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Posts tagged ‘toddler’

King for a Day

Luke got to be an ambassador for JDRF/Nordstrom’s massive Beat the Bridge walk/run this year. It was started by a family 30 years ago when their son was diagnosed. Co-workers at Nordstrom chipped in, and it has grown into a $1.5M+ event with roughly 30k people turning out to walk and run.
It was admittedly a proud parent moment. Our family was part of the promotional video, Luke got to be on radio and TV, and he was indulged by the two older ambassadors and the many corporate teams we visited leading up to the event.
I was inspired and humbled by the people we met. Every corporate team had people walking for family or friends, and one team captain quietly told me she’d been doing Beat the Bridge for 20 years, since one of her two step-sons with T1D had died.  Many friends signed up to walk and run, and family and friends from all over contributed. We hoped Luke would see T1D as bringing something good his way for a change. We were coming out of a rough year with him realizing that T1D isn’t going away, he can’t control it, and not everyone has to suffer from its nasty low/high blood sugars.
He did revel in the attention, but he surprised me by shifting through different reactions to the event and T1D in just those few months. (Then again, why would something involving T1D be simple?)

  • First reaction: “I’m king of Beat the Bridge!” How else do you explain the concept of “ambassador” to a four-year-old?
  • Next reaction as the TV promos started running: “Hey, did you see me on TV? I’m on TV!”
  • But then: “I’m mad, because Beat the Bridge will stop diabetes, and I like to watch Batman when we do pod changes.” Uh, glad we’ve made pod changes so attractive!
  • And: “I don’t want anyone to see me on TV, because then they’ll know I have diabetes.” I think the cat’s out of the bag on that one, kiddo.
  • The morning after the event: “Beat the Bridge is over? Is diabetes over now?” Cue sound of parent’s heart breaking. Explain that scientists are still working on it, and people all over the country are doing walks and selling lemonade to get more money for scientists to fix diabetes.
  • “Oh. I want to give all my money to the scientists.” Luke has been saving for an entire year to buy a Playmobile Falcon Knight castle, and his piggy bank is stuffed.
    Pause. “Well, half the money – I still want the castle.” Sanity restored.

BTBHero

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It’s Not. Your. Fault.

 

 

 

About a year ago, Luke’s behavior turned dark. This went beyond the terrible threes: he was alternately clingy, defiant, manipulative, and fiercely angry.  He missed hours of preschool due to tantrums. When he quietly told Erik that he didn’t like living because of diabetes, our suspicions were confirmed – at three, he was coming to terms with time, mortality, and “forever.”

We tried to put it in perspective, sometimes with hilarious insights from Luke. “Some kids don’t have both parents,” I said after reading Hansel and Gretel one night. “It’s tough – some don’t have parents at all.”

Luke didn’t skip a beat. “Well, I need more parents,” he said. “I’ll go to a bar.” When Erik and I have a date, the standard reason Luke can’t come is that we’re going to a bar, and kids aren’t allowed. Apparently the lesson is that bars are a great place to find quality parental material.

But nothing really softened his storms, and I had the feeling we were missing something aside from the obvious. When Luke was diagnosed, people often said, “Well, at least he’ll grow up with diabetes and won’t know anything different.” It was an understandable reach for silver lining, but I’d never really bought it.

One night, the pieces fell into place. It was bedtime, and I was lying with Luke in his darkened room. He was rocking his body from side to side and staring blankly at the ceiling. I felt a chill. “What’s up, bud? Why can’t you sleep?”

“I’m thinking about the bad things I do to my body,” he whispered.

My skin crawled. Blood sugar had been a roller coaster that day – one of those nasty 40 to 400 and back again kind of days. Of course – kids blame themselves for divorce, abuse, neglect, and all kinds of things beyond their control, so why wouldn’t he blame himself for crazy blood sugars? He saw us as able to bring blood sugar under control, while he could do nothing. No wonder he was disgusted with himself and mad at the world.

“It’s not. Your. Fault.” I told him. “Having diabetes and high or low blood sugars – none of that’s your fault. There’s nothing you did to cause that.”

He brightened. “Then whose fault is it?”

“Well, sometimes it’s my fault for not getting the insulin right, and sometimes it’s nobody’s fault – diabetes is just tough to get right sometimes. But it’s not your fault – your job is just to be a kid and to have fun, learn things, and be nice to people. It’s our job to take care of the diabetes. And when you’re big, it’ll be your job, but it’ll be a lot easier then.” I babbled, hoping something would stick.

It did. He smiled in a way I hadn’t seen in months. “I love you, Mom,” he said as he hugged me. He rolled over and in minutes was snoring softly.

He didn’t turn into an angel, but the nastiness faded, and we went back to more typical terrible-threes behavior. We still occasionally remind him that it’s not his fault, and the answer now is an assured, “I know.” There will be more phases as he grows up, and I hope we can help him navigate them. If not, we’ll just send him to a bar to find some parents who can.

An Experiment in Empathy

When the new Dexcom G4 arrived earlier this week, I was excited on two counts:

First, we could pick up Luke’s blood sugar from his room (no more clunky white baby monitor to pick up alarms), from the parents’ seats at Aikido practice, and from other rooms at friends’ houses.

Second, I could try on the old Dex and see how it felt.

