The Appointment

Endocrinologist appointments are important touchstones in life with diabetes. It's a quarterly or tri-annual check-in at which months of diabetes are assessed as a whole.

We went into the city for my daughter's appointment yesterday.

There were no extraordinary clinical components to the visit except that she's now officially taller than me. Otherwise it was a run-of-the-mill appointment with conversations about adjusting basal rates and when to get lab work done again.

What distinguished this appointment for me was subtle but significant.

A few minutes into the conversation I noticed two things.

I had said nothing since greeting the doctor when we walked into his office.

I was sitting back in my chair while my daughter was on the front edge of the chair, leaning towards the doctor's desk, and talking with him about her diabetes.

She's been going to the endocrinologist since she before she could walk.  Over the following 16 years, she's answered a few more questions and engaged in a little more conversation each visit, but I've always taken the lead. Until yesterday, when I'm pretty sure she did.

I had not asked her to be more involved, and I'm not even sure she was intentional about being such a big part of the conversation. I tend to think it was more of a natural progression. She's come a long way since I had to carry a diaper bag full of toys to entertain her through every appointment!

Slowly but Surely

Our household diabetes policy (yours may vary) has been for my daughter to take on diabetes responsibilities as she feels ready. The understanding has been that while we do not expect to live in her college dorm with her, she should not feel rushed. Every diabetes task will ultimately be hers, for the foreseeable future.  For now, we're here to help.

Slowly but surely over the past sixteen years, one or two things at a time, my daughter has taken over her own care: blood sugar checks, carb counting, then insulin pump site changes, and so many more in between.

The Dexcom was at the center of the two lingering exceptions.

Because of the awkwardness of the G4's insertion device, I continued to assist with putting in a new sensor every 7 or so days. She did it once, to prove to herself that she could in case it failed while she was traveling without me, but it was super-awkward and I was happy to keep helping. The insertion device for the G6 is a much easier to handle one-handed push-button device. My daughter inserted the first and second ones with no problem. It's easy and nearly painless, she reports, though the spring-loaded insertion contraption is alarmingly loud.

The second area of responsibility we've recently relinquished (to some extent) is overnight diabetes care. Until the G6 arrived, the Dexcom receiver remained on a parent's bedside table each night. We got up to deal with its alarms while my daughter slept, or roused herself briefly for juice. That routine, of course, followed years of setting 2 a.m. alarms for fingerstick checks.

The new plan is that my daughter keeps her phone, and the Dexcom receiver, on her bedside so that she can awaken to deal with the alarms. She started with just the phone, but the Dexcom app alarms were not loud enough to consistently wake her (though they woke both of her parents in the next room). She's added the receiver, which she keeps on the bed with her to feel its vibrations, and so that two alarms are blaring at once. She still does not consistently wake to the alarms, while I, of course, still do. But things are improving. She did wake up and treat a low this week without my hearing anything, which was good news. And the alarms are diminishing after the Thanksgiving leftovers are gone, and as we use the Dexcom data to work on keeping numbers more consistently in range...which is the ultimate goal.

It's bittersweet to watch my kid take on these responsibilities. Yes- by all rights they're hers to deal with and it's important for her to practice with the safety net of mom and dad around to help. But how I wish she didn't have to.

Still Lending a Hand

Our family has experienced several turning points over the years when it comes to my daughter taking on increased responsibility for her care.  To us, each of these has been a big deal.  She can check her own blood sugar!  She can troubleshoot enough to be left alone at a birthday party!  She can count her own carbs at a restaurant with friends!  She can change her own site!  She can go away overnight! The list of these moments is long.  For some families, this list doesn't exist at all because their kids were diagnosed at an age when they naturally took on all or at least most of these tasks independently from the start.  For others of us, it's been and continues to be a long incremental journey.

