Tuesday, November 29, 2005

Change Is Coming

Reading Violet's post this morning, I found myself nodding with the realization that what she describes there is exactly what we've been experiencing here over the last couple of months.

The highs. The ever-present, ever-creeping highs.

At first I thought it was the colder temperatures-- the decrease in physical activity. Possibly the flu shot a few weeks ago. A growth spurt? Perhaps.

Maybe all of these things.

Then again, maybe none of them.

Like Violet, Joseph has been gradually needing more insulin. His two hour post-breakfast sugars have been spiking into the two and three hundreds. Not terribly unusual. Except that he's not coming down to normal range by lunchtime. We're still working on this one.

His overnight numbers have been creeping up as well -- to the point that, when once he took as little as .025, he now takes as high as .325.

Yeah, we've seen this kind of thing before-- more than once. But each time, he seemed to go through some sort of acute stage-- when he needed a lot of insulin (during a growth spurt), only to slide back to needing just a bit more insulin than he had before the episode began.

Not this time.

I've been told that control will be a lot easier when Joseph leaves the honeymoon. That because he'll no longer receive that "mystery dose" from his pancreas, his blood sugars will become more predictable.

But I've also read that control will be more difficult because there will no longer be the safety net of that back-up dose. That whatever my son receives will come from the outside.

We'll be on our own.

Lately, I haven't let myself seriously consider this possibility-- rarely attributing what has been going on to the honeymoon's end. Sure, I've mentioned to Ryan that "this might be 'it.'" But I've thought that before, and been wrong. Now, this morning, the possibility of this being 'it' seems to make all the sense in the world.

And yet, just as before, I still have a hard time with this one. For, despite Joseph having had this disease for over a year now, I still take comfort in the thought that he has some beta cell function.

Well, now it may be time to move on. To fully accept the fact of this disease in all it's full-blown glory.

Yeah, we've got a lot of work to do-- he's really gonna hate the basal rate testing that I think is inevitable if we're ever going to get back some semblance of control. His next endo visit is in just a few weeks. The way things have been going over the past couple of months, I fully expect a rise in the A1c.

Ah well.

Man, all of a sudden I just feel sad.

To be expected, I suppose.

Monday, November 28, 2005

Something Strange

This morning I got Joseph up for breakfast-- it was just the two of us (Ryan is out of town for the week).

He checked his sugar (81), then sat down to his usual "Cheerio mix" -- half Cheerios, half Honey Nut Cheerios. Before tucking in, Joseph began studying the back of one of the cereal boxes in earnest.

"Mom, look at this" he said in a slightly disgusted tone. "These are just kids on this box, and they're offering ring tones for their cell phones. That's ridiculous."

I agreed, then turned to log his bg.

"Mom, something's wrong."

It was just that quick.

"What do you mean? Do you feel okay?" His face was suddenly very pale.

And he looked frightened.

"Mom, can I just take a glucose tablet?" he asked, nervously shifting in his chair. "I think I'm low."

"Absolutely. "

Joseph fumbled with the glucose tab container for about two seconds before he handed it to me with a pleading expression.

He popped a tab, then sat down in his chair.

"Can we check my sugar? I don't know what's goin' on."

"Sure we can," I said, trying to hide my own growing panic.

He was 93.

"Mom, I'm scared. I'm really, really scared. I've never felt like this before. I don't know what to do! Can you just sit next to me?" He shifted in his chair repeatedly as he spoke.

I took the seat next to his, then held him in my arms. He was shaking. It took everything I had not to shake too.

"I don't want to die."

"Oh honey, you're not gonna die. You're gonna be okay. You're gonna be just fine. Just fine."

I said these things quietly, over and over as I held his head to my chest, stroking his hair, rubbing his back. Until finally, he believed me. Until he was himself again.

At first I thought my son had just experienced his first real panic attack, but when I asked Joseph to describe what he'd been feeling, he said:

"Mom, it was like I felt really heavy all of a sudden... like all of my weight just dropped down to my legs. It wasn't like that time I was 32. That time I felt really light. This was different."

"Did you feel like you were going to pass out?"

"I never felt like this before, and I never passed out before. So I thought that this might be what passing out would feel like."

So I'm not really sure what happened.

Except that both my son and I greeted the day with one hell of a scare.

Thursday, November 24, 2005

Happy Thanksgiving!

I'm thankful for a whole lot today-- for my wonderful husband, my amazing kids, and the rest of our extended family.

I'm thankful for all of our friends (including the incredibly supportive folks I've met through this blog).

The food. Oh yes, the delicious food.

And, right now. Right this moment--

I'm thankful that, three hours after turkey, potatoes -- both sweet and mashed -- butternut squash and turnip, stuffing and green beans -- yes, after all of that.

Joseph's blood sugar is 125.

Yes. I am indeed thankful.

Monday, November 21, 2005

In Case Anyone Forgot the Name....

I walked in our living room, and this is what she'd done.

Hmmm... maybe she really is ready for preschool.

