We Forgot

Scrolling through my facebook feed this morning, I ran across a mention of someone's 'diaversary.'  Which reminded me that yesterday was my daughter's.

Twelve years ago yesterday we were supposed to celebrate Christmas with my husband's family before traveling to my parents' for the holiday itself.  Instead, we found ourselves speeding to the emergency room at sunrise, taking a helicopter trip to the Children's Hospital by noon, and spending  the night in a hospital crib in the pediatric ICU.  We spent 6 days in the hospital, including Christmas.

Yesterday we celebrated Christmas at home, so that we may more easily travel to the other half of the family for the actual day.  So immersed were we in those preparations and festivities that the significance of the date never even crossed my mind.

It's an age-old question in the diabetes community: 'Do you celebrate your diaversary, and how?'  We've never celebrated, per se, but we usually talk about it.  We talk about the day's chain of events, which remains amazing all these years later.  We talk about the people who visited us, and reached out to us, while we were in the hospital.  We talk about how great Santa was to us that year.  We talk about the years that have passed since then and all the good things they've brought.  We've become more well informed.  Technology has improved.  We've benefited from the help of some great professionals.  My daughter has gone from a helpless baby to a kid who is an active participant in managing her diabetes.

Perhaps these conversations are a celebration of sorts.  By reminiscing, we're lifting up some positive things. We were strong enough to make it through that first day and week.  We were and continue to be surrounded by friends and family who care.  We've learned.  We've sought out and been helped by excellent endocrinology professionals.  My daughter is learning how to eventually take the reins as she continues to live with diabetes.

The season in which this milestone falls never allows much time to reflect- if we remember at all.  But better late than never, tonight at dinner I'll plan to reminisce about just a little bit of the past 12 years' journey.

Waste Not, Want Not

GOOD TO THE LAST DROP

We don't usually get down to the actual last drop, but this is what the pump screen looked like when my daughter got home from school yesterday.

When she started pumping (at 3), I put about 40 units in the cartridge with each site change.  We're up to 100 now and it looks like we need a little more.

Although maybe when Christmas cookie season has passed she'll be less likely to come home running on fumes.

Enough Already

Here's an abbreviated list of things I wish I never had to do again:

-Hear my alarm clock at 2 a.m.

-Receive a text that has only a blood sugar number in it.

-Answer a call from the nurse's office.

-Hear "I feel low."

-Do math before my first cup of coffee or in the midst of a party.

-Lug pounds of diabetes supplies through a museum or up a mountain.

-Worry whether my child is passed out somewhere.

-Explain type 1 diabetes.

-Argue with a pharmacist, insurance company representative or medical provider.

-Support my child through a disappointment or frustration diabetes has caused her. 

This parenting a child with diabetes job is intense and unrelenting. Being responsible for keeping another person alive,safe and healthy is a stressful job. It involves countless physical, mental and emotional tasks every day. I must also help with the math homework, do some laundry, make dinner and provide sufficient regular-people parenting support to a 13 year old.  In my spare time I should surely contribute to society in some productive way.  Then I need to get out to see the latest movies, read the big novels, exercise, and make time for the rest of my loved ones.

I've heard diabetes described as a juggling act among carbs, insulin, activity and multiple other factors, and it's a good  metaphor.  There are occasional days when this juggling act seems possible.

But then diabetes throws in a knife or a flaming torch and all those other balls must instantly lose my attention.

Seasonal Chaos

'Tis the season.  The busy one.  With the endless stream of places to be and people to see.  The one with the cookies and cider.  The one with distractions around every corner.

With the aforementioned cookies, cider and chaotic schedule, diabetes should really be getting more attention this time of year.  In a sense it does, with increased blood sugar checks and carb count research.

What we lose track of is the big picture stuff.  Does the basal rate or carb ratio need to be changed at dinner or has she been high after dinner every night because we spent the weekend eating leftover Thanksgiving pie for dessert?  How could we possibly do any kind of basal testing to see which we should change when there's leftover pie to eat for dessert?  If it seems something should be changed, can I manage to remember to do so when she and her pump are in the house with me or will I only think of it when she's at school or when we're together at a gathering at dinner time?  That's the current dilemma here.

Last week brought a night when it was tough to squeeze in just 10 minutes to do a site change.

Next week I need to remember to order the test strips.  It remains to be seen whether I can retain that in my memory bank (or even notice it among the items on the seasonally long to-do list) by then.

To a certain extent, I think letting the diabetes stuff sink a bit among the priorities is o.k. once in a while as long as it doesn't drop too far.  A little change of focus can do wonders for the mental health.

The trick in this season, which lasts over a month, is to bring it to the forefront again on a regular basis to address the troublesome spots.

So tonight, no pie.

WDD 2014: A Picture's Worth A Thousand Words

That's it.

One Of Us Is Happy To Be Home

To celebrate my daughter's 13th (ack!) birthday, we spent a long weekend in Washington D.C.

We stayed in a lovely downtown hotel.  We walked everywhere and once we got to our destinations, walked some more.  We toured the Capitol and visited countless monuments and statues including a trip to the top of the Washington Monument. We enjoyed a few Smithsonian museums and got pictures of the White House from every allowable angle.  Our only Metro train trip was to the National Zoo where Bau Bau, the baby panda was adorable.   We ate in a couple of incredible restaurants, and on the actual birthday we ordered room service breakfast as a very special treat. We had an amazing time.

Except...

She was low at the Library of Congress, the Jefferson Memorial, the National Archives, the panda exhibit, and on many street corners.  She was high, and drinking contraband water, in the Capitol building and at the top of the Washington Monument.  And here's a hint: don't eat a room service continental breakfast complete with a yummy cinnamon roll and then get in the car for several hours.  Your birthday morning will be spent in a haze of dexcom alarms, people handing you bottles of water, and highway rest stops.

I can't remember a vacation Diabetes hated more than this one.  The Dexcom graph looked like a never-ending roller coaster.  High right after breakfast.  Low by 10.  Creeping up by lunch, then high-ish by 2. Crashing by 4.  High after an incalculable restaurant dinner (with dessert!!!) but coming down alarmingly quickly during the walk back to the hotel.  Or the complete opposite, depending on the day.

Most frustrating was that we were actively trying to prevent these swings.  She checked often.  Dexi was a constant companion.  There were temp basals and calorie king app checks and taste tests of foods to judge their contents.  Yet we were left wondering if the end result would have been just the same if we'd put in much less work.

We kept going, with our usual 'diabetes isn't going to stop us' attitude and enjoyed the capitol to its fullest. My daughter was a trooper and despite feeling the effects of those highs and lows, kept enjoying everything she was seeing. The only thing I wish we hadn't seen so much of were the city's benches and stone walls.

Doopities

"Do my doopities?"

I still remember the first time my daughter asked this question.  She was very low.  She had some juice.  I breathed a sigh of relief.

