We FINALLY heard from the Mayo Clinic today. They would like to see and evaluate mom. This is big because the Mayo Clinic is on top of the latest stuff and they have access to some cutting edge things that we would really like to find out about. So we are pretty excited. Mom was just 100% sure that we were going to get a rejection letter in the mail ... but we didn't.
They may have nothing to offer us other than a second opinion, but we won't know unless we try.
Which kind of leads me to explain what happened with our previous neurologist. He's a nice guy and I'm sure a great doctor. He helped us get some really important tests done and for that I'm grateful, but that's kind of where his helpfulness ends. His approach is to wait a year, have mom repeat the neuropsych testing and see how much she digresses. The last appointment we had with him was really rough. He was very dismissive of our questions and we just did not feel like he was listening to us at all. At one point I told him what the neuropsych doctor had said about life expectancy and his response was yeah that's true. And I said and you still want to just wait and watch... yep. Well okay then.
Here's the deal we know there is no cure. We are coming to grips with it as best we can, BUT there are medicines, there are trials, there are doctors who are aggressively and actively pursue treatments, so we have opted for a second opinion.
So we got a call from the Mayo Clinic two weeks ago. They asked a TON of questions and told me they would get our file in front of a doctor and let us know if they thought they could offer us a consult. They called today and they can, so to us that's a pretty big deal!!
We have a couple other referrals out there that we are waiting on as well. So we shall see what doors open and what doors we feel led to go through.
Mom is definitely sleeping better with the CPAP machine. She's still dreaming and waking dad up (last night she was on a covert operation to save a baby...) but she feels more rested and that is making a lot of difference.
She and I had a girls afternoon and went to a movie. It was nice to get away just the two of us. I love that baby but sometimes it's okay for his dad to keep him for a few hours! :)
I know she's worried about me going back to work. Our lives have become incredibly intertwined this summer. I'm actually looking forward to the routine of going back to school, but I know how hard this time is going to be for her. Her friends are completely amazing though. She gets taken to lunch more than anyone I know :)!
Thanks for your prayers, your notes, your thoughts and your love. You guys mean so much to all of us! Keep praying ... God is still in the miracle business!
No comments:
Post a Comment