Worth The Effort

I'll confess. Sometimes I just go through the motions during an endocrinologist appointment.  We have an awesome doctor at an excellent clinic.  I care very much about keeping my daughter's diabetes 'under control' (or whatever other phrase you want to substitute because you too recognize the impossibility of that one). Yet sometimes I'm just not into it.  Maybe I'm overwhelmed by too many concerns or questions.  Maybe I feel like things are going fine and we don't need much help at the moment. Maybe the trip in, the parking and the check-in process have sapped my day's allotment of mental energy. Maybe there are other things going on in life which seem more important. Maybe it's just a bad day.  It happens.  I hope when I'm not feeling terribly focused, I can look back on our most recent appointment to see why I should try to dig a little deeper.

I didn't come into this particular appointment with a written list of questions and concerns.  I wasn't geared up to address a series of specific problems.  I knew a things were not going perfectly, so there would be some tweaks, but I wasn't feeling the intense need for help that I sometimes do.  Yet as I focused on the blood sugar graphs before us, and on what the doctor had to say about them, I found myself fully engaged.  And engaging him.  So a conversation which could have glossed very simply over Sunday night's lows turned into a long and helpful conversation about the absorption rates of all kinds of different site locations and what the factors are.  A suggestion to change the correction factor wasn't just jotted down, but led to some really interesting information about the general math behind correction factors.  And on we went. By asking follow-up questions, I picked up several useful tidbits of information.

We also had conversations which included my daughter as an active participant. We addressed some things I already knew (pre-bolus breakfast at least 15 minutes ahead, for example). But what I realized as we talked was that my daughter hearing these things from the doctor was entirely different than hearing them from me. I can tell her to pre-bolus every day, but it's often as effective as telling her to pick up her room.

There are countless other reasons to use our endo time wisely. High co-pays, making the most of the time away from school and the rest of life an appointment requires, and taking advantage of the unique opportunity to receive high quality medical care are reasons which come to mind.

So even if just one of the above reasons is true for you, I'd encourage you to make the most of every endo appointment.  You're bound to gain some nugget of information or support which will make it worth the effort.

Snack Time

I hear a lot about teenage boys.  They're always hungry.  You can't keep anything in the house.  Buy out the snack aisle before you even consider inviting their friends over.

What nobody every clued me in to was that the same is apparently also true of teenage girls.  Maybe it doesn't last as long, or maybe I'm encountering a particularly hungry bunch.  But these kids are ravenous.

A bunch of friends came over on a recent half day.  Each one had bought a sandwich or a bagel at one of a couple of eateries on the way home from school.  They sat around our dining room table and ate them. Completely.  It wasn't long ago that I'd have 6 girls here for lunch and there'd be half bagels, large portions of sandwiches or the bulk of the pizza I'd ordered leftover.  On this day, there were napkins and crumbs.

Half an hour later my daughter emerged from the basement playroom (hang out room? rec room?  what do we call it now?).  "I'm bringing down the popcorn chips."

Within half an hour she returned with a bowl containing only a hint of popcorn dust and absconded with over a pound of grapes.

Pretzels were next, enough to fill a large sized salad bowl.  Crumbs and salt covered the bottom half an hour later when it was returned for a refill, and again when it was cleaned up as the girls went home.  Presumably they, like my kid, proceeded to eat full dinners and ask for dessert.

The whole experience felt like a cross between feeding cookie monster and a pack of wolves.  Food disappeared instantaneously.   Crumbs and dust were left in the wake.

The diabetes link in this post, you ask?  It's a challenge to bolus for this kind of grazing.  Up to a year or so ago, I just didn't allow it except at the occasional party.  Snack time involved a bowl, careful counting or measuring cups, and a nice solid bolus.  And on a regular basis, that is still the preferred procedure here.

Somehow, though, she managed to count and bolus enough of her snacks to end up with a very good blood sugar by the time her friends went home and she started asking what was for dinner.

Bad News

I started with the good news: Monday's post about my daughter inserting her infusion set all by herself for the first time.  It was a great moment.  I wish we could have spent the weekend celebrating.

