Just Another Morning

6:15     Teen crawls out of bed later than is ideal. Finds nondairy yogurt, granola, berries.

6:18      Checks blood sugar. Programs breakfast bolus.

6:19      Discovers pump's insulin cartridge is almost empty after bolus. Implores mother to fill
             a new one.

6:20      Mother inhales cheerios, chugs coffee, gets dressed, packs lunch.

6:40      Mother listens to stream of consciousness commentary on teen's outfit, hair, and tonight's
             potential homework while filling an insulin cartridge and priming the pump.

6:59      Teen is delivered to school.

7:26      Text: 'I forgot Dexi.'

7:27      Text: 'Unless you put it in my bag?'

7:45      Mother (belatedly) texts back:  'Nope. It's here on the kitchen counter.'

7:47      Text: 'Oh well.'

7:55      Text: 'You wouldn't drop it off for me would you?'

7:56      Mother takes deep breath and decides that, yes, she would (and should) drop it off.

7:57      Text: 'I'll drop it off by 8:15.'

8:13      Mother arrives at school. Mother who is usually happy that school is secured as tightly as
             Fort Knox is not happy today. Mother is buzzed into vestibule with table on which to leave
             forgotten items for kids to pick up. Mother is uncomfortably holding Dexcom thinking, 'I'm
             not so sure about leaving this here' a when kind secretary appears behind large (bulletproof?)
             window in vestibule.

8:15      Mother says, 'Hi. This is a medical device- I'm not sure I want to just leave it here. My
             daughter knows it's coming and will pick it up between periods.'

8:16      Kind secretary says, 'Here- let me take it. I'll give it to the nurse.' Secretary jimmies open
             a pass-through slot like one might find at a shady check-cashing joint, and takes Dexi.

8:17      Mother thanks secretary and leaves.

8:18      Text: 'Gave Dexi to secretary who will give to the nurse.'

8:50      Text: 'Ok I will go grab it now.'

9:29      Proof arrives, in form of blaring cell phone alarm, that teen is in possession of Dexcom: 

 

9:42     Text: 'I'm low so I'm not playing gym.'

 

And so on and so forth...

 



Gym Win

Out of all the anticipated diabetes challenges of high school, gym has been the biggest thus far.

Marching band's 14 hour days, including an outdoor week in the August heat? We handled it.

New nurse? She's great.

An intense and stressful academic schedule? Intense and stressful, but managed.

Gym? A disaster since day one.

I wrote about it in the fall. Gym is always in the morning but that's where the predictability ends.

Gym class happens three out of every four days. At 8 or 9 or 10 a.m. Some days are 'fitness days' with sprinting or other heavy cardio. Some days they play volleyball which my kid enjoys playing at a moderate pace. Some days feature floor hockey, during which the senior boys apparently dominate the puck and give nobody else a chance to play. Some days gym is preempted by 'peer leadership,' which can involve either active or sedentary group bonding activities. All we can be certain of is that the whole thing is totally unpredictable. Therefore, adjusting basal rates didn't help. And changing the breakfast bolus was useless. Our next best hope was this:



Squeezy Applesauce!

Toddler applesauce has greatly reduced trips to the high school nurse's office. It's fifteen carbs provide slightly more nutritional value than a straight juice box. It's easier to consume while changing into one's gym clothes than a clementine or a handful of grapes. It's even sort-of fun? And, most importantly, it's working.

She makes the decision whether to consume a pouch before gym based on three factors: what her blood sugar currently is (usually based on the Dexcom, inclusive of arrows), what the day's anticipated activity is, and what time it is (she's more likely to drop fast if there's still a bunch of breakfast insulin on board). There are occasional problems, like when an anticipated floor hockey day becomes an unannounced outdoor running day due to good weather, or when she's had an unusual breakfast and the 'insulin on board' factor is harder to predict. But overall, this tactic is (thus far...knock on wood...fingers crossed) a winner.

Also a plus? We won't be running out of squeezy-sauce anytime soon due to today's 5/$9 sale at the grocery store. She's not sure about the new 'applegrape' flavor, but if you're sucking it down in three gulps, how much does flavor really matter?

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.

Respectfully,

Us

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.

Locked

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.

Locked.

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.

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...

Next...

My daughter is going to high school next year (eek).  So among many anxiety-inducing steps we met the new nurse.  We also met the old nurse, who is retiring but orienting the new nurse.

It was a familiar routine.  By my count, these were the 8th and 9th school nurses we've met in as many years. Not including, of course, countless substitutes. I'm incredibly grateful that while we've definitely clicked more with some nurses than others I've always left these meetings feeling comfortable that my daughter would be in good hands.  These people have done everything we've needed them to do to support my daughter's care in the nurse's office. They have also been proactive in communicating and planning for my daughter's diabetes needs with staff  throughout the school and at school-based activities. Taking a step backwards, I'm very grateful that we've always had a full-time school nurse at all, since so many schools do not.

The conversation about the school year gets shorter every time, as my daughter takes on more and more of her own care.  We were reassured that teachers would be informed of my daughter's diabetes, alerted to symptoms of low blood sugar, and even given a roll of glucose tabs per classroom which, as far as I know, is a step beyond what took place in the middle school.  She'll continue to go to the nurse when she is low, because it's important for her to be somewhere safe and because it's also important for her teachers to know she's not absorbing the material being presented or that she's unable to adequately complete the classwork, quiz or test of the day.  She'll also visit if she's high enough that she feels unwell or needs to troubleshoot the cause of the high blood sugar.  Which goes hand in hand with visits for pump alarms, and emergency site change needs.  In August we'll deliver our bag of strips, glucose tabs, juice boxes, a back-up meter and more so that the nurse's office can also serve as a source of back-up supplies.

The biggest topic of conversation about the school day involved lunch.  My daughter decided that she'd rather handle lunch on her own and only come to the nurse's at lunchtime if there's an issue (she's low, runs out of strips, can't figure out the carbs). She has handled lunch by herself at her summer music program for years, and does her own mealtime routine at home without help.  The other motive for this request was a desire to maximize her time. Our high school's schedule is designed to accommodate club meetings and extra teacher help during lunch periods, to allow a little study or library time, or to provide a solid break in the day for kids who participate in both before and afterschool activities.  With a hefty fall extracurricular schedule, every spare moment during the school day will be valuable. Taking care of lunch independently was, apparently, how other kids have handled diabetes at our high school in the past, so this plan was not only allowed but encouraged. The philosophy (which is refreshingly in tune with the day-to-day realities of living with T1D) is that gaining self-sufficiency is an overall high school goal and that diabetes self-sufficiency is at least as important as bringing the right materials to class. Support and help are available if she needs it but she does not have to come to the nurse daily.

Woven into these conversations were threads of humor, helpfulness, and welcome.  My daughter was reassured that she is welcome in the health office at any time. It was clear that if she changes her mind on any of the plans we made that nothing is written in stone.  While a nurse with enough knowledge to use glucagon if needed and to educate the staff about diabetes is important, what's more important to us is that the nurse is someone my daughter feels comfortable asking for help when she needs it and someone who is good company to sit with while she comes up from a low. 

We're grateful to have one less thing to worry about in the fall.