Within a couple of months of being diagnosed with diabetes at the age of 13 months, my daughter had made up this word.  "Doopities" meant checking her blood sugar.  Nonsensical?  Absolutely.  But when it was time for food or bed, we'd say, "let's go check your blood sugar," and she'd say "doopities."

"Do my doopities?"  The first time she asked this out of the blue, she was maybe 24 months old.  She felt low.  She knew what she needed to do.  It was a bittersweet moment for sure.  Mostly, though, I was relieved.

From the day we brought her home after being diagnosed, we spent every waking moment watching her like a hawk.  Was she slowing down?  Were her eyes glazy?  Was she pale?  Why was she crying?  Was she lying in the grass because it was fun or because she didn't feel well?  Was it o.k. to let her play in the sandbox by herself 40 yards from where I was weeding the vegetable garden?

After this first request for 'doopities,' we were not, of course, home free.  She was 2. We watched her like a hawk for several more years.  We still usually picked up on lows before she did.  We still needed to be responsible for keeping her safe.  Yet at that moment, we turned a little bend which brought us all the way to where we are today.

Now that's she's 12, it's increasingly rare that I'm the one suggesting she check her blood sugar.  Once in a blue moon there will be excessive crying.  Those eyes still noticeably glaze over sometimes.  More often than not, though, she catches lows on her own.

But these days she just says, "I need to check my blood sugar."

Halloween: The After-Math

Why We're Not In The Cloud

Making mistakes and learning from them is, in my opinion, part of being 12.

When my daughter says, "I don't need to study for the quiz. We reviewed in class and I've got it," I say o.k. When she puts off a chore until the last minute, I don't nudge.  When she's upset by the results of these decisions, we talk about what happened and she learns from her mistakes.

When she came home the other day with a blood sugar of 282, we had this conversation:

"Didn't Dexi alarm?"

"Yeah, but I was only 200 and I was in art and my hands were all gross."

"O.k., but now it's over an hour later.  What could you have done differently?"

"Checked after I cleaned up."

"Yeah...you'd probably be lower by now if you'd corrected, right?"

"Yeah. I'll check sooner next time."

In this scenario, she made some decisions.  They weren't great ones.  But we talked about it, calmly, and I'll hope that the next decisions she makes in these circumstances are better.  Had I been watching that CGM graph on my mobile device in the hour before she got home*, I'm not sure I would have handled the conversation as calmly. I may not have seen the opportunity to let her take a lead in problem-solving for next time.  I would have spent that hour getting increasingly irritated that her blood sugar wasn't coming down, and probably would have texted her to test and correct as soon as she turned her phone back on after school.

In the scenario we've chosen, the numbers are hers to deal with in the moment they occur.  Then, help is available if she needs it.

She knows she can text or call me whenever she needs my help. The nurse is there all day at school, and my daughter doesn't hesitate to stop in her office.  The Dexcom receiver reaches our bedside tables so she can have the night off from responsibility.  But when she's at school or out with friends, it feels like it's time to let her flutter around outside the nest a bit. We watch carefully from a short distance ready to come to her rescue whenever needed. Once she's home we talk about any glitches that occurred and about what she could do differently next time. For her, this seems like a great way to learn all she'll need to know when those safety nets aren't around anymore.

If I had a kid who regularly ignored highs and lows I'd think differently.  If her Dexcom receiver didn't give us readings when she was in bed, I'd think differently.  If she was littler, I might even think differently. If at any time I feel she creeps over the line of 'learn by doing' to a place where her safety is compromised, I'll not hesitate to reconsider all of the technology available to us. Everybody's experience with diabetes is different and we all need to do what works for us at any given time.

For now, though, this is what works for us.

*If you're unfamiliar, an explanation of 2 CGM in the cloud technology options are here and here.  Essentially it enables the data from a continuous glucose monitor to be sent to a designated smartphone so that there is another set of eyes on the information.

Old School

The Dexcom sensor died on Thursday after a long and helpful life.  We took a day and a half off and put a new one in on Saturday.  This one showed a variety of timer and blood drop symbols much more often than it showed any actual numbers.  The actual numbers it did show were often up to a hundred points off.  After 24 hours of trying to settle itself in, the ominous 'sensor failed' message appeared on the screen at 6 p.m. Sunday.  We decided to wait another day or two to insert a new one.

So essentially, we've been without Dexi since Thursday morning.  Aside from a post burger and fries restaurant high on Saturday night, the numbers have looked pretty good.  Granted, for all I know, she's been spiking to 400 and then dropping down just in time for a finger stick.  But that seems unlikely.

What I do notice is this: we're doing things more thoughtfully and intuitively.  This has its pluses and minuses. Today I'm intrigued by the pluses since they seem so much more unlikely.

While those Dexcom arrows are often helpful, I just as often find them to be misleading.  If I wake up at 2 a.m. to a 189 with a diagonal down arrow, I'll roll over and go back to sleep.  If the alarm goes off on a Dexi-free night, I stumble to the bedside, sort through the blanket and stuffed bunny pile to find a hand, check her blood sugar and see 189 staring back at me, I'll correct it.  Correcting it is much more likely to be the right thing to do.

Without that graph and those arrows to guide me, I find myself considering more of all of the other information available to me before I make decisions.  I think more about insulin on board, what particular foods were consumed, what she's been up to for the past couple of hours, what the next couple of hours will hold, and what things looked like yesterday and the day before around this time.

She checks her blood sugar more without the Dexcom.  During a regular school day, this only means one or two more tests.  But on weekends we've come to rely on a quick glance at Dexi now and then, often only checking at mealtimes.  Waiting for alarms to sound prevents us from catching problems sooner than later.

I love the safety net aspects of the Dexcom. I've come to rely on its information as a major part of diabetes decision-making.  But it's intended to work in conjunction with all the other tools we already had in our toolbox.  This week has been a good reminder to continue to use all those skills we worked so hard to hone in the 11 years before Dexi appeared on the scene.  They're actually quite handy.

The Departure

The e-mail from the principal was an unpleasant surprise.  It informed us that "Mrs. Nurse You Have Now" will soon move on to a new opportunity and that "Mrs. Nurse You Don't Know" will be taking her place.

We've done this before.  In third grade, the "Best School Nurse Ever" retired. We spent 4th grade with a professional and well-meaning person who could never have filled her shoes no matter how hard she tried. At the end of that year, we met the middle school nurse and decided we really liked her, only to receive a letter in July saying that she'd been replaced.

It turned out that this new nurse, currently referred to as "Mrs. Nurse You Have Now" has been wonderful. We have specific expectations of a school nurse, and she's met them all:

First and foremost, of course, is to know what to do in a real emergency.  Know how to use glucagon. Be willing to shove a glob of glucose gel into my child's cheek if needed.  Know when she's low enough that she needs to sit in the office for a little while longer.

