Thursday, March 29, 2012

Disclosure

When, why, and how does my daughter's diabetes get disclosed?  The answer for the moment is "as much as possible."  That may change as she grows up.

All of her classmates, and most of the school staff know that my daughter has diabetes. She leaves the classroom periodically to test, and has a snack while the rest of the class does not.  She did not, I suppose, have to disclose that diabetes was the reason she was doing these things, but she saw no reason to be mysterious about it. She's started each elementary school year by telling the class she has diabetes, and a bit about what that means. During her school's JDRF walks, she's been comfortable being the "special helper" for the educational presentations, talking a bit about her diabetes experience. Because she's been with the same 60 or so kids since Kindergarten, in a variety of class combinations, it would be safe to say that all of the 4th graders at her school know the story.

Adults she's with need to know about her diabetes in order to help should an emergency arise. Her friends' parents need to be able to help her make good snack choices, and to remind her to call me if she needs help calculating a bolus. Even her piano teacher, who she's only with for half an hour a week, knows her diagnosis and circumstances which would warrant a phone call to me.

I often assume that everyone we know is aware of my daughter's diabetes, but when proven wrong am happy to share. A mom with whom I've often helped at school events recently asked me how I had ended up volunteering so much time for the school JDRF walks.  Surprised that she didn't already know, I gladly explained. My philosophy is that the more people who know, the better.  It's better for my child's safety.  What if this mom happened to be driving by in a couple of years and saw my daughter sitting on the curb on the way home from school?  She might now be more likely to stop and check on her.  If her classmates all know about her diabetes, they're also more likely to recognize a situation where my daughter needs help.  They're more likely to respect decisions she makes about what to eat at a party, or to understand why she has to take the 5 minutes to check and bolus before she joins them in a snack.  On a much larger scale, if people know what my daughter and our family deal with on a daily basis, perhaps they'll be more likely to put their names on paper sneakers at Marshalls or to support a JDRF walk.

While she doesn't bring it up herself, my child is comfortable sharing her diagnosis, and answering questions as they arise.  She doesn't consider it a secret, but there are many things she'd rather talk about. It will be interesting to see how she chooses to disclose her diabetes when she encounters a new group of kids at the middle school.  There will be so many things to talk about with new friends, most of them more interesting than diabetes.  I just hope that she continues to recognize that while diabetes isn't the most important thing about her, there are a variety of reasons it's important for her close friends to know about it. 

This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2/

Monday, March 26, 2012

Snacking

Most small children these days never leave home without snacks and sippy cups.  Not only are these at the ready in diaper bags and stroller baskets, but they are regularly in the hands of many children wherever they go.  For my child, this was often confusing.

My daughter spent her first two years with diabetes taking multiple daily injections which included Humalog and NPH insulins.   The action of NPH (more thoroughly described here) required a precise schedule of meals and snacks in order to maintain any semblance of reasonable blood sugar.  She had snacks at 9 a.m., 2 p.m. and 7 p.m.  Other kids careening around the playground with their bags of crackers seemed downright crazy to her. This snack situation was an early introduction to the reality of being different from other kids.

For my child, snack time was an event.  She sat and ate her 26 goldfish crackers or third of a cup of cheerios, and drank her four ounces of milk.  Whether she liked it or not (which she often didn't), she had to finish before she could do anything else. 

On the playground, we learned that other kids don't have this kind of routine.  They dragged their bags of goldfish crackers up the rope ladder, down the slide and into the sandbox.  They navigated the climbing ladders one handed with sippy cups in the other.  Or they ran back to their mom or dad's bench every 2 minutes for another grape.  They appeared to be breaking all the rules.

Often a child or a well-meaning parent would offer my daughter a snack.  They'd usually be greeted by a puzzled look.  "You can say no thank you," I'd prompt.  She would, or I'd decline for her.  Sometimes this worked.  Other times, the offer would persist.  "Oh, Tommy," the other parent would say, "make sure she doesn't want any...it's not polite to eat in front of people without offering them any."  Or, "are you sure, sweetie...they're very yummy!"

Of course they were yummy.  The other astonishing thing about these snacks was that children were eating chocolate covered pretzels and cookies and fruit chewies at 10:30 in the morning!   Some of them even had lollipops.  Cookies were staples in our house, but rarely offered outside bedtime snack-time.  The rest of these delicacies were severely restricted or forbidden.  Why wouldn't she want one?  "No, thank you," I'd repeat for her, followed by, "How about I push you on the swing, sweetie?" I spent a lot of her toddler hood pushing her on the swings in order to extract her from temptation.

It was an important early lesson.  She couldn't eat like other kids, and she still can't.  She has more flexibility now with her insulin pump.  She still does much better, though, when she eats her handful of pretzels or 6 crackers all at once at a party rather than one at a time over the course of an hour.  She does better, too, sticking with foods she's familiar with rather than guessing carbs for a treat provided by someone else.  Lollipops, while no longer forbidden, are still a rare treat and are never, ever, consumed while flying down the slide at the playground.

Friday, March 23, 2012

Two a.m.

