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?
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.
Saturday, December 24, 2005
Just a quick post to say-- Happy Holidays!
Monday, December 19, 2005
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...
Friday, December 16, 2005
Thursday, December 15, 2005
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.
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.
Monday, December 12, 2005
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?
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?
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."
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.
Wednesday, December 07, 2005
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?"
"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.
"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."
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.
Monday, December 05, 2005
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?"
"Sometimes people kind of crash into each other here. You kinda can't avoid it."
So we climbed. 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 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.
"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.
"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.
Tuesday, November 29, 2005
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.
Man, all of a sudden I just feel sad.
To be expected, I suppose.
Monday, November 28, 2005
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."
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
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
Monday, November 14, 2005
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
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
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.
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
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.
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.
Monday, October 31, 2005
The Princess, and um . . .
the "Torture Victim."
(note the pillow case, for maximum treat volume)
Halloween is done. The last of the Trick or Treaters have come and gone. Joseph is still up, listening to music, while Ryan is chatting on the phone with a friend.
And Evan, well that little princess is passed out upstairs-- spent from the thrills of the evening. The candy (oh, and there was so very much candy). The costumes. The Halloween trappings.
Once darkness fell, she couldn't wait to get out there.
Very pretty, and, uh...
not so much.
This year, Joseph decided he must be very scary.
I thought he really pulled it off.
And at the end of the evening,
the Princess takes a call.
Despite consuming about 30 grams worth of candy, Joseph's blood sugars held steady (low 90s to mid 100s) throughout the night. Some well-timed boluses, coupled with his running all over the neighborhood scaring the bejeezus out of small children (and some large adults), appeared to do the trick.
Oh, and that thing attached to his face? It's a very lightweight, rubber prosthetic bolt. A glue-like substance called "spirit gum" holds it (and the ugly looking scar on his collar bone) in place. Stage blood was added for further authenticity.
Yeah, he was pleased.
Friday, October 28, 2005
Well, I had that little chat with Joseph's teacher.
I let him know how much we appreciate his willingness to work with us, and then went on to raise the points I made both in my previous post, and much of what appears in the comments to that post.
After determining that Mr. S. had no idea what Joseph's blood sugar had been just 10 minutes after his spelling test, I told him that Joseph was 56.
"Oh," he said quietly. "You know, when I think back, I should have known that something was wrong. I'm very sorry."
We talked of how to handle things in the future. Of how it would be wise to have Joseph check his blood sugar if he suddenly acts out of character.
Mr. S. requested more information about the behaviors that might indicate a low blood sugar.
I shared those ways I've been able (most of the time) to see a low coming on. Then I promised to forward websites; even try to arrange a meeting for him with a diabetes educator. If those things would help him to understand.
By the end of our conversation, Mr. S. sounded mighty sheepish about how he'd handled things, and seemed to want very much to learn how he could make Joseph feel more supported in the classroom (yes, I did bring up the point about how Joseph may not be liking school as much because he is feeling alone in his diabetes care. Mr. S. admitted that he rarely asks Joseph about his blood sugar, even when he's tested low or high).
The discussion seemed to be a success, right?
Then why do I feel so shitty about it?
I think that Kerri's comment on my previous post hits it right on the head. She tells of how she's "always found it very frustrating when people would assume [her] "outburst" behavior was always blood-sugar related."
This is precisely the issue that troubles me most about all of this-- trying to distinguish between just plain kid behavior, and something that is blood-sugar related, without making my son feel different -- or worse -- every time we try to make that distinction.
I can't imagine what this must be like ALL of the time for the person with diabetes; however, I do know that I hate when there is even a hint of a suggestion that my own emotional outbursts might be PMS-related (yes, sometimes they are, but not always).
And to me, that suggestion invalidates the feelings I'm experiencing in that moment.
Driving home with Joseph from school on Wednesday afternoon, I mentioned that Mr. S. might ask him to check his sugar if he thinks he might be low.
"Why mom? Why does he have to do that? He'll make me check my sugar all the time now."
As he spoke, the pain in his voice was unmistakable.
Looking in the rearview, I watched my son as he grew quiet. Leaning back in his seat, his head turned toward the window.
An expression of immense sadness on his face.
I don't know. I really don't know the right answer.
Monday, October 24, 2005
You know, I'm always writing about all of the wonderful things my son does. How brave and smart and strong he is. And that's all true. But he's also human. And never more so than on Friday.
Man, this is tough. Aw hell, let's just jump right in.
Joseph has been saying "fuck" lately. Not in my presence. Or in front of other adults. But with his buddies on the school yard. How do I know? Because, he told me, that's how. He tells me whenever he's done anything he's not real proud of. Often saying, "Mom, I don't feel right unless I tell you about it. It just sits in my stomach and makes me feel sick."
I'm not naive. This will certainly change as he gets older. But for now, as it was when he was very little, this boy feels compelled to fess up when he's done something wrong.
Anyhow, we've talked about the "F" word before-- back a few years ago when a friend of his had shared this word with him. At that time he asked me about it, and I had explained that it's an ugly word-- one of the nastiest words you could use, and one that could get you in a lot of trouble for saying.
Yeah, I know. I probably just served up one big 'ol hunk of forbidden fruit.
Now, after our little chat, he seemed impressed enough not to use the word, and to be sufficiently shocked if he heard it on the street (we live in a college town -- not an unusual thing to hear around campus).
Fast forward to just two months ago-- that's when he began saying the word himself. And shortly after, he made the decision to, as he put it, "break the habit." Needless to say, I was not happy to hear of his recent experiment with bad language (remember folks, he just turned 10), but I was proud of the fact that he wanted to talk with me about it-- and that he wanted it to stop.
