The Trip

I chaperoned a five day, four night, 120 kid high school field trip last month.

While there was a school nurse traveling with the group, and while my kid does most of her diabetes management alone at this point, I wasn't completely comfortable letting her take this trip on her own. And, perhaps more importantly, she didn't feel completely comfortable either. Our concerns included:

-The farthest my kid has ever travelled for a sleepover is 5 blocks from home. She's never been away for more than about 18 hours. Going from that level of overnight diabetes self-care to a 4 night trip over a thousand miles from home felt to both of us like way too big of a leap.

-The trip involved air travel.  My arrival for an emergency (gastrointestinal illness, first-ever glucagon use, other unforeseeable situation) would be both significantly delayed and extraordinarily expensive. Also, while I'm sure someone could have walked her through airport security, the TSA checkpoint is a minefield for people with diabetes and we were concerned about her potential need for a strong advocate should she get pulled aside.

-The trip involved five days of dining out. My daughter has never managed more than two restaurant meals in a row on her own and was nervous about not having someone there to eyeball the carb counts with her and/or help her pick up the pieces after a bad guess.

-The trip's itinerary was intense. And the itinerary didn't lie. My Fitbit tells me I walked 10 miles a day with lots of 'active' time. We rose by 6:30, earlier some days, and the kids were not required to be in their rooms until 11 p.m. There were regular transitions from place to place with few moments to stop and regroup. Amusement park rides, swimming pools, and several performances including marching in a parade were all on the agenda. We were concerned that the level of activity combined with the lack of time to stop and think about diabetes could lead to problems significant enough to slow my kid down or derail her participation. It felt important to have someone there both to remind and support her as she took the time to care for her diabetes, and to stay behind with her should she need to stop and wait out a low or trouble-shoot a high.

We decided that sending her on this trip without a parent was too much to ask of my child, the nurse, and the staff. Also, spending 5 days flipping between the Dexcom app and the 'Find My Friends' app on my phone while simultaneously trying to remember to breathe didn't really appeal. After a couple of conversations with the teacher in charge of the trip I was, despite a certain level of anxiety about chaperoning a group of high school kids, grateful to be given the opportunity to go.

On the trip I performed a variety of general chaperone duties, got to know some great kids and adults, and got to be part of a unique adventure. As far as my mom-of-a-kid-with-diabetes role, I mostly watched from a safe distance while my kid did her own thing. She talked to the TSA people on her own. She kept the Dexcom with her overnight and woke to respond to its alarms. She did her own site change in her hotel room. She counted her own carbs, asked questions at restaurants, and, on more than one occasion, sent back sweetened iced tea for the unsweetened she'd ordered. She made decisions about dosing and snacking based on her activity level. She carried her own supplies. Her blood sugars weren't perfect, but given the food and schedule they were good enough. She spent the days with her friends and I spent them with the other chaperones.

As it turned out my presence was more of a convenience than a necessity. I provided some in-line coaching and moral support as we went through airport security. I handed her extra water to combat the effect of heat on her blood sugars. I helped her with an unanticipated Dexcom sensor change when the one we put in the day before the trip inexplicably conked out. I met her at a water flume ride to hold her diabetes stuff so it didn't get soaked. I carried the glucagon, a spare infusion set and some extra glucose tabs, always close enough to jump in to assist if needed. When the large group divided and headed to different destinations I stuck with my kid, making the division of chaperones a non-issue. My presence allowed the nurse traveling with us to focus on other kids without worrying about keeping track of mine.

But now that I've seen how well she handled most everything without my help, I'm excited for her to have an opportunity to travel without me. Just maybe on a trip that's a little closer, and a little slower-paced.

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.

Worried

This whole UnitedHealthcare/Medtronic thing has put me through a string of emotions this week.  Disbelief and anger batted leadoff.  Determination followed, with a string of advocacy actions which are still ongoing.  Sadness made an appearance along with despair.  Now, the more I think about it, the more worried I get.

