Doctors;

One of the words used to describe Jordans disease is degenerative. Heres the definition for you.

de·gen·er·a·tive /dəˈjenərədiv/ Learn to pronounce

adjective

1. (of a disease or symptom) characterized by progressive, often irreversible deterioration, and loss of function in the organs or tissues. "degenerative diseases"
   

   • of or tending to decline and deterioration. "the young generation had fallen into a degenerative backslide"

With that being said every single part of his body is being affected. I didn't really realize this to be honest with you all till recently. Not until I finally grabbed a business card for every doctor we see and just took a deep breath. We are now at about 14 providers. So when I sit in on a visit where I am summarizing it all for one provider or meeting a new one or even following up with one I always ask what part of the body do you want to begin with. I then have to think about the last thing that was spoken about with that specialist of the body part we are talking about and just keep going up the list. I wonder how in the world I remember all these things! Parents I swear we have super powers! I cant tell you that we always agree but we all as a team make sure that our decisions for Jordan are the best for him. I will take their recommendations and what they are saying serious and make sure that it aligns with Jordans life plan. I tip my hat to providers and all the knowledge they have and all the amazing stuff they do. I always hope that people that choose the career path of becoming a doctor always do it with the correct intentions. As a parent who spends about 2 days a week in a doctors office and who has worked in the medical field for quite some years I see what great things doctors do and I think thats why Jordan's medical team to me is so important. I always want to make sure that they are a good fit for us and our needs because I need to make sure that we are always heard. We are so thankful for Jordans Neurologist/ Genetics , Neuropsychologist, Urologist, Pulmonologist, Sleep doctor, Cardiologist, Orthopedic doctor, Gastroenterologist, Otorhinolaryngologist, Psychiatrist, Ophthalmologist, Palliative care doctor, Physical therapist, Orthotic Specialist, Primary care provider who keep us alive and care for him. On top of the doctors that care for us we have a case workers and nurses who are assigned to us and other hospital staff that checks on us and our sanity. I call them the fun crew that help provide Jordan with fun things to do or gifts that make his office visits and hospital stays worth it.

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