He'd been doing great-- bursting with pride as he shared his progress.
But now he's in trouble.
On Friday, Joseph sat down to take his spelling test. His teacher said the first word, and Joseph didn't hear it. His teacher described to me, in an email, what happened next:
Joe was flustered because he missed the first key word. I don't repeat words so that kids stay listening and focused. I told him he needed to keep on going with the other words and would not give him that word. That word would come to him at some point during the test. He repeatedly asked for the word in a disruptive (loud) way. I continued administering the quiz to the class. Joe said, aloud, a phrase which had within it the word "fuck." I told him quietly at that point that his test was invalid-- he would get a 0 for it. Joe became quite upset for a moment, then proceeded to take the rest of the test. I'm sure he did well on it.Before I read this email, I already knew what it was about. Joseph told me the moment we arrived home on Friday.
On our way to recess outside he apologized. I accepted it. I also said I would be contacting you. He was not happy during recess. I took him down to the nurse right after recess when he said he felt low.
"Mom, I did something really bad. And I mean, really bad. I said that word again."
"Oh Joseph, we've talked about this."
"No mom, it's way worse. I said it in class."
"You didn't say it in front of your teacher, did you?"
At this point, Joseph looked absolutely miserable.
"Oh yeah. I didn't hear him say the first spelling word when he was giving us our test, and he wouldn't tell it to me. I just got really mad because he was being so mean about it! He just wouldn't say it again. And I guess I muttered under my breath 'What the F... ' I took the test, though. Even though Mr. S is giving me a zero. It was hard, but I didn't want everyone to think I was stupid. Then I went out to recess and just cried. Sam tried to make me feel better. But I knew Mr. S. was so mad. And that you'd be mad, too."
Yes, I was.
And, at first it was all about the consequences-- no Friday night movie, no gum (which he LOVES) for a month, and so on.
But later that night, and over the weekend, I got to thinking about my son, and what a terrific kid he is. And I also got to thinking about the events of Friday. Sure, Joseph can be hot-tempered, and irrational. But nine times out of ten, when that happens -- when it's that extreme -- there's something funky going on with his blood sugar.
Soooo, I thought back to Friday. After his teacher had left him in the nurse's office -- after recess -- it was discovered that, yes, he had been low.
He was 56.
On Saturday, I asked Joseph, "When did you take that spelling test?"
His answer: "Right before recess."
Now, I didn't tell him why I was asking. I don't want him to blame all of his moods or bad behavior on his blood sugar-- and I really don't want him to view his diabetes as a free pass to act out of control.
But then again, I don't want him penalized for something he can't control.
Do you see my quandary, here?
That's what made me think back to last Thursday, the day before the "incident." When I was leaving the school with Joseph that day, his teacher pulled me aside and told me that Joseph had been "acting out a bit lately in class," but that he and the kids are "getting used to it" and that my talk had really helped them understand this a little better.
Maybe I didn't do such a good job after all.
I don't want them to "get used to it." I want his teacher to recognize when something's wrong. Like when Joseph misses a spelling word, and then (loudly) badgers him to repeat it.
I want him to see when my son is clearly acting unlike his normal self, and suggest that he check his sugar before he says "What the Fuck?!"
I don't want my son to be different in a way that people feel they have to "get used to."
I don't want him to have diabetes.
Tuesday, October 18, 2005
Today was a beautiful day. Sunny, 72 degrees, a slight breeze. That's why when Joseph called home and asked me to pick him up after school, I said "sure." After all, he'd get home a lot faster than if he took the bus. And that would give him more time outside on this glorious day.
Besides, his school is only 10 minutes away.
So I loaded Evan into our small 95' Honda Odyssey, cranked the stereo with some U2 (Beautiful Day, of course) and headed to the highway. After getting off at the second exit, I drove a short stretch before noticing a vehicle with red flashing lights quite a few cars back. Then, after driving a few blocks, and turning right onto a residential street, I saw the green Dodge Neon just ahead of me, pull over. No blinker. Just pulled over. Annoyed, I checked the rearview before driving around the Neon.
That's when I saw those red flashing lights closing in fast. I turned down the radio, and could now hear the siren.
I pulled over, too. And turned my head in time to see "PARAMEDICS" splashed across the side of the small red truck as it sped past my van and continued on... and then I realized that those paramedics were heading toward Joseph's school, just a few short blocks away.
I drove on, heart racing, something large sticking at the back of my throat. All the time, my eyes glued to the back of that red truck.
Please don't take that left. Please don't take that left.
It made the left.
No, no, no. Please, no.
The Paramedics were closing fast on the next left, the one that would lead them to the front of the school. For those few seconds, time slowed. I could feel my heart pounding in my chest. Eyes, filling with tears.
But the Paramedics kept going. They never took that second left.
Less than a minute later, I sat in my van, parked across the street from the main entrance to the school, sobbing quietly-- cheeks soaked, stomach wrenching. Heart, still pounding.
Trying not to scare Evan, who sat blissfully unaware of what had just happened.
Monday, October 17, 2005
That's how Joseph celebrated reaching the big one-O.
Six boys, two adults, one toddler . . . all under one roof.
For 19 hours.
Yeah, some thought we were a little nuts for agreeing to do this, but hey, this was a big birthday. As Joseph said, "Mom, I'm part of the decade club, now."
Anyhow, things got started a bit earlier than expected. You see, the party was scheduled to begin at 4pm on Saturday. However, Joseph's buddy Zachary, a boy with flaming red hair and freckles, who lives just down the block, showed up at 8am.
He was really excited.