Sadly, there was bad news to balance the good: the absorption rate for this hard-won site varied from 'I don't think this site works at all' to 'OMG we might not have enough juice to make it through the night.'

Sunday was our first-ever three juice box night.

We experienced things over the life span of this leg site that we have never experienced in 12+ years of diabetes. We saw our first significant residual lows from exercise. We spent two nights trying to keep up with those lows. Alternately, we gave corrections for highs which would not budge without accompanying activity.

The site went in on Saturday morning.  It followed a site which had certainly reached the end of its usefulness, so there was a residual high there, combined with a residual high from an evening at a friend's house dining on chicken fingers, munchkins and cookies.  It was a lazy Saturday morning.  Our intense desire for this site to be a success led us to chalk Saturday morning's highs up to that variety of factors and to leave the new site in despite some concerns about its effectiveness.  Around 1, I walked her to a friend's house where I left her with a blood sugar hovering in the 250's.   An hour of Just Dance on the Wii led to double down arrows on the Dexcom and some barely covered snacks.  She was still low overnight (at least 8 hours post-exercise) and needed juice and some temp basals to keep her going.

We figured we'd overcorrected for the morning and mid-day highs and that it had simply all caught up with her.  

But by mid-Sunday morning, she was high again.  It was another sedentary morning, maybe that was the issue. We've been seeing a mid-morning creep up this week anyway, so maybe it was a pattern we needed to address?  We remained reluctant to pull the site and dampen the excitement of having inserted it to begin with. After lunch, both frustrated with the high and happy to see the sun, we walked around the park: a little over a mile.  By 3, she was headed straight down, but evened out around 80 through dinner time.  She didn't really crash until after 10 at which point there was no turning it around. That night was our first ever 3 juice box night.

Monday was still streaky, but better, I imagine because of a more steady pattern of intermittent activity and rest.  It still felt  like all of our usual issues were magnified exponentially.  The post-breakfast spike was higher and the post-gym slope was steeper.

I'm thinking that this leg site thing is not for my child, at least not on the weekends.  In case of emergency, sure.  If she's 30 miles away from me and her site rips out, and that's where she's most comfortable putting in a replacement?  Fine. Otherwise, I might think twice.  This weekend was a tough one.

Except for the part where she inserted a site all by herself, of course.  Which is still amazing and still the most important part of the whole story.

*As always, but particularly since this is a very specific post, please don't take this as medical advice.  In addition to the usual reasons for this caution, please note that due to the fallout from this debacle, I have not slept much and am running primarily on coffee, strong tea and dark chocolate.  Leg sites might be just the thing for you.  Another leg site might be just the thing for us.  The only point I'll stand by is that affirming the bright side of having your kid insert her first infusion set should outweigh any complaining you do about the results.

Good News


The good (actually amazing and incredibly awesome) news is that my daughter inserted her first infusion set this weekend.  All by herself.  She had promised our endocrinologist that she'd do one before the next appointment. So with only days to spare to keep that promise, she went for it on Saturday morning. She chose her thigh for its high visibility and ease of access.

The accomplishment is doubly impressive since not only had she never inserted her own site before, she'd never even seen it done.  All of her infusion sets, for the past 11 years, have been out of her field of vision.

She practiced first on Ruby, her bear with diabetes.  She'd inserted sites for Ruby before, but a long time ago. This was a great way to refresh her memory on the mechanics of the process:  where to set the inserter, where to squeeze, how to attach the tape, how to pull the inserter back out, how to finish attaching the tape. It's not hard, but it's a bunch of steps and the practice helped.

There was plenty of time between when she first rested the inserter on her leg and when she gathered up enough courage to go through with the process.  There were a few cries of "I can't!" The concern about doing it herself was accompanied by worry about whether it would feel different going into her leg than it did going into the usual spots.  But eventually, with Ruby tucked in a strangle-hold under one arm and constant verbal encouragement from me, she squeezed the trigger and in it went.  She grinned proudly, and said it hadn't hurt much.  She plugged the pump tubing into the new site, figured out how to arrange the tubing, and negotiated a fitting reward: a jumbo pack of tic tacs.