I'm worried on a personal level, as a UHC customer, that my kid will lose coverage for the tools she uses all day every day to manage her diabetes.  Pediatric patients are currently exempt but there's no guarantee they always will be.  I've also heard she's likely to turn 18 sooner that I'd like, and then she'll be required to switch. Then what happens?  Do we fight for an exemption?  Do we (could we afford to?) pay to go out of network?  Do we bite the bullet and learn a whole new system and try to make it work for her?  Diabetes is hard enough without having to do any of these things.  Would her blood sugar control suffer as a result?  Even if eventually we learned a new system, it would take a while and the learning curve would inevitably impact her blood sugar numbers.

I'm worried that this is just the first of the surprises in store for us.  Why not make us use another brand of CGM?  Why should they allow us to go to a doctor across the border in another state when there's one just down the street who is, on paper, exactly the same?  Does she really need to test 8-10 times per day?  Surely not...5 or 6 strips per day should be plenty.  Lab work again so soon?  Nah- just get it done once a year no matter the results. 

I'm worried because this decision represents another big step in the elimination of healthcare choices for patients and their doctors.  UnitedHealthcare is a huge insurer.  They can't be the only one going down this road when it comes to durable medical equipment.  Companies have already been down this road for pharmacy benefits, physician choices and more. Wherever we turn for insurance our choices will become increasingly limited.  And for those without the means to go out of network or pay a higher copay for a different doctor, tier of drug, or medical product, choices are disappearing entirely.

I'm worried about the 'big brother' language in the information about this agreement.  “UnitedHealthcare and Medtronic are working together to better serve people with diabetes by combining their collective resources, data and expertise," an e-mail statement from United Healthcare's corporate communications spokeswoman, as quoted in a Diabetes Mine overview of the situation reads. "This will include assessing how the combination of advanced technologies and patient support programs can improve care plans for individuals using insulin pumps... we aspire to bring a value-based approach to diabetes care that tracks clinical outcomes for UnitedHealthcare members on insulin pumps and places greater focus on quality rather than the volume of care delivered." My insurance company wants to track my child's 'clinical outcomes' to improve her 'care plan?'  Maybe we don't need to go to the doctor at all then.  See also: privacy, numbers don't tell the whole story, I thought giving consent to be part of a study was an ethical mandate, and maybe if she could choose the best tools for her those outcomes would be better and we wouldn't have to improve her care plan.

And what about innovation?  I'm worried that if there's no competition for customers, because customers don't have a choice, companies won't invest in research and development.  Until Tuesday we were keeping our eye on Tandem.  We were interested in the pump and in any technology they might develop in conjunction with Dexcom.  We're not due for an upgrade anytime soon, so these were fleeting thoughts. But the speed at which so many companies seemed to be innovating made us very interested in seriously investigating, and talking with our endo about, a variety of  products when the time came.  Now it looks like we're stuck with Medtronic who, since we don't have a choice, can provide whatever products it chooses and innovate at whatever speed it chooses.

I'm worried, in what is now broadening out to a philosophical way, about the state of the healthcare system in our country.  How, in what's billed as the most technologically advanced nation in the world, are people stuck with no choice in the technology they can use?  How, in a free market economy, can we accept losing the freedom to choose our own products?  How, in a nation of checks and balances, have we gotten to the point where giant corporations have control over our personal health? 

I'm worried.

I was grateful last night to have
chosen this technology, when I was able to use the
meter remote to deliver a correction bolus
to my sleeping child from across the room.

A Big Deal?

This Diabetes thing is a really big deal. 

Please don't make a really big deal about it.

These sentences are from a post I wrote about meeting with the nurse and teachers before my child started fourth grade.  These words were an attempt to sum up what I was trying to impress upon the school staff about having my child in their classrooms.  

I wanted them to be worried enough that they'd keep an eye on her.  I wanted to make sure they wouldn't let her forget her emergency bag for fire drills.  I wanted to be alerted when there was a change in schedule or a class party.  I wanted diabetes to be in the back of their minds always, just like it's in the back of my mind at all times.

Yet at the same time I wanted her to be just like every other kid in that classroom.  I wanted her diabetes to be as invisible as possible.  I wanted her to participate in every aspect of school life just like the other kids.  I wanted her to go through her day without being constantly asked if she was o.k. or given any special attention.