Monday, November 14, 2005

Because It's Still November

And because today is World Diabetes Day, I wanted to share our experience with some of the universal challenges faced by children with diabetes, as well as those who support them-- along with information about a couple of useful products.

First off, I'm gonna do some recyling here. Yes, this is a bit lazy of me, but here are links to some older posts that dealt with a few of the issues we've come across since Joseph's diagnosis:

Parents of Prospective Pumpers provides a detailed description of how we made our journey from shots to the insulin pump.

He Found Out describes the moment when Joseph learned of the potential complications of diabetes.

The Seizure Story tells of how the parents of another child with diabetes handled one of our worst fears surrounding this disease.

Diabetes Camp and Home from Camp... Something Unexpected recount my son's first experience with diabetes camp this past summer.

High High High -- well, that one's kind of self-explanatory.

And finally, a personal favorite (in hindsight only, that is) -- Bloody Peach Vanilla Cake! Oh yes, we've all experienced those unanticipated treats and the havoc they wreak...

In addition, here are two BIG product plugs:

When I first read of the Multiclix Lancet Device on a Canadian blogger's site, I tried (unsuccessfully) to order the thing through ebay-- as it was not yet available in the states. Months later, I read Kathleen's post and snapped one up. I can still remember Joseph's words as he pricked his finger with this little device for the very first time:

"Holy Cripe! Mom! I didn't feel a thing! I love this lancet!"

It was like he'd just discovered some insanely-coveted Christmas present.

And guess what? A month later, and he still loves this thing. In addition to the virtually painless poke, it uses a drum that holds six (reusable) lancets.

That's right-- no more sharp lancets to cap off!

And if all that's not cool enough, Walgreens has this lancet device (sold separate from the Accu-Chek meter) for $10 off until November 26th. Grand total-- $9.99.

Now I need to stop my rave a moment here to say, I HATE Walgreens! Please. Someone. Remind me to post sometime about exactly why I HATE Walgreens.

That said, you must get thee to a Walgreens before the 26th-- while supplies last!

Next up, Smart Charts.

These are simply awesome..

If you're looking for a tool to track blood sugars, carbs, insulin dosing and exercise, and don't own some kind of handheld computer, then this is definitely the way to go. I discovered these early on, when I began graphing Joseph's sugars manually-- trying to come up with some kind of charting system. I found that just looking at the numbers never allowed us to effectively spot trends.

I needed a graph, but one we could take with us on the go.

Enter the Smart Charts-- aka "My Other Checkbook" (because they're about the size of a checkbook). Those of you who own the book, Pumping Insulin, are probably already hep to these. You can order Smart Charts here at John Walsh's wonderful site -- Diabetes Net.

Well, that's all I've got. Hope some of this helps. And hey, sorry for the abrupt ending, but I need to start dinner, and since Blogger has a "scheduled outage" tonight, I didn't want my World Diabetes Day post to miss the boat....

Wednesday, November 09, 2005

Trying To Keep The Faith

Just last night, as I kissed my son goodnight and turned to walk out of his room, he stopped me.

"Mom, you know there's probably gonna be a cure before I'm Hartley's age, right? I mean, before I'm in middle school, don'tcha think?"

"Well, I know they're working really hard to make that happen, honey."

"But definitely before high school," Joseph said quietly, as he pulled his comforter up to his chin.

And as he closed his eyes, he said -- almost to himself, really -- "definitely by then."

"You bet, bud," I responded, the words catching in my throat.

Closing his door, I stood in the empty hallway, and let myself imagine for just a moment:
my son in high school without diabetes.

Without the pump, the finger pricks. The highs. And God, the lows.

No more fear of potential complications.

It really is almost unthinkable.


I wondered if suddenly I had become one of those individuals I'd met early on-- diabetics and parents of diabetics who seemed to have given up hope that a cure would come in their lifetime.

I remember telling these people, enthusiastically, of Denise Faustman, and how she'd cured Type 1 in mice. And too often, the response would be a half smile, a "well, I was told 10 years ago that a cure was just around the corner." Looks that said "just wait, you'll see, you're just so new at this."

These exchanges always left me confused, frustrated, and, well, angry.

But there I was last night, feeling my own faith slipping -- faith that a cure might be found in time for my son. I can barely type the words without choking back tears.

That was last night, though-- when my son's life seemed as if it would be an unending string of blood sugar highs and lows.... with complications always looming.

When diabetes appeared to be an unbeatable foe-- a multi-billion dollar industry that pharmaceutical companies will never willingly surrender.

Yeah, last night really sucked.

But today, I woke up and thought again of Faustman, and of the countless others who walk, climb, and ride to raise money for a cure.

And I am hopeful, yet again.

Today, I will read many posts by diabetes bloggers -- posts that will no doubt make me laugh, cry, and, as always, sit in awe of the boundless strength of these people. And I will be reminded that my son will never be alone.

That, until a cure is found, he too will persevere.

Tuesday, November 08, 2005

Raising Awareness

November is Diabetes Awareness Month.

