A Bittersweet Week

Christmas is coming. The carols are playing...everywhere. We're making cookies. There are pageants and parties and concerts. The stockings are hung by the chimney with care. We'll gather with family this weekend. We'll attend a candlelight service. Santa will come. Gifts will be exchanged.

We'll enjoy all of those moments, but with a unique perspective.

Fourteen years ago we spent this week at a children's hospital. We'd been helicoptered there on December 21st with a very sick baby. We spent the night in the ICU and the week at the hospital. We spent the week grateful for life, knowing that our baby had been treated just in the nick of time. We spent the week scared and overwhelmed by the ways our world had changed with the diagnosis of diabetes. We spent the week surrounded by other hospitalized families, some of whom were not expecting as happy an ending as we had been granted.

The experience has forever added a bittersweet thread to our family's Christmas week.

This year's first tears came while I watched my daughter narrate the Christmas pageant on Sunday. I was overwhelmed with gratitude that she was there at all. The specter of what could have happened if we'd waited even hours more to take her to the emergency room lingers a little closer during this season. Hearing her beautiful voice and watching her smile at the little angels scampering down the aisle stood in stark contrast to what might have been.

I'll tear up when we sing 'Away in a Manger' at the candlelight service. I sang it hundreds of times to calm my baby in her hospital crib. I'll skip wearing mascara to the school holiday concert, and take a few deep breaths when I unbox a Christmas decoration we were given in the hospital fourteen years ago. I'll experience a flood of empathy when I encounter or hear about people who are spending this Christmas in a hospital, or in a shelter, or who are grieving or afraid this season.

The thread of Christmas 2002 runs through all of our future Christmases. While it's not a thread I would have chosen to weave into our family's story, it has added a depth of meaning to all of the Christmases that have followed. The thread reminds us that at the core of this season's stories there is light and hope despite the apparent darkness and despair.  As I wrote to conclude the first post I ever wrote for this blog:

My daughter’s second Christmas, when we sat together in the cafeteria of the children’s hospital eating prime rib off of Styrofoam plates, remains one of my favorite Christmases ever.  Despite all that we had lost in the preceding days, we had each other, we had the power of modern medicine, and we had hope. 

Roll Over Beethoven

I heard it from across the crowded room. The unmistakable melody. A terrible electronic version of 'Fur Elise' was coming from my daughter's insulin pump. What, I often wonder, would Beethoven think?

Eye contact confirmed that this wasn't a simple 'Bolus cancelled by user button push' or 'Unable to communicate with pump' Animas Ping alarm. My kid looked both concerned and irritated. I made my way through a few conversation groups.

'I forgot to do a site change before we came. I'm out of insulin. It gave all it was supposed to give to cover what's on my plate but now I'm out.'

We were really enjoying this party. I was reveling in the opportunity to hold an adorable baby whose mom needed a civilized plate of food and adult conversation. My daughter was enjoying helping the little ones at the cookie decorating table. We were having great conversations with friends both new and old. To add atmosphere, it had just begun to snow. This particular festive gathering was exactly what we needed after a whirlwind weekend of holiday shopping and preparations.

We were not, I decided, going to let diabetes win the afternoon. My daughter ate a little less than she'd bolused for, to provide a cushion. We kept an eye on her numbers. She held steady for almost an hour, then her blood sugar started to creep up very slowly. We considered leaving then, but I had to return the baby, and then on the way to get our coats we found other people we wanted to talk to. The rise became more significant about twenty minutes later, and we started our round of goodbyes. But considering the homework that still needed to be done and the football that needed to be watched we wouldn't have stayed much longer no matter the diabetes circumstances.

We got home, replaced the insulin and the site, and bolused for an hour and a half worth of missed basal insulin in addition to the suggested correction for her blood sugar at the time (about 220...not bad at all). The rest of the night was uneventful blood sugar wise.

There were few minor downsides: I needed to heat up some leftovers since she had stopped eating anything but raw vegetables once she ran out of insulin. She missed out on a great spice cake. And the electronic Beethoven theme repeated itself every few minutes- but I'm guessing it probably wasn't audible to anyone but us over the music and conversation.

Looking back, I'm glad we didn't panic. There was no need to. She disconnects her pump at the pool for an hour at a time all summer. At the beach it's often longer. We do the same thing we did last night: make up the insulin once she's hooked back up to the pump. Ideal? No. Medical advice? Absolutely not. But sometimes it's more important not to let diabetes ruin a good time.


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.

A Letter From Santa!

What kid wouldn't cherish a personalized letter from Santa?

Mine certainly did. We had the Diabetes Research Institute Foundation help us solicit a special letter from Santa several years in a row. Santa always writes great letters, but with help from DRI's special elves, these were particularly personal and even included a bit about how well my daughter handles her diabetes.

The cute video above illustrates the program well.

If you love a little one who's expecting a letter from the North Pole, you can make it extra special for everyone involved. Here's the link to the page with all the details about how to make a small donation in exchange for a unique handwritten letter this season. I promise you won't be disappointed!


Thanksgiving weekend was great. We had family travel to spend the weekend with us. We hosted the meal. We enjoyed leftovers, played board games and took some long walks.

Diabetes-wise? It wasn't great. The Dexcom beeped all weekend, mostly for high blood sugars. There was a 'FALLING' alarm each time we set out for a walk, as though all of the insulin delivered over the previous hours had pooled, waiting for the slightest movement to activate all at once. And there was a mysterious low after the Thanksgiving Day pie:


The leftovers are mostly gone now and the routine has returned to the usual school day schedule. Blood sugars are coming back into range.

We decided long ago, the first time we vacationed with diabetes, that special occasions warranted a loosening of diabetes perfectionism. This doesn't mean we don't correct highs and treat lows. It doesn't mean that we stop trying to count carbs altogether. It doesn't mean that we don't use the tools and tricks in our arsenal to attempt to keep things on as even a keel as possible. It simply means that we accept the inevitability of wider swings in blood sugars because of the change in routine and eating patterns. It means we take a deep breath and don't freak out over every out of range number. It means that we focus on the diabetes to the extent we need to in order to keep my daughter feeling good. Beyond that, we focus on the fun. Not medical advice, I'm sure, but it's a philosophy that keeps us sane so that we can enjoy the special occasions in life.

Which is why I can say that, despite the incessant beeping, Thanksgiving weekend was great.


Yesterday was a good day, diabetes-wise.

Early in the day I had a conversation I'd been dreading. I needed to speak with someone from the school about diabetes accommodations specific to a high school event. It turned out to be a great conversation in which I was encouraged to clearly express my questions and worries. I was able to explain the aspects of living with diabetes which led to my concerns. The reaction I got was both compassionate and practical. I expect that, as a team, the school and our family will find just the right solution to our dilemma.

