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Posts from the ‘Diabetes and Family’ Category

Twelve Years Old.

My blog turns twelve years old today.

Twelve years ago, I was a twentysomething mess wondering if I was the only PWD who wanted to connect with other like-pancreased people.  Twelve years later, I’m a thirtysomething mess who has found her peers and benefitted from those connections in ways that far surpass any drop in A1C.

Grateful doesn’t even begin to touch how I feel about the last 12 years.  Thanks for being part of it.  And for making the journey with diabetes one we’re on together.

The NEW Jerry the Bear.

Since they’re local to me here in Rhode Island, I drove up to the Jerry the Bear office to meet with my friends Aaron Horowitz and Hannah Chung, creators of Jerry the Bear.

“It’s awesome to see you guys! Where have you been the last few years?”

After hugs and hellos, I realized my question was unfair. Because they haven’t been hiding but instead, the team behind Jerry the Bear has been working tirelessly to change their business in efforts to meet their mission of getting Jerry into the hands of every child diagnosed with type 1 diabetes globally.

That’s quite a mission. But if anyone can accomplish this goal, the driven, passionate, creative, and all-heart team behind Jerry can.

Just your friendly neighborhood Jerry the Bear!

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“As a business, we know that Jerry the Bear works, but in order to succeed and survive, we need to make the business work. We’ve been working to move our company from a direct to consumer model to a business-to-business model. This means we’re not selling our bears directly to people but instead have partnered with two different distributors in order to get Jerry into kids’ hands,” said Jerry the Bear co-founder and CEO, Aaron Horowitz.

Namely, they’ve partnered with Beyond Type 1 to handle domestic and international orders (except Canada) and Diabetes Express for our neighbors to the north.

“We want to improve life with diabetes for kids by giving them something positive to associate with diabetes,” said Hannah Chung, co-founder and CCO.

The Sproutel team did a lot of research in developing new Jerry. In addition to marathon sessions with post it notes, building paper prototypes, and “body storming,” the team went into the field to access kids in their natural play habitats. Hannah told me that she went to playgrounds during the development phase in order to work with kids and see if they could hold a bear and a phone at the same time, testing out how the app might be physically managed by their target age range of 4 – 9 years old.

“I’d go into the playground with a bear peeking out of the back of my backpack and a handful of permission slips, talking with kids and their parents. We play games like Simon Says in order to see if kids could find the bear’s belly button or elbow, and whether or not they preferred phones or tablets.”

The mental image of Hannah traipsing through Rhode Island playgrounds with a mission to improve the diabetes experience and a stuffed animal keeping watch over her shoulder sums up the Jerry philosophy for me. This team – Hannah, Aaron, Joel Schwartz, and Brian Oley – are changing the way newly diagnosed kids with diabetes are introduced to diabetes.

I think about my own diagnosis back in 1986 – what a difference it would have made to be handed a friendly bear instead of an orange to practice injections on.

In meeting the new Jerry the Bear, the first thing I noticed was that the touch screen tummy of his predecessor was gone. Coming in at a price point of $55 versus the $299 cost of Original Jerry, New Jerry (henceforth known simply as Jerry) is a soft, plush animal without any plastic or metal hardware attached to him. He’s snuggle-ready. Looking similar to my daughter’s army of Build A Bear stuffed animals and sporting giant, Beanie Boo-esque eyes, Jerry looks like huggable buddy, the perfect comfort companion for kids with diabetes.

What’s replaced the touch screen belly, however, is an amazing upgrade. Jerry now comes with a digital world that lives on an iOS or Android device, and the app is completely free. And on Jerry’s plush body are scannable patches that serve as unique QR codes, giving rise to augmented reality play.

“We were excited to see Pokemon Go! come out and see such success,” said Aaron. “Jerry has that same kind of virtual world superimposed onto the real world. Now it is easier for Jerry’s actions to be procedurally detailed.”

Checking Jerry's BG.

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This means that you’re not just squeezing the pad of Jerry’s finger, but instead you’re walking through all the details of checking blood sugar, from putting the test strip into the meter, pricking his finger, squeezing out a drop of blood, and applying the blood to the strip. The tasks feel real, and they feel thorough.

DO feed the bear!

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The app doesn’t require an actual Jerry the Bear stuffed animal to engage in Jerry’s world, though, and that’s one of my favorite upgrades to this experience. While Jerry himself requires a purchase, the app is free for download. And with that download comes a full world of diabetes experiential learning through the Jerry lens.

“My favorite things about [new] Jerry are that you can explore Jerry’s world in full just on the app, and also that scanning his sites gives you detailed steps around how to use Jerry’s diabetes kit,” shared Hannah. Aaron agreed, adding, “Also that you can experience Jerry instantly through the app. And that the action of scanning changes the world around you, through augmented reality play.”

“What’s the weirdest thing you saw during the test group sessions?” I asked.

