Happy Holidays!

Just a quick post to say-- Happy Holidays!

And to let ya'll know that we made it to Massachusetts safe and sound. Though Joseph had quite a few highs on the road (no surprise). The worst was when we were just 45 minutes from my sister's house-- he'd spiked to 414.

We gave him a correction, then checked again 30 minutes later.

He was 434.

Okay, not the way we wanted to start the vacation.

When we got to my sister's place, we gave him a correction via syringe, pulled the set, and discovered blood in the cannula. Explains everything, right?

Maybe not.

An hour and a half later, Joseph was 48.

It was a rollercoaster the rest of the day-- poor kid.

But you know what? He was so damned psyched to be here, that it really didn't bother him. He played with his cousins and just could not stop talking about Christmas.

The kid is awesome.

So, we're here. And there's more to tell about the trip itself, but hey, it's Christmas eve, I've had a bit of wine, and there are gifts to be arranged about the tree...

But I didn't want to let Christmas come and go without wishing you all a wonderful holiday.

Road Trip

We head out first thing Wednesday morning.



Eleven hundred miles in our bright red Honda CRV. (The old van is just not up for the trip-- burning oil, worn tires, a flickering ABS light... you get the picture.)

The CRV has issues of her own-- brakes that squeak, a transmission that hesitates before shifting gears. But she's a newer vehicle (only 7 years old), and she has all-wheel drive.

Over 20 hours on the road. With two kids sitting practically on top of each other.

With all of our stuff.

Sounds a bit nuts, doesn't it?

But then there are those games we made up years ago, and always rediscover on a long drive. Like "Who am I thinking of?" (sort of like 20 questions). Or the family favorite, "Who's the bigger star?" Some examples: Brad Pitt or Ben Affleck? Spiderman or Batman? Roald Dahl or JK Rowling? Diamonds or gold? Apples or bananas?

The possibilities are endless; the discussion/defense of a choice, always lively.

There's also that gradually changing landscape-- from gently rolling hills to a flat, snow-covered prairie to the city-scapes of Chicago and later, Cleveland, to the larger, more majestic hills of upstate New York...

There's the night or two in a hotel. The four of us camping together in one room... jumping like fools on beds we don't own.

And then, there is Christmas in Massachusetts. With all six of my siblings. And all 15 of our children together for the first time in two years.

Indeed, I can't wait to begin. Just two more sleeps...

Sledding 101

Ready...



Set...



Go!



Now that's what I'm talkin' about.

Maybe They Should Reconsider Their Stance

Quick question-- what pops into your head when you think of the state of Wisconsin?

Okay, besides the cheeseheads and the beer and the Packers.

I'd wager that most think of snow. And yes, the cold.

Thus, one might reasonably assume that, "snow days" for Wisconsin's school children were a winter staple.

Yes?

Oh, contraire!

The following is the first line in a letter I received just yesterday from our city's school superintendent:

As the winter season approaches and because it's been several years since severe weather caused [our city's] schools to close, I'd like to review these guidelines with you. [Emph. added]

That's right. Several. Years. In Wisconsin-- where we get more snow than many US states put together.

Oh, but there's more... how about when it gets cold?

I mean really cold.

Our policy is to close schools if the National Weather Service issues a wind chill warning of 50 degrees below zero that will continue for the length of the entire school day. If the forecast is for improving conditions during the day, we will not close schools. [Emph. added]

That's right, folks, my son could be standing at the bus stop in near blizzard conditions; wind chills of 45 below. His nose peeking dangerously out of his gator, and still, the school day will go on.

That's just messed up.

The Good, The Bad, and The Not-So-Good

When last I posted we were pondering the question of whether or not we could (or should) get the Guardian RT Continuous Glucose Monitoring System for our son. As I said before, this would be a huge financial hit, requiring some sacrifices. But if it could make things a whole lot better for Joseph, then yes, it would be well worth it.

So, can we swing it?