Late in the afternoon we had our quarterly endocrinologist appointment. I've mentioned before how thankful I am for our doctor and our clinic. I was, once again, grateful for wise, fresh eyes on the high blood sugar trends we're working on. We received advice delivered conversationally and with humor. And, while it partly reflected some early-fall lows, we left the clinic proud of my daughter's lowest A1C ever. I know... it's not supposed to be a 'report card. But after the amount of work we've put in to keep her blood sugar from spiraling out of control during this first fall of high school and marching band?  It felt like something worth celebrating.

This day I've described came on the tail of a local JDRF Summit I attended on Saturday. There I encountered people who don't have what we have. They have schools which won't budge on legally required accommodations like testing blood sugar in the classroom. They have doctors who don't take the time to work with them to improve their health or who, even worse, judge and criticize them. They had come to this event because they felt alone and unsupported in their diabetes worlds.

Which brings us back to the November theme of awareness...

I am aware that many families do not find a compassionate voice when they call their children's schools. I am aware that many families are fighting tooth and nail for basic, legally required accommodations. I am aware that many families don't have the time, language skills or knowledge to even ask for their children with diabetes' rights to be honored.

I am aware that there are people with diabetes in this world and country who have no means to get medical care at all. I am aware that much of what passes for diabetes care in this country is far inferior to what is offered at the specialized center we travel to.

I fell asleep last night feeling content that all was right in our little diabetes world. I woke this morning aware that there is work to be done so that more, if not all, families who live with diabetes have a shot at being as well supported as we are.

Every Day is Healthy Lunch Day

Yesterday was National Healthy Lunch Day, a diabetes awareness month event sponsored by the American Diabetes Association.  I spent yesterday morning largely off-line, so by the time I saw the e-mail inviting me to participate I was halfway through my lunch and my daughter's had been at the high school for hours.

Fortunately, almost every day is healthy lunch day in our house, so I bring you today's school lunch:

A variation on this theme goes to school with my daughter every day in our ragtag collection of reusable containers.  Today's sandwich is PB&J with natural peanut butter and low-sugar spiced pear jam. Grapes are today's fruit choice, and she'll have salt and pepper popped rice crisps for the crunchy course. The muffin of the day is apple and pear. 

All packed up and ready to go, with a note reading, "68 g." 


It's blue circle day. The symbol was adopted in 2007 by the United Nations to represent worldwide unity in the fight against diabetes. Progress has been made since World Diabetes Day's inception, including better technology, increased awareness, and more organizations at work to help people with diabetes. Those building blocks of progress give me hope.

I even catch myself thinking about the end-game for this whole diabetes thing. It's quite possible that within the thus-far elusive 10 year window my daughter will be able to go about her business with little to no concern about diabetes. The advent of a true artificial pancreas now seems inevitable. Smart insulin and other pharmaceutical advances will make life simpler and safer for people with all types of diabetes. There are an increasing number of paths towards biological cure therapies. There is a light at the end of the tunnel. I have hope for my child.

Yet for too many people that light is a mere glimmer, if they can see it at all. Parents are wondering how they'll afford the next vial of insulin. Children in third world countries are travelling hundreds of miles to diabetes clinics. Grandparents are choosing between food and prescriptions. Families are suffering physically and emotionally because they do not have access to even the most basic diabetes care: a knowledgeable physician, a glucometer with enough supplies, and the pharmaceuticals they need.

So for me the question becomes, what needs to happen so that all of us are really united in that blue circle of diabetes, so that all of us can have hope? I can't wrap my answer up in a tidy bow for you today, but I can tell you that there is no shortage of organizations at work on behalf of people with diabetes here in the US and around the world:

International Diabetes Federation

JDRF Advocacy

Diabetes Patient Advocacy Coalition

Diabetes Advocates

American Diabetes Association Advocacy

These organizations and many more (if I've left out one you feel passionately about, feel free to comment below) are finding ways to provide hope for those for whom diabetes is a hardship in ways many of us can only imagine. If World Diabetes Day Resolutions are a thing, then I resolve to find another way to be involved this year in advocating for the basic diabetes needs of all people with diabetes to be met. Everyone with diabetes deserves to have hope.


Project Blue November is sponsoring an Instagram challenge for diabetes awareness month. Today's theme is inspiration.

What image would I post?  What inspires me in this diabetes life?

There's the obvious choice: a photo of my kid. For so many reasons she's my inspiration. Neither of us chose this path but the way she's treading it inspires me every day.

Another choice would be a photo from one of our JDRF walks.  I'd choose one with some friends in it but also with the sea of people surrounding us.  Those are the images I conjure up after a long night of Dexcom alarms. It's inspiring to know how many other people are rooting for and working towards the end of T1D.

I have lots of pictures of my 'happy places' I could use, like an ocean shot or a picture I took from my seat in a kayak. Being in these places gives me the opportunity to disconnect from the everyday and gain the perspective and inspiration I need to move forward with renewed energy.

I could post a favorite spiritual or philosophical mantra.  There are plenty of quotes and verses which inspire me to keep going even when this diabetes road gets rocky.

What about a word collage with names of people who inspire me? It would begin with my kid but also include my husband, family and friends. It would especially include our friends whose lives are touched by diabetes. It would include doctors, nurses and other medical staff who've encouraged us along the way. It would include famous people living with this disease and raising their voices in encouragement and advocacy. It would include names from the diabetes online community whose voices have kept me going on many long days. 

Fortunately, I was able to turn this into a written exercise and lay out a collection of possibilities instead of choosing just one.  But I worry that there are people out there who wouldn't be able to think of even one.

Which brings us back to diabetes awareness month and my goal of considering awareness from lots of different angles. I am so fortunate to have abundant resources in my life from which to draw inspiration. That awareness leads me to wonder what else I can be doing to help other families with diabetes to find sources of inspiration in their own lives. It takes a variety of resources to live well with diabetes: insulin, knowledge, patience, medical care, humor, adequate equipment, and, especially on the toughest days, it takes some sources of inspiration. Everybody should have at least one.

Not All Statistics Are Boring

I struggle every November to think of ways to use my personal social media accounts to raise awareness.   I've posted general diabetes facts.  I've posted symptom checklists.  I've shared bits of our story.  I've received very little reaction to any of those posts, and those who did 'like' or comment were almost always people whose lives were also touched by this disease.

Thanks to JDRF, this year is different.  The above infographic can be created by  going to this page on the JDRF website.  Type in a few dates and details and, voila: a personalized diabetes stats sheet. 

