Tuesday, October 31, 2006

Halloween Treats

Sunset behind our house last night...

... a perfect precursor to All Hallows Eve.

This year they both wanted to be scary.

The Gruesome ER Doc...

... and the Spider Princess

The kids (and a friend of Joseph's) have some scary fun
before the big candy haul.

And finally, a poem...

Joseph wrote this four years ago -- the day before his seventh birthday -- just a few weeks before Halloween.

I don't think I'd ever heard his classmates any quieter than they were the day Joseph read his contribution to the first-grade classroom poetry book...

The Graveyard

The graveyard is haunted, haunted, haunted.
The sound of witch's brooms.

And finally, Frankenstein
The monster.
His creator, Doctor Frankenstein.
Doctor Frankenstein loves Frankenstein.
Do you love Frankenstein?

The zombie, a relative of Frankenstein's.
The zombie is known for his bad behavior.
The dead are in the graveyard.
But they are not any dead.
They are the living dead.

The vampire awakes.
His cape darkens.
His mouth opens.
The coffin shuts.

The room is becoming very, very dark.
The werewolf howls.
The phantoms scatter.
The wind howls.
Ooooo. Ooooo.

The whomping willow
Swings its branches.
All the mummies
Dance with the ghost babies.
All the hideous beings.

The cup of goo.
The blood.
All the blood in the world.

All the monsters dance.
The graveyard is haunted, haunted, haunted.

Monday, October 30, 2006


His blood sugar was 130 just forty-five minutes ago.

I'm scrambling to get ready for our family night out-- we're going to have dinner with some friends at their new home.

While I dry my hair as fast as I can, the kids play downstairs in the living room. Ryan just ran out to pick up a couple of dvds (Monster House and Edward Scissorhands) for the movie portion of the evening. The kids will watch, while the adults will drink wine and chat. Everybody wins.

My hair is still damp when I switch off the dryer, set it down on the side of the sink-- and listen.


And suddenly, there it is-- that awful, sick feeling in my gut.

I take off down the stairs, turn toward the living room, and before I even enter the room, I see Joseph's legs stretched out on the couch.

Oh God.

Running to him, I have to skirt around Evan-- who sits quietly in the center of the room, playing with her Polly Pockets.

"Joseph, Joseph," I say as I take a firm hold of his shoulders, shaking them.

"Wake up! Honey, you have to check your sugar!"

He's not responding.

Still holding his shoulders, I lift up the top half of his body-- my heart slamming against my chest.

He feels so heavy.

"Please, Joseph! WAKE UP!"

"Wha- What? Okay, okay, okay," he says quietly, groggily.

He gets up slowly-- swaying a little as he makes his way to the kitchen. I'm right behind him.

After a cursory rinse of his fingers under the faucet, he turns to the counter where I have a test strip loaded and ready, his lancing device in my outstretched hand.

His eyes, still not completely open, seem to have trouble focusing as he pokes his finger, squeezes, and looks for that tiny bubble of blood. I hand him the meter.


"Should I have four?" he asks, sounding exhausted.

I get him four glucose tabs, and watch as he slowly chews each one.

Five minutes later, I ask him how he's feeling.

"Mom, you always do that. I just ate the glucose tabs. And I still feel low," he says in a tired, slightly exasperated voice.

After fifteen long minutes, Joseph's bg climbs to 91.

For a few moments I sit quietly, thinking about what just happened-- about what this kind of low means for my son.

And I'm really, really scared.

But then, I take a deep breath and return to our evening out with the kids, with friends.

Because right now, there's nothing else I can do.

Thursday, October 26, 2006

On Missing Those Cues

Thanks to everyone who responded to my previous post.

I understand what you're saying, but this is a real tough one for me.

Quite a while ago, I accepted the fact that we can't beat this thing-- perfection just doesn't exist. All we can do is work hard to peacefully co-exist with this disease -- highs and lows are inevitable.


But recognizing those low blood sugars-- the ones that Joseph can't feel himself -- has been something I could do well for a while now.

Sure, Joseph can be wacky when he gets around friends-- it's that whole adolescent-boy-humor thing -- but honestly, I can usually tell the difference.