Zachary is two years younger than all of the other guests, and in Joseph's mind, his honorary little brother. He's a real sweetheart-- a boy who is very much affected by the fact that Joseph has diabetes. Whenever they're playing together outside (which is almost every day) and Joseph has a low, they'll both come inside. And as the meter counts down, I sometimes look over at Zachary -- his face, full of concern, breath held, eyes watering.
The kid just kills me sometimes.
So, Zach showing up early-- no problem.
Noah was next. His folks had other plans for that day, so his drop-off was at 1pm. Again, fine. Noah is another sweetheart. He's a very kind, very cerebral kid. And, because of this, I worried at first about how he'd do later with the other more rambunctious members of the party, but he made out just fine.
Sam, a bigger boy whose voice had already begun to change, arrived at 3:30. His mom said, "Sam just couldn't wait to come. He was up at 6am asking, 'how long before the party?'"
I loved hearing this, seeing the enthusiasm of these friends of Joseph's. He really had made some fine choices.
The last two guests-- Nate and Ahren -- arrived promptly at four.
So there we were. Did I have games planned? Special activities? Party favors and "goody" bags? The traditional singing of "Happy Birthday" followed by a "formal" present-opening?
You know, all the birthday-party trappings?
Well, no. Not exactly.
As each boy arrived, Joseph opened his gift and had a one-on-one moment to thank his friend, and then moved on to whatever we had going on.
Which was pretty free-form.
I thought it would be easier that way, and a lot more fun. It seemed that Ryan agreed with this approach. In fact, he expressed his feelings toward our responsibilities as hosts in very, well, um, minimalist terms. He told several parents at drop off -- "if anyone expects much more for their child than safety and food, they're gonna be disappointed."
Yeah, that about summed it up.
First instructions to the boys as the party began, "go outside." And that's where they remained for a chunk of the party-- out in the driveway-- scootering, skateboarding, shooting hoops. Milling about like bees, they were. Though every time Ryan tried to take a photo, they'd stop what they were doing and strike various goofy poses. Not exactly the moment Ryan had hoped to capture.
Around 5:30, I fired up the grill, and started flipping turkey burgers and "Boca" burgers (we had two vegetarians in the group.... man, how things have changed since I was a kid).
I set up the food out back on our patio table, called the boys, and said "time to eat." And again, left them to their own device. Oh sure, I came out once in a while with some more root beer-- diet for Joseph AND Zachary (who would never let his friend feel alone in anything).
Then it was back out front for more hoops, and more scootering and skateboarding up and down the wooden ramp that Ryan had built for Joseph. Leaning against our concrete steps, that ramp enabled boys to "drop in" and do "kick turns." (Oh yeah, I know the lingo.)
So this all went on until after dark. Around 7:30pm, we corralled the boys into our two cars for the "treat" portion of the evening-- which basically meant a trip to the DQ. The boys were in heaven. They stood outside with their icees, and chocolate-dipped cones (Joseph's favorite), and their Dilly bars. Oh, and one butterscotch shake for Noah. Interesting kid.
Anyhow, they goofed on each other, while I sat on a bench with Evan, helping her polish off a bit of soft serve. And wondering if letting Joseph have that medium cone was a good idea. He usually gets a small, but dang! This was his birthday party.
Back at the house, the next phase of the party began with me telling the boys, "time to go down in the basement." We have a decent-sized finished area-- nothing fancy. And it's loaded with toys. Of course, the countless Legos that Joseph has accumulated over the years are down there. (I suffered too many foot injuries to allow them to remain in his room.)
The boys built a whole Lego city, with a skatepark to boot.
Finally, at 9pm, it was movie time. Joseph had picked the Will Farrell vehicle, Kicking and Screaming. While I set up the flick, the boys changed into their pajamas, hauled their sleeping bags into the living room, and told each other rude jokes involving "farting" and "vomit" -- the usual fare from adolescent boys.
As they all grew quiet, I sat down and had a lovely dinner with Ryan.
By 10:30, I was ready for bed. So I left the boys to Ryan, who would be coming downstairs to check Joseph's sugars throughout the night.
Now, some might be wondering about Joseph's blood sugars during all of this. Well, after waking up higher than usual (183), then spiking two hours post-breakfast to 292, Joseph crashed less than half an hour after lunch, when he hit 45.
NOT how we wanted to start the whole slumber party experience.
Happily, his sugars remained steady for the remainder of the afternoon and early evening (between 74 and 151). But then, the roller coaster recommenced with a slight low (69) at 10pm, which I'm sure was due to the amazing amount of activity during the day. Then another low two hours later (this time, 66), followed by a rebound high that kept him hovering in the low 200s for a few hours. Not a good night, sugar-wise.
But birthday-wise, a damn good night, indeed.
A postscript-- After the Slumber Party, we had a family celebration on Sunday afternoon with Indian food for lunch (which didn't do too much damage), and then back home later for Ryan's fabulous double-decker chocolate cake. And in case anyone was worried, we did sing "Happy Birthday."
Wednesday, October 12, 2005
Ten years ago.
I remember when I first found out I was pregnant-- only two months after making the decision to try. I was home alone when I saw that second line, and just like that, I wasn't alone.
Less than four months later, I remember lying in a tent, listening to the rain fall heavy and hard on canvas. I felt the fluttering, then. For the first time, I felt my child move.
I remember sitting up, straining through tears to see an ultrasound image -- no longer a gender-less fetus, but now-- my son.
I remember leaving my doctor's office on Lakeshore Drive-- on a sunny, unseasonably warm October day. Walking west, and then south. Standing in a crowd of people on Michigan Avenue. Waiting, ready to cross over the Chicago River. And wanting to shout "I'm 3 centimeters dilated and 75% effaced!"