Ditto for the rest of her life.  This quote pretty much sums up our household's diabetes philosophy.

This Diabetes thing is a really big deal. 

Please don't make a really big deal about it.

We do our fair share of worrying. We are prepared with all of the supplies and information we need to keep my child healthy.  We remain aware of what her blood sugar numbers are, and how the next activity might change them.  When she's easily flustered, or lethargic, or absurdly giddy we ask her to check her blood sugar to determine whether she's low, high, or simply 13. When there's a diabetes issue we stop and take care of it. But all of this stuff remains, as much as possible, in the background of an otherwise full and normal life.

She goes to school and does her homework.  She sings, acts and plays two instruments.  She participates in sports.  She stops to buy a snack with her friends on the way home from school. She hikes and swims and kayaks.  She goes to friends' houses, birthday parties and sleepovers.  She eats out and travels.

It would be easy to let anxiety about all of the what-ifs of this disease slow us down.  It would be easy to say no to so many of these things.  

But we'd rather not make a really big deal of it.

Today's Diabetes Blog Week topic asks us to share a favorite sentence or post we've written, or to share why we started the blog in the first place.  Find the rest of these posts HERE!

From The "It Gets Easier" Files: Sleepover

My daughter came home Friday with a request.  She'd been invited to sleep over at a friend's house that night.  Could she go?

The first sleepover terrified me.

A few subsequent ones caused significant anxiety and loss of sleep.

There was one for which we had to say no.

But this one felt surprisingly easy.

It was at the home of her oldest friend, at whose house she's slept several times before.

It's just a few blocks from our house.

The mom would never hesitate to call me about anything.

She'd eat dinner at home first and then go.

The house is always stocked with plenty of pre-packaged snack choices with their easy to use nutrition labels.  Since sleepovers and snacks go hand in hand, I'll take well-labeled junk food any day.

She'd have Dexi with her, which wasn't the case at the earliest sleepovers.

So aside from considering the next day's plans and the potential ramifications of sleepover-related lack of sleep, there wasn't much to think about.

"Yes. You can go." was an easy reply.

She checked on the way to her friend's house.  She texted me at 11 with a 'bedtime' number.  She texted me when she woke up at 7:30, and at before breakfast with a carb counting question.

The half an hour or so before 11 when I was struggling to keep my eyes open until her goodnight text was long.  The 45 minutes I was awake waiting for her good morning text was longer. Overall though, it truly felt like no big deal.

Would I still say no to an overnight 2 hours away?  Probably.  But small steps are being made for both of us, and that's a good thing.

Armed (and Dangerous?)

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

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

What could I say?

What was the worst that could happen?

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

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

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

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

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

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

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

We Had To Say No

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

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

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

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

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

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

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

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

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

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

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

"No."

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

"No."

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

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

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

Helicopter Parenting

I'm one of those parents.

I'm the last one to leave the birthday party and the first one back. If I leave at all. 

If parents are allowed on the field trip, I'm signed up.

I'm on the sidelines of every softball game from pre-game practice 'til the end and I insist on stopping by the bench at least once during the game to check in.

I hunt her down at the town pool to ask her if she's o.k.

She must text me when she starts walking home from school.  If she's not home in less than 20 minutes, I'm headed up the street to look for her.

During school dances, I like to plan an outing with my husband or a friend at a restaurant across the parking lot from the entrance to the gym.

If she's somewhere without me, I'm constantly texting to check in.

I watch her while she sleeps.

People judge those parents.  (Actually, people judge just about every kind of parent but that's a topic for another day.)  'Their kids will never gain any independence.'  'Their kids will be wishy-washy'  'Their kids will have no sense of self.'

For the judgers out there, two things to consider:

First the obvious, based on the theme of this blog.  You may not know why a parent is hanging around the roller skating party or watching their child like a hawk on the museum field trip.  This disease is unpredictable, and when put in unusual situations like the ones I've described, my daughter is very likely to have issues with her blood sugar for which she needs a trained adult's help.  I hover because there's a real and ever-present risk, beyond what you can see, to my child's safety.