I posted this on Facebook on Tuesday and it's still generating conversation today. People are genuinely moved by these numbers.  They're big numbers, and somewhat alarming if you really look at them. These numbers invoke, in a unique way, both surprise and empathy.  She's had how many fingersticks and she never complains about it?  You've lost how many hours of sleep and you're still (usually) functional?  The people closest to us see some of it, but I imagine there's almost nobody who realizes how much sleep we lose or how often my kid has a sharp object pierce her skin.

Last November, I wrote about how awareness-raising within our small circles of friends can not only generate more personal support for us which, let's be honest, we could always use; but also how it can also create a ripple effect, raising awareness and advocacy on a larger scale.

This year I'm grateful to JDRF for providing me an extremely effective way to start several meaningful conversations about what life with diabetes is like.


Diabetes exists, and we'd rather it didn't anymore.  Please be aware of that.

I intend to visit the idea of awareness in a few different ways during this magical month of November. The above words, from a post I wrote back in 2011, sum up my sense that there are many different aspects of diabetes to raise awareness about and many different ways to do so. The rest of the piece is below:

I've read a couple of pieces this week discussing what the purpose of diabetes awareness month should be.  Awareness is the obvious answer, but awareness of what?

Should it be awareness that people with diabetes can do anything people without diabetes can?  No foods are forbidden. There are famous athletes, musicians, and supreme court justices with diabetes.  My kid can come to your kid's birthday party, whatever it may entail.

Should it be  awareness that diabetes is a terrible disease to live with?  It involves piercing the skin with sharp objects many times per day.  Cumbersome equipment and its related management is a constant.  Scary complications up to and including early death are real possibilities.

Should it be advocacy for a cure?  Don't cut national funding for medical research.  Allow scientists to use all the tools at their disposal to find a way to erase diabetes.  Donate to JDRF or DRI or ADA.

Should it be an increased sense of community?  Wear blue on Fridays. Make plans to attend Friends for Life or go to a local JDRF event. Blog more.

Or is it simpler than all that?  Maybe any of the above will do.  Whatever it is that means the most to me, or you, is what we should do.  The important part is not how we share the message, but that we do it at all. 

Diabetes exists, and we'd rather it didn't anymore.  Please be aware of that.

Halloween Lows

Dear Parents of Trick-Or-Treaters-With-Diabetes,

Please make sure your child has plenty of fast-acting carbohydrates available when trick-or-treating on Halloween.


'Wait...what?' you may ask, 'but it's trick-or-treating! There are fast acting carbohydrates at every door!'

Trust me. There are not. We've been there not once but twice. Once we were unprepared and the second time just underprepared.

The year she was 6, my daughter's blood sugar was over 150 when she left the house, perfect for a little walking followed by a sample or two from houses of people we knew.  We went around the corner to meet the neighbors. There was a little running around in the yard until the youngest neighbor was ready to go.  By house #3 my kid was low.  In her bucket were fritos, a spider ring and a 3 carb dumdum pop.  Houses #4 and #5 offered Hershey's kisses and tattoos.  We had to drag our party back to our house for juice before proceeding.

 A few years later we were trick-or-treating  in a friend's neighborhood.  We'd covered a couple of blocks when suddenly my kid was not just low but in the 40's.  I had one juice box with me, having assumed that would be enough, since we'd gain a stash of candy as we went.  Despite having visited a couple dozen houses, my little witch had received almost exclusively peanut-butter cups, snickers and chips, all members of the 'slow-acting don't eat this if you're low' carbohydrate category. It was dark and difficult to see into her friends' plastic pumpkins to ferret out all of the available smarties and nerds, which she downed in rapid succession as we continued on our route.

So take it from a mother who has seriously considered asking for orange juice in lieu of the spider ring, assume nothing; except that you're taking a long walk, at night, probably at an hour when exercise is unusual.  Bring the juice.

The Muffin Chronicles Part 3: Apple (& Pear?) Muffins

We started out making these with no fruit at all, as a fall spice muffin.  Then my daughter had her baking-loving friend sleep over one night.  She's is my favorite sleepover guest since the evening always involves making something great either for dessert or for breakfast the next morning.  This friend suggested the addition of diced apples, and we've never gone back.

Start by preheating the oven to 350°.

Then mince up some apple, and maybe pear if it happens to be around. I had parts of two apples left from chopping the rest into salads during the week, and a sad pear.  I was only able to salvage a small chunk of the pear, but I wouldn't want to use too much anyway since they're so much moister and mushier than apples.  In total I used somewhere between 1/2 and 2/3 cup of finely chopped fruit. 

Next, combine in a large bowl (to which you'll eventually add the dry ingredients):
1/2 c. sugar
1/2 c. milk
1/3 c. vegetable oil and
1 egg

Then add:
1 c. whole wheat flour
1/2 c. white flour
1 1/2 tsp. baking powder
1/2 tsp. salt
1/4 tsp. nutmeg and
1/4 tsp. cinnamon

Stir just enough to combine. 

Then fold in the fruit.

The first few times we made these, we went back and double checked that we'd measured correctly.  The batter is extremely dense- more like bread, or even cookie dough.  The thickness does make it easier to get it into the muffin cups, which should be about 2/3 full.  Sprinkle lightly with cinnamon sugar. 
Bake for 15 minutes.
The whole recipe has approximately 285 g. carbs if you use the equivalent of one average apple and depending on how heavy-handed you are with the cinnamon sugar.   I ended up with 35 mini muffins which mathed out to approximately 8 carbs each. 
They're even more fun if you're fortunate, as I was, to find holiday themed baking wrappers in your pantry!

Dear Diabetes

Dear Diabetes,

Please stop.

You have had your fun.  Now please leave us alone. 

The blood sugar of 400 after dinner was sarcastic, no?  Yes, we forgot to bolus for the little baked potato until after it had been eaten, but a bg that high for maybe 15 missed carbs?  Get a grip.

Then you showed up at gym the next morning.  You and gym had finally started to get along I thought.  But you threw in a random 40 to start the day. Why? 

Oh- yes.  I remember.  So that my kid could have a moment to ask the nurse about the next day's standardized testing plans.  Where would she be taking it?  What were the accommodations for you, diabetes? This question ended in a lunchtime meeting with the guidance counselor, a series of emails and still no firm answer.  We'll have to go with the flow for this one it seems, partly my fault for not taking note this test was coming and asking earlier. But we would've gone with the flow anyway, without having the opportunity to ask the question and waste an hour of the day with stressful communication about the answer.

As if the testing question fiasco weren't enough, the low also resulted in missing most of Spanish class, where the assignment to do a project on a famous Hispanic person was handed out.  By the time she got back to the classroom Big Papi and Freda Kahlo, her first choices, had been taken.  She chose Pedro Martinez, but while the choices on the original list included links to articles in Spanish to work from, that wasn't the case for off-the-list options.  So while the class had the opportunity to complete most of the initial portion of the project in class, my daughter spent an hour at home finding an article in Spanish about Pedro and answering questions.  On a night she was supposed to have no homework due to the aforementioned tests.