I remember, 30 hours later, lying on my side in a hospital bed. Breathing slow and deep. Four hours at nine centimeters. The only thing keeping me whole was Ryan's face -- so close -- and his hand, locked in mine, willing me to hold on, to stay with him, to stay with the baby.
I remember my doctor's voice, "Push! Push! 1-2-3-4-5-6-7-8-9-10! Look, Sandra, he's coming!" Only to see a dime-sized swatch of dark hair. I closed my eyes again, angry. For an hour, I continued to push, to the counts of ten, sometimes twelve. But then, during one of those counts, I heard Ryan's voice crack. I knew that now there was something to see. My son's head. One more big push, and the rest of him just slid out.
And then he was on my belly. Slippery wet, head misshapen from the long labor, eyes so dark.
The most beautiful thing I'd ever seen.
Wednesday, October 05, 2005
I went into Joseph's class last Friday to talk to the kids about diabetes. To prepare, I got hold of a great anatomy book from the library with some nice illustrations of the pancreas. Joseph and I spent some time discussing what he felt comfortable having me cover. I put together an outline (so as not to digress during said talk) and reviewed the outline with Joseph -- who suggested we have him check his sugar at the end of the talk, and have his classmates guess what it might be.
"Nice idea," I thought.
So, we're all set. Thursday afternoon, I called Joseph's teacher to confirm my 9 a.m. start time.
"Sandra, we have a small problem. You see, another speaker is coming in at nine, and I was wondering if you could come in after lunch, instead?"
Then Joseph's teacher paused a moment, before stiffling what sounded like an excited giggle.
"Well, actually, it's Jessica Doyle. She's coming in. The Wisconsin State Journal has been doing this "Where is Jessica?" series, and she'll be here today. We're all very excited."
Hmmm . . . Oh, wait . . . That's Jim Doyle's wife.
GOVERNOR Jim Doyle's wife.
So I'm to follow the first lady of the state.
Well, that's unexpected.
When I arrived, Joseph and his 20 classmates were sitting at their desks (arranged in two large semi-circles) heads bent, writing in their notebooks.
"They're writing a caption for a digital photo I've given them of Jessica Doyle giving her presentation," explained their teacher. "She was wonderful. The kids were really enthusiastic, and asked lots of terrific questions." Joseph's teacher could barely contain himself as he said these things.
"Great," I said, with some difficulty.
Now don't get me wrong, I thought it was wonderful that the first lady would come in like this. Just not right before I come in and try to explain something as complicated as diabetes and its management.
I needed the attention of these kids.
Joseph needed them to understand.
When the kids finished their assignment, Joseph was instructed to escort me to the front of the room, to a tall empty stool -- the one Jessica Doyle occupied in the photo.
As I sat down, I noticed something written on the blackboard behind me.
"Channel 15 -- 6:00 p.m."
Apparently, a camera crew had attended the earlier presentation. The class would be featured on that night's six o'clock news.
My stomach lurched a bit as I took my seat.
Before starting, I thought, "They're just 4th graders. I've given presentations many times, and to over a hundred grown men and women."
But those talks were not this important.
They weren't about my kid.
I launched right in. "Joseph asked me to come in and talk to y'all about diabetes, so what I'd like to do is . . ."
"No. My mom asked me if she could come in. And I said, 'whatever.'"
Joseph was to present with me, and it soon became clear that he saw this as an opportunity to entertain the class. As I spoke, he drew a picture of a pancreas, and some rather fearsome-looking cells, starving for sugar they couldn't have, because there was no insulin to "unlock" them-- to let the sugar in. He acted out what it was like to feel low. He walked from desk to desk, showing his pump, a bottle of insulin, his meter.
He was high. I knew he was high.
All this time, I talked in very basic terms about diabetes, about antibodies and autoimmunity, about things we can't explain-- like why Joseph has diabetes. I asked the kids questions like, "What foods do you think have sugar in them? What do you think happens when your pancreas stops making insulin? How do you feel when you haven't eaten in a while? " I showed them a syringe, an infusion set, a lancet.
The kids were great. They asked tons of questions. I could see the light bulbs turning on, one-by-one. It took some kids a little longer to "get it," but by the end, they were all on board.
And when I was finished, and we found out that Joseph's blood sugar was 321, all of their eyes grew big as saucers. They knew what that meant.
For a minute, they were all very quiet.
"What did we do right before my mom arrived?" Joseph asked, with a knowing smile.
"We ate lunch," shouted several of his classmates.
"Exactly," said Joseph. "And what did we have with our lunch?"
Then he reassured them that his blood sugar would come down. Even without a corrective dose of insulin.
When he called home an hour later (two hours after lunch), he was 162.
"Mom, everyone tried to guess what my sugar would be. It was great! They really know what I'm doing now. . . I like this a lot better than before."
On the case search:
Thanks to everyone who has been (and is still) out there looking, and to those of you who've posted comments and sent emails with suggestions. For now, Joseph is wearing the Cozmo case (thanks, Shannon).
While he does like it, I'm afraid it's a temporary fix. You see, there are a couple of drawbacks-- one minor, one not so minor. As Jay pointed out in a comment, the rather bulky clip does not swivel completely, thus the case is worn at an angle instead of completely horizontal. Joseph doesn't seem to mind this too much, though.
The big issue, however, is that this case is a pretty tight fit for the Animas pump (which is not quite as long and narrow as the Cozmo). Push the pump down into the case and you put pressure on the buttons at the front of the pump. Possible result: a bolus of insulin could be inadvertently given.
Now, since this is the only case Joseph wants to wear (the others we have just drive him crazy), he must always remember to lock the keys before returning the pump to its case.