Second, the interesting part.  The same words have come up at every teacher conference since preschool. My daughter is described as responsible, self-aware, and self-confident.  How did this happen with me hanging over her for her entire life?  I can't say for sure but I try to strike a balance when I can. When it's safe, I encourage independence.  She walks home from school with a friend and her cell phone.  She's been using a paring knife since she was 8.  She attends sedentary birthday parties with uncomplicated food by herself.

When I feel, for her safety, that I must hover I try to be as invisible as possible.  I don't roller skate with her (to be fair, there's more than one reason for this decision). I stand back while she hangs with her friends on the field trip. I'm at the umbrella table with the best view of the pool, but I'm usually reading my book.  She knows that I'm there to help her with diabetes, not to be incessantly involved in the minutia of her life.

I often wonder if I'd be one of those parents if it weren't for diabetes.  It's impossible, of course, to know. I've been hovering over her since before she could walk.  It will get harder as she gets older, and I'm grateful for today's technology which makes hovering from a distance much easier.  Hopefully I'll continue to be able to strike the balance between being available to help and letting her spread her wings.

Research

It was tempting to rip the packaging open last Wednesday and click-click a Dexcom sensor into my daughter.  My cautious nature stopped me.

In fact Dex is still nestled in its packaging, though not as tightly as it was last week.  

I've taken it out and set the time, set up the alert parameters, and played with the different sound choices.

I've read through the start-up info and viewed the online tutorial.  

This is where I keep getting stuck:

This terrifying looking contraption will insert the sensor onto and underneath my daughter's skin.

Every time she looks at it, my daughter says, 'that thing's just scary looking.'  It's not really said with terror, just as a matter of fact. And she's right.  

I spent some time yesterday trying to alleviate my apprehension about this process by typing 'dexcom sensor insertion' into my trusty search engine.

Guess what?  It worked.

This video from Diabetic Danica and this one by One Happy Diabetic were the best for what I needed, which was to see how to use this thing on a real person.  I needed it explained step by step in a peer-to-peer sort of way. Watching multiple videos taken from multiple angles was helpful too.  One person, for example, made it very clear how to tell if the transmitter is clicked into place perfectly by checking the two little tabs in the back. Others showed helpful adhesive advice. This one from Arden's Day was uniquely great since it shows a dad putting it on his child.  It's the one I'll show my daughter before we begin.

Blogs were helpful too.  Bigfoot Child Have Diabetes' kid is in my kid's age range, and she's funny, so her recent dex experience was helpful to review again.  Diabetic Advocate's  tips and tricks were clear and practical.  As always,I consulted  D-Mom Blog and SixUntilMe too.  

I read and watched and skimmed countless other resources, and every one had something helpful or reinforced the key things to remember as we start up this week.  

So in a nutshell, 'Yay Diabetes Online Community!'  Advice from the manufacturer and our medical team is, of course, paramount.  But seeing and reading about real people using this gizmo in real life was the extra piece I needed.  My confidence has been built.  Thank you!

When Is Enough Enough?

After our last endocrinologist appointment at the end of the school year, we decided it was time to look into a continuous glucose monitoring system.  We also decided that we'd wait until fall.  This decision honored my daughter's concerns about having things stuck all over her during bathing suit season as well as my concerns about keeping things adhered to her during the season of water and sand. 

At the end of the summer we visited the orthodontist.  The idea of some kind of braces sometime in the future transformed into definite braces this January.  These won't be just run of the mill braces.  We left the appointment understanding that she will be chewing with only her four back teeth for between eighteen  months and two years, and that she will be wearing head gear, thankfully only at night.

So here she is...about to turn twelve.  She's growing quickly, and at that adorable-only-to-parents awkward, gangly stage. She already has an insulin pump toggled to her at all times.  She already has to carry around a bag full of accouterments everywhere she goes.  Now we're going to fill her mouth with metal, make eating anything coarser than applesauce a challenge and attach head gear to her at night.

Can you see why her enthusiasm about the CGM is waning?  Tacking on another bionic piece and adding another item to her already overloaded purse doesn't sound so appealing, no matter the benefits.  Lets add that it will probably beep at the most humiliating times.

