We saw a new genetics Dr today and we weren’t a fan. I get what she was trying to say but I feel like she said it all wrong.
She told us addyson has severe autonomic dysfunction and we need to accept that and move on w living life. I feel like we have done that. we live out life and I think we are living it well. Addyson lives hers well too! Some days are better and some days are tough but she never let’s it stop her.
In the same breath the Dr said we want her goal to be less drs and more school but then said she should really be seeing an endocrinologist as well. Addyson spoke up and said I thought you wanted less drs.
She said she thinks so many of addysons symptoms are her autonomic dysfunction and that it’s tough because drs want to do XYZ If a and b are wrong but with Dysautonomia that just doesn’t work. She said it makes it very tough for drs. She reminded us that there is no cure, no fix, just treating symptoms … which we are doing
It’s all so much and I think we are doing well, so it just seemed like a crappy comment.
After that we had pt and ethen had cycling.
Pt went well but it’s always concerning when you hear the pt say to your daughter “no fainting please” 🤦♀️
Ethen is enjoying cycling tonight as always!
I had a phone call today with a root cause Dr who said she could get to the root of what’s causing my PVCs, however her price Is out side our ability so we will keep trying to figure things out. I know we don’t always get to know the whys but I really struggle with that
Beaming with hope 