I don't like that. It's just too easy for him to forget.
Soooo, the search continues...
On the molluscum:
Evan's bottom no longer has that handful of raised bumps. No, now it just looks as if a bomb was set off in the middle, blasting those original bumps from the center, leaving areas of reddened, injured flesh. But, oh no, that's not all. Now new, smaller brethren have appeared scattered upon her butt cheeks, thighs.... slowly making their way up her front.
Man, why did I let her doc treat this thing?
Wednesday, September 28, 2005
Or one very much like it.
It's falling apart, and that's a problem.
Since Joseph started pumping at the end of January, he's gone through two of the leather pump cases Animas provides (the velcro would always wear out, thus allowing the pump to fly free whenever Joseph was especially active). Next he tried a zippered pouch I had ordered from Pump Wear, Inc. It was a bit too big and "floppy" for Joseph's taste. I've had folks recommend a pump "harness," but Joseph is one of those kids who doesn't like to feel the pump on his body.
Sooooo, for quite some time we were on the hunt for alternatives. And that's when Ryan, who was visiting a friend down in Florida a few months ago, stumbled upon this cell phone case at a flea market. It was the only one, and it was a perfect fit.
The case has a clip that swivels (Joseph likes to wear it horizontally), a plastic clasp for a closure (Ryan is convinced that the ubiquitous magnetic closures won't hold when Joseph is really active), and it literally seems made for the Animas IR 1200.
So what's our problem, then? Well, the damn thing just fell apart. The back of the case has torn away at the seams. I've done a bit of makeshift repair-- using basting tape, and a tricky bit of sewing. But, alas, I think I'm in way over my head with this project. There's simply not much left on the back of this case to work with.
Now, some might say: "Come on. Just get the kid another case and be done with it."
It's not that simple.
Joseph is very attached (no pun, really, no pun intended) to this cell phone case. And because of this, Ryan's friend down in Florida has been scouring flea markets for the past few months, in search of more of these cases (yes, he is a very sweet man). He did have some luck-- he just sent us two cases that were very close, but (and for Joseph, this is one big but) not really right. The clip doesn't swivel, so he has to always wear it the long way down. The clip is also larger, wider, and an uncovered metal-- thus it's not as comfortable. And worst of all, it can easily slip off of his pants. Dang!
Last night, after Joseph had been wearing one of these new cases for several hours, he got really upset, nearly throwing the thing on the floor.
"I just want to wear my old case. I hate this thing! It just doesn't feel right!"
Then he stood there and cried-- with his old case cradled in his hands, holding it to his chest.
Now, I'm sure that many of you -- maybe those who don't wear an insulin pump or have a child who does -- might view this as an overreaction. But please imagine for a moment that you own some piece of equipment, one that has a bit of weight to it, and you have to wear it every day, all day-- and all night. There is never a break.
You'd want that thing to feel comfortable on, yes?
Now imagine that you've been wearing it for, oh, six months, and have experienced amazing amounts of frustration because every time you wear it, and try to do anything active, it either falls out or gets in the way. But then, almost magically, you've found that perfect container. One that makes wearing this thing almost effortless. You don't even think about what a drag it is to attach it, because it clips on easily and in just the right position. You can access it easily when you need to, but when you don't, everything stays secure.
Now that container is gone.
If anyone has any leads on this case (or one very similar), or has any suggestions, please comment or email. I will thank you.
And man, my son will really thank you.
Sunday, September 25, 2005
When school began several weeks back-- oh heck, even before then -- I attempted to talk with Joseph about doing a presentation to his class about diabetes. Other moms had told me of their experiences giving these talks. I'd heard things like:
"I went in and had all the kids gather round as I explained the ins and outs of diabetes, using props and illustrations."
"Sure, I had syringes, a vial of insulin, an insulin pen . . . you know, all that kind of stuff."
If only they were just "props."
"Oh the kids loved it, and my son was so pleased with how his classmates responded."
Yes, every time I heard of these little chats, they all seemed to turn out well. But you know, the vast majority of the diabetic kids involved seemed to be a bit younger than Joseph. And that was my only explanation for why he was so resistant to even discussing the idea of me coming in to give a talk about the disease.
Man, I still wince every time I type that word.
I remember the first time I spoke with a mom who referred to her son's diabetes as a "disease." Joseph was only a month out from diagnosis. And I had just read "Growing Up With Diabetes: What Children Want their Parents to Know." In that book, the author encourages readers to refer to diabetes as a "chronic condition" rather than a disease. Thus, when I heard this mom use the "D" word, I cringed, thinking "Why does she keep saying that?! It's just a chronic condition. A chronic condition." I must have felt that calling it something else, and really believing it, would make it so.
Oh well, as I am prone to do, I digress.
So. Giving a talk to Joseph's classmates about diabetes-- a no-go. When I would try to broach the subject with him, his typical response would be "I really don't want to talk about this. We talk too much about diabetes."
Or, "I don't want everyone knowing about this. I kind of like it that some kids get all nervous when they see me checking my blood."
A bit of an explanation here. Joseph's new class is comprised of children he doesn't know all that well. Last year, if he had a low or was feeling high, he had several close friends in which he could confide about the situation. And rely on for help.
I think he's been feeling a little unsettled about not having that base of people he knows he can trust. Last year, he was only two weeks out from diagnosis when he started school. We were all just beginning to learn about the disease and how to manage it. By the time we felt ready to talk with his classmates about it, there was no need. They'd already learned a lot right along with him.
So, when Joseph started school this year and stated, unequivocally, that he did not want me to come in, I felt I had to respect his wishes. Though I didn't like that he wanted to promote a kind of mystery around what he was doing and why.