Train the staff.  Provide enough information to my child's teachers so that they know what to do when she is experiencing a high or low blood sugar. Make sure the lunchroom staff isn't going to interrogate her about taking her last 2 pretzels out to recess.

Trust us.  We will provide the physician's school forms every year.  Once they're in the folder, please listen to my child, and to me.  If we're having a week of low blood sugars, please let her shave a few tenths of a unit off of her lunch bolus.  If something bizarre happens with the pump, call me.  If she's 105 but still claims she feels low before gym, let her eat something.

Last, but of utmost importance, be cool.  My child has to spend an extraordinary amount of time in the nurse's office.  She's there every day at lunch.  She has to hang out there whenever she's low.  She needs good company.  She needs someone who will a tell her a funny story, who will ask what she did over the weekend, who might even offer a hug if she's having a tough day.

So we'll spend the next week on 2 projects.  We'll try to accelerate our progress on eliminating this fall's round of low blood sugars, so that my daughter doesn't get roped into providing a full-scale orientation to this new employee while spending hours on end in her office.  And we'll think up a lovely parting gift for "Mrs. Nurse You Have Now," to thank her for 2+ years of helping diabetes interfere as little as possible in my daughter's day but for being there-and being cool-when it did.

A Minor Miracle

AFTER Calibration!!!

Maybe once a month we get a perfect match between the glucometer reading and the dexcom.  It's always very exciting and everyone in the house is summoned to see it with their own eyes.

On occasion these matchy moments occur at the same time the dexcom needs to be calibrated.  In the past, every single time we've entered a meter number that matches the dexcom's number we've been left shaking our heads.  Without fail, Dexi will decide my daughter's blood sugar is not exactly the matchy number at all, but one just one or seventeen points in one direction or the other.  

For this and other reasons, Dexi's strong-mindedness has become a running joke in our family.  

This morning, I was summoned to view the breakfast numbers- which were a little higher than I'd like but did indeed match.  I then stayed to watch as the dexcom calibration took place, waiting to see what whimsical number Dexi would decide was the real one.  

"Mom...look...she actually agreed!"

"Wow...maybe she's mellowing out."

Probably she's just thinking up some other way to torture us later on.

A Near Miss With Auto-Correct

*She'd been low ALL DAY, hence the advice not to bolus when she was 80.  As per usual: not medical advice.  It worked, though.

Not a Full Moon

As we pulled out of the parking lot and headed towards home, I turned to my daughter and asked, "Is it a full moon?"

"I don't think it's even close, but wow."

This week's endo day was full of chaos.

The traffic on the way in was full of terrible drivers making bizarre decisions.

As we turned into the parking lot, I let out a sigh of relief.  "Finally someone will take this car away from me for a little while." That was before the valet attendant nearly ran over my daughter as she tried to enter the building.

The bustle was evident as soon as we entered the clinic doors. Phones were ringing.  There were several patients waiting at the front desk.  Staff were scurrying around.  We took the last available waiting room seats and waited to be called for the traditional first step of height, weight, A1C and meter downloading. We were half an hour early for our 4:00 appointment, so expected to sit a little while.  A big dent had been made in homework when at 4:10, our endocrinologist himself came around the corner.  "Do they know you're here?" he asked.

"Yeah...I mean we checked in..."

He disappeared into the height, weight, etc. room and seconds later my daughter's name was called.

He took us into his office before her pump had finished downloading and started with the preliminary conversation. Soon the pump and its information had been delivered.  "So we were talking about lows, but I'm seeing a lot of high numbers here in the evenings."

Indeed, the week we were viewing had some awful looking 270's and 300-somethings.  Which didn't sound familiar at all.  Knowing that sometimes they print out a week or two back, I glanced over at the date.  "This says it's from August."  (Vacation week to be exact.)

On we went like that, with the doctor needing to take my daughter's pump in hand to accurately see and discuss the current basals, total daily dose, correction factors, and insulin to carb ratios.  We used the downloaded Dexcom graph to discuss some potential treatment changes. We came away with a few suggestions for dealing with the recent school lows, and a minor tweak for afternoon.  But it was hard to see the direct impact of insulin doses on blood sugars without the pump download. We never received the A1C results.  They'll let us know.  Maybe, I guess.

This is a top-notch clinic, with which we've always been happy.  I'm sure there's a good explanation for whatever trouble the medical assistants were having. There was at least one unfamiliar face in the back room, either new or subbing.  I overheard at least one other conversation about difficulty downloading data.  I'm pretty sure the whole thing was a fluke.  It would just make more sense if I could blame a full moon.

Um...Yuck?

"The granola is 10, the blueberries are about 5.  That was the new brand of soy yogurt.  How many carbs were in the container?"

As I turned around from giving the smoothie one last whirl, I found my daughter elbow deep in the kitchen trash.  Holding the yogurt cup delicately with 2 fingers, she said, "27" before dropping it back in and turning to wash her hands.

It wasn't the first time this scene has played out here.  Generally, though, I'm the dedicated trash picker. What particularly struck me about yesterday's episode was my child's nonchalance about diving in herself.

Add it to the long list of peculiarly unpleasant things we do for diabetes' sake.

We pick the trash.

Missing Class

Low blood sugars have been frequent around here lately.  My daughter seems to go through a streak of them every fall, but the implications are getting harder to manage.  Missing class time in 7th grade is much different than it is in 3rd.

Our current in-school low blood sugar protocol is this:  She checks in the classroom to confirm she's low and is escorted to the nurse by a classmate.  She has a juice box and waits 10 minutes.  She rechecks and if she's back in range she heads back to class. Usually, one juice box perks her back up, but she's had a few 2 box lows lately.

Nobody's comfortable with her wandering back up to class at 53, hoping that second juice will kick in. So there she sits with the nurse.  The nurse, as we all know, is lovely.  But she's not accredited to teach geometry, or geography, or grammar.

So when 4:00 homework time rolls around, I'm called upon for help.  I'm able to help with English. Geography is easy enough with the textbook at hand, and it's interesting.  Geometry?  Forget it.  Helping with math homework consists of me sitting near her, muttering encouraging words while she reads the textbook out loud until she figures it out.

Fortunately she's a smart kid, and can catch up pretty quickly.  But it's frustrating for both of us.  The question is, can we make it so she doesn't have to?

Obviously we're tackling the low blood sugar issue.  No matter when they happen, sticky low blood sugars shouldn't happen on a regular basis.  Adjustments are underway.

But I'm also wondering about our low-at-school game plan.  What could we do so that she misses less class time when this does happen?

As usual, sitting here writing has brought ideas to mind, some of them pretty obvious.  Like when she tests in class and she's 58, she should drink the juice she has with her on her way to the nurse, not wait until she gets there.  And maybe we need to talk with the nurse about whether any lows could be treated by my daughter in the classroom.  For her, some lows are very functional lows at which she can drink juice and keep doing what she's doing.  During others, she feels much safer taking a time-out in the company of a caregiver.  How to quantify or describe this on a 504 plan, I'm not sure.