Diabetes, we've had enough.  We see you.  We hear you.  We feel you.  We get it.  You've got power to derail any day you want to.  And you did.  You won the day.  Please go somewhere else to celebrate.



Like a G6?

We upgraded our Dexcom system a few weeks ago to the G4 Share.  Why, you may wonder, didn't we go straight to the newest Dexcom system, the G5?  And what's the difference, anyway? 

Here's what we learned about the distinctions between the two:

-The G4 Share sends data from the transmitter (worn on my daughter's body) to a receiver (within several feet of the transmitter). The receiver has a screen on which the data is viewable, and it alarms for high and low blood sugars.  The receiver then sends data to a paired smartphone (in this case my daughter's). That phone, in turn, can be set to send data to other smartphones (in this case, mine and my husband's).

-The G5 Share sends the data straight from the transmitter to a smartphone, bypassing the need for a receiver.  There is an option to have the data go to a receiver instead, but it cannot go to both places.  From what I've read,the distance over which the G5's transmitter will send its data is shorter than that of the G4's transmitter.  The share part works the same way, with the option to send data on from the primary smartphone to designated recipients.

Here's how we thought through our decision:

-My first consideration was that I didn't want my daughter's phone in her room at night.  The temptation to text, stream Netflix and/or scroll through Instagram would be entirely too great. Because of it's reportedly shorter transmission range, I wasn't confident that the G5 transmitter's signal would reach through the wall to the adjoining bathroom or hallway. And even if it did, I had another issue:

-I didn't want my phone in my bedroom at night. Much to the chagrin of a few of my friends, I'm known for putting my phone 'to bed' by 9:30 p.m.  If I were using it for Dexcom alerts I would not only need to leave it next to the bed, but also leave the sound on.  This wasn't appealing if we could continue our current practice of using a receiver with a longer signal instead.

-We then began to consider where else my daughter wouldn't or shouldn't have her phone, even if it were part of a medical device. It would be hard to carry a phone during gym class.  What about marching band practices and competitions?  Theater costumes don't often have roomy pockets.  The size and simplicity of slipping a much smaller-than-an-iPhone Dexcom receiver in a pocket or clipping its case on a waistband seemed much more convenient in these situations than finding somewhere on her person to stash the phone.

-The receiver emits a unique series of vibrations and/or beeps to alert its user of low or high blood sugars.  This would make it possible to be alerted of, and to address, a problem even if the receiver were silenced and tucked deep and irretrievably in a uniform or costume.  Two vibrations for high, three for low, four for very low.

-The receiver's information seemed more quickly accessible.  The receiver is usually clipped to her waist band or in her front pants pocket. At the push of one button to wake up the screen, she can see her current number, a trend arrow, and a three hour graph.   With the phone, there would be the process of locating it in her bag, unlocking it, opening the app and then being able to see the data before putting the phone away again.  More steps would make it harder to be surreptitious and more likely to get questioned or looked down upon for using her phone inappropriately.  Was it worth the extra conversations and dirty looks?

It was a tough decision, mostly since my inclination is usually to go with the very newest technology, but I'm convinced we've made the right choice for our family at this moment.  Now we can stop thinking about it until we have to decide whether we'd like a G6 or a G6.

Share Scare

Marching band practice started at 6:30.  Soon thereafter my phone started emitting a sound alarmingly similar to a fire alarm in a large building.  I grabbed it and discovered this:

I don't text my daughter for moderate lows in the 60's range. Those I trust she can handle just fine on her own, just like she did 3 weeks ago before we had this technology.  The same is true, so far at least, for any issues at school.  She's got teachers, friends, and a school nurse there to help her. 
But this was unsettling.  The band was outside.  It was getting dark.  What if she'd stepped aside to check and nobody noticed her?  I texted:
My phone is alarming about this low...assume you're treating it?
Five minutes passed with no response. It felt like 15. The next time the number updated it was 46, still straight across. I could hear the band from the high school, just up the hill from our house. I texted again:
A few more minutes passed and another glance at my phone showed me this disconcerting screen:

As the minutes continued to creep by with no return text, I considered all kinds of possibilities. Was she:
Keeled over in the dark on the sidelines somewhere far away from her phone and supplies?
Being taken care of by a responsible adult somewhere not near her bag?
Still marching, unaware she was this low?
Perfectly fine and wearing a 12 day old Dexcom sensor that was giving flaky information?
I started to gather my shoes and my jacket.  How long was it okay to wait before going?  How horrified would she be if I showed up there and it was a false alarm?  What if I didn't go and it wasn't a false alarm?  A few more minutes passed as my thoughts swirled. I decided to wait it out until 7:30 when I was planning to leave the house for a meeting anyway.  I'd just casually drive by on the way...even though it wasn't on the way at all. 
But then, finally ... a text!
I was actually 79.  Drank a juice and kept marching.
We're finding lots of reasons to love the 'share' technology.  This evening of scary misinformation wasn't one of them.

The Muffin Chonicles Part 2: Blueberry!

I mentioned a couple of weeks ago that we're on a muffin kick here.  They're the new go-to lunchbox addition.  Summer (and blueberry season) have sadly come to an end, but frozen blueberries work just as well as fresh in this recipe:

Whole Wheat Blueberry Muffins
This recipe is adapted from Betty Crocker's New Cookbook ©1996
Preheat oven to 400°
Combine the following in a large bowl (large because you will eventually have all the batter in it):
1 c. milk
1/4 c. vegetable oil
1/2 tsp. vanilla (or a little more)
1 large egg
Combine the following in a separate bowl:
1 c. white flour
1 c. whole wheat flour
1/3 c. sugar*
3 tsp. baking powder
1/2 tsp. salt
Add dry ingredients to wet and stir until just combined.
Fold in:
1 c. fresh or frozen blueberries**
Spoon batter into a greased or paper-lined muffin tin.
Lightly sprinkle with cinnamon sugar if desired***
Bake 20 -25 minutes for large muffins, 14-18 minutes for mini muffins, until an inserted toothpick comes out clean.
Yield: 12 large muffins, 30-36 mini muffins (I ended up with 32).
With 32 made, they mathed out to between 9 & 10 carbs each. 
*Yes- real sugar. I have made these with Splenda and they come out fine that way too but a little denser, and they're dense to begin with.  Especially since it's such a small amount of sugar, I don't think it's worth the substitution.
** Especially for mini muffins, the smaller the berries the better.
*** We like a sprinkle of cinnamon sugar to give the muffin top a little texture. We usually have a container of cinnamon sugar mixed up in the pantry to sprinkle on toast or muffins. Our formula is not an exact science. The general recipe is: a couple of spoonfuls of white sugar combined with several generous shakes of cinnamon until it's approximately this color:

Blueberry muffins are great for a little taste of summer year-round. 
But fall has arrived, so be on the lookout for something apple-centric in the next edition of The Muffin Chronicles! 


