Speaking of technical difficulties...it seems that Weston has one. We have spent a flurried week at the dentist, doctor, and eye doctor's offices. Three kids times three appointments. Waiting rooms, paperwork, and huge bills later we find out that we have relativly healthy kids and that Wston has flat feet and most likely also has something called "Myasthenia Gravis". We had heard this term before, when he was just a few weeks old but had thought it had been ruled out. When we first did our internet search on MG just 5 years ago, the news was grim. After re-researching it this go-round, I wonder if I had somehow been researching the wrong thing all those years ago. Nothing is the same. The dire predictions that had brought us to tears- the thought of breathing tubes, and feeding tobes, and early death....they are no longer there. Now it is replaced with this sentance: Although once a severe and often fatal illness, myasthenia gravis can now be well managed with several relatively safe and effective therapies.
I had a really bad day yesterday and threw myself a good ol pity party, sans cake and icecream (which was really stupid. According to my children, no party should EVER be without cake and ice cream). Then I realized that I should be shouting for joy for two reasons...
1. My child is not going to die from this disease.
2. He will never be able to be drafted into the military.
I am unsure as to what the future holds in regards to this. Our next step is to see a nurologist and we will go from there.
Those eyes are what is causing all the hullabaloo. I wish I could explain in layman's terms what it all means, but scientific medical information reads like this to me: "blah blah blah blah gobbldeegook" If you are interested, here is a site that explains it a bit more.
Myasthenia Gravis
1 comment:
Wow, what a difference 5 years makes, huh? If I were there I'd give you a hug. And some chocolate cake with chocolate frosting and chocolate ice cream. With chocolate sprinkles. That always makes ME feel better.
xoxo
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