Any other ideas or suggestions which will keep me from (re?)learning more geometry or algebra are most welcome.

Cereal Lows???

Here's a sentence you won't read often:

Twice in a the span of a week, my daughter has ended up in the nurse's office with a low blood sugar and I think it's because of her breakfast cereal.

You see, breakfast cereals are notorious for causing high blood sugars, not low.  Also, blood sugar tends to spike in the morning, making any breakfast carbs harder to cover with enough insulin.  So I'd say these may be the first 2 times in 7+ years of school my daughter has ended up in the nurse's office low before 10 a.m.

Our tactic for combating  post-breakfast highs has worked well of late.  A few years ago, a registered dietitian at our clinic suggested trying cereals with 5 or more grams of fiber per serving, which would slow the digestion of the cereal and thereby even out the spike.  Occasional experiments with old favorites like Cheerios and Kix prove that the extra fiber in the new choices really does help.

In her quest to reduce breakfast boredom, my daughter spotted a new cereal in what might be referred to as the 'healthy' aisle of our grocery store.  We enjoy other cereals of the same brand, so we picked up a box.

This cereal has 6 grams of fiber per serving, the same as several others my daughter eats.  The serving size, and the number of carbs per serving are comparable. The same almond milk is added.  The first time she ate it she needed 2 juices to get her back to class.

Several days of her usual breakfast foods and standard post-breakfast blood sugar results went by, and then she tried again.

Despite mediocre reviews the first time around of both flavor and chew-a-bility with braces, she had a bowl of the new many-grained flakes this morning.  Already suspicious of last week's low, we subtracted a handful of carbs from the total per serving, and she ate 3 slices of my peach which we never covered.  Again she ended up with the nurse and a blood sugar of 58.

I guess if she really loved this cereal, I'd put on my scientist cap and try to figure out what was going on here. Instead, I'll finish the box (which will require lots of peach slices for flavor) and we'll move on.

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.

Back to School

For the first time, diabetes wasn't a big back to school issue here.

All of the forms from the endocrinologist were filled out, signed and turned in to the nurse in June.

There were no treatment or equipment changes over the summer to educate the school staff about.

We packed up the bag of supplies and checked it twice.

It's been our tradition to drop off the supplies a day or two before school starts.  This visit has always included at least a quick check-in with the nurse and until 6th grade with teachers as well.  We go over any changes from the previous year and answer any questions.

This year we had only one free morning during the two days when staff were in the building for meetings and setting up. We learned the nurse might not be available when we arrived.  She was not.  We left the well-labeled bag in the office. We missed saying 'hello' and exchanging pleasantries about the summer.  Otherwise we had no concerns about not meeting face to face.

The nurse has not yet needed to call home.

Reports are good about lunch.  She's sitting with friends of her choice, and she's finishing in time to go outside with everyone else.

There have been no classroom-related diabetes concerns.

This appears to be a non-story until it's put in perspective.

Seven years ago this same girl started Kindergarten.  The preparation was extensive. We spent hours in the nurse's office reviewing every detail of the care she needed.  We met with every teacher who would come in contact with my daughter.  The nurse, my daughter and I took turns quelling each other's anxieties.  My daughter was tiny and needed help with every aspect of her care.  She needed staff to watch for signs of low blood sugars, and to make sure she was eating all of her food, and that she wasn't accepting food from others.  The other elementary school years were progressively easier, but we still had an annual meeting with the primary teacher and the nurse.

Two years ago we spent time settling in to the middle school.  There was a new nurse.  My daughter encountered a minimum of seven teachers every day.  There was a new lunchroom to navigate and a new schedule to adapt to.  It took time and energy develop a good diabetes routine and a good working relationship with the new set of staff.  Last year was certainly simpler, but a few things had changed and we spent a little time in the health office making sure we were on the same page.

It's amazing to look back and realize how much my daughter has learned to do for herself in the past seven years. She needs significantly less hands-on help from the school nurse or her teachers. It's reassuring to see how our hard work building relationships with and communicating with the schools has paid off.  We have a thorough 504 plan, an excellent nurse, and a staff who has been well-educated by that nurse.

We don't know what next year will bring; and I'm sure the high school transition will bring its own collection of tasks and challenges.  Right now, I'm just going to be grateful that this year's start was easy.

Wordless Wednesday: Fridge Edition

I noticed today this mystery label carefully magneted to the refrigerator. It's been there for months I'm sure.

Weird

All day: confusion.

Check: 115.  Dexi:  250.

Check:  287.  Dexi:  140.

Lots of  'Recheck...that doesn't make sense.'

And 'Really...that's what it says.'

All day.

It probably didn't help that we left Dexi home for an errand outing.  Or that we went to the pool.  She finds that very confusing. Always.

Yet from dawn to dusk, nobody could agree.

Beditme was the most bewildering.

Check:  270.  Dexi:  240.  We thought there had finally been a meeting of the minds.  A small correction was given and some reading began.

Fifteen minutes later, Dexi asked for more blood.

Check:  138.  Dexi:  still 240.  I thought we were in for a long night for sure.

But by 10, the anticipated low had not occurred and did not occur all night.  Dexi and the meter had kissed and made up.  Today, they were all in synch...like they'd been together forever.

Technology is great.  We really love it and are grateful for all the help it gives us in managing diabetes every day.  But please visit www.stripsafely.com.  Sometimes things to awry.  They shouldn't.

Dexi's Vacation

Dexi survived the first few salt water laden days of our vacation.  Initially, we were checking and reinforcing tape regularly.  They we got sidetracked by swimming and beach walking.  As we prepared for the outdoor shower after a long beach day, she was discovered to be slightly dislodged.  A delicate operation to attempt to resuscitate her failed and she was removed.

Our deal when we first started the Dexcom was that breaks were o.k.  The request was to take one at this point, so we did.  I must say there were plusses.

It was hard enough to remember the meter kit every time we left the cottage.  The constant transferring of the meter and other necessities between my purse, a small string bag and the beach bag was challenge enough. The Dexcom receiver would have been just one more thing to track down - or forget.

While the alarming is, of course, helpful to alert us to high blood sugars, there were a few frozen treats and fried seafood meals I'm glad Dexi never became aware of.   We didn't ignore the highs - we tested and corrected regularly.  But there's at least one night I'm sure Dexi would have ended up sleeping in the car so she didn't keep us up all night.

Wearing the sensor in the ocean makes me just a smidge nervous.  No- it's never fallen completely off, and I don't expect it will.   But were it to do so, I'm certain we'd never see it again.  It would turn into a mysterious item for someone's beachcombing bucket some day.

I think my daughter was happy to have her belly free.  It felt nice to swim and boogie board and dig around in the sand without a protrusion.  Also, nobody was looking at it or asking questions about it. The tankinis cover it when she's standing still, but it becomes exposed with movement, and certainly when the bathing suit ruffles float up in the water.  The pump site is invisible under her suit, and when she's walking or playing, she wears terry cloth shorts with big pockets to put the pump in.  She's willing to answer questions - but a vacation from doing so is nice too.