Maybe.

That's the best we could come up with so far. There's still a lot of financial dust that has to settle post-Christmas before we can make a final determination. In the meantime, I do like the suggestion made by some who commented-- that we should try to become some kind of test case for Medtronics. Not sure if that's even an option, but definitely worth exploring.

Which leads to the second question: Should we even do this right now?

Again, maybe.

I think the pros of getting the Guardian are illustrated quite nicely on Printcrafter's site.

But what about the cons? Well, a few things came to mind as Ryan and I reviewed Medtronic's literature (oh, they were fast-- emailed fact sheets within minutes of our phone chat; brochures via "snail" mail the very next day!).

First, the psychological factor. How will Joseph feel if he has to wear yet another device; insert a second catheter? Will alarms going off at school draw unwanted attention?

Second, this is a brand spanking new technology. Do we want Joseph to be one of the first few children actually using it? Would we rather wait for all of the kinks to be worked out before making this leap?

This morning, armed with these questions, head swimming with the possibilities of this device, I took Joseph in for his three-month endocrinology visit.

First off, the good news. Joseph's A1c was 7.3.

Given all of the insane highs of October and much of November, I was surprised and pleased that he was up only slightly from the previous visit. Joseph's endo reviewed our logs, and thought our recent basal changes were just the ticket. Joseph's late November/December bgs (with a few exceptions on the weekends) have been looking really, really good. She suggested we do an at-home A1c test in six weeks, saying "I think you'll see an even lower A1c."

Next up, a bit out of order here, the not-so-good:

When Joseph took Evan out into the waiting room, the doc and I chatted about the Guardian. And at first it seemed a no-brainer. Joseph's endo thinks the device is phenomenal-- well worth the out-of-pocket cost. That, despite how it's being marketed, it will essentially replace finger sticks. She also thought that Joseph could truly benefit from it, since we need to test so often.

But then we discussed potential problems with the device, and she agreed with my concerns about the psychological issues of wearing the Guardian at school. She then added that the inserted wire could very well jeopardize the integrity of his already limited infusion sites (Joseph is very lean and can really only use his hips and abdomen). This could be a BIG problem for him in the not-too-distant future.

Now, the endo did say that Medtronics is working on a way to use one catheter for both insulin infusion and glucose sensing.

But who knows when that will be available? Clearly, we need to do more research here.

Okay – a bit of a breath here.

Now for the bad.

Joseph's height and weight have pretty much leveled off from three months ago. He's still in the normal range for his age-- between 50th & 75th percentile for height and 25th & 50th for weight. However, the leveling off is not good. I asked if two months of outrageously persistent highs might be responsible.

"Yes," she said, "that could be the case."

"However," she went on, "there could be something else going on here. Something involving another endocrine function."

"Oh."

She then asked me to bring Joseph back within the next month for a first-thing-in-the morning blood draw in order to: test again for celiac; check his thyroid function; measure his "insulin growth factor;" and test for some other things I didn't catch because I simply couldn't hear the words anymore.

I wanted to cry because this is my son. And I can't just provide him with food every day, and know that he'll grow.

And we can't just be glad that we're doing all right. That he's doing fine. No, because now my son is not growing.

I just don't know how this can be.

The Call

After reading Printcrafter's blog over the past week, I found myself -- like many others -- desperately wanting the Guardian RT Continuous Glucose Monitoring System (CGMS) for my son. My previous post illustrates quite clearly why this device would be a godsend.




Well folks, we got the call.




Although Joseph's CDE said she'd put us on a list to try this device, I had begun to think she might have confused the Guardian with its predecessor (a CGMS that did not provide the patient with real-time blood sugars-- only data to be downloaded and analyzed later by the clinic). You see, the Medtronics website states that the the Guardian is in limited release-- seven cities only (and we don't live in one of them). Further, this CGMS is FDA approved only for those 18 and older.

But still, we got the call.

