Measurement

Name something you can measure.  What do you measure it with?  How do you go about taking the measurement?

This was homework the other night.  My daughter had to choose 5 types of measurement about which to answer these questions.  She came up with length, weight, distance and temperature; answers most kids would write down.

Her final response, however, was unique:

You can measure blood sugar.

You measure it with a glucometer.

You put a new test strip in the meter.  You poke yourself with a lancet.  Then you squeeze a little blood out of your finger and put it on a test strip.  The meter measures how much sugar is in your blood.

The next day, there was excitement.  "Mommy, guess what?  I won an Einstein award for my glucometer answer!"  This is a prestigious and difficult to earn slip of paper, given for particularly bright and unique answers.   Third graders put them into a hat at the end of the week for a chance to win fabulous prizes such as  bookmarks and erasers.  She was thrilled.

You've got to love those rare moments when diabetes actually works in your favor!

Ruby's Meter

You’ll note that in the picture to the right, there is a teddy bear with a glucometer and a lancing device.  This is Ruby.  She arrived at our house shortly after my daughter’s diagnosis with diabetes.  She is a bear with diabetes; part of JDRF’s bag of hope program which gives newly diagnosed families tote bags full of information, and a stuffed friend who also has diabetes.  Until recently, Ruby was pictured here with my daughter’s equipment, but my family has reminded me that Ruby has her very own testing supplies.

A few years ago, when my daughter was about 5, she received a kit to make a castle out of lightweight clay.  When she was finished with the project, there was a lot of clay left.  What did she want to make with it?  She couldn’t decide.  The kit had given her a great pattern, a mold, directions.  She was unsure what she could create on her own.

Eventually she had it.  “Ruby should have her own meter, Mommy.” 

My daughter carefully crafted the items below out of her leftover clay.  The meter fits a real test strip.  The lancet has a hole at the top where the sharp would poke through.  I came to the table to admire the finished project and was impressed with the meter and lancet.  I just couldn’t figure out what the last item was.  Was it supposed to be an insulin pump, maybe?  Or a juice box? 

“That’s the bloody tissue, mommy…for her to wipe her finger with.  She’s already used it a lot.”

The Battery

It’s 2 a.m. 

My husband is standing next to me.

“Hey.  How long do we have when the pump has a low battery alarm?”

“You mean it’s down one bar?” I asked, hoping we had a day or two.

“No…it beeped or something.”

“Half an hour,” I said as I crawled out of bed. 

My husband is a great partner in the care of my daughter’s diabetes (and rightfully insisted that I include a disclaimer if I wrote this story).  He can do all of the everyday things, like helping with blood sugar checks, carbohydrate counting, and bolusing.  He knows how to change sites, and set temporary basal rates.  He probably could have figured out how to change the battery too, but he’s never done it.  Two a.m. didn’t seem like the time to give it a try.

So there I stood, by her bed. How had I missed the earlier low battery signal? She usually tells me as soon as it appears.  I pushed a button on the pump to “wake it up,” hoping that in his sleepy haze my husband had misunderstood what was happening.  No such luck.

Thankfully, we keep spare batteries upstairs, not just in the closet, so I located one of those easily.  But I needed a coin to twist off the battery cap.  I briefly considered breaking into my daughter’s piggy bank, but stumbled off to find my purse.  I unhooked the pump, took it out of the fanny pack, unscrewed the cap, switched the batteries, rewound and re-primed the pump as prompted, and reattached it to my sleeping daughter.  I tucked her back in, and went back to bed, but I was wide awake.  The next day was long.

In the morning, she appeared.  “Can I keep this quarter I found on my dresser?”

“Of course you can, sweetie.”

Ms. Sunshine

The dread surfaced almost a month ago, when the orders first crossed the doctor’s desk.  “I don’t want to do that, mommy.”  With those words, the long process of talking my daugher down from the ledge began. 

“Remember last time…the new lab we went to?  The lady was really good, right?”

“I’ll take you to lunch again afterwards.  Anywhere you want!  Where should we go?”

We then avoided the topic at all costs until the day before the appointment.

“Tomorrow’s your lab work.  Where are we going for lunch?”

“I don’t want to go.”  Her face got red. She pulled herself together.  “Maybe the diner.”

The next day we arrived at the lab.  They took us right in, which seemed encouraging.  I’d run out of responses to  “I don’t want to do this,”  “I don’t like it,” and “Why do I have to do this?”  The only way to end her increasing anxiety was to get this over with.

“Hello sweetie,” said the lab tech in a sing-song voice.  “My name is (we’ll just call her Ms. Sunshine here).  How are YOU today?“  "Fine."  "Oh, that's wonderful!"

