Tuesday, May 8, 2012

T1 Tuesdays: The highs and the lows.....mostly highs

It's been awhile since I've posted an update on how we're managing our daughter's Type 1 Diabetes.
I guess because there hasn't been much change, I haven't been very motivated to talk about it.
She had her quarterly endocrinologist visit one week ago, and honestly, I dreaded taking her.
So I pawned it off onto my husband.
He was game, and I love him for that.
I love that he isn't afraid to find the building downtown, go through the registration rigmarole, fill out the monotonous paperwork, and get the same 'ol information from the professional we see that particular day.
You see, we rotate.
One visit we see the actual endocrinologist, and the next visit 3 months later, we see the physicians assistant.
I felt like we were going to see the principal knowing that we were failing in class.
I was just so stressed out about hearing how we were failing at that TOO, that I was pretty distressed.
Sure enough, Ashlyn's A1C hadn't changed one tiny bit.
Not even a hundredth of a percent.
Still holding at 8.9%
Even with all the stupid intensive charting logs.
So we just keep on going.
Changing nothing except the amount of long-acting insulin she gets.
Is that it?
I mean, is that the only thing we can do?
I've figured out that what I really need to do is send my struggling learners to school.
That way I can remember to remind her to check her blood sugar every time she puts something in her mouth.
That way I'm sure her numbers are written down every time she checks and we can better gauge any trends she may or may not be exhibiting.
That way I can pay better attention to what she puts in her mouth.
(She does not sneak food, but what child doesn't forget now and then and just eat without thinking about how it will affect them later on?)

But I don't have that option.
We just cannot, in good conscience, send our children to our local public schools.
Private schools are totally not within our financial means.....not even close.
Tutors don't like to help children for free.
Believe me, I've tried finding scholarships or grants or whatever is out there to help.
We fall into every single loophole known to man......literally.
So we're back to square one.
Life is still marching on.
We can just keep doing what we are doing, and trying to do better.
It would be just miraculous to have our continuous glucose monitoring system available to us......
but again, not within our means......not even close.

So, I worry.
I worry what the long-term affects will be on my sweet girl when she is my age.
What will be her quality of life?
I worry that we're failing at giving her what she really needs.

I guess this is just life with a medically fragile child.
I guess all Mama's feel this way.
I know there are Mom's out there with children in much, MUCH more stressful conditions.
I know I should be thankful that she is growing fine, and generally healthy, and sweet, and blossoming.
I know I should look on the bright side.
I know that God has a magnificent plan for her life.
I know.

But....I still wish it weren't so scary.

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