Most people don't have the opportunity to regularly visit with sleeping children.  When they're babies, it's common to watch them sleep.  New parents admire how angelic and peaceful they look.  Tired parents revel in the silence and admire the unique ability of little ones to sleep through most anything.Once they get a little bigger though, most parents tuck them in, pull the door closed, and hope not to see them until morning.  I suppose parents of teenagers see sleeping children again, but only when furiously trying to wake them for school.

In our house, we see a sleeping child each night.  When the alarm goes off for my daughter's 2 a.m. blood sugar check, it's never greeted with a smile or enthusiasm, but sometimes there are rewards. 

One night recently, my husband found her with her head where her feet should be.  She claimed the next morning to have fallen asleep with her head on the pillow.  Must have been some dream.

Another memorable night found her with her head and both arms hanging off the bed.  Usually, I try to disturb her as little as possible, but here I had to intervene.

We once found her sleeping sitting up with a book in her lap. It's that this has only happened once that really surprises me.

Trying to give her juice at 2 a.m. is entertaining as well.  Low and, essentially asleep, she's quite incoherent.  I'll gently wake her, saying, "sweetie...you need a little juice...can you sit up?"  Particularly if she's facing the other side of the bed, she'll raise her head, look around, not see me, mumble a bit and lay back down.  Once upright, she struggles to find the straw, opening and closing her mouth like a baby bird.  Then once she's had the juice, she doesn't know what to do.  She often just sits there, eyes glazed over.  "O.k.  You can go back to sleep now."  "Mmmrph..." she'll say, as she pats around her to find her stuffed bunny and cuddles back into bed. 

My favorite nights are when I find her just as she must have fallen asleep.  She's snuggled under the covers, her face relaxed and peaceful.  Her stuffed rabbit is snuggled in her arm.  It's these nights when I grumble a little less about being up at 2 a.m.  How many parents get to see their 10 year olds looking so sweet?  I take a mental picture.  Then I check her blood sugar, making sure to tuck her arm back around her rabbit.

Monday, March 19, 2012

The Affliction

The past 4 days at our house can be summed up by the photo below:




The pediatrician confirmed an ear infection and then said, "that cough doesn't sound too good either," ending the sentence with something about the possible beginnings of pneumonia. A couple of days on an antibiotic combined with countless episodes of Phineas and Ferb seem to have fixed her up pretty well.  She's back to school, leaving me here to sanitize the house and restock the tissues and test strips.

Thursday, March 15, 2012

Always Something

The weeks before our vacation went smoothly, blood sugar-wise.  We'd hit a groove. The majority of numbers were in range, and predictability allowed us to fine-tune the rest.  Then we went on vacation, which was less predictable but all things considered the blood sugars were not outrageous.  I'd hoped when we returned home we'd pick up where we left off, but that's not the way it went at all. We've been undermined by the following forces:

  • A doctor's appointment this week confirmed my suspicion that my daughter's annual spring growth spurt has hit full stride.  It's great to grow, but the growth hormones and added physical mass are throwing her numbers, particularly the night and morning ones way out of whack.  It's clear that her overall insulin needs are increasing faster than our programming of her pump's rates and ratios.


  • Softball started this week with 5 practices in 7 days, all at different times in different locations. After a sedentary winter, exercise, adrenaline, and a more flexible schedule have come into play.   

  • Yesterday, during an afternoon of high blood sugars, I pulled a site which was quite clogged.

  • Last, but not least, she came down with a fever and cold last night.

For me, the challenge when faced with a laundry list of problems like this is not to treat them as excuses for high blood sugars and hope they'll go away on their own.  Instead, I have to muster the energy to address them head-on.  The only way to do this is to systematically work through the problems one at a time.  The clogged site was a simple fix, and the illness is an unpleasant diversion but manageable with frequent checking, aggressive correcting, and lots of liquids. The softball routine is coming back to us quickly, and her bag has been fortified with plenty of granola bars and smarties.

It's the major, long-term changes that are the hardest to tackle.  They require answering all those questions:  Are the basal rates too low?  Does the correction factor need to be changed?  Is the insulin:carb ratio correct for all meals?  Or just some?  Or none?   We have to start writing things down again...every time.  We'll want to check in with our diabetes team. 

The bottom line, though, is that this needs attention beginning now.  No excuses.





Thursday, March 8, 2012

Magic Card?

As we planned our Disney vacation, I learned about Guest Assistance Cards.  These are cards which Disney issues to guests with disabilities who may need special assistance or accommodations during their time in the parks.  I learned that they will issue these cards to guests with Type 1 Diabetes.

Curious about this service, I trolled the internet for information to find out if this was something we should consider for our daughter.  I found some strong opinions.

Some were adamantly opposed to the idea for a variety of reasons.  We know there are people much worse off than we are, they wrote, and they are the ones who should get special treatment.  We spend much of our time attempting to convince society that our child is just like other kids and it's against that mentality to have them be different at Disney World.  We don't want people staring at us as we enter a different line or discuss our needs with a cast member at the gate.

