A Game of War

On Saturday, we went to an all-day chess tournament-- Joseph's first. He was joined by seven classmates and his teacher, Mr S.

Joseph won his first two matches easily. Then was paired with the #1 ranked player. He lost, but stayed composed-- looking over at me from across the large hall and shrugging.

Still smiling.

It was during the next match that I knew something was wrong. This one started an hour and a half after the lunch break.

He sat across from his opponent and fidgeted. There was none of the easy conversation he had made with his three previous opponents.

No, he just looked uncomfortable.

And I knew right then that the match was done before he made his first move.

Don't get me wrong-- I don't care if he wins every game.

Losing can be good for a kid.

But damnit, I just don't want him to lose because of diabetes.

You see, chess is a game of concentration. And when Joseph experiences a high blood sugar, his ability to concentrate is one of the things most affected.

When the match was over, we checked his sugar. He was 276.

One hour, a bottle of water, several trips to the bathroom and a small correction later, Joseph sat down to face his fifth and final opponent.

At once I could see that he was calm and focused. He smiled at the other kid. And from across the room I could read Joseph's lips:

"This is my first tournament... is it yours?"

This question was how he had started his first three matches, making small talk.

And sadly, this kind of exchange was exactly the sort discouraged at the outset by both tournament officials and most of the chess coaches in attendance.

(Happily, Joseph's chess "coach" was Mr. S -- a fourth grade teacher who had put together a chess club because our school had none. A man who sheepishly admits that he's not even good at chess.)

Children were instructed at the tournament's open to avoid talking until after the match because "your opponent is your enemy and chess is a game of war."

At one point I had asked Joseph why he always talked with his opponents.

"Mom, I just don't like it if we sit down all hating each other. Then, when one of us loses, it just feels bad."

During the course of the day, Joseph would be approached by all of his previous opponents-- they would ask him how he was doing in the tournament. They all knew him by name-- each one greeting him with a broad smile.

Joseph's final match took less than five minutes.

And when the two boys stood up and shook hands, I really couldn't say who won. They both looked serious and a little sad. Then Joseph wove his way through the many tables, the many matches still in progress, until finally he came to where I stood.

Looking up at me, he smiled and shook his head, saying:

"I can't believe I won. And he took my queen, too. He thought he had me. I thought he had me. But I didn't give up. Kind of like when Sasha Cohen fell, you know? She just kept goin'."

I don't know which was cooler-- the fact that my son wouldn't give up despite losing what he believed to be his most important piece, or that my 10-year-old boy could acknowledge having learned something from a female Olympic figure skater.

And why did he look so serious at the end of the match?

"I just didn't want to make the kid feel bad. He really thought he had me, and when I checkmated him, he looked like he was gonna cry."

Oh.

So no trophy. No victory dance.

And quite frankly, I couldn't be more proud.

The Color of Progress

About two months, ago I received a call from an Animas Pump Support Rep. He was wondering if we could return our back-up insulin pump.

Typically, "loaners" are provided if the user will be traveling out of the country.

Or, if someone's mother is at the end of her rope because her son is on his third pump in seven months.

"Could we just hang on to it for one more month?" I asked him, "This may sound superstitious, but if we could get past that four-month mark... the time when we always seem to have trouble, I'd feel a whole lot better."

Well, this rep-- understanding the concept of good customer service-- granted my request. In fact, he said we could hang on to the loaner for two more months, if that would make us feel more confident.

Good thing, too.

Joseph's numbers were pretty funky all day yesterday. He had a persistent low at school-- the kind that adamantly resists treatment. It took almost 40 minutes and a whole lot of glucose tabs to bring him up from 60 to 82.

He was high the rest of the afternoon, despite corrections.

Last night, Joseph was due for an infusion set change-- I had hoped this might help alleviate some of these wild fluctuations...

But all it would yield was more trouble.

You see, when I came to the "prime tubing" step of this set change, each time I held down the "prime" button, the pump stalled.

On the third attempt the pump froze completely, displaying an error code and a message that read "Call For Service."