Dexi's back up and running, and alarming, and being forgotten when we go to the library.  We missed her information, and are finding her graphs helpful as we transition from an active vacation to a quiet week at home. There was no objection to starting her up again, and my daughter's glad to have her around on days like today when she's at the pool with a friend.

But the break wasn't bad.

"Weird Al" Yankovic - Pancreas

A You-Tube find for a little light summer fun:

None. Nada. Nil.

Half of a basement closet  is dedicated to diabetes supplies. The usual suspects are there, unpacked from the three month supply boxes which arrive on our doorstep: pump supplies, dexcom sets, lancets, and strips. There's a large collection of manuals to diabetes devices and booklets given to us by various diabetes care providers. This is where we keep our collection of spare lancets, meters, tapes, and samples of stuff we are reluctant to throw out.

Until recently I have been the primary user of the closet. Supplies were put in and taken out only by me. Times are changing for the better, with a kid who is happily taking on a little more independence with a few things diabetes.  One task she's taken on has been replenishing the supplies in her room, including lancets and test strips.

Here's where the cautionary part of the tale begins:

Happy that she was regularly ferrying the test strips from the basement, I neglected to keep up with the inventory. So yesterday as I started to pack the diabetes box for vacation I made an alarming discovery. There were no boxes of test strips in the closet. None. Nada. Nil. 

We weren't OUT out. There were two vials in her room and some other partial vials in spare meters. I immediately ordered more and am extremely hopeful the box will arrive on our doorstep before we travel. If it does not, it's possible to purchase them over the counter.  Just incredibly expensive.

A two part solution has been put into place to address this issue.  I've put a note on my calendar and a reminder in my phone to reorder at the next possible interval. I can no longer rely on noticing the supply is running low before I make that call.  Secondly, while attempting to support the responsibility and helpfulness of my daughter's new role as the designated strip fetcher, I've emphasized the importance of also being the designated strip inventory-er.

I'm ordinarily a bit of a supply hoarder.  I feel much more comfortable with stuff stashed away, 'just in case.' In my mind, this 'just in case' has meant an insurance mix-up, a financial glitch, or a job transition. Now I know - it could come in handy for something as simple as packing for vacation.

Dexi's Wordless Wednesday

Helpful Hint:

The Dexcom ceases to be useful if you pack it in your mother's purse instead of your own before leaving for the day.

Time Suck

A sampling of annoying events from the past few summer days:

I received a lunchtime phone call from the beloved nurse-free music program.  "I'm 72.  How should I bolus?"  The question took several minutes to sort out.

While at the pool, she had to stop to disconnect or reconnect her pump while her friends were already running for the diving boards/ping-pong table/snack bar.  This scene repeats several times daily.

She had to leave her friends in the pool to treat a low blood sugar.

We delayed leaving for the pool to replace the tape on the Dexcom.

We delayed leaving for music to add tape to the Dexcom.

I spent half an hour online searching for tips to keep the Dexcom stuck when frequently submerged in a swimming pool, lake or ocean.  (Suggestions are still welcome...).

We expected to do a quick site change, only to find that the pump battery needed to be replaced and the supply of wipes needed to be replenished from the downstairs closet.

A desire for a summer peach turned into an ordeal involving the food scale and the calorie king app since it was the first peach of the season and we couldn't remember the carbs.

A group of friends descended on the kitchen for a snack break.  She was the last to eat, as usual, since she had to stop to check her blood sugar, read the nutrition label, and bolus for her food.

A cure and/or a bionic pancreas will some day dramatically improve my daughter's health.  That, in the big picture, is the reason we want these things.

The other benefits are indisputable though.  When the day comes, we'll go through every day without any of these kinds of stops and detours.  She'll stop being the one lagging behind at the pool.  She'll dive into her friend's pantry right along with everyone else.  Diabetes won't delay the fun.  We can't wait.

Geocaching

My husband and daughter have taken up a new hobby.  Geocaching is described in detail in this link, but essentially, it's a treasure hunt using GPS coordinates.  People hide 'caches' in public places.  Then they post GPS coordinates and additional clues on the website linked above.

So far our family has found about 40 caches in 4 different states.  I'm not so much a fan of the scrounging around in bushes and under park benches part of the whole thing, but it's been a great excuse for visiting nearby parks, hiking trails, historical sites, and even extra rest stops when we're on the road.

After having found a good amount of caches and getting the hang of the GPS app and how the website works, my husband decided it was time to create our own cache.  We needed a small, waterproof container in which to place a scroll for people to sign when they found the cache.  We had just the thing. A little camouflage duct tape to make it a little harder to find and it was ready to go:

People who hide caches often offer a prize or a special shout-out to the first person to find their cache.  My husband went a different direction.  Included in the clue is this line:

The first person to identify this container will earn a special place in our hearts.

Best Advice

In the past 11 + years of diabetes, we've been given all sorts of advice about my daughter's health and care. Advice has come at all stages, from all sorts of people. At this week's endocrinology appointment, I was reminded of a piece of advice which falls at the top of my list of favorites.

Looking like perhaps he'd just been through a challenging appointment or two, the endocrinologist sat down at his desk, glanced at the dexcom printout and the A1C slip and said, "Ahhh...this should be easy."

"It should?"

"This A1C is very nice.  And these graphs look pretty good too."  He shared the A1C and discussed it with my daughter.  Then he asked us, "Do you know how you did this?"

"Um...not really.  If I did, I think I could make a fortune," I replied as my daughter merely shook her head.

"Well I do.  Look at this printout here.  This part of the graph is the overnights."

Ah, yes.  The advice we received years ago from our first (and favorite) diabetes educator:

If you can stay in range overnight and wake up near your target number, everything else will fall in place.

Being in range overnight takes care of 10 hours of the day right off the bat. Then, if she wakes up at 100-ish instead of 180-ish, the breakfast spike is less significant and the lunch number is better too.  All those other spikes from the miscalculation of carbs or the crummy site become blips on the screen rather than compounding factors for an already high average.

If, the uninitiated or the overachiever might ask, this overnight thing is the key to success, why don't we just keep her numbers in range overnight all the time?  I wish we could, but as the old pro and the realist know, stuff happens.  In this case, growing happens and hormones happen.  Every so often things slowly get out of whack, particularly in a growing kid.  The 5 a.m.creep up begins.  Or the 2 a.m. correction comes into play.  The evening carb ratio no longer quite does the trick.  Sometimes, all of these things seem to happen at once.

At our winter endo appointment, my daughter's A1C was 3/4 of a point higher than it was last week.  We spent a good part of that appointment addressing high numbers at 10, 2, and 6 a.m. It felt like the whole night had gone haywire all at once and like untangling those numbers would be like untangling the Christmas lights: a task best left to somebody else. We gladly accepted the help.

