Sweet Sixteen

Sixteen sweet things about the past sixteen years with T1D:

1. My daughter was diagnosed in time.

2. Christmas in a children's hospital is not an experience I'd wish on anyone and yet was magical in ways no other Christmas could be.

3. She and I both survived the toddler diabetes years.

4. We found other families with diabetes quickly.

5. We continue to have diabetes people in our lives: friendships we treasure both despite and because of their diabetes glue.

6. Ruby, the teddy bear with diabetes, lives with us and continues to be a fuzzy source of support.

7. A perfect and welcoming preschool was, essentially, in our backyard.

8. I found the diabetes online community; and then I got to start a blog and revisit my second grade goal of being a writer when I grew up.

9. The elementary school nurse was a treasure; and her diabetes care was great too.

10. Friends' parents invited my daughter over for playdates, however uncomfortable they may have been.

11.Lots of friends and family have gone out of their way (especially in those early pre-pump years) to loop us in on menu plans and eating schedules, making our visits easy.

12. Teachers have kept an extra eye out, no matter the other chaos in their classrooms.

13. Schools have found a way to make trips, special events and after-school activities work.

14. We've had amazing medical professionals on our team.

15. Math has always come easily for my daughter (and my math skills have greatly improved).

16. My daughter has grown into a responsible, self-confident and compassionate young woman.

Sixteen years ago today we had a tough day. There have been quite a few tough diabetes days every year since then. But, from time to time, it's worth counting our blessings.

Nurse Perks

Happy National Nurse's Week!

My daughter has, for over 10 years, almost always enjoyed going to the nurse's office.

The minutes she was late for lunch in elementary and middle school were hard, and she never enjoys being low or needing a site change. But there are upsides to those nurse visits:

There's often something interesting going on in the office. An overheard phone call to a parent who doesn't want to pick up a sick kid. Or a bizarre gym injury. Or an update on the current plague, be it flu or lice or a lingering cold.

There's a kind, interested adult there. When the office is quiet, there's conversation. Our school nurses have known more about my daughter than most of her teachers and even some of her friends. And vice-versa. While killing the time it takes for a low blood sugar to come up they talk about family, vacations, restaurants, afterschool activities and more.

Teachers and other staff stop by. My daughter has overheard, and often been included in, conversations amongst school staff. It's pretty interesting to hear the 'grown-ups' talk. Some nurse's offices are adjacent to the main office, providing yet another interesting source of conversation and information.

There's air conditioning. This is no small plus in September or June around here. On elementary school field day, or as an escape from the south-facing third floor middle school classroom, a low-ish blood sugar was a free ticket to relief.

I'm incredibly grateful for the nurses who've sat in those offices over the years. Being concerned about and dealing with my child's medical needs are line items in their job descriptions. The relationships they've built with her, and the extra kindnesses along the way have been above and beyond.

Thank you, this Nurse's Week, to all the school nurses who make their offices a safe, pleasant and even desirable place for their kids with diabetes.

The Sensor Order

I ordered Dexcom sensors at the beginning of December.

Two weeks later I got an email from Byram telling me that an order was shipping. Good news, I thought- the sensors would be here soon.

Early on a late December morning a box from Byram arrived on my doorstep. It seemed big for a three month supply of sensors.

That's because it wasn't. It was our quarterly, automatically refilled, shipment of pump supplies. I hadn't clicked on the email details, mistakenly thinking that we weren't due for any more pump supplies until January so assuming it could only be about the sensors.

I looked up my sensor order on Byram's online patient portal. 'Order in progress,' it said. But it seemed unusual to me that an order placed over 2 weeks ago would still be 'in progress.'

I called Byram and explained the situation to a representative who really seemed like he cared.

Side note: all of Byram's representatives really seem like they care and I'll be deeply disappointed if next year's new insurance company does not allow us to continue to do business with them.

'I see here it needed insurance authorization, but that should have happened quickly. Can you hold a moment while I look into this a little further?'

So I held.

'So it looks like, as I said, it needed insurance authorization, but it seems nobody followed up on the order. I've expedited the claim and it should be taken care of within an hour or two. And I've set the order up for free express overnight shipping because it was our mistake. Would it be alright if I call you back when it's taken care of?'

'Thank you so much, and yes- a call would be great.'

An hour or so later, the phone rang.

'It's been processed and headed out for shipping. You should have it tomorrow.'

I thanked him again, profusely.

So many things about diabetes are hard, and the grind of procuring supplies and insulin is often punishing. This interaction was anything but.