"Now, sweetie, don’t be scared by that little boy yelling.  This isn’t going to hurt more than a little teeny-tiny pinch.  Like this..." And she pinched my daughter's hand.  My child's face became increasingly red.  Tears were welling up. I was wishing Ms. Sunshine would just grab the needle and get this whole thing over with.  “Oh sweetie…don’t be upset.  Let me give you a hug.”  And she did.  Really.  Then she left the cubicle to get a needle. 

“What do you think of her?”  I asked.  “I think she’s a little crazy.”  Confidence had not been inspired.

“O.K., now, sweetie-pie.  I have to tell the computer here what I’m going to do next.  Can you tell me your whole name, and your birthday?”  She obliged.  “See here…that’s you, right there.  It says here I have to take one tube of blood.  Can you tell me what color the lid is in the picture?”  “Red?” “YES…that’s right!   Now let me get one of those red lidded tubes.  See?  They’re right over here!”

On and on Ms. Sunshine went, slowly yet cheerfully describing every gory detail of the process and repeatedly stating that it wouldn’t hurt at all.  Finally she insisted that my daughter sit in my lap (“Mommy will hug you and you’ll feel so happy”), and the process officially began.  It was over very quickly.  She was actually fabulous at finding a vein, and before we knew it, my daughter’s mantra of “I don’t like this I don’t want to do this” was over. 

“There, sweetie.  That wasn’t so bad, was it?  And probably you won’t have to do that again for a very, very long time, maybe not until you go to college.”  Big smile.

We had let the “this won’t hurt a bit” fallacy slide, but I had to take this one on.   “Unfortunately, Ms. Sunshine,” I said, “bloodwork is a part of her life and she has to do it often.  She knows it’s no picnic, but that it’s necessary for her health.  Thank you for getting the blood so easily today.  She’s always very nervous until it’s over with.”

“Well, “ she said to my daughter, “ you were the best patient I’ve had all day.   So brave!  Here...you can have these! Happy St. Patrick's Day!"  And thanks to Ms. Sunshine, we now have a lifetime supply of Garfield band aids. 

 

Clothes Shopping

First, a disclaimer:  I’ve never liked shopping for clothes.  Not for me, nor for anyone else.  Baby clothes are kind of cute, but otherwise, count me out.   At a shopping mall or large clothing store, I become overwhelmed, overstimulated, and grumpy quite quickly. 

The time has come, however, for the annual spring shopping trip for my daughter.  We’ll head out in the near future to seek out tops, Capri pants, bathing suits, shorts, sandals, and an Easter dress.  I’m grateful that she’ll look at some of the bejeweled tank tops and short shorts with “hot” written across the bottom and  say, “that’s too crazy, mommy.”  We can still find common ground on the fashion end of things.  It’s the practical aspects of clothes we find challenging.

Most of the pants and shorts she owns were purchased less because of style and more because we’d been trying on pants for hours and these were the first, with big pockets, that actually fit. While almost everyone in 3^rd grade wears yoga pants or leggings to school, my child wears pants with pockets, because that’s where she likes to put her insulin pump.  It’s discreet, yet accessible.   She has a drawer full of fanny packs and belt clips.  These are fine under dresses, or to wear with pajamas, ballet clothes and softball uniforms.  Most days, though, she prefers to wear a pair of shorts or pants with the pump tucked securely away in a pocket.  The problem is that pockets are a rarity in girls’ clothes.

Next week, if history repeats itself, we’ll visit a dozen stores.  Some of them will sell no pants or shorts with pockets.  A couple will have lots of them, in bizarre colors and styles.   Others will have reasonable looking choices, but the size sevens will be too tight and the size eights will require a pair of stilts to be wearable.   And the last store we go into, whichever it is, will have cute shorts, springy Capri pants, and athletic shorts; all with pockets.  They’ll fit beautifully.  We’ll buy them, lots of them, whatever the cost.  Stay tuned…if we hit the mother-lode of pocketed shorts, you’ll read it first here!

Springing Ahead

             

Along with most of the clocks in the house, my daughter’s pump clock got set ahead one hour this weekend.  Others with diabetes tell me this hour time change poses no problem for them.  Somehow, it throws us for a loop every time.

At 2 a.m., under the watchful eyes of many webkinz, I rolled my daughter around until I could find the pump, wondered how this didn’t wake her up, and changed the time.  Her blood sugar was perfect. 

We saw perfect again once or twice on Sunday, but also saw 315 and 47.  From experience, I know consistency will return in a couple of days.  We may need to do some minor tweaking of basal rates, but essentially things will work themselves out once her body clock catches up with the pump clock.

 Meanwhile, calls will come in from school, many extra test strips will be used, and juice boxes will be at the ready.  We’ll consider this a secret inside peek at how our bodies adjust to this semi-annual time change, and be glad that the next time it happens, we’ll get an extra hour of sleep to help us cope with the consequences!