But then, everything changed. Joseph came home from school last Friday, and out of the clear blue, said:
"Mom, can you come in to class soon and talk with everyone about my insulin pump? So many kids are looking at it, and asking questions like 'what exactly does the insulin do?' And I'm having a hard time answering them. You could tell them about the key thing, you know, like what you told Zachary."
Majorly taken aback, I said "I would love to come in and talk with your classmates."
So, this week, for the first time, I'll give "the talk." I'm a little nervous. Although I've walked through some of this with Joseph's neighborhood friends, explaining, as Joseph put it, "the key thing"-- wherein I liken insulin to a key that "unlocks" the cells in the body, thus allowing glucose from food to get into those cells -- I'd still like to pull together more information. You know, try to help the kids really understand what diabetes is, without scaring them (or Joseph).
Oh, and I'd love to get a really good picture of a pancreas. When I showed Joseph a small illustration of a pancreas I'd found on the web, and explained that it was located just behind and below the stomach, he was shocked.
"Geez, I never really knew where my pancreas was before . . . "
I guess that's a pretty good place to start.
Thursday, September 22, 2005
Yes. Evan's got it.
What, you may ask, is this "molluscum?" Well, apparently it's a pretty common, low-level virus whose only real symptom consists of a collection of raised, pox-like bumps on some part of the body. The full name of the virus is "molluscum contagiosum."
My first thought when Evan was diagnosed was
"hmmm . . . molluscum . . . sounds like some sort of exotic sea creature."
And when the doctor had asked if she'd been swimming shortly before the bumps appeared, I thought, "yep, it's from the sea all right."
But no. I was completely wrong. The molluscum, it seems, is in the wart family.
Ah, not nearly as romantic as I was thinking . . . more toad-like.
This leads us to the ailment's second name -- "contagiosum."
"Sooooo," I asked the doc, in as nonchalant a tone as I could muster, "I suppose this, um, molluscum, is . . .
uh . . . somewhat contagious?"
"Oh yes. Very."
Okay then. Immediately I thought back to the last time I'd shared a bath with my daughter-- when she was in that "horrible-fear-of-the-tub phase." I couldn't recall if the bumps were there at that time . . .
All righty then. "How does one treat the molluscum?"
"Well, there are a number of options. We can freeze the bumps with liquid nitrogen, treat them with an electric needle, scrape them off with a sharp instrument, or apply what we like to call 'beetle juice,' an acid that causes the bumps to blister."
Did I mention that these bumps were on Evan's bottom? And, did I also mention that I sat listening in absolute horror to this very soft-spoken pediatrician as she calmly described how she could get all medieval on my daughter's butt? That's right, she wanted to go after these buggers with a vengeance, because hey, they're in a very delicate region, one more prone to irritation and further infection.
"There is an alternative to topical treatment," continued the doc.
"Yes?" I looked up, hopefully.
"We can give her a systemic drug that can kick-start the immune system . . . get it to recognize this low-level virus, and attack it."
Okay now, most of the folks who read this blog will recognize the big red flag that appeared the moment this doc mentioned "kick-starting" the immune system.
"Well, I'm not too crazy about this option because, well, my son has type 1 diabetes, and since that's an autoimmune disorder, and we really don't know if Evan might develop it, I don't want to do anything that might stimulate her immune system."
"Well, then. Let's just stay with the topical treatments. Since she's so young, we can just apply a liquid that will encourage the bumps to dry up."
And so we did. Evan was a real trooper, laying across my lap as the doc dabbed each bump with a little liquid. It was all going so well, until she dabbed a particularly large, reddened bump. Evan began to cry.
It was at this point the doctor informed me that the liquid she had just placed on my daughter's bottom would cause each little pock to blister, somewhat painfully, over the next several days.
And we were to re-apply in the next seven to ten days. (No. I don't think so.)
As I sit typing, Evan is curled in my lap, still whimpering from the pain.
And angry, larger-than-expected blisters have already formed on my little girl's bottom.
All I can say is:
"A pox on the molluscum!" and "on the doctor who treats it!"
Tuesday, September 20, 2005
My child has no disease;
He's just a boy, like any other.
I've been here before.
Years ago, after Ma died.
For a long time, she still lived–
Occupying this brief space.
It's not a dream I'm in, you see.
I'm no longer asleep.
But I'm not really awake, either.
There is no loss.
I have no fear.
The "new normal" doesn't exist here.
But then, always –
That moment, when reality intrudes.
When I am fully awake.
When I remember.
Tuesday, September 13, 2005
Yesterday, Joseph had his three-month endocrinology visit. I'm always anxious about these appointments, often wondering if the doc will take one look at our "smart charts" and ask, "Do you people know what you're doing? What's with the highs? And don't get me started on all of these lows. You might as well pack it in right now, because, hell if you know how to take care of your son."
Er, well, something like that.
Anyhow, it never quite plays out the way I imagine. But let's backtrack a moment, shall we? Because yesterday was one of those days when the tiniest of efforts seemed to morph into something almost Herculean. What was the problem, you ask?
Just getting there.
Shortly after waking, it became very clear that a conspiracy was afoot. I had a plan, you see. I'd stayed up late the night before doing the final preparations for, what looked on the surface to be, a pretty straightforward morning:
- Review notes with questions for endocrinologist, while drinking soothing cup of tea;
- Take refreshing shower so as not to offend said endocrinologist with smell of anxiety-induced sweat;
- Wake and get breakfast for the kids;
- Dress Evan;
- Inform school that Joseph would not be in;
- Pack supplies for our outing;
- And then, off to our 9:45 appointment.
Problems was, too few people got the memo.