Endo Eclipse Day

A note: School has begun. A semblance of 'routine' is beginning to appear. The opportunity to dust off a couple of posts I began over the summer and never published has arrived. So, yes, you'll see a couple of stories here which might make you think you've time travelled. But eventually we'll be all caught up!

We were not in the 'path of totality,' but a partial eclipse is unusual too, so we were excited to experience it.

But there was a glitch. The peak of the eclipse in our area was expected around 2:45 and we had an endo appointment at 3. In a city a 30-45 minute drive from home. That ruled out the local library's eclipse event, and a few other cool viewing options. Instead, equipped with our homemade cereal box eclipse viewer, we arrived at our doctor's office building about 2:15.

Out on a busy city sidewalk, we watched the shadows in our cereal box slowly change. The light grew dimmer and weirder. Some people near us had eclipse glasses, some had viewers clearly made at the last minute out of office supply boxes. Some were taking pictures with their cell phones while debating whether it was safe to do so. There were a few familiar faces from the diabetes center, including our endo who was entering the building as we arrived. People from throughout the neighborhood and from all walks of life had seemingly abandoned their work to converge on the streets. While it certainly wasn't the viewing opportunity we would have chosen, watching it in a large and diverse sea of people was fascinating, fun and memorable.

"Doing some eclipse viewing, were we?" asked the doctor when we settled into his office chairs.

"Yup- why not?" I replied.

"Why not, indeed," he said.

We could have bailed on the eclipse viewing because of diabetes. Just like we could have bailed on countless other opportunities over the past 14 years. But we chose to find a way to make it work.

Why not?

In Other People's Hands

I met a woman the other day who was an occasional substitute nurse at the middle school.  While this was the first time we'd met, she knew my daughter well.  There are others like her.

I have sent my child to school, on field trips, to birthday parties, to marching band camp and more.  The older she gets, the more people we collect who've helped her with her diabetes care. Some I know well, some I've been introduced to, and some I've never met.

I wonder if the people in whose hands I've left her fully understand how I feel about them.

These people have taken my child's life in their hands. Maybe they don't realize that, or look at it that way. I certainly wasn't going to point it out in quite those terms to the preschool director who agreed to accept her into the program. Those weren't the words I used when I thanked the parents who invited her for her first sleepover. But these, and many more adults, have been aware that having my daughter in their class, in their home, or in their field trip group necessitated an extra level of responsibility and vigilance.

If taking on that level of responsibility wasn't enough, these people have, quite often, gone above and beyond what I would have expected. Parents have contacted the birthday party venue for carbohydrate counts on food. Teachers have requested to be glucagon trained for my child's safety. Chaperones have sat with her while she stopped to check her blood sugar. Guidance counselors have called about 504 accommodations I never would have considered. Nurses have called just to reassure me that everything was okay. I'm incredibly grateful for every one of these thoughtful acts.

Being the parent of a kid with diabetes is a huge job. Being a kid with diabetes is an endless challenge. We're incredibly grateful for the people who step in to ease the burden in whatever ways they can.

Handy

 

Each performer was assigned a number for the two-part high school musical auditions. There were dozens of kids auditioning, and the directors are new to the school so it wasn't just the freshmen they didn't know yet. They needed a system to track everyone.

 

For the singing auditions on the first afternoon, the kids could just hold onto their numbers and report them when they individually entered the audition room.

 

On day two, the audition involved learning a dance routine all together on the stage and then performing it in groups of 8. The numbers had to be attached to the performers. While some kids struggled with tape and others scavenged safety pins, my kid had a built in solution.

 

She fastened her number through the snap of her Dexcom case. It was visible at waist level throughout the audition and was still attached when she arrived home:

 

 

 

 

Love these once in a blue moon moments when having diabetes comes in handy.

 



Uni-solve

Tips and Tricks - Friday 5/20 Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I love this stuff.

We order it, of course, to remove the tape and its residue from my daughter's pump sites.  I love, of course, that it helps dissolve the adhesive and makes taking off pump site tape a little less painful than ripping off a stubborn Band-Aid.  But I love it for other reasons too.

There was a day, many many years ago, when I couldn't get the price-tag gunk off of a very nice piece of glassware I was giving as a gift.  Rubbing alcohol didn't work.  Neither did mineral oil.  What could I use?  Well, there was something in the site change supply box that seemed to remove stickers from my kid's body with amazing ease. One Uni-solve wipe and you would have never know that vase had ever had a price tag on it at all.

