Tuesday, February 19, 2008

Lucky


Over the past 10 months, our close friends - family now - have banned together to be sure that even with diabetes, life for TJ can be the same as it was pre-diagnoses. The many adults in our lives: S and K, S and M, A and E, not to mention Mimi, Papa, and Grandma, have learned to work the meter, count carbs, and recognize a low so that Thomas can play wherever he wants, whenever he would like.

This teamwork is no small feat - my friends work hard, both for TJ's benefit and mine. Thomas comes home from playdates with records of his BG readings from the day. My friends are even more vigilant than I am in testing every 30-45 minutes while his is playing hard. "S" overcame her life-long fear of needles to learn to give an injection. "A" revealed a "diabetes dream" she had a few weeks ago. As we learn more, and as Thomas learns more, our friends learn along with us. Meter talk, BG discussions, pump inquiries...we are all going through it together.

Today, mid-playdate, Thomas ran over to the table to test, and his wonderful pal TE hurried up alongside him to help. Two boys, heads buried together, working the meter. TE unwrapped the test strip while Thomas used the lancet. TE held the meter up to the drop of blood, while they both chattered to a new friend, C, about what they were doing and why. An unfamiliar bystander would have been hard pressed to pick just one diabetic child out of this scene. TE has tested his own BG a few times, and even weighed in when C asked if it hurt.

I don't believe there is enough room in the blogosphere to count the ways in which our family is blessed. Not for one minute have I felt alone in this journey. I am so lucky to have friends that listen, and have learned to care for TJ. Tom and I have never been stuck in a day care dilemma, and we are offered frequent breaks from the constant vigilance of diabetes care.

Watching TJ test - with a friend - today, it struck me that he is not alone, either. No one makes him feel different. Instead, his friends help him out and their parents remark at how brave he is. He travels with the crowd, regardless of his expanded care plan. He does not have to explain testing, carb counting, injections, or the tiring weight of his lows to his best pals - they are all in it together.

I know as TJ grows, and his circle widens, he will have to answer questions about his diabetes. I know there will be days (like today) when I hosted the playdate even though the other child had invited TJ over because I simply couldn't deal with trying to explain everything to someone else. There will be sleepovers he will miss, and birthday cake he will not eat. I know there will be coaches, teachers, and bosses in TJ's future that might not care to learn about diabetes as much as our current circle of friends.

But, for now, we are so very lucky.

Thursday, February 7, 2008

Math


In my memories of school, no class stands out more than Algebra. Which is interesting, since I hated math. Moreover, Algebra 1 and Algebra 2 were most certainly top contenders for my two lowest grades ever. (This may be genetic, I recall Dan struggling through Algebra, too) Despite my longstanding inability to get along with math, though, the class seems somehow branded in my memory. The stress of not understanding, and not caring to understand, any of the concepts presented is one I can conjure almost instantly.

I know that what got me to school was band (no surprise there), but I don't recall more than 10 cumulative minutes of rehearsal. I don't remember our routines, the songs we played, what the band room looked like, or even many of the people who would have been there. I know I liked band - loved it even - but that is about as far as my memory stretches.

I do remember sitting in Algebra class, though, with Mr. Kazowka. I remember sweating as he checked homework since mine was incomplete, for sure. I remember watching the clock until class ended. I remember sitting on my bed trying to complete 15 late homework assignments (is it possible to become Type A in your 20's?? I never would skip my homework now!!).

When I went to UMASS, I marveled at my luck for passing out of the first level of required math. Even luckier, I managed to find a logic class (read - word problems with NO numbers involved) that counted for the level two requirement.

What does all this matter? Nothing, until now. Math seems to be one of the cornerstones of diabetes management. There are two known equations - rules, if you will - of determining insulin doses, either to correct a high blood glucose, to cover food, or a combination of both. Until now, we have been oblivious of said rules, because we follow a sliding scale created for us at Joslin. We test TJ, we check the chart, we dose the insulin. Simple.

But now, lured by even the slightest possibility of tighter control, we are moving forward in getting TJ pumping. Everyone has warned us that the pump is trickier, but I didn't think for a minute it was beyond my comprehension.

Until the nutrition meeting. Knowing that we were at Joslin for a pump education meeting, the cute, perky nutritionist we met with launches quickly into carb counting lesson with instantly starts my head spinning. There are equations. There are parenthesis, subtraction, and division. I'm sweating. I know the material in the parenthesis needs to be completed first. I can't really divide, but I can use a calculator with the best of them. We do a few equations and I'm back on track, feeling good. I can do it.

Then, she launches into correcting for a BG is that below target, while also giving food. The concept I get - because he is below target, we need to subtract a little insulin. But, ultimately its the algebra that gets the last word. There are negative numbers, and there is division. In a full on panic, I decide to watch, pretending to get it. I'm nodding, I'm listening. I'm back in 10th grade math - totally LOST. HOW did she get a negative answer. WHY isn't there a negative number showing up on the calculator. I sneak a look at Tom. I can tell he gets it. I, on the other hand, am ready to cry.

So...not wanting to reveal my stupidity, but wanting to pass the upcoming pump test, I finally get up the nerve to raise my proverbial hand:

"Um, OK - it seems to make sense, but you said negative..."

She cuts me off - "yeah, negative - it's less."

I nod, but I'm still lost..."but, that number on the calculator - it looks positive...there is no negative sign."

"Well..." she starts "I just didn't put in the negative sign, but you know its negative."

In my mind I am screaming...HOW do you know???? And then, from somewhere in the depths of my creative, not at all mathematical mind, comes the answer. A negative divided by a positive is a negative.

Thank you, Mr. Kazowka!

Monday, February 4, 2008

Exhaling

At TJ's last endo appointment we took a (small) beating from Dr. W for failing to:
a) control TJ's numbers tightly enough and
b) call in to Joslin when things weren't working.

Both Tom and I had began to frustratedly resign ourselves to crappy numbers, but, as so clearly illustrated by his A1C of 10 (YUP - 10!) we have to buck up and deal a little better.

And, we have. Already in the first week after the appointment we saw some positive changes. Then, blessed by God Herself we had a snowday last Monday. I finally had the time I needed to gather all the data and give Deb a call. Now, for one whole week we have been seeing awesome numbers!!! We are making nightly corrections, so the Levimir clearly needs an adjustment, but we both feel like if a correction shot in the middle of the night is all it takes, well then, bring it on. (Easy for me to say since Tom gets up with him every night!).

Regardless...I'm so glad to see good numbers for a change, and I can't even begin to describe what a different kid TJ is when he actually feels good.