I got up, and just as I began filling the tea kettle, I heard Evan calling from the top of the stairs, "Mommy, mommy" she sniffed, "I want mommy."
Well of course you do. So I picked her up and carried her down the stairs. Trouble was, she didn't want me to put her down, she wrapped her legs about my waist like a baby monkey, determined to stay where she was, indefinitely. Okay, deep breath. Obviously, she was upset, and needed some time RIGHT NOW with mommy. Change of plan, sit down, read a book to Evan, and try to coax her into eating something, and then, on to the tea...
During implementation of the revised plan, Joseph stomped loudly down the stairs. Apparently, he'd "gotten up on the wrong side of the bed." Actually, I hate this expression, and because Joseph sleeps on a top bunk, against a wall, he hates it too-- pointing out to me that he can literally only get up on one side of the bed.
But I digress.
"How long do you think this appointment is gonna take? Because it's really boring sitting there while you and the doctor talk. Can I bring Evan out to the lobby during the appointment?"
Now, regular readers know that Joseph is a smart, sensitive, awesome kid. But, there are times when he can be, well, difficult. Unfortunately, because I still had not had my tea, I was a bit difficult myself.
"Joseph," I said, exasperated, "I don't want you to be rude at this appointment. No saying 'I'm bored.' I'm tired of hearing 'I'm bored.' Sometimes we have to sit through things that are not particularly interesting to us, but are important. This is one of those things. We see this doctor four times a year. You can tolerate being bored for those few visits."
"And another thing" my voice rose an octave as I was picking up steam, "if things go faster than I expect, then we'll just bring you to school afterward instead of going to lunch, since school lets out at 1:45 today."
"No, no" he said in a panic, "We don't need to do that." The fear was palpable.
Just as I was ready to come back with how this isn't a vacation day, the phone rang. It was Ryan.
"Honey, on my way to work, I noticed a lot of people in the neighborhood have their recycling bins out for pick up . . ."
Suddenly, Evan started pulling at my shirt, saying quietly, "Mom . . . mom. "
". . . I'm not sure if our street is scheduled for a pick up today or not, but our bin is pretty full."
More shirt pulling. "Mom . . . mom . . . mom."
" . . . could you check the new pick-up schedule? I think it's in the drawer by the phone . . . and put out our [huge] bin if the pick-up is today."
Clearly, Ryan had not gotten the memo.
When I hung up the phone, I turned to Evan, feeling guilty that I had been ignoring her attempts to get my attention. I said, in that soft, mommy voice:
"What is it, honey?"
She looked up at me with big brown eyes, and a somber expression.
"Mommy, " she sighed heavily, "I'm just bored."
Two phone calls later (the first from a friend who wanted to arrange a playdate for our kids, and really just wanted to "chat," and the second, a much-longer-than-intended conversation with the school secretary about Joseph's desire to play the cello in strings class), we were back on track.
The shower was quick. The tea never made. The recycling pick-up schedule never found. But the kids were dressed and fed. When we got to the hospital parking ramp, it seemed that everyone had a 9:45 appointment. We drove to the top of the ramp, before I decided to go wild and ignore a "Wrong Way" sign, in order to nab a just-vacated spot. We were in.
At 9:50, we ran to the parking ramp elevator, then on to the clinic elevator, and just as we approached the check-in desk, I realized that my notepad, filled with carefully thought-out questions, had been carelessly left behind-- still lying on the passenger seat of our van . . . a million miles away.
I was going to have to wing it.
Thankfully, I remembered all of my questions, Joseph successfully beat back boredom, and Evan only mildly freaked out in the examining room, until she realized that her brother would be the doctor's focus. And, when Joseph did eventually retire to the lobby with Evan, his doctor commented that "He's really a very bright kid, and so well-mannered."
I simply smiled.
Oh, and his HbA1c. It was 7. Down from 7.5 three months ago. "He's definitely ahead of expectations for adolescent children. As a matter of fact, our goal for high school and college kids is 7 or below. You really are doing a terrific job here," she said.
Again, I smiled . . . but this time, with a huge sigh of relief.
Thursday, September 08, 2005
All right. So when last I posted, we were waiting for Joseph's replacement insulin pump.
By eleven o’clock yesterday morning I was starting to panic, thinking "maybe this will be like the loaner . . . maybe it just won't come . . . "
I called Animas.
And again I explained the events of the past two weeks, adding that I was "losing confidence in the pump and the company we had chosen."
Now, to be fair, the technical support rep with whom I spoke was incredibly thorough. She walked through each of the issues I had raised last Friday, troubleshooting in an attempt to find an explanation for all of them.
All this, as I was rapidly losing my composure.
"This is insane! Our THIRD pump in seven months! They're supposed to last four years. These aren't even making it to four months!"
Understand, that because I had no replacement pump in hand, and Joseph was wearing something that could fail at any moment, I was a little out of control.
Finally, after offering many apologies and reassurances, the Animas rep said she'd call UPS, and get right back to me. Her professional response was typical of all previous conversations I'd had with Animas.
Well, prior to last Friday, that is.
Five minutes after I hung up the phone, the pump arrived.
Joseph was hooked up to the new pump, with a new set at 4pm (he didn't want me to come to the school and do it, and since I had pump in hand and could get to him in minutes, I felt okay waiting til after school . . . though I did pick him up instead of letting him take the bus).
And as if to give us one parting shot, the old pump sounded the "No Prime" warning once again as it sat on the counter top while we changed Joseph's set.
Joseph looked at the broken pump, with it's beckoning alarm and it's horribly faded display, and said, unsympathetically, "Stupid pump."
Like his pancreas, and the pump before this one . . . just another betrayal, I guess.
