.stjude.org/stjude/v/index.jsp?vgnextoid=473a3d5ae6b0d110VgnVCM1000001e0215acRCRD

Feeding Tubes & Blended Diets

Feeding Tube Awareness Foundation: The Feeding Tube Awareness Foundation is dedicated to providing parents and caregivers with the information needed for day-to-day life with a child who is tube-fed. Moreover, we strive to raise awareness so that children who are tube-fed enjoy increased acceptance in society and parents have greater support in their care.http://www.feedingtubeawareness.com/index.html

Real Food for Tubies: Real Food for Tubies is a nonprofit organization dedicated to providing tube-fed individuals and their carers with information and support in adopting and making the most of a blended diet when medically appropriate. We also provide information and support regarding blended diets to dietitians and other healthcare professionals. http://www.foodfortubies.org/

Homemade Blended Formula Handbook by Marsha Dunn Klein, MEd, OTR/L and Suzanne Evans Morris, PhD, CCC-SLP: The Homemade Blended Formula Handbook is a book is designed as a reference and “how to” for parents and professionals who together are making the choice to try a homemade blended diet for tube feeding. http://mealtimenotions.com/products/book-homemade-blended-formula/

Resources for PREEMIES and NICU Families

Hand to Hold: Hand to Hold is an organization intended to provide comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications. http://www.peekabooicu.net/

Peek A Boo NICU: Peek-a-boo ICU was created to provide support to parents as they face the emotional journey of the NICU– Empowering parents with knowledge, offering support, and encouragement along the way. http://www.peekabooicu.net/

Graham’s Foundation: Established in 2009, Graham’s Foundation was established to honor the life of Graham and has become a premier global organization for parents going through the journey of prematurity.  Graham’s Foundation offers resources, programs, and connections so parents are supported, empowered and hopeful throughout their journey.  Graham’s Foundation is committed to a world where no parent goes through the journey of prematurity alone. http://www.grahamsfoundation.org/home.html

 

 

 

 

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