This might be a good time to mention the phone message I'd received earlier in the day from my friendly Pump Support Rep. It seems our two-month extension was up and it was time to send back that loaner pump.

Uh huh.

So last night, while holding the ceased-up pump in my hands, in a state of near shock at the realization that this was our THIRD pump malfunction-- I called for Service.

After I recited the error code on the pump's display, a very calm Service Rep explained that "because the pump is always doing self-checks, it occasionally needs to be re-booted. Just take out the battery, put it back in, and do a full rewind."

"But what about the stalled primes? And we've had some funky blood sugars today. Should I be concerned that the pump might not be working properly?"

I asked these questions, hoping for some serious reassurances.

And in a very serious tone, the Service Rep responded.

"Don't put the pump back on him. Sandra, we'd rather be safe here. We'll send out a new pump right away."

Pump Number Four is en route.

We completed the set change using the silver loaner pump (all three of Joseph's pumps have been black, so this was quite the novelty for him).

"Mom, this pump looks so new," he said as he turned it over in his hands, "And I like the silver... it looks just like a cell phone."

At about 10:30 pm, Joseph's blood sugar was 143, and he was finally off to bed.

By 12:30 he was 241.

Two hours and one correction later, he was 289.

Two-and-a-half hours and a second more aggressive correction later, Joseph's blood sugar was 324.

No. Way.

Ryan, who'd been doing these overnight checks, wisely gave Joseph a MUCH more aggressive correction via syringe.

Within two hours Joseph's sugar dropped to 187. Less than 30 minutes after that (at breakfast) he was 138.

The very first thing I did this morning was change his infusion set.

As he pulled out the old set, we all noticed that the cannula was bent completely to one side. In fact, the cannula looked as if it had never even entered his skin.

Another horrifying realization... from 10pm until 5am, my son had likely received no insulin.

Thus it was no surprise that just before leaving for the bus stop he said, "mom, I'm feelin' a little nauseous."

A left hook, right to the gut.

"Honey, do you think you could pee real quick before you go... just so we can check for ketones?"

He's had ketones only once before, and they were trace; he'd never even had them at diagnosis.

But he had them today.

Almost immediately after dipping that ketone stick, it turned a deep shade of pink.

Small ketones.

"Let's have you drink a large glass of water before you go, and I'm gonna kick up your basal rate for a couple of hours." (We'd been conservative with his breakfast bolus because he was coming down so fast... )

After he left, I called the school nurse to give her the heads up on what was going on. To make sure that at the slightest sign of trouble, they would check for ketones... and call me.

So far so good. His sugars were in the low 130s at snack and right before lunch.

And he sounds good.

But man...

In the meantime, I keep thinking back to something Joseph said this morning, right after breakfast:

"Mom, Dad, I want to upgrade soon to the 1250, and this time I want a silver pump. "

He paused a moment, looking thoughtfully at the loaner pump in his hands.

"Because, you know... " he said, looking up at us with an absolutely earnest expression.

"Silver is the color of progress."

A Rare and Wonderful Thing

I woke up this morning, came downstairs, and had breakfast with Joseph. We talked about how amazing it looked outside-- but mostly about how much fun would be had after school.

Just playing in the stuff.




It never once occurred to me that school would be cancelled.

After all, in the five years we've lived here, there's never been a "Snow Day."

Thus after breakfast, Joseph and I simply stood staring out the window until it was time for him to leave for the bus stop.

I watched as my boy bundled up; saw him strain to get both straps of his backpack up over his now bulky shoulders.

Then I kissed him goodbye, and watched him trudge through the several inches of snow that now covered the front steps, stopping to say goodbye to Ryan-- who was engaged in the futile pursuit of clearing our driveway and sidewalk.

You see, while not anywhere near the storm that struck the northeast this past weekend, this snowfall would soon develop into something pretty darn nasty.

(I would later hear the words "blizzard conditions" coming from local weathermen on every station.)

Thus it was, before I even sat back down to review Joseph's overnight numbers, that the front door flew open.