Sometimes I feel weird, or even guilty, that I still help my daughter with her Dexcom sensor insertions or that until a couple of years ago I did almost all of her site changes. The little voice in my head nags,  'She's a teenager for goodness' sake- she should be doing all of this by herself.  Other kids are doing it by 8.'

But if I step back and reflect on how we got here, it feels okay. 

When she was diagnosed at 13 months old, we did EVERYTHING.  Obviously.

Then around 3 she wanted to help...as many 3-year-olds want to do.  It's the 'I can do it by myself 'age and we took full advantage.  She learned to use the lancet and apply blood to the test strip.  She learned to read the number on the glucometer out loud.  She learned to gather all of the supplies for her site changes.  She was in charge of separating the various wipe packets which come in perforated pairs of two. She also spent quite a bit of time taking care of the diabetes needs of her dolls and stuffed animals who, occasionally, also had to count carbs at tea parties, check their blood sugar or drink juice boxes.

By the age of 5 she knew how to use her insulin pump, with supervision and an adult counting the carbs. She knew to drink a juice box if her meter said she was low and to wait 15 minutes and check again before she could go back to what she was doing - again, with an adult around to support her.

In early elementary school she learned how to count and bolus for a simple snack like goldfish crackers or pretzels so that she could go to a friend's house after school.

If she WANTED to do it, we figured out how to make that happen.  If she didn't want to, we didn't push. 

She now, of necessity, knows how to do it all. And yet, still, I help if asked. Diabetes is a huge undertaking. For now, the least I can do is give her a hand filling the insulin cartridge if she has to do a site change in a hurry, or be an extra set of hands for the awkward Dexcom insertion.  She's going to have to do it all by herself soon enough.

I Almost Asked

My daughter's Dexcom G4 sometimes chooses to stop 'sharing' these days, making its receiver the only source of information. When this happens, as it did this week, I try to take a quick peek at the receiver once in a while, just in case we need to talk about tweaks in the basals, carb ratios, correction factors and such.

I looked at the receiver this morning - it was on the table after breakfast - and yesterday morning showed a spike, reaching the top of the graph, and hanging there for an hour or so before coming back down to a reasonable range by noonish.

My initial instinct was to ask something along the lines of, 'What the heck happened yesterday???"

Then I realized three things:

1. I already knew what happened  yesterday. Her grade had a delayed opening because of standardized testing at the high school. She had been out to breakfast with friends and she ate eggs and toast and potatoes- which was a better choice than pancakes - but she clearly either under-guessed on the potatoes or forgot to bolus until too late.

2. The evidence showed that she'd picked up on her mistake, corrected her blood sugar, and gotten herself back in range by lunch. She had solved the problem by herself.

3. Nit-picking is counterproductive. She'd just get defensive if I brought it up, no matter how much I tried to turn the conversation towards 'all's well that ends well.'

So I didn't ask. 

Thankful

Unlike last year's expedition, which could have been subtitled, 'airplane flight to 5 days of walking in chaotic environments,' this year's music department trip seemed like a manageable adventure. It was a four hour bus trip to spend 3 days and 2 nights in and around an interesting city. Because of the presence of a great school nurse, concerned chaperones and staff, and friends who have my daughter's back, we decided, with my daughter, that she'd travel without a parent. Here's the note [with awkward edits for privacy] I sent to the band director on the Monday after this year's trip:

Just a note to say thanks for a great music trip.

 

What a nice opportunity it was for the kids to attend Thursday's concert.  [My daughter] was especially excited to see such an incredible piano concerto performed. 

 

Between the concert, the chance for feedback and work on the concert band's competition pieces, and a fun and interesting collection of places to explore with friends, [my daughter] had a terrific time.

 

We're always happy to be involved in the life of the band, including chaperoning. But we're also grateful for the steps you and [the high school] as a whole have taken to allow [my daughter] to participate fully and safely without us present, encouraging her growing independence both diabetes-wise and beyond.

 

Looking forward to hearing tomorrow night's performance!