Before Joseph was diagnosed just over one year ago, my own awareness of diabetes was slight at best.

And about type 1, I knew almost nothing.

Sure I was aware that some folks with diabetes needed insulin. But I never understood why. Nor did I have any idea of the work that went into managing the disease day-to-day -- hell, hour-to-hour.

Well, now I know.

Over the last year, I've also come to realize the value of support in all of this.

Gina over at Diabetes Talkfest has called on all diabetes bloggers to post tomorrow -- to unite in a show of support for each other and all of their readers.

Soooo, bloggers with diabetes -- or those who are in any way touched by this disease -- please post something tomorrow.

Write about how diabetes has affected your life.

Write about your favorite meter, pump, lancet, software progam...

Write about the research you're following.

Write whatever comes to mind.

But write.

And those who don't have a blog, well, then comment. Visit the d-bloggers listed to the right (and any I may have missed!).

And leave a comment.

Even if it's just to say, "Hi, I'm here. And I'm reading."

Let's really show the power of these blogs to unite individuals who might otherwise feel as if they're alone in this.

Let's reach out.

Sunday, November 06, 2005

Catching Frogs

Just one month ago, we had a frog.

His name. Ted.

Ted was a native frog, bullfrog, to be exact. That's right, we didn't purchase Ted in any pet store. He was caught. In fact, he was the first frog Joseph had ever caught.

This was big. For him and for me.

You see, I was a champion frog catcher back in the day. My six siblings and I were always trapsing through the marshes near Pond Street Park, on the hunt for amphibeans. Much to my mother's dismay, we never arrived home empty handed.

I remember one particular outing quite vividly. Mainly because it was, hands down, the most successful hunt we'd ever experienced. We came home with one cardboard box filled with roughly 50 large bullfrogs, another just brimming with nearly a hundred of their smaller brethren.

Yeah, it was great.

Now, we all knew that my mom wouldn't be too keen on us keeping this treasure trove, so we slipped down the cellar via the bulkhead, and placed the rather heavy, violently jiggling boxes on the cement floor. Right by our very large, very old furnace (once coal burning, later converted to oil). The thing looked like an ancient beast, with long vents extending from it, like the tentacles of an octopus, to the radiators on the floors above.

Anyhow, shortly after we all sat down to supper, well, that's when we heard it. The croaking. Coming up from those radiators.

The loud croaking.

My mother looked around the kitchen, then at all of us. We just ate our food, trying with all of our might to look as though we hadn't heard a thing.

But after supper, we raced outside, around the back, and down those bulkhead stairs.

The boxes were empty.

Although we never did find those frogs, a faint persistent croaking remained in the house for weeks after...

Fastforward to last month. Joseph had been invited to spend the day with a friend who'd moved out to "the country." Joseph was thrilled with the idea of this day trip; I was anxious at the mere thought of it. His blood sugars had been somewhat erratic, and I was unsure of the activity level, the food, well, everything about this little outing-- except that Joseph really wanted to go.

Thankfully, his friend's mom is very calm, and very responsible, and not the least intimidated by the whole diabetes thing. So, Joseph was picked up that Saturday morning.

And as it turned out, letting him go, allowing him the freedom to spend a day in the woods with a good buddy, was a really, really good call.

He'd had a fantastic day, no major highs, and (huge sigh of relief) no lows. But best of all, he caught his first frog. A magnificent specimen (this woman writes with pride).

When he brought the frog home in a small ziplock container, with holes poked through its lid, I asked Joseph if he'd held his prize.

"Well, no."

He said this as if the question were entirely inappropriate.

"You held him when you caught him, though, right?" I asked, with hopeful insistence.

"No, we used a net."

I gave him an incredulous look, as if to say, "And just who are you?"

"That's it, we're taking him out."

"No! Mom, he'll get away!"

Before he could say another word, the lid was off; my two hands wrapped around a large, slimy, green bullfrog.

And for a split second, I was 35 years younger.

But then, the frog squeezed out of my hands, and onto the kitchen floor.

Just like that, the chase was on-- Joseph and I zig-zagging all over the room; the bullfrog hopping as high as the stove.

Yes, as high as the stove.

All the while, the two of us laughing until tears streamed down our faces-- until we finally got him trapped in a dish towel.

As we settled the frog (now christened "Ted") back into his container, we both agreed-- he was the most wonderful thing Joseph had ever brought home.

The next day, we purchased a tank, created a habitat half filled with water, and large rocks from our yard; fed him live crickets. And for weeks, watched with delight as our frog seemed to thrive, croaking at night like the sound of a shovel scraping the sidewalk.

But then, quite suddenly, Ted died.

Joseph and I cried together quite a bit that night. But later, I found myself thinking:

Dang! What is the deal, here? For cryin' out loud, it was just a frog.

And that's when I realized that when Joseph caught that frog, he grabbed hold of something more. Something that pulled the two of us together in a shared sense of wonder at creatures so very different than the rest of us.

And the pure joy of catching them.