This afternoon, while sitting on the floor doing a jigsaw puzzle with Evan, the phone rang. I didn't recognize the name on caller id-- thus, I almost didn't answer it. But, just before the call would go to voice mail, I picked up.

"Hi, is this Sandra Miller?"

"Yeess?"

"I was given your name by the University clinic... I'm calling from Medtronics."

"What?" Immediately, I got up off the floor.

"I understand that you are interested in the Guardian RT system for your son."

"Yes, I am. Very interested." At that moment, my heart pounded so hard, so fast, I thought it might burst right out of my chest.

"But wait," I said, "this is the Guardian RT, right? I mean, I thought it wasn't available here. That you're only releasing it in seven cities."

"Yes, that's right. But, we have a bit of a unique situation here. You see, because we've worked closely with the University of Wisconsin's pediatric diabetes clinic here, we are offering the Guardian to their patients."

This cannot be happening. Christmas had indeed come early this year.

"Now" I began, a bit tentatively, "Uh.. you do realize that my son is only 10?"

A pause. Probably about two seconds, but it felt much, much longer.

". . . Well you see, Sandy, while it is true that the Guardian is FDA-approved for those 18 and older, we are offering it to kids--- as something called an off-label prescription."

Okay, no one calls me "Sandy," but she could have called me Ralph, and I wouldn't have cared.

"So what do we do? How can we get a trial with this going?"

"I'm afraid there is no trial.

"Huh?"

"The thinking is that, due to the rather steep learning curve of the device, people would be more likely to give up on it before actually experiencing the benefits."

Oh.

And that is when she told me that insurance doesn't yet cover the Guardian. Our cost would be:

$2,390 for the initial hardware purchase

$ 400/month for 10 sensors

And just like that, my heart sank. All this time, I assumed that insurance would cover this.

(Later, I would go back to Printcrafter's site, to his archives, and see where he spells all of this out for us).

With Christmas at hand, car repairs looming, a property tax bill due.... well, this is not going to be easy.

But, damnit, I want this for him so badly.

Last night, Joseph was high. A tiny correction brought him down fast-- maybe a little too fast, as it seemed like he was rebounding up at breakfast.

We test day and night, and still we can't catch it all. We can't truly know what's happening.

Saturday, while I was out Christmas shopping, he plummeted to the 40s, rebounded to the 200s, then crashed to 48 just an hour after dinner.

This was after a week of no lows; no major highs.

And then, of course, there was that 21 on Sunday.

I don't know. I HATE that money is a concern here. If I were working, this would be a no-brainer...

Now, the good news is that once an insurance code is assigned to the Guardian, insurance coverage is likely to follow. Unfortunately, a product needs to have been launched six months prior to when codes are assigned (which happens in January).

Bottom line-- an insurance code will not be assigned any earlier than January 2007.

So, Ryan and I need to sit down and do some math. And we also need to talk with Joseph about this. And see just how and when we can get this for him.

I'll keep you posted.

Shooting Down

Late yesterday afternoon, just before sunset, Joseph and I went sledding alone together for the first time in years. We drove to the largest sled hill in our neighborhood-- a massive, two-tiered bowl behind the local middle school. I'd never been there before-- when he's gone to this site in the past, Ryan was usually the one to accompany him.

Yeah, I'm a bit of a chicken when it comes to sledding.

So it was no surprise that, as I parked our car on a side street next to the school and got my first look at these hills from a distance, I was scared.

Aside from the much tamer hills at a nearby park, I really hadn't gone down anything like these since I was a kid.

It was 4:00 as we hiked across the snowy field that lead to the base of the steepest hill in the bowl. And Joseph grew more excited with each step we took.

"Mom, when I came with dad last year we usually went down the longer hill. This one kind of freaks me out, but today I think I want to try it."

Deep breath. "Okay, let's give it a go"

"Oh, and Mom?"

"Yeah?"