I woke slowly, confused.  It was definitely the middle of the night.

I thought I'd heard footsteps, which would ordinarily mean my husband had gotten up, but he was still in bed.  I opened my eyes as my husband sleepily said, 'Hi?'

There she was, in front of me: my kid. I said her name groggily, with a question mark at the end, like I wasn't sure who she was.  But the real question was what she was doing there, a foot from my face.

"What's going on?"  The more awake I got the more worried I got about the possibilities. She was sick, or something had gone awry in the house (flood? electrical?), or something had scared her terribly.  I could not remember the last time she'd showed up in our room in the middle of the night.  There was definitely a problem.

"My pump is alarming.  The battery is dead."

"Okay...  Let's go."

She and I stumbled back into her room.  She found a quarter and I found a battery.  We switched out the battery and rewound and re-primed the pump as per procedure. 

"I don't know how I missed that the battery was low," she said by way of apology, "I guess I use the meter remote more now so I don't notice it as much."  The pump screen does give fair notice- usually at least a week for us- that the battery should be changed and we ordinarily change it with a regular site change after we've been warned.  It's preferable to 2:38 a.m. on a Wednesday. 

"I'll try to check more often and notice."

What could I say?  "I'm guessing you will...this isn't much fun."

She checked her blood sugar, not knowing quite how long the pump had been alarming and how much insulin she'd missed, but it apparently hadn't been long enough to cause any real spike. 

So I shut her light back off and tucked her back in with a kiss, grateful that it didn't turn out to be a true emergency.  It was just another night with diabetes. 


 One bit of wisdom shared often by both professionals and veterans of the diabetes community is about how we react to blood sugar numbers.  The numbers are, the wise people tell us, neither good or bad.  They are simply information.
A blood sugar check should be a 'no judgement zone,' the theory goes.  The sole purpose of the number is to tell us what needs to happen next:  a juice box, a correction bolus, a regular meal bolus, and nothing at all are all possibilities.
It's pointless, we're told, either to express elation at a perfect 100 or to throw the meter across the room over a 357.  Tying feelings to the numbers has the potential to lead to unnecessary frustration.  It can lead to checking less often for fear of getting a "bad" result.  It can lead to spiraling emotions when things inevitably derail; emotions which could get in the way of being clear headed enough to make necessary adjustments. 
So it is with this philosophy in mind that I look at the now-constant stream of blood sugar numbers available on my phone thanks to our new 'share' technology.  Take this day for example:
The information tells me that my daughter's blood sugar was more often higher than her target number and lower than her target number than it was anywhere near her target number.  I'm informed that if we averaged all of the numbers together, we would come up with a number close to the target  number.  The graph informs me that steps were taken throughout the 24 hour period to return blood sugar levels closer to the median but that those attempts had more than the desired effect almost every time.
But it's incredibly difficult not to look at this graph and utter a few choice words, non-informational in nature.  It's hard not to see how crappy a day this was, and to wonder what we're doing wrong to make this happen; how things have spiraled out of control like this. 
While I don't discount the wise people's theory, I think there's a balance. I do not want to get so frustrated that I stop looking at the numbers.  I do not want to say things about the numbers which imply a sense of guilt.  But sometimes, at least for me, it takes a little anger and frustration to get me moving or, in the case of this fall, keep me working until we figure this whole high school schedule out.  Because, really, I'd prefer the information steaming onto my phone screen always looked a little more like this:


My twitter account exploded this afternoon.

People were sharing the news of the FDA approval of  Medtronic’s MiniMed 670G System, the first hybrid closed loop insulin delivery system.

Their shares of JDRF's tweet were accompanied by phrases including:

OMG I may start crying

This might be the best news I've ever heard

I'm over the moon

The exclamation points and happy emojis were innumerable.

I did tweet this, sans even one exclamation point:

It is, indeed, big news.  Somehow it's not hitting me, though, as BIG NEWS!!! 
I'm generally pretty even-keeled, so to be fair, my twitter feed will never feature countless exclamation points or party-themed emojis.  But I began to wonder what else was feeding my cautious optimism about this news.
Perhaps it hasn't sunk in properly yet. Perhaps it's because while approval came faster than some suspected it would, I knew it was on the way so was not completely surprised.  Perhaps it's because while it's a huge advancement, it's not the end goal as far as artificial pancreas products go.  Perhaps I'm considering the insurance environment we're currently in, making me worry that access is a potentially huge issue.  Perhaps I'm wondering how well it actually works. 
Don't get me wrong, I'm happy this has happened.  I'm happy that it looks like my kid will be wearing some kind of artificial pancreas system to college.  That's been my hope since it began to seem like a faint possibility. 
I'm happy that people will be acquiring these devices and living safer and healthier lives. 
I'm particularly happy that this product's approval will pave the way for greater innovation so that eventually my kid will be wearing a system that's mindless and completely foolproof. 
For right now, though, I'm just more 'excited' than I am 'EXCITED!!!'

The Muffin Chronicles: Episode 1

My daughter has taken the same basic lunch to school since first grade:

A sandwich (usually sunflower seed butter and jelly)

Fruit (grapes, berries, a clementine, apple slices)

A salty snack (pretzels, goldfish crackers, sunchips)

This year, she needed a lunchbox addition.  With a 7 a.m. start to her school day because of a period 0 choir class, breakfast and lunch are a long time apart.  The previous lunch wasn't filling her up anymore, even with a larger serving of fruit and a heartier sandwich.

She needed something else nutritious which could be eaten quickly, wouldn't spike her blood sugar, and wouldn't rip out her braces.  The braces part eliminated the obvious granola bar choice, especially when paired with eating quickly.  We tried a couple of brands of soft cereal bars, but there was a definite blood sugar spike just in time for important classes like biology and geometry.  Her lactose issue eliminated cheese or yogurt options.  So we went with:

Corn muffins are her favorite but they're even better with blueberries.

Homemade mini muffins.  It sounds ambitious but hear me out.  If once every couple of weeks I make a batch of mini muffins and freeze them, I can take two out every morning, put them in a little container in her lunch box and she has a decent 20-ish gram snack.  Some recipes are good 'as is,' and for others I substitute whole wheat flour or decrease the sugar to make them a little easier on the blood sugar. 

Corn muffin recipes are plentiful so I won't bore you with that one, but I do plan to share a couple of (hopefully successful) muffin experiments in future editions of 'The Muffin Chronicles' this fall!