As winter turned to spring, we continued to tweak basal rates and the evening carb ratio. Problems crept up one at a time and we apparently managed to keep things under control. Can we keep it up all summer?  I don't know.  I do know that I should pay close attention and call in professional reinforcements if I need to, because:

If she can stay in range overnight and wake up near her target number, everything else does, indeed, fall into place.

A Teaching Moment

We visited the endocrinologist this week.  As he glanced at my daughter's A1C slip, he was pleased with what he saw.  "This is what I'd call a good A1C."  Then, turning to my daughter, "Do you know what kind of number a good A1C would be?"

"Ummmm..."

The omnipresent chart was on the shelf to her left.  She looked it over.  "6?"

"Six would be very impressive.  Five would be amazing.  But in people with diabetes, particularly kids, five would be almost impossible without some really nasty lows.  What we aim for in kids your age is an A1C around seven, and you've done that very well."

There was much to appreciate about this little exchange.  The teaching. The relationship building.  The gentle passing of the torch of responsibility for understanding the disease to my daughter.  The affirmation of our hard work which, I know from experience, would have happened no matter what number showed up on that A1C slip.

We don't go to the closest pediatric endocrinologist.  Our visits require a sometimes hairy, sometimes traffic-ridden journey.  When we arrive, we look like we're planning to camp out for the duration, with snacks, homework and books in addition to the usual diabetes baggage and the materials we need for the appointment.  Despite these hassles, we never think twice about repeating this expedition.

I hear horror stories all the time about people's relationships with their doctors.  I realize we're fortunate to live in a part of the country with lots of choices, and that we're fortunate to have insurance which allows us to make them.  Some people have neither.  But if you do, and you're not happy, find a great doctor.  It's so very worth it.

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.

All Out

Last week was a hectic one.  After returning Monday from an extra-long weekend with family on my husband's side, I got right back into the business of helping my dad pack up his house.  He moved from house to condo on Friday. 

In the midst of the packing and moving, unpacking and organizing, there was still school and homework, piano and volleyball, the orthodontist and a weird fast-moving stomach bug, plus a Friday night school social. It was a fast-paced week.

My dad's new little dining set was delivered at 11 on Saturday morning, completing the string of deliveries and installations. My husband, daughter and I were there helping unpack boxes and screw in paper towel dispensers.  We'd brought sandwich stuff with us and by noon we decided to christen the new table. Happily ready for lunch, my daughter entered her carbs into her pump, scrolled up to a dose, and hit 'go.'

Fur Elise played merrily from the pump.  "No delivery.  Pump is busy."  (Which I've always thought was a weird phrase to program it to say...busy doing what, exactly?)

In this case, it was busy preparing to tell us the bad news:  "Empty Cartridge.  No delivery." Oh. Oops. In retrospect she remembered the low cartridge alarm going off overnight but didn't think of it again in the morning.  In retrospect I remembered thinking when I changed the site Tuesday night that if Friday was as chaotic as I imagined it would be we might have to put off site change until first thing Saturday morning before we went to help unpack.  That was the last I thought of it.

Fortunately, Dad's condo is only three and a half miles from our house.  My husband was kind enough to make the insulin run and within half an hour, my daughter was eating lunch.

We had a good run.  This is the first time my daughter has run out of insulin since she stopped making her own in 2002.  But as summer day-trip season approaches, it led me to re-evaluate what we carry with us when we're out.  For a trip within a few miles, like this one, I'll probably still not bother carrying insulin, but we've gotten lazy about bringing it with us when we're headed places farther afield for the day.  What if we'd been an hour away at the beach or at a museum?  This could have ruined a whole day, rather than just delaying a much needed lunch.  

So I've ordered a Frio insulin cooling case to add to the collection of things we bring when we go out.

Choose your closing saying below:

All's well that ends well.  Live and learn.  Better safe than sorry.  Be prepared.

Armed (and Dangerous?)

The birthday party challenges keep coming this spring.  The latest was an invitation to a celebration at a restaurant serving a buffet brunch.  Mulling it over, I shared the invite with my daughter, offering her an alternative option. If she didn't want to manage the diabetes aspects of a buffet brunch alone, she could join the group after brunch for the pool party which would round out the afternoon.

"I really think I can do it!" was the overwhelmingly self-confident response.

What could I say?

What was the worst that could happen?

How would we ever get to an overnight road trip with friends without first allowing smaller steps like this one?

So she went to a very nice restaurant with beautiful water views to have brunch with a few of her friends and two brave parents.  Armed with her pump, dexcom, cell phone and calorie king app, she was otherwise on her own.

After a two mimosa brunch of my own and a comforting mid-afternoon ice cream stand stop, I picked her up at the pool at 5:45.  She was smiling from ear to ear and recounted in great detail all of the food she'd enjoyed.  She loved the restaurant, being with her friends, and playing volleyball at the pool.

Diabetes-wise? The Dexcom graph included dots on almost every level of its screen.  By 6 it just read 'high,' and stayed that way for over an hour despite two major corrections. The meter's remote showed that over 100 grams of carbs had been bolused for at brunch, and that corrections had been given at 2 and 4 for numbers in the 150-200 range.  She had unplugged the pump twice to swim but not for long since the water was "freezing."

As far as I can tell, she did all that she could, and I made sure she understood that.  A discussion of the desserts she sampled leads me to believe she under-calculated their carbs but since miniature pastries aren't on our regular menu, she was forced to guess.  The real problems didn't start until almost 4 hours after brunch, probably when the fat from the {still unclear to me number of} pieces of bacon she ate met the 105 + brunch carbs and the handful of pretzels she bolused for at the pool.  Truth is, she could easily have hit 400 whether I was with her or not.  Buffets are hard.  Mystery foods are hard.  Add into the mix frigid pool water which tends to spike her, unplugging to swim, and a healthy amount of excitement, and the results are not entirely unexpected.

All we can do is try to learn from the experience.  Mini pastries have more carbs than expected and should be consumed in limited quantities.  Balancing high carb and fatty foods from the buffet with a few lighter options might mitigate disastrous blood sugar results.  Following a heavy meal with an adrenaline-producing dip in ice water while the pump is unplugged shouldn't be a regular occurance.

You may think it was dangerous to send a 12 year old with diabetes to navigate a buffet brunch.  Perhaps a little bit.  But really, on some level, it's dangerous to send a 12 year old with diabetes anywhere.  The best I can do is to arm her with the tools and knowledge she needs to take care of herself, and with confidence. Despite the results, this was definitely a confidence-building experience.  For both of us.

Thank You!

Last one: As we wrap up another Diabetes Blog Week, let's share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or a comment left on your blog that made you smile.  Anything you liked is worth sharing! 

One highlight of D Blog Week for me was getting comments on my posts.

