Edith’s condition has placed her into a group home while dad and I learn her cares before being able to bring her home. A little fighter who was told to be dying is making a huge comeback!!
Edith has been defying odds! Her home is about  an hour from ours, where she has 24/7 care. I also have someone I know who works with Edith so she is in great care! We have 24/7 access to her and this is a very nice home she’s in. 
We tried a medication that seems to be working for her, no neurostorms !! Her apnea is also improving a little.
We still travel daily so any support is GREATLY APPRECIATED!!!! There is also a lot that insurance will not cover. So we’re still finding things needed for her at random: thank you to ALL who have contributed to this journey for support over our family in this battle !
God is good and working on her daily!