I mailed a similarly thankful note to the nurse who accompanied the kids on the trip. My daughter was in touch with her regularly via text, and they always knew where the other was. The nurse carried a little bag (within her giant 'nurse bag') with glucagon, glucose gel, and a spare meter set. Her assistance was never needed.

These notes reflected my acute awareness that my child was fortunate to have such a fun and positive trip.  There are other kids who are allowed to have these kinds of experiences but with much less quality support. And there are kids who are told (illegally but indisputably) that they can't participate at all. For three days Dexcom Share was my most-used app. The texts about the frosted flakes for breakfast and the bus full of rice crispy treats were cringe-worthy. But mostly, I'm thankful.

No News

 

A couple of days ago, my daughter's Dexcom stopped sending data to her phone. So therefore her phone has stopped sending data to my phone.

 

Because we have a Dexcom G4 model with a receiver she keeps with her at all times, and because this receiver is still streaming her data, this is really no big deal. She never looks at her data on her phone, only on the receiver she wears on her person, so she was unaware, until I informed her, that the phone communication piece had stopped working.

 

Interestingly, I also did not notice for over 24 hours.

 

We know how to fix this problem. It's a glitch which happens occasionally and is repaired by disconnecting and reconnecting the Bluetooth connection between the receiver and my daughter's phone. It takes several minutes and sometimes a couple of tries, but it's not a big deal.

 

Yet now it is Friday and I still have "NO DATA." This is not a surprise, since everything about the past two days is a complete blur. In addition to the usual school schedule there have been 3 or 4 hour evening band rehearsals, a stage crew meeting for the fall play, the usual mountain of homework, and I think she managed to eat and sleep.

 

Having NO DATA at my immediate disposal has been interesting. I don't miss the alarms and the concurrent worry. I am not feeling anxious about missing the highs and lows, trusting that my daughter is handling any issues on her own, and knowing that she would have informed me had there been any major problems requiring multiple juice boxes or site replacements. We're still using the receiver in our bedroom at night to alert us to any nighttime blood sugar excursions, so I would have been involved in any overnight issues anyway.

 

No news is not all good news, though. What I do miss is being able to look at the big picture. One peek a day (or noticing alarms at the same time every day) provides an opportunity to fix problems in a timely manner. And, while I'm the third string back-up for any marching band emergency, I do miss being alerted to any significant blood sugars while she's at those nighttime rehearsals.

 

My daughter has a quiet evening tonight before the last big weekend of marching band. She'll need to get some homework done and practice the piano, but she'll get to eat dinner without homework in front of her, and maybe even watch a favorite t.v. show.

 

And she'll find a few minutes to reconnect her Dexcom to her phone, just in time for what promises to be a chaotic weekend diabetes-wise.

 

Cue the alarms.

 

 

The Drop-Off Line

For a couple of years now my daughter's had a little inventory she's run through before leaving the house for almost anywhere, except, for some reason, school:

"Phone. Meter. Dexi." If one of them isn't on her person or in her bag, she'll go get it. If she's got it all, she heads out the door.

On day seven of school I received a text: I forgot Dexi. The Dexcom receiver was, indeed, still sitting in the kitchen.

Day 10 brought a similar text, except she'd also forgotten the meter:

The school is only a couple of blocks away- a two minute drive at the most. Unless it's 15 minutes before school starts. Then it's an excruciating crawl with both vehicular and foot traffic clogging every route and intersection. Which is why, no matter the weather, and even though it's essentially a straight uphill climb, my daughter walks to school.

Accessing the school after classes begin is, as I learned last year when dropping off the Dexcom receiver, it's own kind of challenge. I was buzzed through two sets of locked doors and talked with a couple of school personnel, after which my daughter had to run through the nurse's office between classes to pick up the missing item.

So I drove to school, both times, pulling into the drop-off line with my flashers on while she ran out of the building to take things from me through the open car window before the first bell. She was efficient both times, but I imagine the people behind me still looked on with a combination of confusion and irritation.

