Another day of waiting. I've been here since 7:30am waiting to speak to the neurologist, it is not 6:08pm...still hoping he will pop in.
Mornings are a waste. Nobody, (general dr, speech/physical/respiratory therapist and Neuro) shows up until about noon. Which then means any sort of treatment or test has to wait until the next day.
I voiced this to the general Dr. and he said they are doing an MRI from the head to the butt tomorrow. He gave another name of what this might be, get ready its a long one: Acute Disseminated Encephalomyelitis. Have done some research on it, ummm not to clear what it is. It seems like its a real general diagnosis.
We have voiced our frusturation with our case worker about the slowness of things, hoping our persistence pays off. She was going to call the neurologist and get back to me. I haven't had a phone call or seen her come back in.
Physical therapist determined that there is definitely some weakness in his shoulders and legs. And he is not able to see peripherally out of his left eye. Some double vision when both eyes are open.
New symptoms are a little nausea and headaches.
I have a small notebook that I keep track of everything in...and a page of questions for the neurologist! I wish he would come in, I've paged him myself an hour ago. "Dr. Yuriy Verpukhovskiy, if you are out there we are waiting!!!!!!!!!!!!!!!"
Waiting, waiting, waiting........
Thanks to all the people that stopped by today, its nice to see your smiling faces. :)
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2 comments:
wow! what amazing love and support you are providing and the strength you have is outstanding given the situation. I can only imagine how difficult the situation is for you and Evan. You are both in our thoughts and prayers as you continue to persevere. Thank you for the updates and window into your world. Keep Strong! We love you both.
Thank you for the updates, we think about you guys all the time. My mom was diagnosted with an autoimmune disease just last year, it came on really sudden as well. You are so awesome, you will get the answers you need - just keep being persistant! Keep the updates coming.
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