It's in his eyes, the way his smile lingers a little too long, the hint of a slur in his speech, how his body moves just slightly off-kilter...

Missing this kind of low scares me-- because the ones he can't feel are usually those with the most potential to become dangerous (i.e., he's falling fast and/or the low doesn't come up after the usual treatment).

And, I'm afraid we haven't yet figured out the reason for these lows. Same thing happened yesterday and last night-- and we went way conservative on his lunch and dinner boluses.

He was 82 just two hours after eating lunch (?!), ate a pile of popcorn at school with no bolus, and was 60 just 30 minutes later.

Three hours later-- right before dinner -- he was 59.

The only thing that comes to mind is that we changed his set on Tuesday morning, and he's got some kind of uber infusion site going...

Which would be okay, but how do we explain the lack of any rebound highs? He's had multiple lows over the last two days, and yet none of the usual later rebounds.

I know it's only two days, but it's got me wondering this morning about what his liver is doing... where's that sugar it's supposed to spit out in response to these low blood sugars?

It's also got me a bit mad that we have to wonder at all about what our son's liver is doing.

Wednesday, October 25, 2006

Missed Cues

I know I promised a post about the RI JDRF walk-- that's still coming -- but something happened that I couldn't leave sit.

Last night, Joseph and I went out to dinner and a JDRF support group meeting with a fellow blogger (Jenny from Until a Cure) and her son, Tommy.

Several hours before we were to meet our friends, Joseph called from school to tell me he had gone low-- his blood sugar was 64 at at 2:45 p.m. This surprised me because he'd eaten an apple two hours earlier and turns out, had forgotten to bolus for it (in hindsight, thank heavens he forgot).

Joseph treated the low with several glucose tabs and 15 minutes later -- after his bg had climbed to 90 -- an additional 25 gram cereal bar.

He should be good until our dinner.

Or so I thought.

By 4:30 pm -- an hour and a half later -- his bg had once again fallen. This time, to 54.

What the hell?

He gobbled down four glucose tabs, and within 15 minutes his bg had risen sharply to 166.

All right, I thought, we're gonna meet our friends for an early dinner. Now he should be fine.

Less than an hour later we're sitting in a booth at an Italian restaurant opposite Jenny and Tommy.

Joseph starts acting really silly-- talking loudly to Tommy, saying things that make no sense, and cracking jokes about almost anything Jenny and I say.

Geez, this kid is bouncin' off the walls. He must be really glad to see Tommy.

(Bad assumption, I know.)

"Hey," Joseph says to our very pretty waitress, "do you have to go to school to learn how to be a waiter?"

"No," she responds with a smile, "we just learn on the job."

"How many plates did you break?" Joseph asks with one big 'ol grin.

"None," she says, again smiling.

"Joseph-- please settle down," I tell him quietly, my hand on his shoulder.

He begins repeatedly tapping me on the shoulder, giggling and getting Tommy to do the same to his mom.

I plead with him several times to settle down.

Eventually, Joseph is under the table-- Tommy joins him there for a couple of minutes. The two boys laugh, using the backlights on their pump screens to see under there.

I'm embarrassed. I can't believe he's acting so over the top.

When our waitress finally sets a basket of large, soft garlic breadsticks in the middle of our table, Joseph can't get enough of them-- he devours two in less than 10 minutes.

And after our plates of pasta arrive, my son immediately tucks in-- polishing off a plate of linguini in marinara in no time.

By the end of our meal, he seems far less out of control-- and at the JDRF meeting, completely himself again.


It wasn't until we got home -- when again he got that look, and started making some more uncharacteristic, off-color remarks...

When, after several protests...

"Mom, my combo bolus is still active... geez, it hasn't even been that long since I ate... you know I had some Starbursts at the meeting... "

I made him check his sugar, and discovered he was 76 and falling fast.

It was then that I finally realized what must have been going on at the restaurant.

He was crashing.

And I never saw it.

The very same mistake I'd gotten so angry about last year -- when it had been his teacher who never saw the signs.