This was a significant step along the inevitable road to diabetes independence and one to be greatly celebrated.  Even if she doesn't do all of her own sites from this day forward, knowing she can do it is huge, both in terms of being able to be out and about without a parent, and in terms of a general sense of independence.

Unfortunately it wasn't all good news.  Check back in a day or two for the flip side....

Green Bagels

We live in an eclectic part of the country.  Ethnic restaurants, music from around the world, and people who can share stories and traditions of a multitude of cultures are all part of our life.  There's a lot to love about it.
Sometimes those cultures even merge to create truly unique experiences.  A talent show featuring steel drums, bluegrass and a piano sonata by Mozart comes to mind.  And so do green bagels.

Every St. Patrick's Day since she was in Kindergarten, my daughter has enjoyed a green bagel for lunch or snack.  More than one local bagel place produces these Eastern European Irish delicacies. Sold by the bagful for class parties and alternative school lunch fundraisers, they're as much a part of our local St. Patty's day festivities as corned beef.

Bagels are one of the few highly regulated food choices around here. 'Everything in moderation' is usually the law of the land.  But from the moment they first begin to cross her lips those 60+ bagel carbs (or 30+ for a 'mini') can wreak havoc on my daughter's blood sugar for at least 12 hours. When she was littler, she'd complain about the bagel restriction.  "My friends eat bagels every day for lunch." As she's become more aware of and responsible for her own blood sugar monitoring, she's stopped complaining quite as much and started to actively avoid them herself except on rare occasions like, of course, St. Patrick's Day.

Because after all, what's St. Patrick's Day without a green bagel?

Elmo In Grouchland

There was, for some reason, a recent conversation about Sesame Street.

"Like in Elmo in Grouchland,"  my husband replied in response to some important point.

"I never liked that movie," my daughter piped up.

No wonder.

My daughter recalls nothing of her diagnosis story.  She was only 13 months old, too young to remember the emergency room, the helicopter ride, the subsequent emergency room, the intensive care unit or the excruciatingly slow days on the regular hospital floor.

We had some toys with us, and the hospital had some we could bring into the room.  We had a collection of picture books, and some crayons.  There were excursions for different tests and blood work.  The nurses came and went.  But a 13 month old in a hospital crib is tough to keep busy.  Up until this point, t.v. had not been a big part of my daughter's life, but this felt like the time to let her watch a little.  Anything, really, to make the time go by.

There was a t.v. in the room which had limited channels- especially for a 1 year old.  The PBS morning shows were about all we had.  She wasn't into Jerry Springer or Days Of Our Lives.  There was also a VCR  in the room (yes- my child is now 100 years old).  The selection of videos for anyone under 7 or 8, however, was tiny.

In fact, the only one we found which seemed relevant was "The Adventures of Elmo in Grouchland."

So we watched it.  Every day.  For 6 days straight.  If nothing else, we reasoned, we were all temporarily distracted.

My daughter has apparently seen it since, though I don't recall viewing it with her.  But then again, I don't recall viewing it the first 6 times either.

It appears 'The Adventures of Elmo in Grouchland' has impacted each of us in very different ways. How have we developed strong opinions on one hand and complete cinematic amnesia on the other?  I'll speculate:

For my daughter the movie is somehow intertwined with a week of her life which, despite not being able to recall the details, I'm certain she did not enjoy.  Subconsciously, I'd guess,  she connects that movie with a week of endless discomfort, stressed parents, and everything being very new and different.

For me, I don't think I ever really saw it to begin with.  It was on in the room, but I was so overwhelmed by the whole situation that I used that 73 minutes to zone out completely.  It was a rare moment in each hospital day when I could let my mind wander, assimilate a fraction of the new information coming at us, rest, and regroup.

Or the maybe the movie is just genuinely terrible and forgettable.

What I am sure of is that we'll never watch it again to find out.

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.