"Sometimes people kind of crash into each other here. You kinda can't avoid it."

"Oh."

So we climbed. Up, and up.

And up.

Until we reached the top, turned and looked down. At this point, we both paused a moment.

"Are you sure you don't want to go over to that longer hill?" I asked, only slightly hopeful, thinking:

What if he crashes into someone? Man this is high! And steep...

But, at the same time:

Boy, look at these people... you just fly down this thing. This could be really fun...

Without giving me an answer, my son leapt onto his bright red toboggan and shot straight down, hit a bump midway, caught some air, then continued down and across the field we had just traversed.

I was next.

Gently, carefully, I lowered myself onto the round "snow tube" we'd borrowed from a friend. It felt comfy, like something you'd sit upon while floating down a lazy river.

"Come on Mom!" Joseph shouted, while slowly making his way back up the hill.

"Just go! It's all clear."

Not wanting to disappoint my son (and really, a bit excited by the prospect of the virtual free fall I was about to experience), I pushed off.

Straight down, I went (while my stomach flew up). Then over that same bump.

And my God, for a split second I was flying.

And screaming.

And gulping mouthfuls of snow as I reconnected with the hill, spun around, and rode down the remainder of the slope backwards.

When I finally came to a halt, many, many yards from the base of the hill, I couldn't stop laughing.

So, for the next 45 minutes, Joseph and I took turns with the toboggan and tube. And rode down together on the toboggan countless times -- me sitting in back, holding tight, with my son leaning against my chest. And every time we hit bottom, we'd look at each other-- snow covering our jackets, our hats, our faces-- and just laugh.

We hadn't laughed together that much in a long time.

As we climbed the hill after our umpteenth ride down, a boy hiking next to us called over to Joseph.

"Hey, I know you. You go to Lincoln."

"Yup, that's right." Joseph responded. Then the other kid climbed on up ahead of us.

"Hey," I said, "Are you embarrassed to be here with your mom?"

"No. Not at all. Mom, it's more fun. Let's go!"

Continuing our trek up hill, I suddenly felt light. Light as air.

Again, we shot down. But this time, after we came to a halt, Joseph didn't stand up.

"Mom, I'm feeling a little low."

"When did you start to feel it?"

"Just before we got on the sled, but I figured it'd be better to wait til we got to the bottom."

He was right. The meter was in the car. Parked what seemed like miles away.

"Okay, I'm going to run and get the meter. "

I ran, through several inches of snow that felt like quicksand.

All the time, thinking:

It's getting dark. What if he's really dropping fast. And he's alone. Please don't let this be bad...

And as I got to the car, I realized that I had the glucose tabs in my pocket.

Oh my God.

I got the emergency bag, turned and saw Joseph sitting across the field-- waving, to let me know he was okay.

When I made it back to him, I told him to stick a finger in the snow, then wipe it on my denim snow pants. As he removed his glove, his hand shook even before his finger hit the snow.

27

"Okay, maybe the water from the snow diluted your blood. Let's just do a dry finger from your other hand."

It had to be a mistake.

21

"Mom, I'm scared." He looked fine, except for the shaking. And the fear.

"Honey, I'm gonna have you eat this tube of cake icing. Then we're gonna have some glucose tabs."

He sucked down the icing fast, then gobbled down four glucose tabs.

After several minutes, I just wanted to get him home. Out of the cold. The crowd on the hill had thinned considerably, as a thin sliver of moon shone bright in the clear sky overhead.

It was quiet where we sat. No one within shouting distance.

I had to get him home.

"Do you think you can make it to the car? I'll help you, okay?"

"Sure, mom," he said, suddenly looking so young, so helpless, but at the same time, so damn brave.

I carried the sleds, and held fast to Joseph as we trudged through the snow.

The longest walk I've ever taken.

Once home, 20 minutes after 21, Joseph's sugar had risen to 127-- normal range. Out of danger.

But I really couldn't say when my heart rate did the same.