Day 191

The other night when I was up checking Craigs glucose at 3 am, he was low.  I went and got him some juice.  He sipped it all with his eyes closed.... Then 15 minutes later I rechecked him and he was good, so then he had to have a protein snack to sustain him until the morning, because well, juice is a quick sugar and will wear off soon..
Well he had to actually wake up...at 3 am..and have a snack.
No one really wants to eat at 3 in the morning..

I felt so bad for him..

I knew he had not slept well and wasnt getting "good" sleep when he has to be woken up to eat..
But I also knew that he had to get up by 530 in the morning to go to an early morning soccer practice..then go to school all day after that and do his AIMS testing.

"I" knew this...

Then the next day his scout leader sent a message to see if Craig would be going on the camp out this weekend...
I thought about it and decided I couldnt sent him.  He had just had a night low and well, I cannot ask his scout leader to check him in the middle of the night and I cannot count on Craig to wake himself up to check.. so what if they are camping and he has an overnight low??
I had to text his leader to tell him that Craig would not be going.

"I" knew why....

Then another night he was really high at midnight. I dosed him while he fell back to sleep..Then at 3 am he was higher so he had to get out of bed and go check for Ketones.. He had some!  SO when that happens it usually means something is wrong with the pump and he is not receiving the insulin...
So then at 3 am we changed out his inset.
What does that consist of??  He cleaned his arm off, and got a new IV about 1/2 an inch long into his arm that connects to the tube he receives his insulin from.   Well we took out the old one and yep, it was kinked..no wonder he wasnt getting insulin.  after that, he got to go back to sleep...


"I" knew why he was late to school the next morning..


It really made me think about all that goes on in Craigs life..all he goes through..

When he gets to school and he is just exhausted... and his teacher thinks he stayed up to late or is being lazy...when in reality he was up all night with low numbers.

When he rarely makes it to scout activities lately and people think he doesnt want to come or he is slacking...but the reality is we are overwhelmed with the pump and trying to figure all of his numbers out and Im just not comfortable sending him away for a weekend...

When the next day when he doesnt feel good and sleeps in and is late for school his teacher thinks he is irresponsible... but the reality he had been up feeling crappy with ketones and had to change his pump site in the middle of the night.

Those are just 3 examples... but most of the people Craig comes in contact with have NO idea the things he endures..and he just does it.. He goes on with his day after getting up several times the night before..He goes to soccer practice, goes to school. comes home to do homework, chores and tries to find time to see his friends and pass scout things off, all while fighting this disease.

He doesnt really complain about it and he just lives on....

Hopefully soon we will get all of the numbers right and we will not have to check his glucose at night...but for now, we are exhausted...so if you see us and wonder "what the heck??"

thats why!!  This is a 24 hour a day disease...

Today he called from school because it is AIMS week and he has to have good numbers to test.. well he was high..Then half an hour later he was even higher.
So he was calling to see what he should do.  He had to go to the nurse and change his pump site...at school.... It takes so much responsibility and maturity to deal with this disease how he does and Im so proud of him...

When you see Craig, you dont see all of "this"..
You see a happy, healthy, busy kid..

You dont see the late nights, the blood checks, the highs and the lows, the carb counting, the inconvenient pump site changing,  the stress, the ups and the downs...

Its all just behind the scenes in his life....