While the texts may look terse in the photo, my daughter was, in person, both upset she'd forgotten her supplies, and incredibly grateful that I could drop them off. There's a spare meter at school, which she could have grabbed from the nurse's office if she had needed to. But the absence of the Dexcom info she's used to relying on made her uncomfortable, especially in the first week or two of school when the routine is still new and is therefore messing with her blood sugars.

"Phone. Meter. Dexi."

The inventory is now part of our morning farewell routine. If she doesn't say it, I do. One of the perks of our current house is that I, theoretically, should never have to withstand the ordeal of the morning drop-off line. Nobody should have to do so without a child in the car.

Glucagon Training

A couple of weeks before my daughter went on the five night youth group trip I met with the chaperones to train them in glucagon use, and to talk about diabetes concerns for the trip. These are people I know well, which has a great deal to do with why my daughter went on this trip without a parent in the first place. They were eager to learn how to help my daughter have a successful first trip away, and how to react should an emergency arise.

We gathered at a table.

"Epi pens make me a little nervous," my first chaperone friend said.

"Well, wait until you see this thing," I replied with a wry smile.

He was, indeed, humbled by the sight of the glucagon kit.

"Here's the deal," I said once it was open in front of us on the table, "We've never needed to use this. We've never come close to needing to use this. You guys know her. She's responsible about her diabetes and she's self-aware. She's got the continuous glucose monitor which alarms when her blood sugar goes low. But because diabetes can be unpredictable, there's an infinitesimal chance you'll need this, so it's important to us that you know how to use it. And besides, once you see this, I'm certain you'll listen even more carefully to the rest of the ways I'd like you to look out for her." Cautious smiles had returned.

I walked them through step by step with an expired kit, and then one chaperone physically set up my second expired kit while the other gave verbal directions. They seemed to get the gist, and learned to look for the pictographs inside the packaging for clues. In the end, I reminded them that the first step would be to call 911 and that if they were flummoxed by the kit, the fact that they knew what it was and where it was would be key for the EMS workers.

After striking a healthy fear of glucagon into their hearts, we went over the very simple things a 15 year old kid who's out of her element might need their help with in order to avoid disastrous low blood sugar:

-Someone to hang back with her if she needs to wait out a low.
-Someone to ask her if she's okay if she's spacey or uncharacteristically emotional, which are the primary signs of low blood sugar for her.
-Someone to stand up for her if someone gives her a hard time about stepping aside when she should be doing her volunteer job, or eating when she "shouldn't be," or looking at an electronic device when the kids have been told not to.
-Someone to get up and nudge her if a dexcom alarm is going off in the middle of the night.
-Help getting supplies should she somehow blow through the snacks, juice and glucose tabs we packed.
-Support if (when?) diabetes causes missed opportunities or unpleasant experiences along the way.

In the end they didn't use the glucagon. In the end, it may not have been necessary to show them how to use it at all. But in the end the glucagon training led to a much more important conversation about ways to keep her safe. Which made all of us more comfortable.

The Trip I Never Thought Could Happen

My daughter is currently in a city 4 hours from here without a parent.

This is it: the moment I thought would never come.  No way. No how. She would NEVER grow up. At least not diabetes-wise.

I'm stunned that it's happening and even more stunned that I'm completely okay with it.

I was welcome to go on this trip- a service trip with the church's youth group. But this seemed, for several reasons, like the ideal opportunity for her to spread her wings.

Why now?

-She's as ready as she'll ever be. She proves it every day. She especially proved it on the high school's spring music department trip which I, of my own free will, volunteered to chaperone so that I could be there 'just in case.' There was no 'just in case.' She did it all by herself while I shared a room with a (as it turned out, perfectly nice) stranger and worried endlessly about the whereabouts and safety of the rest of the kids.

-This trip is relatively close, just a four hour drive should I need to get there. And it's in the middle of a major city so there are hospitals, ambulances and pharmacies readily available should she need them.