That was the beginning of a long love affair.  In addition to countless other price tags, Uni-solve has also removed

-temporary tattoos- even the stubborn ones- instantaneously. 

-a substance called 'spirit gum,' used to attach a beard when my daughter played a rabbi on stage.

-permanent marker from our windshield after a weekly beach pass was attached before the ink dried.

-adhesive leftovers from many other friends' and family members' hospital experiences.

-pine sap from fingers, feet and flip flops

-gum residue from shoes

Uni-solve is one of the happy little discoveries diabetes brought into our lives.  It's like having a secret weapon; a tool most people don't even know exists. With all the reasons diabetes makes us feel challenged and put-upon, this stuff is our little reward.

For more diabetes tips and tricks, click here!

Serving Size

Thanks, Peeps, for making my daughter laugh
when she counted her Easter treat carbs.



 

So Easy

 

 

There's nothing easy about living with diabetes. 

 

We live with a Mobius strip of a to-do list.

 

The required tasks involve varying degrees of difficulty and frustration.

 

So every time the pump battery needs to be changed, I smile.

 

Someone at Animas took the time to make this particular chore as easy as it could possibly be.

 

If only all of our electronic devices came with an almost life-sized pictograph complete with the type of battery printed on it. 

 

 

Not Just Any Bag

We've spent the past six months in search of this gorgeous bag. 

In fact, it really didn't have to be this gorgeous.  It mostly just had to be the right shape and size, and not ugly. 

Our previous bag, purchased at Target, had served at least 2 years of hard time and was on its last legs when it succumbed to a juice box explosion and had to be thrown away.  Turns out cosmetic bag fashions change quicker than you might think, and so we were unable to simply replace our trusty tote with the same model.  We've since made do with make-up bags we had on hand, but none were quite right.  We spent the summer looking in all sorts of stores, to no avail.

The bag had to be the right size, primarily.  Big enough to comfortably fit the meter, lancet, strips, glucose tabs, a juice box, smarties, a spare battery and whatever other odds and ends live at the bottom in case of emergency.  But not so big that it took up an entire purse leaving no room for the other necessities of life.  It also, per its primary user, my daughter, had to stay open at the top.  When unzipped it needed to comfortably fall open so that a blood sugar test could be done in it, like it was a little nest.  This was the feature of the aforementioned Target bag which we couldn't seem to replicate.  Most of the bags we looked at were stiff and wanted to stay closed at the zipper even if it was unzipped.

We'd about given up hope when we stopped in a little local gift shop, for an entirely different purpose, and there it was.  The new bag.  In several colors.  Was it Target priced?  Not even close.  Was it worth it?  Absolutely.

There's even room for the Dexcom receiver, a few dollars for emergency snacks, and lip gloss. 

It's perfect.

A Highlight Of My Week

I was disproportionately excited
to find this amazing bargain at my local
grocery store this week.
We now own an extraordinary number of juice boxes.

Wordless Wednesday: Airplane Tricks

A +50% basal rate was just the thing for last week's
5 hour airplane trip west. 
We did the same thing on the way home
and fought lows.  
I'll take a half success over none. 

Good News

Amazing

The good (actually amazing and incredibly awesome) news is that my daughter inserted her first infusion set this weekend.  All by herself.  She had promised our endocrinologist that she'd do one before the next appointment. So with only days to spare to keep that promise, she went for it on Saturday morning. She chose her thigh for its high visibility and ease of access.

The accomplishment is doubly impressive since not only had she never inserted her own site before, she'd never even seen it done.  All of her infusion sets, for the past 11 years, have been out of her field of vision.

She practiced first on Ruby, her bear with diabetes.  She'd inserted sites for Ruby before, but a long time ago. This was a great way to refresh her memory on the mechanics of the process:  where to set the inserter, where to squeeze, how to attach the tape, how to pull the inserter back out, how to finish attaching the tape. It's not hard, but it's a bunch of steps and the practice helped.

There was plenty of time between when she first rested the inserter on her leg and when she gathered up enough courage to go through with the process.  There were a few cries of "I can't!" The concern about doing it herself was accompanied by worry about whether it would feel different going into her leg than it did going into the usual spots.  But eventually, with Ruby tucked in a strangle-hold under one arm and constant verbal encouragement from me, she squeezed the trigger and in it went.  She grinned proudly, and said it hadn't hurt much.  She plugged the pump tubing into the new site, figured out how to arrange the tubing, and negotiated a fitting reward: a jumbo pack of tic tacs.

