This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Thursday, June 14, 2018

Organizing, Managing, and Traveling with Medical Supplies

Some of the people who live with the constellation of symptoms and diagnoses that I discuss on this blog are so sick that we require an intensive level of medical intervention that necessitates using, storing, and transporting large amounts of medical supplies.  This can include supplies needed for tube feeding and TPN (IV feeding), central line care, infusions of medicine such as IVIG therapy, oxygen therapy, braces for joint support, and more.  The sheer amount of supplies can quickly become overwhelming but for these supplies to help we need to know what we have so we can avoid running out and also be able to find what we need quickly.  Below are ideas and videos by people with a variety of medical needs showing the systems and tricks that they have found work for them.

Storing and organizing supplies:
Room Tour (from Cheyanne Perry’s blog Hospital Princess)
How I Store all of my Medical Supplies (Feeding Tube, Central line, Medication etc)

Transporting and traveling with medical supplies:
New Feeding Tube and  IV Therapy Tools! | Travel Supplies & Backpacks (from Chronically Jaquie)
Traveling with IV Nutrition or Tube Feeding Webinar
PACKING MEDICAL SUPPLIES FOR AN AIRPLANE TRIP (from The Frey Life
My Chronic Illness Travel Essentials