I love writing a post or two every week.  It's a good way to put the whole experience of caring for my daughter's diabetes in perspective for myself.  It helps me think through the particular issues we face, and to process emotions about them.  That's enough, and for just that I'd keep writing.

But I always hope someone is reading.  I hope someone is finding something to identify with, or something that will help.  Maybe my story will make someone laugh or, if needed, cry.  Maybe it will make a couple of people realize they're not alone.

I get scattered comments here and there, but the feedback this past week has been great. To all of you who commented on my, or anyone else's blog, thanks.  It's fun to know you're reading and thinking, and that you enjoyed the words you read!

While D Blog Week has been a particularly busy one for me,  I promise to return the favor slowly but surely over the next couple of weeks!

Saturday Snapshot

We're in the process of cleaning out a house my grandparents had built in 1956.  My parents moved there in 1990.  My daughter was born in 2001 and diagnosed with diabetes in 2002.  We've all spent plenty of time in this family home.

This lancet was at the bottom of a hall closet, under a variety of other items, surrounded by a few years of dust.

Diabetes is as much a part of our family's historical fabric as my grandfather's tool box, which was next to it on the floor of this closet.

Want to see more picture-based posts for diabetes blog week?  Click here for the link list!

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.

A Note From Dexi

Today's post is for the 'tell me a story' wildcard category for diabetes blog week. Write a short story personifying a diabetes tool you use on a daily basis.  A meter, syringe, pump, pill, etc.  Give it a personality and a name and let it speak through you.  What would it be happy about, upset about, mad about?  More stories from your favorite diabetes tools can be found here!

Hello There!

My name is Dexi.  I'm a 'continuous glucose monitoring system.'  Sounds boring, but I'm really terrific!

I'm a big help around here.  I keep track of the girl's blood sugar all the time and map it out on a graph for the people to look at.  They can ask me for a number anytime and I gladly share what I know.  If the numbers aren't so good - like they're too high or too low, I vibrate and sometimes I even beep.  This, they tell me, helps keep the girl safe and healthy.  I'm very important.

At first the people were really interested in every little thing I told them.  They pushed my buttons all the time, and exclaimed about my usefulness and said things like, 'what did we do before we got this?'

Now I don't get as much attention as I used to.  Sometimes, like after we've gone out to dinner, or if the girl is sleeping in a different bed, I get looked at a lot.  Usually, though, I get left in a bag or on the table for most of the day and night.  It's boring and I don't like it.

So, well...can you keep a secret?  Really...you can't tell them, o.k.?

O.k.?  O.k.

Here's the thing.  The other night I did something just to get attention.

It had been a few nights since anyone had paid any attention to me at all once it was dark out.  It's really boring sitting on that bedside table all night by myself, keeping track of boring numbers. My alarmer was getting out of practice.  So I alarmed.

"LOW!"  "Under 70!"  "Bzzt.  Bzzt."  And guess what?  It worked!  The lady reached over and picked me up.  She carried me in to where the girl sleeps.  I got to see all the stuffed animals!  She used that thing she thinks is more reliable than I am.  "Never give insulin without using the meter first,' she always reminds the girl.

"132?"  She whispered it since the girl was sleeping but she whispered it mean-like and I think she glared at me.  She used the meter thing again.  "Yup.  134. Uggh..."  Then she pressed my buttons some more and I was supposed to agree that 133 was obviously the number the girl's blood sugar was.

"71," I replied.  Did she think I was going to admit what I'd done?  Then what might happen to me?  I'd get even less attention.  I eventually let myself creep up to the right number again, but not so quickly that they'd be on to me.

Usually I'm very good.  Really.  Sometimes the meter and I have exactly the same number.  You should see how happy they are then.  But if they start ignoring me again...well... I might have to take action.

What Brings Me Down

Today's topic: May is Mental Health Month, so now seems like a great time to explore the emotional side of living with, or caring for, someone with diabetes.  What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope?  More  posts on this topic can be found here!

What brings me down as a parent of a child with diabetes is when the disease impacts what my child can and cannot do.  With her cell phone, insulin pump, Dexcom and growing self-awareness, my daughter is now able to do most things other kids her age do.  But not always.

A couple of weeks ago, I wrote about having to say 'no' to an overnight birthday celebration at a friend's vacation home two hours away.  If you'd like to read the whole story, it's here.

Looking back on the post, it tells the story from start to finish.  It explains the logic of our decision and touches on the difficulty of making it.  Yet the emotions are not adequately conveyed.  I mentioned tears, but the whole thing was a real downer.

Reading the invitation?  Deflating.  Anxiety-producing.  Disappointing.  Saddening.

My daughter's reaction?  Like the stages of grief.  They were all there, though not necessarily in order:   denial, anger, bargaining, depression and acceptance.   Fortunately she moved through the whole thing in under an hour, but she was and still is deeply disappointed she can't be there.

How do we deal with it?  With this situation and others like it, we tend to combine two tactics to face the curve balls diabetes sends us.

One, I suppose, comes from our stoic New England and Pennsylvania Dutch roots. With this party invitation, as with other situations in the past, we didn't dwell on it. We had a little cry over the whole thing and unleashed a healthy tirade over diabetes' awfulness.  Then we had lunch.  What else was there to do?

The second is the fun part.  It's the 'when life gives you lemons, make lemonade' idea.  No, she can't go to the party, but we did arrange a fun sleepover at our house for the same night, and there's likely some mini-golf on tap for the weekend as well.  Is it as good as the original opportunity?  No.  But fun will be had, gosh-darnit.

Diabetes can be awful, painful, isolating and depressing.  It takes conscious effort every day to keep it from taking over our household.  Some days it takes everything we've got.

A Limerick

There once was a girl with a meter.
They said diabetes would beat her.
She rose very tall
And said with some gall,
Fall?  I won't even teeter.

In The Grand Scheme of Things

Welcome to Diabetes Blog Week 2014!  Today's topic is 'Change the World.' Let's kick off Diabetes Blog WEek by talking about the diabetes causes and issues that really get us fired up.


I've gotten involved in a variety of diabetes-related causes and issues over the years.  I've signed all kinds of petitions, written letters, shared concerns on facebook and twitter.  Our family participates in at least JDRF fundraiser 'for a cure' each year including occasionally volunteering at these events.  We have donated both money and supplies to other diabetes charities. Given the opportunity, I'll do whatever it takes to convince a parent of the importance of a 504 plan in conjunction with a good relationship with the administration and staff at school. At different times I feel 'fired up' about different issues.  But they all pale in comparison to what children with fewer resources than mine go through to live with diabetes.  

We have a plastic drawer full of fairly accurate test strips.  We wish they were more accuarate.

My daughter has an insulin pump, a continuous glucose monitoring system, several glucometers and a ketone meter.  We wish they'd all work together as an artificial pancreas.

We have insulin in our refrigerator and if we run low, a pharmacy a mile away from our house.  We're annoyed when we forget to call in the refill.

