My husband and daughter have taken up a new hobby. Geocaching is described in detail in this link, but essentially, it's a treasure hunt using GPS coordinates. People hide 'caches' in public places. Then they post GPS coordinates and additional clues on the website linked above.
So far our family has found about 40 caches in 4 different states. I'm not so much a fan of the scrounging around in bushes and under park benches part of the whole thing, but it's been a great excuse for visiting nearby parks, hiking trails, historical sites, and even extra rest stops when we're on the road.
After having found a good amount of caches and getting the hang of the GPS app and how the website works, my husband decided it was time to create our own cache. We needed a small, waterproof container in which to place a scroll for people to sign when they found the cache. We had just the thing. A little camouflage duct tape to make it a little harder to find and it was ready to go:
People who hide caches often offer a prize or a special shout-out to the first person to find their cache. My husband went a different direction. Included in the clue is this line:
The first person to identify this container will earn a special place in our hearts.
It's been quite an adventure raising a now-teenager who was diagnosed with diabetes just after her first birthday! Please realize that what you'll read here is not intended as medical advice; it's just the ramblings of a sleep-deprived mom. Always consult your medical team about your treatment options, but do stop by from time to time for a bit of perspective.
Best Advice
In the past 11 + years of diabetes, we've been given all sorts of advice about my daughter's health and care. Advice has come at all stages, from all sorts of people. At this week's endocrinology appointment, I was reminded of a piece of advice which falls at the top of my list of favorites.
Looking like perhaps he'd just been through a challenging appointment or two, the endocrinologist sat down at his desk, glanced at the dexcom printout and the A1C slip and said, "Ahhh...this should be easy."
"It should?"
"This A1C is very nice. And these graphs look pretty good too." He shared the A1C and discussed it with my daughter. Then he asked us, "Do you know how you did this?"
"Um...not really. If I did, I think I could make a fortune," I replied as my daughter merely shook her head.
"Well I do. Look at this printout here. This part of the graph is the overnights."
Ah, yes. The advice we received years ago from our first (and favorite) diabetes educator:
If you can stay in range overnight and wake up near your target number, everything else will fall in place.
Being in range overnight takes care of 10 hours of the day right off the bat. Then, if she wakes up at 100-ish instead of 180-ish, the breakfast spike is less significant and the lunch number is better too. All those other spikes from the miscalculation of carbs or the crummy site become blips on the screen rather than compounding factors for an already high average.
If, the uninitiated or the overachiever might ask, this overnight thing is the key to success, why don't we just keep her numbers in range overnight all the time? I wish we could, but as the old pro and the realist know, stuff happens. In this case, growing happens and hormones happen. Every so often things slowly get out of whack, particularly in a growing kid. The 5 a.m.creep up begins. Or the 2 a.m. correction comes into play. The evening carb ratio no longer quite does the trick. Sometimes, all of these things seem to happen at once.
At our winter endo appointment, my daughter's A1C was 3/4 of a point higher than it was last week. We spent a good part of that appointment addressing high numbers at 10, 2, and 6 a.m. It felt like the whole night had gone haywire all at once and like untangling those numbers would be like untangling the Christmas lights: a task best left to somebody else. We gladly accepted the help.
As winter turned to spring, we continued to tweak basal rates and the evening carb ratio. Problems crept up one at a time and we apparently managed to keep things under control. Can we keep it up all summer? I don't know. I do know that I should pay close attention and call in professional reinforcements if I need to, because:
If she can stay in range overnight and wake up near her target number, everything else does, indeed, fall into place.
A Teaching Moment
We visited the endocrinologist this week. As he glanced at my daughter's A1C slip, he was pleased with what he saw. "This is what I'd call a good A1C." Then, turning to my daughter, "Do you know what kind of number a good A1C would be?"
"Ummmm..."
The omnipresent chart was on the shelf to her left. She looked it over. "6?"
"Six would be very impressive. Five would be amazing. But in people with diabetes, particularly kids, five would be almost impossible without some really nasty lows. What we aim for in kids your age is an A1C around seven, and you've done that very well."
There was much to appreciate about this little exchange. The teaching. The relationship building. The gentle passing of the torch of responsibility for understanding the disease to my daughter. The affirmation of our hard work which, I know from experience, would have happened no matter what number showed up on that A1C slip.
We don't go to the closest pediatric endocrinologist. Our visits require a sometimes hairy, sometimes traffic-ridden journey. When we arrive, we look like we're planning to camp out for the duration, with snacks, homework and books in addition to the usual diabetes baggage and the materials we need for the appointment. Despite these hassles, we never think twice about repeating this expedition.
I hear horror stories all the time about people's relationships with their doctors. I realize we're fortunate to live in a part of the country with lots of choices, and that we're fortunate to have insurance which allows us to make them. Some people have neither. But if you do, and you're not happy, find a great doctor. It's so very worth it.
An Ode to String Bags
We started with a diaper bag
So many years ago.
Then there was a mommy tote
With toys and snacks to go.
Of late it's been my giant purse
To carry all the freight.
But really couldn't other folks
Help carry all the weight?
With a glance upon the closet shelf
A solution was at hand.
Forty seven string bags
Of every color and brand.
To ballgames, hikes and theme parks,
To museums and parties we'll go.
Taking our turns to carry the stuff
For the perpetual diabetes show.
All Out
Last week was a hectic one. After returning Monday from an extra-long weekend with family on my husband's side, I got right back into the business of helping my dad pack up his house. He moved from house to condo on Friday.
In the midst of the packing and moving, unpacking and organizing, there was still school and homework, piano and volleyball, the orthodontist and a weird fast-moving stomach bug, plus a Friday night school social. It was a fast-paced week.
My dad's new little dining set was delivered at 11 on Saturday morning, completing the string of deliveries and installations. My husband, daughter and I were there helping unpack boxes and screw in paper towel dispensers. We'd brought sandwich stuff with us and by noon we decided to christen the new table. Happily ready for lunch, my daughter entered her carbs into her pump, scrolled up to a dose, and hit 'go.'
Fur Elise played merrily from the pump. "No delivery. Pump is busy." (Which I've always thought was a weird phrase to program it to say...busy doing what, exactly?)
In this case, it was busy preparing to tell us the bad news: "Empty Cartridge. No delivery." Oh. Oops. In retrospect she remembered the low cartridge alarm going off overnight but didn't think of it again in the morning. In retrospect I remembered thinking when I changed the site Tuesday night that if Friday was as chaotic as I imagined it would be we might have to put off site change until first thing Saturday morning before we went to help unpack. That was the last I thought of it.
Fortunately, Dad's condo is only three and a half miles from our house. My husband was kind enough to make the insulin run and within half an hour, my daughter was eating lunch.
We had a good run. This is the first time my daughter has run out of insulin since she stopped making her own in 2002. But as summer day-trip season approaches, it led me to re-evaluate what we carry with us when we're out. For a trip within a few miles, like this one, I'll probably still not bother carrying insulin, but we've gotten lazy about bringing it with us when we're headed places farther afield for the day. What if we'd been an hour away at the beach or at a museum? This could have ruined a whole day, rather than just delaying a much needed lunch.
So I've ordered a Frio insulin cooling case to add to the collection of things we bring when we go out.
Choose your closing saying below:
Choose your closing saying below:
All's well that ends well. Live and learn. Better safe than sorry. Be prepared.
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.
Subscribe to:
Posts (Atom)