Aaron laughed. “You wouldn’t believe how often kids feed Jerry’s butt.”

So there’s that.

While Jerry is aimed at helping kids in the  4 – 9 year old range who are newly diagnosed with diabetes, his potential reaches FAR past that specific demographic.  Jerry, in our home, has been used to help my daughter understand her mother’s diabetes.  He’s been a teaching tool to show kids in her class and our neighborhood what diabetes is all about.  Imagine Jerry as part of a diabetes camp experience, where teenagers can lean on levity and being silly with a stuffed animal to work through some of their frustrations.  Or helping open up discussions for all age ranges about diabetes distress or burnout.  Jerry could be a powerful conduit for conversation for all people touched by diabetes.

This little bear has potential, and plenty of it.

One more thing:  I’d love to share Jerry with two Six Until Me readers, and all you need to do is leave a comment.  Through a random number generator, I’ll select two commenters to ship a snuggly Jerry to.  This giveaway will be open until Sunday night at midnight eastern time, and winners will be notified by email.

Want to enter?  Leave a comment, and be sure to include your email!

You can check out Jerry the Bear’s new app by downloading it from iTunes or Google Play. You can also follow Jerry on Twitter, Facebook, or Instagram. To order your own Jerry, visit Beyond Type 1 (or Diabetes Express, if you’re in Canada). Thanks to the Sproutel team for letting me come over and play!

Word Choice.

“Mom, why do you wear that bracelet again?”

She knows why, but every few months, she asks again.  Why do I wear a medical alert bracelet?  Why is that thing as important to leaving the house as having my keys?

“I wear it because it says I have diabetes, just in case someone needs to know.”

“Why would they need to know?”

“In case I wasn’t able to say it myself.  Like if we happened to be in an accident or something, or if I was asleep.”

She thinks about this.

Medical alert bracelet #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

“Is this why we have a house phone?”

“Yes.”  She knows the reason but asks anyway.  We decided to get a landline telephone in the event that there was a storm that knocked the power out, or if we had a babysitter and needed to call the house.  Or if my husband or children ever needed to call 911 on my behalf.  “We have a house phone on the waaaaay off chance that I’d have trouble waking up because of a low blood sugar.  You know, if I was passed out.”

I forget that the words we use matter.  That they are easily confused and conflated.  That she’s just a little kid.

“Passed out?!!”

“Yes, but that’s a very rare thing.  It hasn’t ever happened to me.  It probably won’t ever happen, but it’s smart to be prepared, just in case.”

“PASSED OUT?!!!”

It was then that I remember hearing her and her friend talking about her friend’s grandmother, who had recently passed away.

“OUT, honey.  Not AWAY.  Passed out means I would be having trouble waking my brain and body up and need extra help.  Not dead.  It’s very different,”  I scooped her up and held her close, aiming to hug the panic away from her as I listed all the reasons why passed out was different from passed away and also how it wouldn’t ever happen to me, right?  Right.

The reality of my own thoughts every night before bed stood in contrast to the confidence in my voice talking to Birdy.  The thought is fleeting, but also sharp and cuts through my mettle, reminding me that diabetes looks easy and seems quiet but exists with an undercurrent of worry.

And I’m learning that I’m not the only one who worries.

Just Past Three.

Mr. Guy Smiley,

Hallelujah!!!  You have started SLEEPING and it makes me want to hit the caps lock and sing your praises.  Thank you, sweet boy, for finally deciding that nighttime is the best time to sleep.  I don’t even care if you ever nap predictably during the day because you sleep at night.  (Remind me I said that.)  Your else close around 8.30 pm, you sleep until about 11.30 pm, you wake to eat, and then you’re lights out until 7.30 the next morning.  THANK YOU.  I can tie my shoes again without becoming confused.  I remembered how to use the coffee maker.  I don’t cry while brushing my teeth.  HallelujahHallelujahHallelujah!!!

And not only are you sleeping, but you’re such a happy guy when you wake up.  Instant smiles, instant cooing, kicking your legs and flapping your arms like the happiest chicken there ever was.  You remind me so much of your sister with your morning joyousness, but you bring your own smiley guy flair to things.

We spent a lot of time together, you and I.  Big sister Birdy flies off to school every morning and Dad zips off to work, leaving you and I to try and make sense of the loads of emails, loads of laundry, and loads of diapers.  (That last one?  Ew.  Love you, but ew.)  You and I have done at least a dozen conference calls together, two or three video calls (those are tricky), and you’ve come to your first conference with me.  (Note:  Thanks, Tandem, for not thinking I was weird for bringing my mom and son to a conference with me, and to TCOYD for making my infant feel like part of the party.)  Working alongside you is a little complicated and sometimes distracted, but I’m inspired to keep pushing my boundaries because I want you to know that your mom is fueled by many interests and passions.  Just as I want you to be interested in so many different things.