We drive to the endocrinologist's office three or four times per year where we receive excellent care from both the doctor and a full team of diabetes specialists.  The rush hour traffic on the drive home is frustrating.

We sometimes have to push for better understanding or communication from school, but my daughter is safe and happy there with a full-time school nurse and informed staff.

These day-to-day challanges of diabetes are real, but pale in comparison to what too many other children with diabetes live with each day.  Insulin For Life is an organization which provides diabetes supplies and care to children who otherwise would have none. None. Not strips which don't work as well as we'd like them to.  Not insulin they ran out of so they have to make a 6 a.m. run to CVS.  Not electronics they'd really like to replace with the newest model or the pink version.  Not doctors whose waiting rooms could really use free Wifi. None.  If there's a cause to rally around, basic care for children who have none at all seems to me the most important.

Could our lives with diabetes be better?  Always.  But in the grand scheme of things, we really, really can't complain.

The Junior Mints

"So," she admitted, "we stopped at the store on the way home.  I had 50 cents, and I was tired of glucose tabs."

She'd been hovering between definitively low and low-ish all day.  A couple of juice boxes, a half-bolused lunch and half a roll of glucose tabs later she texted me before walking home.  "78!"

Knowing she had no snack with her, I suggested a couple more glucose tabs to keep her upright until she got home.  She had other ideas.

"They had those little boxes of Junior Mints for 25 cents.  There were 5 in a box.  It seemed perfect.  I hope you're not mad."

"It seems to have turned out well...your blood sugar is perfect now.  Did you enjoy them?"

"Yeah. But then I was looking at something and I spilled 3 of them.  I still had 25 cents so I went back in the store and got another box.  I ended up eating 7 of them altogether."






Seinfeld got it just right.  Junior mints are easy to spill, very refreshing, and might even contain curative properties.

We Had To Say No

"You can do anything other kids can.  Diabetes can't stop you."  For the past 11 years, there have been very few exceptions to that rule.  This time, though, we had to say no.

My daughter was invited to a birthday celebration, overnight, at a friend's vacation home two hours from here.  This (very brave) family invited eight or nine girls to come celebrate.

Let me begin by saying how happy I am that she was invited.  I'm always incredibly grateful when no assumptions are made by other people about when and where diabetes becomes an obstacle. No matter how difficult the ensuing conversation was, I love that my daughter was included.

I thought carefully about this invitation before telling my daughter about it, weighing how to approach the conversation.  In the end, I let her read the invite, and respond however she chose to.

"That sounds so fun.  I don't think I can do it, though.  I wish you could come too. But that might be weird."

"I wish I could too, but even if it wasn't weird, Daddy and I set aside that Saturday for {insert awful activity daughter would love to have an excuse to get out of here}. I'm really sorry."

As I said, I considered the possibility carefully. Maybe she could do it.  She could text me pictures of the food.  She'd be wearing the Dexcom.  She's responsible.  She's 12!  Then came the what-ifs, and they were plentiful.   What if the pump site failed?  What if the Dexcom conked out?  What if she forgot to check often or missed the Dexcom alarms since she was having so much fun?  What if she needed glucagon?  What if she ate more or less or differently than what we agreed on?  What if she forgot to plan ahead for activities involving exercise? What if her low blood sugar symptoms got lost in the chaos of a crowd of partying tween girls? I would be 2 hours away, a 4 hour round trip.  For over 24 hours. She's only 12!

The birthday girl and her family are great people. But while our families have spent time together, my daughter hasn't spent time alone with them. There would be a big learning curve, diabetes-wise.  A party at their house a few blocks away?  Absolutely.  Two hours away?  As much as she wanted to go, even my daughter knew this was impossible.

We talked at length about all of this.  It precipitated a conversation about when something like this might be possible.  We came up with a list of things to work on.  They include being able to do her own site change, knowing how to give a shot if she needs to, becoming more proficient at and confident in counting her own carbs, actively planning for periods of exercise, and consistently responding to alerts on her Dexcom.

My daughter finds this list overwhelming.  Understandably.  But then we looked back.

"Three years ago, did you ever think you could go to a sleepover party?"

"No."

"And now you've been to a few.  Did you think you'd be able to go to things like the school social or a movie and pizza birthday party without me there to help you with your diabetes stuff?"

"No."

"Six years ago, I came and stayed with you at almost every playdate.  Look at all you've learned to do. You'll figure it out, when you're ready.  Soon enough, something like this will be no problem.  And until then we're here to help you as much as you need."

The conversation continued with a tirade about the awfulness of diabetes, a few tears, and the promise of finding a few minutes of fun amidst the aforementioned boringness of the weekend in question.

In the end, I think we made the only decision we could.  We had to say no. I wish it were otherwise.

Antibiotics

The sniffles and cough started last weekend.  "I feel fine, just stuffy," was the report.  We started the allergy medicine, assuming the start of spring was to blame. On Wednesday she woke with a disconcerting fever of 102.5.  The pediatrician did an exam and a strep test, and diagnosed a virus.  "Keep giving her Motrin and plenty of fluids."  I wasn't convinced, but we took that route for a couple of days. When she still had a cough and a fever of 102 on Saturday morning, I took her back to the doctor's office. To add insult to injury, her blood sugar had been hovering around the 250 mark for 3 days despite aggressive corrections and temp basals.  

The practice's other doctor had pulled the Saturday shift. I elaborated on the recorded chain of events, and emphasized my concern that nothing about her condition had changed in the past three days.  My stubborn skepticism about the virus idea led to a more careful look.  "Looks like she has a little ear infection. I'll put her on an antibiotic."  She thought for a while.  "I'm going to give her one that works on ear infections but which we also give for upper respiratory infections and mild pneumonia.  Her throat is very red and her lungs don't sound great either. This medicine should take care of anything that's going on."

Observing Saturday's Dexcom graph below, you'll see an ugly pattern in the first 18 hours.  This is indicative of the previous 3 days' patterns as well.  No tactic we attempted proved to be a match for the havoc this illness was wreaking on her blood sugar.  Her first dose of antibiotic was at noon.  We did nothing different that afternoon, diabetes-wise.

Exhibit A

She spent Sunday primarily below the (admittedly inflated because we couldn't stand the constant alarming) line.  Everything was not awesome all day long, but comparing the two is like looking at two different people's dexcom receivers. 

Exhibit B

The fever was gone by mid-day Sunday and so was the lethargy of illness.

I know the medical community is increasingly wary of prescribing antibiotics, recognizing that their overuse can cause problems on both individual and global levels.  These are important concerns.  But sometimes there's an actual infection and an antibiotic is needed. Had an antibiotic been started on Wednesday, we wouldn't have spent 3 days beating our heads against the wall fighting unfightable high blood sugars. And she wouldn't have spent so much time on the couch instead of at school, or out in the spring air.

But I suppose she wouldn't have been introduced to Gilligan's Island.