But then, he asked if we could put the cartridge cap from the old pump onto the new one.
"Why?" I asked, a bit surprised.
"Then I'll still have a part of that one with me. Then I won't miss it."
After we finished, he got up quickly and took off outside to skateboard with his buddy, Zachary-- only to return inside about 45 minutes later, looking frustrated.
"Mom, this pump just gave me a "Warning No Prime" message.
"Okay then, let's have a look at it," I said as calmly as I could. "Yup, we sure did just prime it 45 minutes ago . . . hmmm . . . all right, let's just re-prime then." So I primed out two measly units, because, as I said, I JUST PRIMED THE DAMN THING 45 MINUTES AGO.
"Is this pump going to work, mom?” Joseph asked, tentatively.
"It's gonna be just fine, buddy. Hey, did it fall out of your pocket at all? Or did ya bump anything? " I asked these questions, wondering skeptically about a "hiccup."
"Nope. Not at all. Can I just go outside now?"
Okay then. Not a good time to phone Animas, since Evan had cried throughout our little re-priming session. She was begging me to take her outside too, so I resolved to call Animas after Ryan got home.
I didn't have to.
Our local pump trainer, a CDE, called to follow up on our situation. We discussed everything that had happened. She apologized up and down, and explained that this is not typical of their pumps or their service. I reiterated to her that the two areas I felt were Animas' strongest -- stellar support and well-made hardware -- were failing.
"Sandra, listen, if anything happens overnight or tomorrow morning with Joseph's pump, call my cell phone. I will come out [she's an hour away] and loan you my demo pump until a replacement is sent. As a matter of fact, if Joseph has any problems at all, ever, with this pump, call me. I don't want you to have to wait around for a replacement."
This morning I received yet another phone call from Animas. It was from the rep I'd spoken with yesterday from the home office.
"Sandra, I got a call from your local pump trainer this morning. You've experienced an unacceptable number of problems here. We're going to send a loaner pump for you to have as a back up over the next three months. We'll review at the end of that period to see if you need it longer. The problems you've had are truly not typical of our pumps. But we don't want you to lose peace of mind worrying about whether or not this new pump is going to fail. "
So that's it. And I'm back to feeling much better about our pump company-- if maybe a little less confident in our pump.
Tuesday, September 06, 2005
Just before Joseph left school on Friday, his blood sugar was 118. In the 45 minutes he sat on the bus, and the five minutes it took for him to walk the half block from the stop to our house, his blood sugar dropped 81 points-- to 37.
Of course, we did not discover this fact immediately.
"Mom!" Joseph called out as he walked in the door. "My pump alarm went off twice on the way home from the bus stop. It said ‘Warning, No Prime.’"
"Okay, let's take a look."
"Oh, and mom, I think I might be a little low."
While Joseph washed his hands and prepped the meter, I looked over his pump. According to the history menu, we had primed it the previous night (when we changed his set). Okay then. To be on the safe side, I re-primed. When I turned to give Joseph his pump, a beep sounded from his meter indicating that his sugar had been tested.
"Wow . . . I guess I'm really low."
So, what is it with 37? We've seen this number three times lately (in and among some 40s and 50s). It's like, if he's gonna go way low, it's gonna be a 37.
I don't know.
Anyhow, we treated the low, and Joseph was back up in 15 minutes.
Needless to say, the thought of him walking home alone at 37 was more than a little frightening.
Something else bothered me too. Something that's been needling at me for two weeks. On August 19th, when we'd gone through airport security in Spokane, a security person had actually tried, too late, to prevent Joseph from passing through the security screen. Strangely, he said it was "for his own protection." That's never happened when we've flown before.
Since that day, Joseph has had many precipitous blood sugar drops, despite pulling back his insulin to pre-vacation levels. I had assumed the lows were due to the honeymoon factor-- that his pancreas was simply spitting out higher levels of insulin. But maybe I was wrong.
You see, for one day, our first day back from vacation, the pump recorded Joseph's bolus and basal doses in the previous day's history. In other words, for one day, it experienced an odd malfunction. After I reset the date and time, it worked fine, but still . . .
So, because I was feeling upset, and fearful that his pump might not be functioning properly, I called Animas. After explaining the above to a pump support person, she said, "I can really sympathize with your concerns, but it sounds like the pump experienced what I like to call a 'hiccup.' If it was bumped or dropped, sometimes it loses its prime, and just needs to be re-primed. "
A hiccup. Hmmmm.
"You know I think I'd feel more reassured if we were just talking about a toaster. But we're not. This is my son. And this is his insulin pump."
"Yes, I know. And I understand. But they're really picky about the reasons for sending out a new pump. This really isn't a good enough reason."
"Okay then, " I said curtly, as the anger that had been churning in my stomach finally reached the boiling point, "what is your name?" And then rapidly, "Because I just want to make sure I know with whom I've spoken, in case we need to follow up here. In case there's a problem."
After giving me her name, "um . . . well you know, I was just thinking . . . that um, we might want to do this. Well, it's not something we normally do, but it might be a good idea here. I can send you a loaner pump so that you're not without a backup over the long holiday weekend . . . "
The loaner pump never came.
Fast forward to this morning. I went downstairs to make Joseph his lunch for school, and to go over his overnight sugars with Ryan. As I walked in the kitchen, Ryan was there waiting. And he did not look happy.
"Joseph's pump display is fading," he said, in a defeated tone.
I sat down.
"The left side of the display is gone. I don't know if what's left will make it through the day. He can see enough of the screen to do boluses, but I don't know for how long . . . "
Violently, I grabbed the phone.
Joseph's new insulin pump – his third in seven months – will be here tomorrow.