For now, you’re most interested in talking.  And this little lion blanket thing that you have set your sights on gumming to death.  You also want to go for walks around the neighborhood in your stroller as often as we can, and you love, love being worn in the baby bjorn thing.  Just recently, we flipped you around in that baby carrier so that you face out and are able to see the world (instead of staring at my collarbone).  You love EVERYTHING.  I love that about you.

The Batman.

A photo posted by Kerri Sparling (@sixuntilme) on

You also love eating, and I’m still working to feed you.  You had a little trouble gaining weight at the outset (a combination of reflux plus falling asleep while eating), and even though I preferred to feed you myself, I had to start pumping breastmilk and using a bottle to ensure that you were getting a set number of ounces per feeding.  That’s kind of the system we’re still rocking at the moment – I feed you two or three times a day myself and the rest of your meals are via bottle.  My days are marked by three hour windows where I either check my blood sugar and then feed you or check and then pump. This means I am constantly pumping (insulin pump plus breast pump equals oh so many pumps) and constantly concerned about the stash of milk in our fridge.  I have ambitions of keeping you on breastmilk for several more months and I hope I can keep up the supply.  So far, I meet your needs.  (And even though I’m not one for supplements, etc. I am drinking a cup of this tea every day.  It might be helping.  It’s not hurting, at least.  And I’m developing a taste for black licorice as a weird side effect.)

Postpartum body blargh is in full effect, as you’re a little over three months old and I have not been on the ball in terms of self-care.  I am working to focus more on my diet in a consistently healthy way (eff off, pie … no wait, come back!!) and I’ve just recommitted to my exercise routine.  I have (blond) ambitions of burning any and all shapewear crap by next June.  Or, at the very least, feeling more like myself by then.

(Why am I writing about breastfeeding and postpartum body images in these letters to you?  Well, part of the reason why people read this blog is because I chronicle diabetes stuff, and it all plays in.  You’ll understand more when you’re older and you tune into the fact that I’ve spent a lot of time writing on the Internet.  I know, it’s weird.  Especially since we now have MentalNet, where you simply blink your eyes and your thoughts auto-publish to the cloud.  Man, picturing the future of the Internet is terrifying.)

We have plans to introduce you to some of our dearest-but-most-far-flung friends this month and you’re spending plenty of time with your aunts and your grandmas. Oh, and you’ll spend your first Christmas on the outside, with your sister very much looking forward to sharing the excitement of Christmas morning with you. You’re very, very loved, kiddo.  You’re a little over three months old but you’ve owned real estate in my heart for ages.

(And thank you for falling asleep at night and sleeping for several hours.  Seriously.  All of me thanks you.  🙂 )

Love,
mom

My Third Child.

Diabetes’s needs are incessant.  WAAH I need to have my blood sugar checked WAAH I need a snack WAAH the Dexcom sensor needs swapping WAAH what do you mean, reorder insulin WAAH chronic illness is forever WAAAAAAAAAAH.  This disease whines and cajoles for attention all day long.

Over the weekend, I stood at the bathroom counter changing my infusion set while Birdy brushed her teeth and the little guy sat singing in his bouncy chair.  A loud burst of noise not unlike an industrial-sized coffee carafe percolating came from the bouncy chair, which prompted Birdy to announce (through a mouthful of toothpaste suds), “He needs a diaper change for sure.”

True.  (And ew.  Ew-true.)

Diabetes always needs a diaper change, too.  But diabetes is not cute.  And while it also wakes me up in the middle of the night for feedings, it doesn’t reward me with a toothless smile or a snuggle.  These days, diabetes management feels thankless, frustrating, and very ARGHH would you just go AWAY?!  Getting into the swing of things with two kids is still an adjustment and I’d like very much if diabetes would go quiet for a spell.

Unlike with my daughter, I am not deep into diabetes burnout this postpartum cycle, but I’m not a big fan of all the diabetes crap that’s still on tap.  Small victories keep me going at the moment, like keeping up with inputting the data into my pump (so it can properly calculate my insulin doses instead of me SWAG’ing things) and trying to treat lows conservatively.  But I have blood work orders in my wallet that I still haven’t followed through on (they’ve been in my billfold for three weeks now).  My fasting BG checks are sometimes taking place two hours after I’m woken up by Guy Smiley.  I’m wearing the Dexcom but there are hours worth of highs that ride for too long.  I reorder my supplies on time but mostly because I’ve reached my deductible.

I need to shake this settled snow globe of apathy that my diabetes has become.

Oh hey, awesome turtleneck-wearing cat in a snow globe.

I have an appointment with a new, local endocrinology team at the end of the month and I’m actually looking forward to it.  This appointment will be a paradigm shift in my care, taking a break after 30 years at Joslin. Like hitting the reset button, bringing my care hyperlocal and giving the visits a facelift.

Until then, I’m trying to parent all three “kids” in my house and keep them all safe, sound, and freshly-diapered.

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