Some were in favor, and their reasons were diverse as well.  We're new to diabetes, they explained, or pumping, and know it will slow us down.  We're afraid we're going to get on a very long line and a diabetes-related situation will cause us to leave the line and need to start all over again.  We expect it to be 100 degrees the whole time we're there and don't want to risk the diabetes/dehydration combination.  Diabetes is a challenge every day of the year, why not let it be a perk for the few days we're on vacation.

I can see both sides of the coin here.  We certainly saw children with more obviously difficult medical needs than ours.  We do want our child to be viewed as a "regular kid," and to view herself as such.  On the other hand, our child does have medical needs which most children don't, even if they don't involve a wheelchair or an oxygen compressor.  Therefore, she's not a completely regular kid, and this did add a challenge to our vacation which Disney was willing to help us out with.

So here's what we did:  On our first park visit, we went to guest relations and requested a Guest Assistance Card.  We kept it with our park passes and dining confirmation numbers.  We never used it.  The closest we came was when the pump alarmed as we were about to board the safari ride, but we decided we could handle it on the fly, since it turned out to be a simple problem.

We might have benefited from having it, though.  What would have happened if after we'd waited 20 minutes to ride It's a Small World, my daughter had experienced a low blood sugar as we approached the gate and needed to stop for 3 minute juice break?  What if the next available fastpass for Soarin' had been for 5 in the afternoon when we had planned to be at Germany, nearly a mile's walk away? What if we'd wildly miscalculated a guess-the-carbs lunch bolus and been fighting low blood sugars all afternoon, therefore needing to minimize our walking?  What if a diabetes issue had slowed us down one morning and we'd missed our park opening blitz of the most popular rides?

I can't say we weren't tempted to use it. When faced with a typical Disney wait, we'd turn to each other and say, "magic card?" Had we used it, we probably could have scored some chairs while we waited for the Lion King show to start.  We might not have hiked quite so much around Epcot waiting for our fastpass times for popular rides.  My daughter would have ridden The Many Adventures of Winnie The Pooh about a dozen more times.

We chose instead to strike a balance; perhaps a metaphor for how we deal with diabetes every day.  We were aware a problem could crop up at any moment.  We were prepared to address any situation with all of the tools at our disposal.  Meanwhile, we proceeded along like a "regular family" to the greatest extent we could. It was simply reassuring to know we had a magic card handy to help us continue to have as much fun as we could should any problems crop up.  It would be nice if my daughter could have a magic card in her back pocket every day.

Tuesday, March 6, 2012

Disney World

Our family's first visit to Disney World last week was, to use Disney's favorite word, magical.  We loved our safari ride, Soarin', the fantasyland rides at Magic Kingdom, our resort's dragon water slide, and so much more.  Our lunch with Pooh, Tigger, Eeyore and Piglet was my daughter's highlight and will most certainly be featured on next year's Christmas card.

The Disney World experience, however, is a diabetes nightmare.  In order to beat the crowds, we rose at the crack of dawn and headed to our resort's bus stop, bags of dry cereal and fruit in hand.  We then zipped from attraction to attraction at break-neck speed until my craving for coffee necessitated a mid-morning snack break.  Blood sugars could be high or low at this point depending on the amount of speed-walking versus the fright-factor of the most recent ride.

Late morning involved retracing our steps to revisit favorites, and to see less popular attractions, which were often on very different ends of the park.  By 11:30, there was usually a low or nearly low blood sugar. We found lunch, which was usually high in fat and non-complex carbohydrates.  An unhealthy afternoon snack would follow, such as the crepe at the French pavilion or the (very yummy) pineapple dole whip in adventureland.  By late afternoon, the adrenaline would kick in.  Exhaustion and high blood sugar led to brief periods of family grumpiness, but was always counteracted by the next fun adventure. Eventually, we'd proceed to late dinner reservations at the German Biergarten or a Mexican restaurant where we'd attempt to guess how many carbs were in speatzle or a churro before viewing the fireworks show and collapsing into bed.  When we were smart enough to relax at our resort, the pool beckoned and the pump was unplugged for multiple round-trips on the water slide. 

A good first experience at Disney requires preparation. I spent a lot of time and energy planning our vacation to get the most out of our days in the parks.  I therefore felt compelled to also spend time planning how to keep diabetes from sabotaging my plans.  We looked decidedly frumpy with our fanny packs, but we had enough juice boxes, granola bars, water and diabetes supplies to keep us going through each day and to face any emergency with relative ease.  We scouted out a few relatively healthy dining options to intersperse with fun amusement park food.  We left a trail of test strips through the many lands of Disney World. 

Once prepared and organized though, a certain amount of flexibility took our experience from fun to magical.  On a regular parent level this included permitting several short nights of sleep in a row, being willing to stand in line for half an hour to meet Minnie Mouse, and several sails through It's a Small World.  On a diabetes parent level this meant getting the dole whip even though we'd just finished a 2 dessert buffet lunch, postponing a snack because we encountered amazing Chinese acrobats at Epcot, and troubleshooting  a pump alarm on the fly so we wouldn't miss the next Safari trip at Animal Kingdom.

It wasn't easy. I don't think there's anything easy about a Disney vacation even without diabetes.  A combination of careful preparation ahead of time, and enjoying every opportunity while we were there, though, made it a magical vacation.