Giving it Away

Recently, you read about all of the diabetes stuff in my closet.  It’s more than our monthly allotment, and has been carefully collected for some time now.  There was a time, after our insurance-holder (a.k.a. my husband) was laid off, when we relied on a similar stockpile to get us through lean times.  That, and the story below, are the the reasons I don’t think I qualify to star in the pilot episode of “Diabetes Hoarders.”  Not anymore, at least.

About 2  years ago, we were reorganizing my daughter’s room and found a box containing hundreds of syringes under her bed.   Apparently since we had moved into that particular home when she was 4, my daughter and her friends survived countless playdates despite this potential hazard.  She’d been using a pump for years.  What should we do with these?

A few minutes with my friendly search engine turned up a fabulous solution: non-profit organization  Insulin For Life.  We boxed up most of the syringes (saving a couple of bags for pump-failure emergencies), as well as some glucometers, and lancets for an old meter we didn’t use, and shipped them off. 

Insulin For Life has two major missions.  One is to provide diabetes supplies to children in developing countries who would otherwise have no access to them, and would therefore potentially die of diabetes.  The second mission is to provide diabetes supplies to those who need them after disaster strikes.  After Hurricane Katrina, for example, people evacuated their homes, leaving most, if not all of their supplies behind them, never to be seen again.  Insulin For Life was able to provide them with all of that stuff they left behind in their closets, refrigerators and drawers, to keep them going until they found another way to re-supply themselves.

We’ll continue to thin out our supplies to send to this organization and ones like it.   It keeps our closet from overflowing, and our play-spaces safe for small children.   Mostly, though, I can’t imagine being a parent to a child who relies on the kindness of others in order to get the insulin needed to stay alive.  I’m glad we are able to help in our own small way.

The Closet

The Closet

When we were house hunting last year, there were many features we wanted in a home.  A nice neighborhood was important to us.  Move-in condition was key.  A fireplace was attractive, particularly to my daughter who realized that, for the first time in her life, Santa would be able to enter her house in the traditional manner.  When we toured our current home, it quickly felt right for us.

When we got to the finished room in the basement, and I saw the closet, I was sold.  It was huge, and it had shelves!  Diabetes could have its very own space in this house.

Diabetes brings many challenges to a household, some of them much uglier than the need for closet space.  But the “stuff factor” is very real, and can become overwhelming.  To help you understand, I’ve taken inventory of the closet:

·         12 boxes of test strips

·         15 boxes of lancets

·         3 spare glucometers in their cases

·         10 boxes each of infusion sets and cartridges for the pump

·         6 boxes of ketone test strips

·         6 bags of insulin syringes

·         Manual to the insulin pump

·         Software, cords and manual for insulin pump downloading

·         Manuals to at least 4 different glucometers

·         Guidebook we were given at diagnosis with several additional pamphlets tucked into it

·         3 travel sharps containers

·         3 vials of glucose tabs

·         4 packs of various batteries

·         3 dollar-store prizes for consecutive site changes without a meltdown

·         Oversized plastic shoe box with a sampling of everything above, packed for travel and emergencies

In our previous home, this stuff was scattered throughout the house, in plastic drawers in my daughter’s room, in the bathroom, in a giant shopping bag next to my bed, in the pantry, in the attic, and in the filing cabinet.  The organizer in me is very happy to have it all nicely stacked up in the closet, but there’s the added psychological benefit.  Diabetes isn‘t all over my house.  I know I can’t really get away from it, but I can put all of its stuff neatly in that closet.  And then I can shut the door.

Questions

People with diabetes get lots of questions, and if they’re little people with diabetes, so do their parents.  I like the questions, and much prefer them to potentially inaccurate assumptions.  Many questions become familiar after a while.

My favorite questions, though, are the uncommon ones.  Like, "Can I hold that for you?"  They’re the ones which take us off guard and challenge us not to spit out the first thing that comes to mind.  My favorite of all time occurred when my daughter was 4 years old.  She was wearing her insulin pump in a fanny-pack, with a clear plastic window which allows access to the pump’s buttons without taking it out of the case. 

We were on line at a museum.  The woman behind us caught my daughter’s eye.

“Is that a t.v. you have there?”

Honestly, the initial reaction from all of us was a blank stare.  None of us was holding anything.  What was this woman talking about? 

Then she pointed.  “There…on your back!”

My initial reaction was definitely to go with sarcasm.  “Yes.  She has a t.v. on her back.  And the wire you see there…that plugs it into the power outlet we’ve had installed on her hip.  She watches it with the eyes she has on her…”   Well, you get the point. 

But this, of course, is not what I said.  “No, actually it’s an insulin pump,” I said, “for diabetes.”  It was the stranger’s turn for a blank stare. 

“Oh,” she said.  As if this was a significantly less logical possibility.

 Questions help us educate.  They help de- stigmatize the disease.  They allow people to be less anxious around my child.  We will answer all questions as politely and completely as possible.  We will be glad you asked.

Sometimes, though, questions will continue to amuse us for years to come.  Those questions are our very favorites.  Thank you for asking!