-It's a small group: 6 kids and 2 adults. One of the kids is one of my daughter's closest friends. These kids genuinely like and care about each other. The chaperone to kid ratio is pretty great too.

-Speaking of chaperones, if I had to pick two people to send my kid away with for the first time, these two adults would be at the top of my list. Their willingness to take this on was, of course, one of the essential criteria. They're also responsible, concerned, and willing to learn everything necessary to support my daughter. And, probably most importantly, my daughter trusts them and likes them and will therefore include them in any issues she's having- diabetes-wise, and otherwise too.

-Lastly, and probably most importantly, my daughter was willing to go without me. That's been the bottom line for every big step towards diabetes independence we've made thus far. This decision was no different.

So far so good, considering the fact that diabetes does not travel well. One HIGH with double up arrows on the Dexcom required an emergency site change. An 82 at bedtime required some thinking about what to eat in order to make it until morning (a cherry Nutrigrain bar with no insulin- and yes, she made to morning). Otherwise she's guessing carbs as well as I could, remembering to carry her sack of dia-stuff, and keeping an eye on the Dexcom. I'm grateful to have the Dexcom share so I can check in when I'm worried, but I'm checking less than I thought I might.

Meanwhile she's having a huge adventure, both with the volunteer projects they're doing and with the sightseeing opportunities they're squeezing in whenever they can.

It's hard to wrap my head around how we got from a teeny, tiny person with diabetes who was totally dependent on me for every aspect of her care to this particular moment. It wasn't one giant step. It was a million teeny, tiny steps and suddenly, stunningly, here I sit over 200 miles away. And, inexplicably, I'm really pretty okay with it.

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.

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.

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 Little Fear Can Be A Good Thing

I usually drop my daughter at her summer music program after helping make her lunch and gather her belongings for the day.

Last Friday I had to leave the house early and so she chose to walk the few blocks to the program rather than arriving half an hour before her first class and having to wait around.   No big deal, I thought, and a great opportunity to be independent.  When I left, she was eating breakfast, and her lunch was made.  She had half an hour until she had to leave, plenty of time to get her stuff together and get out of the house. 

She texted me before 9 to let me know she'd arrived at her destination and we continued on with our busy days.

Then at 11, my phone buzzed.  Surreptitiously taking it out of my pocket for a glance, I saw this:

'I'm such an idiot I don't have the meter.'

Meanwhile the Dexcom sensor had breathed its last at 9 the night before and we'd decided a free day would be okay before replacing it.

The next text read:  'I felt low so I drank my one juice and now I'm eating and I'm gonna do like half my lunch and then I'm going to the store to buy a coke or something in case I'm low again.'

Fifteen minutes away and responsible for a group of 7 children until 12:15, and then expected to stay where I was until at least 1:30, I texted back,

'Sounds good.'

As it tuned out, she did absolutely the right thing with the lack of tools at hand.  The low or low-ish she treated was likely real.  When she bolused for lunch she factored in the amount of dancing she expected to do during the show rehearsal.  As the afternoon wore on she thought often about how she was feeling. She realized, should she need it, that in addition to the soda she had purchased she had access to candy usually awarded as prizes for the daily trivia contest. When she got home her blood sugar was 79. 

With some significant inconvenience to myself and others I could have left what I was doing to get a meter to her.  Instead I let her wing it until her program was over for the day.  Was it the safest plan?  No.  If I had it to do over again would I bail her out?  I don't know. But when she got home, she said this:

'That was scary being without the meter.  I don't think I'll forget it again.' 

Sometimes a little fear can teach a very important lesson.

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.

The (Im)possible Field Trip

Something caught my eye as I skimmed through the school communications three years ago, at the end of my daughter's 5th grade year.  The 8th grade was preparing for its annual end-of-year celebration field trip.  They would be going to a family resort over an hour away.  They'd leave early in the morning and return around six at night.  There would be swimming, boating, a ropes course, tennis, volleyball, hiking and countless other fun outdoor activities.  Lunch and snacks would be served.  The only chaperones would be school staff.  And I thought, 'No way. There is no way she'll be able to participate in that.  The diabetes stuff is way too complicated.'