Can you see why, if she knew anything about 70's television, she would be asking why we want to turn her into the bionic woman? 

We'll still proceed with the CGM.  Once those crazy braces go on, it will probably be even more important to keep a closer eye on those blood sugar numbers, at least until she gets used to eating with them. 

But from a psychosocial perspective, I'm reluctant.  Everyone's awkward at 12.  How much equipment can we adhere to her before the balance tips from awkward to crazy robot girl?  When is enough enough?

Bits and Pieces 3

 It's another in an occasional series of posts collating and commenting upon some interesting (at least to me) diabetes links:

Animas has submitted for FDA approval for their Animas Vibe for use in the U.S.   The news is summarized here on Diabetes Mine. This product sends data from the Dexcom G4 continuous glucose monitoring sensor directly to the insulin pump, eliminating the need to carry an additonal receiver.  Also notable in the article is that Dexcom has submitted for FDA approval for pediatric use of their G4 product, hopefully greatly reducing the red tape families must currently weed through in order to obtain it for their children under 18.

While our family loves to travel and see new things, the airport experience has often left much to be desired.  If you haven't done so, please take a moment to sign this petition to standardize TSA screenings for diabetic persons using wearable self-monitoring medical equipment.  A look back at a couple of our family's airport experiences can be found here.

It was fascinating to follow Anna Floreen's experiences wearing a Bionic Pancreas.  There are seven pieces up on Glu, the first of which is linked here.  I'm a realist.  I know that the research process moves slowly and that the FDA approval process for even the simplest of things is grueling. Yet reading about someone out in the world wearing equipment which eliminated her need to actively manage her diabetes gave me great hope. One of many take-aways for me was that while this technology will not constitute a cure for diabetes, it will be life changing.  Yes, there will still be physical baggage of sites and technology to carry around.  Yet the mental baggage will be so much reduced it made me wonder what fascinating things I would think about should technology take over so much of the diabetes drudgery.

Some of these developments seem, perhaps, more significant than others.  Yet the bionic pancreas won't be completely anxiety-free if we can't get it through airport security without a fight or a panic attack.

Survival

A recent school trip involved a variety of outdoor activities and team building exercises.  As a parent chaperone on this overnight adventure, I had the opportunity to reflect on some of the programs while trying to keep my feet warm in the great outdoors.

One of the classes was called 'survival.'  The activity was to build a make-shift shelter from branches, insulating it with snow and leaves, but first a conversation took place.  What do we need to survive?  How would we obtain the basic necessities if lost in the woods and needing to camp overnight?  What should we keep with us when hiking; 'just in case?'  The kids learned about water purification tablets and foraging for food.  They learned about the rule of threes, which states that (loosely speaking) one can go without air for 3 minutes, without water for 3 days and without food for 3 weeks. 

There I ironically stood, weighted down by the backpack I had been carrying since we'd arrived.  It contained 2 juice boxes, 2 packs of cheese and crackers, 2 water bottles, 2 tubes of glucose tabs and whatever candy happened to remain in the meter case when we left home. It also contained the meter, 2 vials of test strips, a lancet, spare batteries, and glucagon.  There was a large stash in our cabin from which to restock.

For this particular class within sight of the dining hall, this collection of things might have been excessive.  For the 2 hour, 3 mile hike up the mountain, it could have been life saving.

For my daughter, no matter where she is, every hour is a survival challenge.  Insulin, food, water, exercise and more must be carefully coordinated.  Our goal is to balance these for her optimal health, long life, and sense of well being.  Yet without constant focus, things can get out of kilter quickly, providing a real threat to her survival. 

Without insulin, she will not survive.

Given too much insulin, she will not survive.

If she spends years with consistently high blood sugars, she will not survive as long as her peers.

Imagining an unlikely night lost in the woods is not a prerequisite to considering what my daughter needs in order to survive.  We must consider those needs every day and every night of her life.

Worry

The tragedy in Newtown CT and its aftermath are heartbreaking.  There are difficult and complicated questions to be addressed.