Sharing is Caring

Back in October of 2014 I wrote a post entitled,  'Why We're Not in the Cloud.'  My reasoning centered around allowing my daughter to problem-solve her own diabetes issues as independently as possible.  I did not want to be hovering over her metaphorical shoulder, texting ' You're 68- did you go to the nurse?' Or 'Why are you still 250, didn't you correct that yet?'

Fast forward 2 years and we've just received and activated a Dexcom G4 Share receiver and downloaded the app on our phones.

Why, one might ask, the change of heart?

1.   My daughter wanted to be able to see her numbers on her phone.  She's a 14 year old high school freshman and that's the kind of stuff they're into. She thought it would be both 'cool' and convenient to be able to use her phone as her primary source of dexcom information.

2. Our family recognized that having a virtual diabetes care team was increasingly important. Gone are the days of a parent, nurse or other diabetes-aware individual being within shouting distance at all times. My daughter is doing more and more of her care and troubleshooting on her own, which is great.  But especially during the transition, it's comforting to know someone else has an eye on her numbers in case problems arise.

3. This one's all about me.  Being able to see her blood sugar on my phone will, I think, give me a little peace of mind when she's traveling on a school bus with the marching band, out late with friends, home alone, or when the school days are followed by long theater rehearsals.  I'm already not sure how I survived the first birthday parties and sleepovers without it.

4.  Because my daughter is busier, we'd rather spend the moments we have together talking about something more interesting than how her blood sugar went all day: was she low in gym, did she spike again after lunch, did the breakfast correction work okay? If there's an issue, then we can get straight to fixing it, otherwise we can talk about other, more interesting, news of the day.

For now the constant stream of information is addictive.  We're entertained, and occasionally alarmed. Only time will tell how this will end up working for us. I look forward to sharing the plusses and minuses in the weeks to come.

JDRF Sneaker Campaign


My photo of this sign is not as clear as I'd like it to be.  It reads:
A cure for Amanda means.... "A cure means no more finger pricks and shots.  I don't have to tell anyone I have type 1 diabetes anymore."
Each register at my local Marshalls had a sign like this, featuring a different kid, ranging in ages from 3 to 18, talking about what a cure would mean. 
What a great way to personalize the ask. It's eye-catching, with just enough text to read while waiting for the cashier to ring up purchases.  It's effective in explaining why, and for whom, a donation matters.
As it happened, I'd already spent several minutes of my Marshalls trip on the phone with my own person who needs a cure. I'd had already promised to purchase a paper sneaker on her behalf so that maybe someday she wouldn't have to call me from school with a blood sugar problem, because those problems would no longer exist. By the time I got to the register I needed no further motivation to put my name on a paper sneaker.
For people who don't receive personal phone calls from people with diabetes while they're shopping at Marshalls, I think this is a great addition to the annual sneaker campaign.


On the first day of outdoor gym, after running increasingly fast sprints for half an hour, my daughter's blood sugar was low.  She grabbed a friend and went to tell the teacher.  The teacher, apparently a man of few words, pointed to my daughter's friend and said in what my daughter describes as a deep, gruff voice, "You. Take her to the nurse."

So off they went, to the door from which they had exited the building.  Locked.

They tried the 2 other doors on that side of the building.


As they debated whether to go back to the gym class (a couple of hundred yards away) or to go to the building's front door which has an intercom system (maybe a bit closer but out of sight of the gym class), someone discovered them trying to get in and opened a door.

Yesterday there was more running outside and, despite an interim round of insulin adjusting, another low. 

"You. Take her to the nurse."

"Is the door unlocked?"

"Go to the front."

They were buzzed in.  Ten minutes later, still in the nurse's office, my daughter heard the bell ring.  She was still wearing her gym clothes and all of her belongings were still in the locker room which, they had been told, was locked when nobody was in it.  The nurse walked her to the gym (her bg was still 60) where the locker room was, indeed, locked. 

As my daughter wondered what her next move should be, the gym teacher of few words appeared . Unlocking the door, he asked,  "You wear a pump?"

"Yes and a dexcom- it's a continuous glucose monitor."

"Does it go to your phone?"  (Wait- what?  Does this guy speak my language, however succinctly?)

"No but my new one will."

"My niece has that."

"Cool.  Thanks for unlocking the door."

Gym blood sugar management may take a while to sort out and there are probably more impeding locks to contend with.  But at least we've learned that the gym teacher of few words gets it.  Even if he's a little brusque about it.

What Time is Gym?

Here's our latest challenge:

The high school has block scheduling.  This means that while kids take 8 classes, they only go to 6 per day.  There is a continuous rotation through A,B,C and D days.  Each day has 3 morning classes and 3 afternoon classes which always remain in their own day parts, but not at the same times. The first challenge is, of course, end up in the right classroom at the right time more often than not. 

Then, to up the degree of difficulty, add diabetes.

This schedule means that gym, like all of the other classes, only takes place 3 out of every 4 days. It's always in the morning, but rotates between 8 a.m. 8:58 a.m. or 9:54 a.m. depending on the day.

Yesterday was the first day the kids changed and had a full gym class. It was during the 8:58 time slot. It turns out, to provide an additional diabetes challenge, that one day per calendar week the class has a 'fitness activity.'  Yesterday's was running sprints outside, promptly followed by the first high school visit to the nurse's office due to low blood sugar.  Other days will be spent on traditional gym units like volleyball and badminton.  This fitness activity day will not occur predictably, so it is not as though we can know that every 'A' day will be different.

Every school year has required an adjustment in the basal insulin delivery rates on my daughter's pump. The summer schedule of waking, sleeping and activity is different from any school schedule.  Each year of elementary and middle school brought a different time for lunch and daily gym class. A couple of weeks into September we were able to see the new patterns and tweak insulin doses to prevent most post-gym or pre-lunch lows.  There were still variables like going outside on a gorgeous spring day to run the track instead of playing badminton; and half days threw everything off.  But generally there was some predictability to the daily schedule and its requisite insulin needs.

This year?  I really have no idea how to proceed.  I dropped the morning basal rates a bit last week after it became clear that being up and active at 6 a.m. was leading to a different pattern than the more civilized summer hours did.  Last night I further lowered, and changed the timing of, the morning basal rates as the first stab at addressing the gym issue.  But I fear that on no-gym days highs will creep in, and that the changes will be more effective on some days than on others due to the range of class times and activity levels. 

In a perfect world, my daughter would check her blood sugar an hour before gym class and then again when class was beginning.  She would know what the day's activity was and use all of the available information to decide whether to set a temporary basal rate or have a snack.  Or we'd have a few different basal patterns set up and change them based on the day's school schedule.  Maybe she would eat different breakfasts depending on when gym was scheduled in order to, theoretically, stabilize her blood sugar at the right times of morning. 