Monday, October 23, 2006

Playing Catch-Up -- Part One

A week ago last Friday, I left Ryan and the kids for a weekend in Massachusetts. One of my sisters -- Teresa -- was turning 40, and I flew out to help her celebrate the occasion.

I originally intended to just show up at her surprise birthday party on Saturday night-- adding still more shock value to that event.

(I hadn't spent a birthday with Teresa in over a decade.)

Ah, but then I came up with a far more cunning plan:

I'd arrive at her house early on Saturday (while she attended her daughters' soccer games), make us two cups of piping hot tea, and be there to greet her when she walked in the front door.

We would spend the afternoon together. I'd tell her we had dinner reservations, and later, I'd say we had to make a side trip to a local tavern (the site of her party)-- enlisting the help of an online friend to get her there without suspicion of what was about to happen...

It was perfect.

(Can you see the hands deviously folding and unfolding?)

Now, Teresa was not the only one in the dark about this visit-- none of my six siblings and their families had a clue that I was in town.

None but Teresa's husband, that is.

I had to tell Bill. After all, he was the mastermind behind the surprise party.

Also, I needed him to leave the door to their house unlocked, and to make sure their almost two-year-old, 90-pound Golden Retriever "puppy" was not in the house when I arrived.

And yes, he's a jumper.

About an hour before Teresa and her family were expected home, a good friend (Sheila) drove me to Teresa's house. We pulled up, and the first thing I noticed was the lack of a very large dog.


"So Sheila, you don't have to run right off now, do you?"

She laughed at my trepidation, cheerily calling "here puppy, puppy" as she walked up to the front door. I trailed slowly behind, afraid that the sound of my small, black, wheeled suitcase rolling across the driveway might prompt a charge.

Walking in the door, my heart was pounding.

(Now, I feel the need to interject here that I am not typically afraid of dogs. It's just that puppies are so unpredictable. And large puppies, scarily so.)

Anyhow, still no sign of the dog.

"What's his name?" Sheila asked.

"Jackson," I whispered, not wanting my response to be mistaken for a summons.

After searching the house, and looking out the back door, I concluded that they must have taken the dog with them.

But then, I opened the back door for a second look, and like a magic trick-- he was there.

"Oh! Oh my God!" I shouted, closing the door on him as he was in mid pounce.

"You really are afraid of dogs," Sheila said, laughing and shaking her head.

"Sandra, he's wagging his tail-- he's not going to hurt you," she went on reassuringly, as she (not-so-reassuringly) headed for the front door.

So now it was just a matter of making tea and waiting.

And listening to the sporadic barks of a dog who really wanted to play.

Half-an-hour later, and I was still alone.

After dumping two cups of very dark tea into the sink, and dropping a second set of bags into those same cups, the tea kettle just nearing still another boil-- a car pulled into the driveway.

My brother-in-law ran into the house, shouting, "HELLO?" I stepped from behind the pantry door to see my 11-year-old niece, Alanna.

She screamed, her face a brilliant red.

"It's okay, Alanna. I'm gonna surprise your mom."

Bill quickly ushered Alanna out of the kitchen, saying: "Teresa's two minutes behind me. She's gonna pull in any second."

I poured hot water into our two cups, spilling at least half a cup all over the counter. Then I grabbed my cell phone and punched in her number.

"Hey, whaddaya doin'?"

"Just driving home from the girls' soccer games. "

I could hear her van pull into the driveway.

"So, what are you gonna do today?"

"Oh, I have to work on that grant proposal, again."

The dog suddenly starts barking. I try to cover the phone, hoping she doesn't hear him.

She pauses.

The front door opens, and she starts talking again:

"So, there's a couple more things I need to do before I can finish the grant."

"Reeally," I say as I round the corner of her kitchen, walk right on up to where she's standing in the doorway, cell phone glued to my ear--

"So, do you need some help with that?"

"What-the-hell-are-you-doing-here?!!" she rapid fires at me-- eyes popping, hands raised and trembling.

"It's your birthday, remember?"

"Oh. My. God. I can't believe you're here," she says smiling, still shaking, as I throw my arms around her.

The remainder of that day was spent keeping Teresa off balance so that she wouldn't suspect that a party was coming.