My son bounded in, arms raised, fists pumping, cheeks bright red, hat and coat covered in snow, and all the time shouting:

"It's a Snow Day! It's a Snow Day!"

"What?! What?!"

"Mom, Laura told me. She saw it on the news this morning. All the schools in the city are closed!"

Joseph leapt up and down while shouting these words, making no attempt to contain the sheer joy of having been given this news.

"This. Mom. Is UNBELIEVABLE!"

Given that the boy has never in his life had an official Snow Day, the news was indeed, unbelievable.

So what have we been doing? Well, Joseph is (no surprise) outside playing in the snow with a friend, after a morning of Trouble...




Some major fort construction...




Followed by the adventures of "Pilot Joe" and his trusty sidekick, "Super-Nurse Sara" (yes, that's Evan-- responsible for taking care of all sick animals, while fighting off various bad guys).




Sorry, no photos of "Super Anna." (Uh yes. That would be me.)

And now, while I get ready to bundle up Evan so that we can further enjoy this fine Snow Day, I can't help but shake my head and laugh as I remember the weather here just two days ago-- Valentines Day.

A day of sunny skies and a high of 50 degrees.

A day of kids without coats...







And here I thought spring was just around the corner...




Umm... maybe not.

Fail-Safe

(fāl'sāf')

An action taken to avoid disaster.

10:15 AM

Joseph calls with his post-breakfast blood sugar.

"Hi, mom. I'm 228 . . . you know, just a spike. Oh, and we're having the same snack as yesterday-- Cheez-Its."

"Okay, bud. Let's get that bolus on board and not worry about a correction."

".45-- should I go?"

"Go."

"Love you."

"Love you too, darlin'."


12:00 PM

Joseph calls yet again, this time with his pre-lunch blood sugar.

"Mom, " he says between telltale chews.

My heart sinks.

"I'm 67. I'm really, really sorry," he continues, in a voice muffled by the familiar crunching of several large glucose tablets.

"Honey, there's absolutely nothing to be sorry about. You're low. This is gonna happen sometimes. Really bud, it's okay."

"But, mom, you don't understand," then, he says miserably, "I didn't have a snack."

"What?"

Immediately I'm calculating in my head. No food since 7:00 this morning.

Five hours.

And more insulin.

Almost half a unit is a hell of a lot for this kid to take in with no food. Thank God he was high going into snack.

It should be all right.

Deep breath. Then, with no trace of the panic that has begun to take hold.

"It's okay. But honey, what happened to your snack?"

"I forgot all about it."

"Oh, honey."

"And... well... Mr. S. never gave it out."

"Oh."

Hmmm.

Now, along with fear and worry, anger jumps into the fray.

"Honey, I want you to call me back in 15 minutes with your sugar," I say, in as calm a voice as I could muster. "Just stay in the nurse's office, okay?"

I hang up, and immediately punch in the number for the school.

"May I speak with Mr. S, please?"

Dead space of hold.

"Mr. S, here."

"Hi, this is Sandra Miller, Joseph's mom. I'm calling because I just spoke with Joseph. He's having a low blood sugar right now. Apparently, he bolused for the snack, but that snack was never given out."

"Oh, well. You know, we didn't really have enough crackers for the whole class so we didn't hand them out."

A pause, and then in a bit of an awkward tone:

"And . . .well . . . Joe does have peanut butter crackers for those times when he needs them."

"Yes, that's true," I respond, struggling to hold my temper. "But he was told there'd be a school snack. He bolused specifically for those Cheez-Its. Then, when they were never given out, he just forgot. We really need to make sure that he eats something whenever he's given himself insulin for food. I guess I'm just looking for a fail-safe here. I really need to know that someone is watching out for him when he's giving himself his insulin. Making sure that if he forgets, he'll be reminded to eat something or bolus if need be."

I'm so damned combustible right now that if there is even a hint of disagreement, I'm just gonna blow.

"Sandra, I'm so sorry. I guess I need to be more involved with this."

"Yeah, that would be great. Really great."