Life as a high school freshman is nothing akin to a perfect world..  At this point she's lucky to make it to the gym at the right time and to find the locker room. Arriving at school for 7 a.m. choir fed, bolused and with enough insulin left in the pump cartridge for the day (oh- and dressed, homework finished and carrying her backpack containing everything she needs for the day) is almost more than we can ask.  So for now at least, we'll play a little bit more with the basal rates to hope we can find a happy medium for the mornings.  And she'll keep the juice boxes close at hand.

First Days of High School

So far high school is overwhelming and scary. Not as much so as we'd conjured up in our imaginations, but it's a big new building with a whole new cast of characters and a whole new set of expectations.

If we make it through tonight's first football game, we might be able to breathe again.

Diabetes has, thus far, not thrown any major curveballs.  A couple of borderline (70ish) lows were treated with glucose tabs in the classroom.  The Dexcom has been alternating between impressive accuracy and short bouts of '???' for a couple of days.  Extreme hunger has been reported at lunchtime and we're searching to find a lunchbox addition which doesn't lead to a major blood sugar spike an hour later, but which isn't 'boring.' 

Most significantly, we've already switched up the school nurse game plan.  When we met in June, we decided my daughter would handle her diabetes independently at school unless she was low or otherwise decided she needed assistance. When I dropped off the supplies before Labor Day, the nurse had qualms about being completely out of the diabetes loop. She wasn't asking for my daughter to visit daily or check her blood sugar in the nurse's office. She just wanted to be able to track how things were going.

I had no objection to her being in the know. Ideally she's part of our diabetes success team. If she notices something we don't (like my daughter is crashing half an hour after every time she has gym) we'd welcome the help.  I just didn't know what the best plan was.  Maybe turning in a log sheet at the end of the week, or downloading the school meter for her? We left it that we'd pass along data in some form by the first Friday of school. 

Leave it to the teenager to come up with the most logical game plan.  'Why don't I just text her every time I check or bolus?'  Of course.  Quick and easy.  No writing things down or remembering to stop by every Friday to hand in a log.  My daughter stopped by the office on the first day of school to say hello and to run this idea past the nurse, who enthusiastically agreed to give it a try.

Much of this week has been about finding the easiest and most efficient way to get through the day: planning the right times to go to the locker, finishing homework (already!) before band practice, the best routes through the hallways. Texting the nurse is another variation on the theme.

A Cautionary Tale

It was Saturday evening at 5:30. My daughter had, as is her custom, waited until the last minute to do a site change.  In less than half an hour she would be leaving to go out to dinner with friends: a gathering to commemorate the end of summer.  Just a quick site change and she would be off.

Supplies were gathered.  The cartridge was filled.  Wipes were applied.  The pump was picked up and buttons were pressed to 'rewind' the area that holds the insulin in order to accommodate the new, full, cartridge.  The motor started to buzz and then...

'BEEP boop BEEP boop.'  It sounded like a very tiny ambulance.  The message on the pump screen read: 'ALARM  CALL SERVICE  No delivery.' There was a code number.

It was then that our lives passed before our eyes.  Diabetes-wise anyway.

Where were the syringes? When was the last time I'd given her an injection?  She had never had to give herself an injection. Would she be able to figure it out in time to go out to dinner? When was the last time I'd written down all of the basal rates, insulin to carb ratios and correction factors?  Probably a year ago.  And where exactly were they anyway?

Without that information we would be challenged to figure out how much lantus to give her if the pump was actually dead.  Then, how would we figure out how much novalog to give for dinner and for meals and corrections to come?  I'd have to call our diabetes clinic and get help.  On Saturday night of a holiday weekend.  And what if a replacement pump couldn't come until Tuesday- after Labor Day?  What if she had to go through her first day of high school on Lantus and Novalog shots? 

My hands were shaking as I dialed the number on the back of the pump.  'For 24 hour technical assistance with your insulin pump system, press 1.'  I pressed 1 and was connected to a new menu including: 'For 24 hour technical assistance with your insulin pump system, press 1.'  I pressed 1 again and was connected to yet another new menu including: 'For 24 hour technical assistance with your insulin pump system, press 1.'  Really? Maybe if I press harder?  The third time was the charm.

The representative I spoke with did not seem panicked or pessimistic.  This was encouraging.  "Have you tried rebooting the pump by removing the battery?"  I had not.  "Let's try that."  My daughter fetched a quarter.  It took longer than usual, with my shaky hands, to use the quarter to unscrew the battery cap, but I did it.  We removed the battery, waited a few seconds, put it back in.  The alarm screen was gone.  I was told to attempt to rewind again, and if that was successful to continue with the whole insulin replacement process while still on the phone with the representative. 

As it began to become clear that things weren't as bad as I had imagined they might be, I said to the representative, "It sounds like this isn't as big a deal as I thought it might be...is this a common call you get?"  She explained that when the pump rewinds it does a series of self-checks and that if it detects a possible abnormality this alarm screen comes up.  Rebooting the pump and rewinding it again causes it to recheck itself and most of the time it does not alarm a second time, meaning (apparently) that the first one was a false alarm.  She did say to call if it happens again, so that they can document it, and that if becomes a regular occurrence they would need to replace the pump. 

In the end, we loaded up the new cartridge and primed the pump with no further problem.  While my daughter finished getting herself ready to go out, I jotted down total daily doses from the pump's history, her basal rates and ratios, and every other number I could think of.  And I set a reminder in my phone to do it again after the next endocrinologist appointment. 

So please, pump users, take this as a cautionary tale.  Please (today) make sure you have all your info jotted down or electronically stored somewhere other than your pump, and that you have the equipment and knowledge you need to activate your back-up plan.  Hopefully, like us, you won't need it.  With any luck you won't even be late for dinner.

YIMBY 2: Band Camp

Last week I wrote about how comforted I was that my daughter attended a preschool which was, essentially, in our backyard.  Similarly comforting, despite a ten year lapse in time, was that last week's marching band camp was located adjacent to our (subsequent) backyard.  We moved a few years ago, to a house with my daughter's then-elementary school behind it.  Our realtor contacted us at the start of middle school to make sure we didn't want to move again but, as it turned out, it came in handy that we stayed put.

Band camp is usually held at the high school (a whole block and a half away from our house) but due to some construction in the building and on its fields, the week of camp was held at the elementary school behind our house.  The trek is a little longer than to preschool since our current  backyard is surrounded by an 8 foot fence. Lacking pole vaulting skills, my daughter has to walk all the way around the corner to get to the school.  But it was still incredibly convenient, and comforting.