This was when Phase Two of "Operation Surprise-the-Heck-out-of-Teresa" kicked into gear:

Bill handed the two of us a gift certificate for dinner at an upscale local restaurant.

Then later, as my sister looked on, I read a very expected email from the OC's own Nicole:

Hey Sandra,

Hope your trip up is great...

I'd really like to see you while you're up here and
get you the little gift I have for Joseph - it's not
much, but I think he'll like it.

I thought maybe we could meet up on Saturday night
(tonight, really - it's after midnight) - if it's
convenient for you. I know you'll be busy, but Bob
and I were planning to head out to meet a couple of
friends for a few drinks - right in Franklin at Cole's
Tavern (I can google the directions for you, but maybe
your sister or brother in law knows how to get there -
it's on Washington Street) We're thinking of doing
that around 7:30 or so - maybe you could make it? Let
me know, OK...

Talk soon.


My sister, convinced we were there to meet Nicole, never saw the party coming...

Coming soon: Walking the RI JDRF walk, and meeting a real live member of the OC!

Friday, October 20, 2006

Okay, So It's All Good

All right. This is the first time I've had an opportunity to update you all on our situation.

(It's been really, really busy over here; Evan's been sick -- again -- poor kid, and Blogger has given me grief each time I've tried to post! Grrrr.)

So, while waiting for a call back from Animas, I spent all of Wednesday fuming-- getting more riled with each passing hour.

Oh yes, I was itchin' for a fight.

Well, folks-- I never got one.

In fact, the people at Animas reminded me yet again why I was so very glad Joseph had chosen their pump in the first place.

Wednesday night, I got a call back from a very apologetic Pump Support Manager. It seems that the person who sent me the offending email had forwarded my voice message (and a rather stern email I'd sent to her) to the Pump Support Manager-- who had been out of the office all day (thus the after-hours call back).

Anyhow, she explained that the email I'd received was the result of periodic audits done on "outstanding" product.

That in essence, I'd gotten a form letter.

"This is more than a little upsetting," I explained, "given the reason we had the loaner pump in the first place."

"Yes, I understand completely," she said. "My son wears an insulin pump-- I'd be very angry, too."

We went on to discuss details of our previous pump failures, and how well Joseph's current pump has been working.

"Well, it does sound like you have more confidence in your son's current insulin pump," she said, "but still, why don't we have you hold onto that loaner until 2007?

We'll just call you back after the first of the year and see how you're feeling then-- that way you can get through the holidays with no worries."

And that was it.

Oh wait, there's more...

I got a second call yesterday afternoon from Animas-- following up on my request for information about our last pump failure (I never did find out if the priming problems we'd had were just us or the pump). Seems it had been a malfunction-- an "intermittent connection" problem.

So, once again-- it's all good.

Wednesday, October 18, 2006

Animas (aka Johnson & Johnson) Plays Hardball

Last night-- the first time I had a chance to check email since coming back from a weekend away (another post coming on that), I found this in my mailbox:

Dear Mrs. Miller:

Our records indicate that Animas shipped you a pump on 09/08/2005. As per our correspondence, you were to return the pump, serial # 14-23604-10. As of today, 10/16/06, we have not received this pump.

As outlined in the return instructions sheet sent with the pump, you are responsible for returning the pump. If we do not receive the pump within the next 10 days, you will be billed for the cost of the pump.

If you have any questions regarding the return of the pump or need assistance, please call Pump Support at 877-767-7373, extension ____. Thank you for your prompt attention to this matter.

Thank you,


RGA Coordinator

Animas Corporation

a Johnson & Johnson Company

1 877 767 7373 Ext. ___


First, I have never received any correspondence regarding our loaner pump. This note makes it sound as if they've been hounding me for months.

Second, the reason we have a loaner pump at all is because one of their pump support people left us high and dry going into a Labor Day weekend last year-- refusing to replace Joseph's pump, but promising us a loaner that Friday because we'd been having problems.

But then never sending us one.

By the end of that weekend, Joseph's pump was no longer functioning.

(This would be our second pump failure since Joseph began pumping the previous January.)