12:15 PM

I get off the phone and just want to cry. But before I have the chance, the phone rings again.

It's Joseph.

"Mom, I'm 63."

"Okay bud, let's have ya eat three more glucose tabs, and check again. You came down pretty quick from that snack-time sugar, and that extra insulin is just pushing you down further. But it's okay."

12:30 PM

"Hi Mom," Joseph says, sounding much more like himself. "I'm 72."

The right direction, just not quite as high as I was hoping.

"Can you go to lunch right now?"

And so he did.

Rebounding hours later into the 300s.

I Hate This Damn Disease.

More Tag

Caro tagged me, sooooo....

Four jobs I’ve had in my life:

1. Telemarketer-- (yup, in my youth I was one of those annoying people-- though I only called folks at work, where you know, most didn't mind the interruption)
2. Vice President (of a marketing company)
3. Part-time Editor (of a drama anthology while in college/a labor-union publication while pregnant with Joseph)
4. Childbirth Instructor/Birth Assistant (Doula) -- Next to being a mom, best job I ever had.
   

Four movies I can watch over and over (defined as movies I cannot channel surf past):

1. The Princess Bride
2. Brazil (1985 Terry Gilliam film)
   
3. Strictly Ballroom
4. Napoleon Dynamite
   

Four places I have lived:

1. Massachusetts (born and raised)
   
2. Chicago, IL
   
3. Wisconsin

.... only three, I'm afraid.

Four TV shows I love to watch:

1. Arrested Development-- Best. Show. On. Television. (Boo... and it's gonna be cancelled)
2. Alias (Cancelled. Do you see a pattern here?)
   
3. Survivor (I blame my mother-in-law, who got me hooked last year-- and given the pattern above, may live to regret it)
4. David Letterman (when I have the energy to stay up and watch) I love this man.
   

Now, I'm sure there'd be more, but since we are a family without cable, I'm way out of the TV loop.

Four places I have been on vacation:

1. Portugal
2. Athens/Crete
3. Jakarta, Indonesia
   
4. London

... all in the "TBC "(Time Before Children)

Four of my favorite foods:

1. Dark Chocolate. The darker the better.
2. Lox with Cream Cheese, Tomato, Red Onion & Capers on a Potato Bagel
3. Indian Food (i.e., Sag Paneer, Chicken Tikka Masala, Samosas with Chutney... all of it!)
   
4. A Fluffernutter (pronounced fluffa-nutta) . . . well, only if the kids are having one ;-)
   

Four websites I visit daily:

1. Bloglines (where I read updates from all of the blogs linked here)
2. Salon.com
3. The rest kind of vary from day to day as there's not much time to visit elsewhere...
   

Four places I would rather be right now:

1. Some place warm
2. . . . really, really warm
3. Did I mention the warmth?
4. And yeah, sipping a warming libation would be nice too.
   

OK, I tag:

Allison
Alicia
Tekakwitha
Shannon
and Johnboy

Until a Cure

That's the name of Jenny and Tommy's new blog.

They are the mother and son who have just begun blogging about their experience with the Guardian RT CGMS.

Let's all go and give them a warm welcome to the online community!

A Child is Getting the Guardian

Yep. Up here, in Wisconsin.

A young boy who was diagnosed about ten months ago is getting the Guardian RT CGMS.

This boy goes to our clinic.

He's 10-years old.

Just like Joseph.

And I cannot help but feel guilty that we are not making this leap, too. That we've let fears -- surrounding site atrophy, the newness of the technology, and the impact of the necessary financial commitment on our family -- place us in a kind of holding pattern.

I've discussed these issues before.

But still, this boy -- so very similar to my son -- will be hooked up.

I'm tremendously happy for this very excited, very nervous family. Because I know exactly what this CGMS will mean to them.

And really, to all of us, as this boy's wonderfully generous mother will soon be blogging about their experience with the Guardian-- blazing a trail that (with a little luck) the rest of us will soon follow.

Until then, I need to keep a very persistent, green-eyed monster at bay.