This was a significant step along the inevitable road to diabetes independence and one to be greatly celebrated.  Even if she doesn't do all of her own sites from this day forward, knowing she can do it is huge, both in terms of being able to be out and about without a parent, and in terms of a general sense of independence.

Unfortunately it wasn't all good news.  Check back in a day or two for the flip side....

Juice Epiphany

The Dexcom buzzed at 4 a.m.  Low. (!!!)  A fingerstick confirmed it: 60.

Still mostly asleep, I considered my usual routine of going down the hall to the kitchen, finding a sippy cup, measuring 4 ounces of orange juice, finding a straw and bringing it back to the sleepy child.

As I put the meter down, my hand grazed the junior-juice box it shares its case with.  I picked it up, stuck the straw in, and roused the low person.  I was back in bed in under 3 minutes.

What have we been thinking?

When she was littler, it took less than 4 ounces of juice to treat a low.  So we reserved juice boxes for their convenience to carry away from home, but usually ended up throwing away half or a quarter of every one. Knowing how many ounces of a juice box had been consumed was impossible when awake in the daylight, let alone at 2 a.m. in a dark bedroom.  But fast forward a few years and now, for most overnight lows, one juice box is just enough.

When she treats lows at home, during regular awake hours, she still goes for juice from a cup.  Orange juice and apple cider are rare treats.  Despite the circumstances, she's happy to enjoy them.  Yet at 4 a.m., she's not savoring the flavor.  She wants to snuggle back under the covers.

So it seems the juice box is the way to go at night. It requires no rummaging in the kitchen.  It requires no lights.  It's literally right at hand every time we check her blood sugar.

I wasn't sure if she'd noticed, but she did.  "I was trying to figure out why my juice was so warm last night- but I noticed you used the box from the meter case."

"Yeah- I decided it was easier than coming out to the kitchen."

"I liked it.  I can drink it faster when it's warm."

And everybody lived happily ever after.

The Juice-Related Benefits of the Discontinuation of Head Gear

My daughter has been wearing head gear to bed for almost a year.  Head gear works with braces to pull the teeth back with additional pressure.  For the uninitiated, Kit Kittredge has agreed to demonstrate the look with her own equipment:

Kit wants you to know that wearing head gear while playing volleyball is not recommended.

At yesterday's appointment my daughter was told she no longer needs to wear the head gear.  She'll switch instead to an unpleasant configuration of rubber bands, but overall this was good news.  The head gear was uncomfortable and significantly limited her side and stomach sleeping.  It was also unfashionable. So for those reasons alone, she's thrilled.

At 4:30 this morning, the Dexcom buzzed.  "LOW."  A finger stick confirmed 60-something, so I got the juice.  "Sweetie, you need some juice.  Sit up," I nudged.  It was gone in 4 sips.

"Wow.  That was easier!" she happily remarked as she snuggled back under the covers with a smile.

You see the head gear, with its attachments both inside and outside the mouth, made drinking a true challenge.  First she had to figure out how to slip the straw in her mouth around the metal. Then, four ounces of juice would take a good minute of noisy slurping to consume.  The process was interspersed with verbal encouragement from the parent and attempts to roll over and go back to sleep from the kid.

Whether she was awake longer after the previous juice drinking marathons, or last night from the excitement of being able to drink easily I can't say.

A Happy Surprise

My daughter came home from school with a gleam in her eye.  Something special had happened and she couldn't wait to tell me what it was.

"This is for you mom," she said before giving me a huge hug.

"It's from Mrs. Elementary School Nurse."

"She was at the middle school today?"

"Yeah...she was subbing!  Mrs. Middle School Nurse is still sick."

The grin was from ear to ear and I shared the excitement.  Mrs. Elementary School nurse holds a very special place in both of our hearts.  She semi-retired as my daughter finished third grade and they'd only seen each other once since then.

To every child at the school she was a competent, kind and gentle presence when they needed help. She'd often say, "For six hours a day, I'm like a mother to 200 children," and that's how she did her job.

To us, she was all of that and so much more.  To be like a mother to my child was a lot to ask, and it was a lot to trust someone else to do.