Soon after, we received two pumps-- Joseph's third in seven months, and then a loaner pump for backup.

And finally (can you hear my voice rising?), I've not heard from Animas on this since last December when a pump support rep called to see if we were ready to return the loaner, but then (given our past problems) agreed to let us keep it for two more months. By February, we were glad to have the backup pump-- Joseph wore the thing for two days while we awaited delivery of his fourth insulin pump.

His fourth pump in eleven months.

Right now, while waiting for this woman to return my call, I'm so angry I could spit.

A phone call, letter, or email, simply requesting return of the pump -- acknowledging why we had the loaner in the first place, and that things seem to be going well with Joseph's current pump (which is true-- we haven't had a problem in almost eight months) -- would have been entirely appropriate.

But this?

Tuesday, October 10, 2006


I'm sitting in a hard gray chair, sliding my hands up and down its chrome armrests.

Trying very hard to stay calm.

The kids, meanwhile, are having a blast.

Evan sits on Joseph's lap, his arms wrapped tightly around her waist, as he propels the two of them all over the exam room on the doctor's wheeled chair.

Evan cannot stop giggling.

What if it's like the last time? Or worse?

Finally, the door opens-- and there she is.

And my God, she's smiling.

Before she opens her mouth, I want to cry.

And then:

"How does 7.4 sound?"

I can't talk.

"Sandra, I really like what you're doing with Joseph's basal rates -- this is just beautiful. And Joseph, you've grown so much-- over an inch in three months."

"My goal is five feet," Joseph tells her with a grin. And then he jumps up off of her chair, puts Evan down next to me, and stands in front of the doc.

"Let's see if I'm as tall as you now."

She laughs, telling him: "Not yet, but really close-- by next visit for sure."


I know that he is so much more than what this number indicates.

But still.


I'm so happy, I could cry-- and though I didn't at that moment -- I'm crying now.

Tuesday, October 03, 2006

I Am NOT Fond of This

So, about two weeks ago I began noticing a number of tiny moths flying about the house.

Sitting down to dinner one evening:


"We're always going in and out so much," I said, "and with it getting dark earlier, I'll bet these things are attracted to the lights."

We continued eating-- unphased.

But then one night, as I opened the pantry to grab some couscous:


At least half a dozen of them.

This is NOT right.

With a mix of anger and dread, I took everything off the top shelf of my little pantry, leaned in, twisted my head, looked above-- and saw them.

Dozens of the things-- perched like bats.

Oh. My. God.

Let me just say that -- in general -- I am not afraid of bugs.

I have encountered many an exotic specimen in my garden, and on occasion have even done the live capture so that my children could share the wonder.

But bugs that enter my house on their own accord.

Uninvited pests.

Creatures in my pantry.

My food.

No. Way.

Needless to say, I was mobilized.

Now, I could describe what I found in the depths of my pantry in glorious detail.

But quite frankly, my stomach is queasy just thinking about it.

Let's just say that every stage of development was represented.

So what are these things? And how did my pantry -- my house -- become infested with them?

Well, they're Indianmeal Moths, and they appear to have come from a forgotten bag of brown rice purchased from the bulk section at Whole Foods-- research tells me that "old" grains are prone to breeding the little creatures.

(Thus, I blame this breach on the fact that we don't eat nearly enough brown rice.)

Now, in addition to rice, these things seem to have a fondness for nuts (pecans purchased almost a year ago were a particular favorite) and sun-dried tomatoes.

Seems I have gourmet moths.

Anyhow, after taking apart my pantry twice-- vacuuming, scrubbing, and tweezing every tiny whole and crevice (then spraying 409 in every single opening).

After throwing away two large rubbish bags of food (essentially anything they could have gotten into).

My pantry is gleaming.

Exhibits A & B

And yet, I continue to find them.

Shown here, on my bedroom wall.

So now it's on to the pheromone traps-- these will only attract the randy males, but should help stop future generations.

In addition -- morning and night -- I inspect the pantry.

While home during the day, Evan and I go on the prowl-- my daughter actually thinks this is fun.

And as I type, something appears out of the corner of my eye...


Gotta go.