1 in (over) 100,000

I always knew God created Micah and made him unique and blessed but listen to this! Glycogen Storage Disease is said to be found in 1 of 100,000 newborns, and of those there are over 10 different types of the disease one could have. The majority of people diagnosed have either type 1a or type 1b. We know Micah is not a type 1. That kind of blows my mind how rare this whole thing is. He really is one in a million! I've been getting anxious to know what type of glycogen storage disease Micah has. Once we know what type we will know more about what is going on in that little body of his. Part of me is worried that he wont even fall into any of the known types because the disease has so many variations and his symptoms are so different than most. But that would just make him even more unique than he already is. When I talk to the doctors this week I will ask if they have heard anything yet. 

We've done two nights of 2 am wake ups. Tim, AKA super daddy, has been getting up for it. I am usually awake in bed during it anyway but I fall back to sleep right away if I don't get out of bed. (If I get out of bed I'm usually awake for at least an hour). I know eventually it will become a routine and we will take turns and hopefully I will learn to sleep through Tim's turn and fall asleep faster on my turn. 

I am not a doctor. I need to remember that because these ketone level numbers just do not seem to make sense to me. I'm hoping the doctors feel differently. I have been wondering if somethings is wrong with our monitor and we finally decided to test it tonight. It tested fine, but I think there is just a larger margin of error for every read than I would like. The reason we have not wanted to test it is, the ketone strips are $2 each, so I didn't want to waste one on a test. The reading is to the nearest 0.1 and the test said that the monitor is functioning properly if the test result was between 0.5-1.1. So does that mean that there is a 0.6 margin of error every time? I guess if there is then maybe his levels do make sense? Again, I am not a doctor. 

So I had heard about this program and Doctor Weinstein, and when I was looking at the site I thought to myself, wow that is a much better explanation that I could ever give. So here is a website that gives a lot of great, easy to understand, information on Glycogen Storage Disease in case my attempt was not quite enough. UFHealth Glycogen Storage Disease Program