My daughter was the first child with diabetes Mrs. Elementary School Nurse had cared for.  She jumped right in, spending hours with me learning the details of what my child would need done in the nurse's office, and of what needed to be shared with the rest of the school's staff.  She listened well, asked lots of questions, and considered us a team coming up with the best plan together.  Probably most importantly to me, she had my phone number plastered all over the office (and quickly memorized) so that we could consult over any question or concern. She advocated for my daughter several times when I brought her stories of staff confusion over things like having enough time to eat lunch, or needing a buddy for a nurse's office trip. Over the years, we spoke regularly and got to know each other very well.

To my daughter, she truly became like family.  They made up songs about blood sugar checking.  They had oft-retold stories like the one about the time my daughter squeezed her finger and got blood on Mrs. Elementary School Nurse's white shirt.  They shared stories about their lives, families, and weekends.
When she left the elementary school, there were tears from all three of us.

There are so many stories of things going awry when school and diabetes get put together.  We've had a few of those ourselves.  So we'll be forever thankful that in those first terrifying years of elementary school we were blessed with an amazing nurse. Her competent care eased my mind every day.  The love with which she provided it added a special and lasting bond.

An Ode to String Bags

We started with a diaper bag

So many years ago.

Then there was a mommy tote

With toys and snacks to go.

Of late it's been my giant purse

To carry all the freight.

But really couldn't other folks

Help carry all the weight?

With a glance upon the closet shelf

A solution was at hand.

Forty seven string bags

Of every color and brand.

To ballgames, hikes and theme parks,

To museums and parties we'll go.

Taking our turns to carry the stuff

For the perpetual diabetes show.

Sippy Cups

Today's Diabetes Blog Week topic:  Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Want more tips?  Click here!

Despite our attempts to keep it on the QT, most of my daughter's friends know that despite being 12 years old she sometimes drinks out of a sippy cup:

The lids are long gone, replaced by fun straws.  The spill-proof aspect is no longer (usually) the important part.  We keep them around for the numbers down the side.  They allow us to measure how many ounces of juice she is drinking when she is low.

On the go and at school, it's Elmo or Clifford juice boxes all the way.  But my daughter really likes orange juice, so when she's low at home, that's her preference.  Enter the sippy cup.  We can measure varying amounts based on her blood sugar number right into the cup she'll drink it from.

It's strange to still have sippy cups around, and will be stranger still when she takes them to college with her, but measuring juice quickly and accurately is great when we're in hurry to bring that blood sugar up.

Dexi

Dexi became a part of our family a little over a month ago.

She's our new dexcom continuous glucose monitoring system's receiver.

Upon her arrival, my daughter named her.  And over the past month the creative team here has personified her.

New questions and phrases have become part of our household lexicon:

Where's Dexi?

What does Dexi say?

Dexi's confused. Dexi's number and blood sugar number are very different.

Dexi's lost. The transmission signal has been lost between sensor and receiver.

Dexi is eating pie. The warm-up time for a newly inserted sensor shows a pie graph.

Dexi is thirsty.  When she needs to be calibrated a blood drop image shows on the screen.

Dexi is really thirsty.  Sometimes she needs two calibration numbers and shows two drops.

Dexi's yelling at you.  High or low alarm.

Keep an eye on Dexi while you're sledding.  Similarly, eating party food, staying up late.

Is Dexi in your purse? Similarly, on your pants, in the kitchen or did we leave Dexi in the car?

Dexi slept through the night.  I love it when she does this!

Friends and family are initially confused.  Some think we've gotten a cat, or brought another child to the party.  While some of them probably go on to conclude we've lost our marbles, most are amused.

What matters most is that it amuses us, and makes it much more fun to talk about and use this new medical device.

Snippets

 What follows are a few recent every-day moments made possible by diabetes:

I received a voice mail from a diabetes supply company about a bill.  When I returned the call and stated I had not received an invoice for the bill in question, the representative responded by asking me for the invoice number about which I was calling.  This went on for about 3 rounds before we got any further.

I attracted significant attention at a social event by holding an enormous Costco-sized tin of cookies over my head to read the carbohydrate information printed, inconveniently, on the bottom.

My daughter supplied the words for a Mad Lib which described the demise of dinosaurs this way: "Scientists think a giant trophy fell from space, creating a nutty wave of insulin and dust which destroyed these magnificent creatures."  This was followed by a discussion of how the dinosaurs would have slowly all passed out from low blood sugars en route to their demise. Which raised questions regarding whether dinosaurs were naturally insulin-dependent in the first place.

Unisolve saved the day once again.  It's perfect for removing pine pitch from one's fingers.

Those moments when diabetes' presence can amuse, or even assist, are refreshing.