Last Friday I dropped her off in time to board a bus for the very same trip, without a second thought.  I made sure she'd packed well, filling a string bag with her meter, juice boxes, glucose tabs, smarties, and her dexcom.  She had a deep desire to keep her blood sugar in range so that she could play tennis, swim, and try the ropes course rather than spend any time with the nurse.  But the nurse was there, just in case, both to help if needed and to be a source of back-up supplies. Lunch was easy to count: hot dog and hamburger buns, pretzels, watermelon. The 8th grade teachers all know my kid, and they were stationed around the property to supervise the activities. I knew that they would help her if she needed it.

Especially considering what a big deal the idea of this trip felt like when she was a 5th grader, by last week it felt like no big deal at all.  It turns out she's come a long way in the past 3 years.  She can count carbs with the best of them, keep an eye on how she feels, carry her own supplies, troubleshoot problems and trust her own judgement. 

The only conversation she had with the nurse was at the door of the bus for the return trip home:

Nurse:  Hi!  Everything good?

Kid:  Yup!

The Seemingly Impossible

What parent hasn't wondered about at least one of these scenarios:

-Mary will still be in diapers in middle school.
-I hope they make Velcro baseball cleats because Jonny's never going to learn to tie his laces.
-Why is Susie the only child who hasn't mastered scissors? 

Likewise, the diabetes parent list:

-Bobby better go to college nearby since I'll be there every few days to help with his site change.
-I don't see how Matt can go to Kindergarten without me being in the building with him all day.
-Guess I'll be Ellie's prom date since she'll need help counting her carbs at dinner. 

As I began to write a few paragraphs about last week's school field trip, during which my daughter admirably calculated carbohydrates and dosed insulin for unfamiliar Spanish food from a buffet table, I felt like I was bragging. It felt selfish to celebrate the success.

But I thought some more and realized that my goal was not to brag at all. My goal was to admit that until very recently, I thought this might never be possible.

When I share the story of the successful field trip I'm remembering the dozens of field trips I've attended to keep her safe.  I'm remembering the hours, over the course of years, she's spent learning to be comfortable with counting carbs.  I'm remembering surviving the anxiety of the first times she ate somewhere without me.  I'm remembering all of the other diabetes 'all by myself' milestones she's passed over the years. I'm remembering that while she's survived all of them: the first low when I wasn't around, going to school, the birthday party, the sleepover, calculating restaurant carbs by herself, and so many more, I continue to assume that the next one will never happen.

I do get glimmers of hope, though. Blog posts about kids who've survived a gymnastics themed birthday party, changed their own sites, or gone on an overnight trip with another family have, over the years, led me to believe that these may be possible for my kid too.  Blogs written by adults living with diabetes give a glimpse into the future.  These people seem to be caring for their diabetes completely independently while simultaneously having productive lives, families, and fun adventures. Reading these stories reminds me that these days will come for my daughter despite all of the reasons I irrationally assume they might not.

When I share the story of the Spanish trip, or the site change or the sleepover I do so because maybe someone else out there needs a glimmer of hope; a reminder that the seemingly impossible may one day actually happen.

She'll Have The Usual

Eating out usually involves much angst about how many carbs there are on the plate and about how much of the meal will be consumed.  And therefore about how much insulin should be given before or (lets be realistic here) as the food starts to be eaten.

We've started to play 'guess the carbs' together most times we eat out. My daughter figures out a number first, then I add my input and we discuss.  At several recent restaurant meals she's guessed between 40 and 50 every time.

When it's been my turn to give input, I've eyeballed the plate and said something like, "If you the eat 2 pieces of the battered fish and about 20 of those fries, it's probably around 50." 