Yet, for some of us left behind, one of the repercussions feels familiar.  It's the anxiety of dropping a helpless child off at school, in the care of others.  Those of us with children with diabetes (and countless other medical, emotional, or mental health needs) are particularly familiar with this feeling. 

So this morning, as I dropped my daughter off at school, unable to not think about Friday's terror, I summoned some coping skills I've used before. 

I kissed her goodbye, told her I loved her, and confirmed our plans as to how and when she will return home.

I watched her cross the street with the crossing guard and walk to the school doors. 

Then I brought to mind the adults she will spend the day with, reminding myself that I trust them and that they have her best interests at heart.

Each day, though some days more subconsciously now, I remind myself that the staff at school know how to take care of her.  They know about her medical issues and how to address them.  There is a plan in place for her care.  Beyond that, her teachers and other school staff are concerned about her as a growing and maturing individual and do their best to help her in any way they can.  This is, of course, their job.  But from what I see from the outside, she's been fortunate to have teachers and other staff members who take it an extra step.

By extension, I must then trust that in all other ways her school is as safe as possible.  There are plans in place for many types of disastrous situations.  Communications from the school district say more plans are being made.  She is in the care of good and kind people who have their students' best interests at heart.

There is no way to be sure what each new day will bring.  Potential hazards lurk around every corner.  All we can do is prepare for foreseeable eventualities as best we can. Then we take a deep breath, and send our children off into the world, trusting those in whose hands we leave them to do their best to keep them safe.

It's Summer Music Time Again

Our town's summer music started this morning.  So it seemed appropriate to revisit this post from last year:

This is the first week of my daughter’s summer music program. She’ll be at our town’s high school five mornings a week, beginning to learn the clarinet. The program is run by a couple of our town’s music teachers. Kids receive a daily group instrument lesson, sing in a chorus, and take a music theory class. As they get older, they can also participate in band, jazz band, and a musical theater production.

My daughter began participating in the program last summer. She had started piano lessons during the school year, and was developing a real interest in music. It seemed only logical to give her this opportunity to immerse herself in music for the first month of her summer. She loved every minute of it, as I’m sure she will this year too.

Here’s the thing: summer music doesn’t have a nurse, or anyone who acts as a nurse. They probably have a stash of band-aids somewhere, but that’s where any interest in medicine ends. So it was with a pit in my stomach that I made the decision to send my child with diabetes to this program last summer.

The first day she went last year, I packed her up with a cell phone, meter, juice box, diabetes bracelet, and a note in her backpack with every contact number I could think of. I walked her in the door, and spoke with the hall monitors. I’d already made sure the director was aware and would tell her teachers. I gave her a kiss, said goodbye, took a deep breath, said a prayer, and went home. For two of the longest hours I’ve ever spent.

The story has a happy ending. When I returned, she was alive, upright, and happy. The rest of the weeks went the same way. She checked her blood sugar as needed, and called me if it was off. She called me more, however, because she’d forgotten things and wanted me to bring them to her.

When she was diagnosed with diabetes at 13 months, my daughter was helpless. She needed an educated adult with her 24 hours a day, 7 days a week. It seemed for many years that this would always be so. It is with relief, and pride, that I continue to watch her grow into a responsible child. I realize that not all 9 year olds are capable of taking on this kind of responsibility, nor should they have to be.

The decision to send her last year was a difficult one. There was certainly less of a safety net for the many diabetes “what-if’s” racing through my mind. On the other hand, I knew I would be only a few blocks away. I knew she took on these responsibilities well at friends’ houses. I knew that an extreme diabetes emergency was extraordinarily unlikely. Most importantly, I knew that she really wanted to live and breathe music for a couple of hours a day in July. So the answer had to be “yes.”

This year, the decision was easy. Another hurdle has been crossed. Now we'll see how things go with the clarinet!

Each of these steps towards diabetes independence results in a few more grey hairs. It's funny to compare how worried I was the first time she participated in this program to how I felt this morning sending her off with her meter and a snack.  Each year brings new situations she must handle independently.  I hope she continues to approach them with the same level of responsibility.  Meanwhile, any recommendations for my greying hair will be welcomed.