My daughter is obviously much more independent than she was in preschool, or even during the couple of years she attended this backyard elementary school as a 3rd and 4th grader. Yet marching band camp is a long, intense week in our town.  It runs from 9-9 every day, except for an hour stop home for dinner.  That's a long stretch of time to handle all things diabetes by herself; especially factoring in heat, exercise and the stress which comes with doing something new.  As I wrote about a few weeks ago, the band directors are glucagon trained and have been familiarized with how to handle emergencies.  But there's no nurse, nobody who's looking out especially for her diabetes, nobody to turn to if she needs to double-check an insulin dose and nobody to sit with her if she's low.

I could hear the band all day from my dining room table office set-up.  This part was not always a perk. The brass section practiced the same 4 measure phrase for an hour and a half one morning while standing just on the other side of the afore-mentioned fence. But it was kind of neat to spy on the evening full show rehearsals on the back field.  No matter the entertainment value, it was nice to know that, save an hour here or there for other commitments, I was next door and able to be her diabetes support system if she needed me.

In the end, it mirrored the preschool experience.  Her proximity benefitted her just once, when she was able to make a quick stop home during the lunch break to swap out an almost-empty insulin cartridge from her pump.  Beyond that, it was comforting to know how little I'd been needed after all.


We're just a couple of weeks away from the start of high school, which I don't want to think about. So I'm reminiscing about preschool:

We chose my daughter's preschool because it was a high quality one, recommended by neighbors.  We liked that the day was weighted heavily towards finger painting, music and play but included just enough minutes of drawing letters and thinking about numbers to prepare the kids for kindergarten.  We chose it because the teachers we met on our visits were kind and looked at their students as unique individuals. We chose it because the director didn't freak out when I told her my child had diabetes. We chose it because when my daughter visited I had a terrible time getting her to leave, despite promising she'd be coming back regularly starting the next week. 

The school had one more selling point, though, especially valuable to a mom of a kid with diabetes who had never been left with anyone but grandma.  This preschool (and the church in which it was housed) was in our back yard.  There are lots of things we don't want in our back yard, but for preschool, we were definitely in the YIMBY (yes in my back yard) camp. We walked out the back door, through the yard and entered the door of school. I was quite literally a stone's throw away should a need arise.  I could (in my imagination at least) mix the glucagon while running through the yard, prepared to stab my daughter's leg as I ran into the building.  I could arrive at a moment's notice bearing vats of water, prepared to calculate a bolus to correct a high.  Instead, this convenience turned out to be mostly for my own peace of mind: I got called to the school twice because she wanted me to be with her while she sat out low blood sugars.  Otherwise she was fine. 

I probably would have chosen this preschool even if it had been across town, but I'm glad I didn't have to.  It was scary then to put her into the care of strangers for 3 hours a day. It was scary for her to have to ask strangers for help if she didn't feel right. It was scary to imagine what could happen if nobody (including her) noticed she was low and she got to a point where she needed urgent help.  It was comforting to all of us (including the school staff) to know I was around if needed.  And it was comforting to me as I sent her off to kindergarten, to know how little I'd been needed after all.

What's That?

Little kid (pointing at Dexcom receiver on my daughter's belly): What's that?

My Kid: I wear it to keep me healthy!

(Little kid swims away/ continues eating popsicle/ asks about something completely different)

This conversation has repeated itself several times this summer at our town pool.  These are usually kids who know my daughter's friends (neighbors, kids from camps they've volunteered at, relatives). These kids enjoy the opportunity to hang out with the 'big kids' for a while in the water or on the volleyball court. My daughter chose her stock answer at the beginning of the summer and so far it's worked every time.

These conversations are in significant contrast to those she's had this summer with new peer and adult acquaintances.  These people want (or the case of the band director, for example, need) more complete answers to what the devices she wears and uses are, and how they work.

Through middle school, her social circle remained fairly static.  As she starts to spend more time with the band kids, and with the people her middle school friends are collecting as they start new activities and endeavors, the explaining has begun again and the conversations have become longer.  Recently examples include, 'why do you still have to poke your finger if you wear the dexcom?' and my daughter's personal favorite, 'what's your blood sugar usually?'  These are a little harder to answer but they're thoughtful questions. 

I'm glad her friends are interested in and concerned about her diabetes.  High school means she'll be spending lots more time with her friends.  The more they know, the better.

Though the conversation is certainly simpler with a 4 year old.

Marching Band

Our meeting a couple of weeks ago with the new school nurse also included the band director. Marching band is a serious endeavor in our district. There have been weekly 3 hour rehearsals since June. Band camp week in August consists of twelve hour days at the high school. Our fall weekends are spoken for.  There will be weeks when my daughter spends more time with the band and its staff than she does with us, her beloved (and diabetes-familiar) family.

She's the first kid with diabetes to be in the band, so this is new territory. Both the director and assistant director agreed to be glucagon trained, which is great.  More important to me, though, was to teach and then strategize so that they will never have to use that training.  So we talked about diabetes.  We talked about how steady exercise (like walking and presumably marching) can lead to low blood sugar. We talked about the importance of treating a low blood sugar as soon as it's noticed.  We talked about the importance of checking blood sugar obsessively on days of important events (like band competitions) so that my daughter can use every tool at hand to aim for a in-range number at show-time.  We talked about the importance of keeping diabetes supplies accessible at all times.

The last time we had to explain and discuss diabetes in this kind of detail was at our initial 504 plan meeting at the middle school . The goal of both meetings was, of course, to get the staff to agree to allow my daughter to do what she needed to do to take care of her diabetes.  The tactic we used both time was conversation and education.  More effective than making a list of demands, I think, is to talk about life with diabetes: what a low blood sugar feels like, how it's treated, how we use the tools we have at hand to prevent diabetes emergencies, how good my kid is at taking care of her diabetes with a minimum of disruption, and how much bigger a disruption it would be if an oncoming low turned into a medical emergency.  This information, presented with a healthy dose of 'we've been doing this forever, and we know what we're doing,' seems to slowly but effectively shuffle people's preconceptions about how things should be done and lead to building consensus on a mutually agreeable plan.

The conversation with the band director led to a game plan, to be fine-tuned as events start to unfold.  She will have her meter kit on the sidelines of all rehearsals.  While the director is strict about nobody leaving the lines for any reason during practice, my daughter has permission to slip away to check if the Dexcom alarms or she's feeling low. The band director will carry glucagon and a spare meter in the first aid bag which accompanies him onto the field. At performances she will check her blood sugar during the time just before they enter the field and then hand her kit to the director or a parent volunteer as they line up. The uniform jacket has a pocket in which she can keep a roll of glucose tabs to use in an on-field emergency. The lines of communication remain open and if we have any concerns, we'll bring them up. Ditto for the band director. We left feeling comfortable with the plan.

Next up, how wear the pump and dexcom with the uniform, how to survive a week of band camp in the August sun and how to balance the busy fall band season with the first semester of freshman year of high school...