This seemed a little unseemly, taking D-mama empathy a bit far, but I wanted to know if Luke’s occasional complaints about the Dex hurting him were genuine or pre-schooler exaggeration, and I wanted to know what normal blood sugar looked like. When Luke was diagnosed, I left the hospital with the impression that normal blood sugar stayed strictly between 80-100 at all times. I’d learned since that there’s more variation, but I had no idea how much.

What I found was both a relief and slightly dismaying. A relief, because much of the day our blood sugars weren’t dramatically different (it was a good day – don’t get the wrong idea). A shared banana first thing in the morning spiked us both – but my pancreas kicked in to  level out blood sugar, while Luke’s synthetic insulin took a while longer to flatten out the rise. (The old Dex showing my blood sugar is on the left, and the new G4 showing Luke’s is on the right. Apparently I experienced the “dawn phenomenon” spike just before waking up – Luke’s still too young for that.)

There were moments when Luke’s blood sugar went higher or lower than I could follow – and what can you do but sigh and bolus or hand over the juice. What surprised me was how uncomfortably aware I still am, several days in, of the Dex wire under the back of my arm. It twinges when I roll over on it at night, and it’s faintly sore during the day. Maybe it’s a bad spot or I’m just not hardened yet to pokes and discomfort, but my heart sank when Luke complained this afternoon that the new Dex (which has a smaller wire) hurt his arm.

But the moment passed, and it keeps him safer at night and during the day, so we’ll stick with it. He needs something to tell stories about when he’s older – some equivalent of the old days of boiling glass syringes and sharpening needles on a whetstone. Maybe he’ll have a CGM by then that reads blood glucose via light through the skin, or maybe by then we’ll have something even closer to a cure.

Ping to Pod – the Good, the Bad, and the Ugly

We’re a couple months into our switch from Animus to Omnipod, and we’re slowly reaching cruising altitude. I’ve gotten great tips and information from other bloggers and podders that have definitely helped the transition – thank you!

A quick snapshot of how this transition looks for a 3-year-old boy and his pancreants (disclaimer: insulin delivery devices are a very individual choice – I’m not out to champion one pump or another for anyone else):

The Good

  • No surprise – going tubeless has been AWESOME! Luke can run around with a pump bumping on his back, we can hug him and not hug his pump, and going swimming is much, much easier.
  • Surprise! – I like that Omnipod doesn’t track IOB for carbs (it does for BG corrections). I understand concerns. We’ve had our share of stomach bugs and mini-glucagon moments, but with bolus history in the Omnipod, we’ve been able to quickly figure out carb IOB when needed.
    95% of the time, not seeing carb IOB has saved us from getting twitchy and giving too many free carbs. And we find corrections work much better without the pump including carbs in the IOB, as Animus does (we are careful not to correct for at least 1 1/2 hours after eating). Animus often would not suggest a correction hours after a big meal even if BGs were in the 200s, because it assumed meal insulin on board would bring blood sugar down – but that often didn’t happen.
  • Complete remote control – Having all pump functionality in one PDM is fantastic, because we change pump settings on an almost daily basis to keep up with Luke’s growing, changing body. The smooth little Pod is safe from his hands, and if he bangs it up or loses it in the pool – no worries about an expensive piece of equipment.

The Bad

  • Freestyle “Lite” vs. Regular strip debacle – Omnipod officially only supports Free Regular strips, but both work in the PDM and our rep told us it didn’t matter. The packaging made it very difficult for Medco to tell the difference, and we ended up with Freestyle Lite strips. A month later, we got a crappy A1C (8.8) that didn’t line up with numbers in the PDM or Dex. I found out from others who’d also had this experience that sometimes Freestyle Lite strips read lower for some individuals. We pulled out the Ping, another Freestyle meter, control solutions, and our fingers, and spent a weekend checking every possible combination of strips, meters, and calibration #s. Turned out Freestyle Lites read 20-30 points lower for Luke, and resetting the calibration to 18 gave a reading closest to the others. We then got a shipment of Regular strips, which we’re now using – curious to see if our next A1C is closer to the PDM and Dex #s.
  • PDM didn’t track correction IOB – Early on, daycare got a PDM error 5, which seemed to be a strip error. An hour later, Luke’s blood sugar dropped rapidly (double arrows down). Our nanny looked at the paper log and figured out that the correction IOB wasn’t being tracked in the PDM. Luke had been bolused twice for a very high BG and had way too much insulin in his system (juice away!). Omnipod replaced the PDM (to their credit, they very readily replace PDMs), gave us a free backup, and reported the error up their management chain. Their manual is very vague about what issues error messages indicate, so we now investigate any error very carefully.
  • Need smaller basal increments – There are a few hours during the day when Luke’s basal needs to be lower than the smallest .05/hour. With Animus, we could set .025/hour or even zero, which is great for small kids. We give free carbs to counter the .05/hour, but it’s one more thing to remember.
  • Limited real estate – Since the Pod is much larger than the average set, it can’t be put in as many places. We can only use Luke’s butt, which is looking pretty chewed up. I’m taking comfort from the fact that other young podders seem to make it work, but – I want the smaller pod this year!

The Ugly

Ain’t nothing ugly about it! Like so many little things, that makes a huge difference. Seeing Luke attached to something that looked and felt like a piece of hospital equipment (with a DOS interface) was depressing. Using a smartphone-like UI and pod feels like we’ve moved into this century, where diabetes is another complicated facet of daily life that can be tracked and managed. In a subtle way, it gives us hope, which is a very big thing.