Or at the Thai place, "You think you'll eat around half of that bowl of pineapple fried rice?  Maybe about 50."

Or at the diner, "Three blueberry pancakes?  Probably 50."

Fifty.

It's the going rate.  Sometimes we add a few at the end if the fries are irresistible or the pancakes arrive heavily dusted in powdered sugar.  Sometimes we'll ease down into the low 40's if the fried rice is skimpy on the pineapple or if she's not as hungry as usual. 

But lately we've been starting at 50 and adjusting from there.  It's nothing more than a mental math trick, really, but I find looking at the food and asking, 'is this about 50?'  somehow much less stressful than starting from zero and trying to add up the plate.  There is, of course, always a generous margin of error in figuring restaurant carbs.  And this method doesn't work when she orders a big salad for dinner. 

But if we're going to eat out, we need to start somewhere. For now, we've decided to start at 50.

Out of the Midst of Chaos

Last night was much like many recent nights around here.  I thought I was finishing up dinner prep and that I had about 20 minutes to relax before I had to be back in the kitchen cooking. And then:

"Mom, it's site change night."

And simultaneously I realized that one element of dinner remained unpeeled, despite that step being necessary for edibility.

So a game plan was concocted on the fly.

"Why don't you bring the insulin and the cartridge out here and fill it.  I know you know how but you rarely do it- it'll be good practice.  And I'll talk you through it while I peel these."

So she did it.  I've been filling the cartridges for so long that watching her struggle with this task which seemingly requires 3 hands was eye opening.  But she figured it out.

I wonder if this is how someone taught me to do this or if I made it up?

Then, we retreated to her room to do the other half of the job.  I am still the primary site putter-inner.  But then:

"Should I try to do it?  In my hip I mean?"

Her voice was filled with cautious excitement laced with apprehension.  I heard self-confidence and self-doubt all at once.

"Of course you should."

Then came the string of questions and worries.  "What if I mess up?"  "What if the tape gets all folded up and I can't get it to lay down right?"  "What if I can't see well enough what I'm doing?"  And on and on. 

"I think you can do it," I said more times than I can count.

"Get Ruby.  I need her here," requested the 14 year old.  So the bear with diabetes was fetched from the basket of dolls, webkinz and teddy bears in the corner of her room. 

With the inserter in one hand, her torso and head twisted at an extremely awkward angle, and the ear of her Ruby squeezed in the other hand she eventually squeezed the device and inserted the site.

Insert two smiles of pride here.

I know some kids are regularly inserting their own sites at 8.  I know that some parents push the issue long before 14. 

Neither of these were true for us.  And I was okay with that. 

She'd put in a handful of sites in her leg, out of wanting to prove she could do it, and once out of necessity.  But the leg turned out not to be a preferred site spot, and her 'rear hip,' shall we say, did.  It was awkward to try to do by herself and so I let it go. 

Our endocrinologist was beginning to ask when she was going to take over the job.  I was a little embarrassed to share with other d-people we know that this step hadn't been taken. But I knew the day would come.  And I knew my kid.  And I knew that I couldn't make that day come no matter what I said or did or suggested or threatened or bribed. 

But then it did. 

Sleepover Dilemma

Sleepovers at friends' houses always pose dilemmas: uncertain menus, late night activity, relying on the Dexom for alerts of overnight issues,  heavy breakfasts, and more; but this weekend was the first time I found myself in a quandary right here at home.

Home game sleepovers aren't completely uneventful, diabetes-wise.  We've had to check blood sugars at 2 or 3 a.m. with another child in the room, and even had to give juice or corrections.  To my knowledge the friend I desperately try not to step on as she dreams in her sleeping bag has never woken up.  Snacks and bedtime involve a more structured routine than most of our guests are used to but they are, of course, kind and flexible as any good friends would be.

Sunday morning presented a new quandary though.  I woke up at 7, and my daughter and her friend were, as expected, still silent in my daughter's room.  The Dexcom read 80, straight across.  At 7:30 it read 76 straight across and it was still very quiet in the house.  At 8, it alarmed:  69.  Here's my thought process:

At 2 a.m., the friend would certainly sleep through my barging in, but at 8 a.m., chances are good I'm going to wake her up.  I don't want to do that.  The sensor is only a day or two old and it seems to have been running a little low since we revved it up.  It's probably just still a little bit off.  And with the margin of error on all blood sugar readings if  I wasn't running in there at 76, how different is 69, really? But, of course, what if it's off in the other direction and she's really 50 and I don't do anything about it? If she's 50, that's bordering on dangerous.  But maybe it'll go back up.

By the time I'd hemmed and hawed over all of this, it was 8:20 and the Dexcom alarmed again:  under 50.  It buzzed four times since we had it set to vibrate first, then to beep if the vibration went unacknowledged.  Now at this point, I'd been listening very intently, hoping for any sounds of life from the bedroom.  I was pretty sure I'd heard my daughter moving around in her bed (there's a squeaky spring). So I put Dexi in the bathroom, on a shelf which backs up to the head of my daughter's bed.  A minute or two later it blared, "beep beep beep beep!" 

At which point I heard her get up, grab her meter and check, and get back into bed.  It was still quiet.  The rattles, clicks and beeps of the blood sugar check hadn't woken her friend.

Within 10 minutes, the line on the Dexcom graph started going back up.  My daughter's friend woke up a few minutes before 9, and they came out for breakfast soon thereafter.

"I guess you corrected when Dexi alarmed at 8:20?"

"No- I was 88.  I just got back into bed."

Should I have acted sooner?  Probably.  A severe low blood sugar emergency would have been worse for the friend to wake to than me creeping around her air mattress.  But am I  glad I didn't wake her up for nothing?  I am.  What would others have done in my shoes (or slippers)?  I'd love to know.

Impressive

“You should probably check before you go to bed.”  It was late and every second before climbing under the covers felt like an eternity but it seemed smart to head off any problems before we slept.

“191.”

“Not bad- do what it takes.”

“It says to give .5.”

“Go for it.”

We relied on the Dexcom for updates, in lieu of setting an alarm, and Dexi slept through the night.  Morning blood sugar was around 140.

I realized days later that I had said nothing else to my daughter about any of this.  On a normal day, these were okay numbers, nothing to celebrate, nothing to panic about.  On this day they were impressive, and I forgot to be impressed.

These numbers came after our annual Christmas open house. The buffet table included chicken fingers, egg rolls, mini hot dogs, teriyaki meatballs, three or four kinds of chips and crackers with assorted dips and salsas, raw veggies and fruit, and at least five desserts.  My daughter visited this spread several times, and I think she sampled all but one of the desserts.

We’ve been hosting the same party every year since Kindergarten, inviting families back to our home after Santa lights our town's tree.  For the first couple of years, I made my daughter a plate and bolused her for it before sending her off to eat with her friends.  We'd do round two of this routine when the cookies were served.  By third grade or so, she graduated to making her own plate but she still needed to have me calculate the carbs.  Last year was a mixture of her bolusing for the foods she knew (ritz crackers, my homemade cookies, grapes, the egg rolls from Costco) and needing to ask for help with the more complicated items.  This year, for the first time, she was completely in charge of her own carb counting.  This was amazing for two reasons:  first, I got to focus on being hostess and spend more time socializing with our guests, and second, the end results were much better than usual blood-sugar-wise.


It makes sense, really.  Who better to keep track of the carb intake than the person putting the food in her mouth?  Who better to dose the insulin than the person watching the Dexcom graph while she dances around the basement to Christmas music?  Reaching the point where we're both comfortable with her managing her diabetes in these types of situations is a huge plus for both of us.  Especially if she does so as successfully as she did the other night.  It was impressive.

I'll have to remember to tell her so.