Dream a little dream. Caleb’s view of life with a cure.

Day 7 of Diabetes Blog Week.

Dream a little dream – life after a cure.

What do you think life would be like if a cure was discovered and you no longer had diabetes?
I would feel like I wouldn’t have to do anything like check my sugar.  I would feel like I was free from diabetes.  I would be happy.

I think I would be bored sometimes because of all the things I wouldn’t have to do.  Like I would feel like I was forgetting something if I didn’t do anything before I ate.

I think I might feel like I was vibrating where DexCom usually is because I would remember that.  My fingers and toes wouldn’t look like they had holes in them.

I would have a celebration with a bunch of meters around a table for decoration and then make a cake with a meter on it that says “100” and under that “Cure for D”.   We could also make a piñata in the shape of a pricker and make a big over-sized hand to beat it with.  Since the pricker is normally poking the hand, the hand will have a chance to win.

Day 1 – A day in the life of…diabetes.

Day 2 – Making the low go.

Day 3 – Your biggest supporter.

Day 4 – To carb or not to carb.

Day 5 – Let’s get moving.

Day 6 – Diabetes Snapshots.

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Diabetes Snapshots. Of Caleb and more.

Day 6 of Diabetes Blog Week.

Diabetes Snapshots

One of those magical moments.
Caleb being Caleb.
4 months worth.
Test strip fun - a younger Caleb.
Filling an OmniPod syringe.
World Diabetes Day
WDD Big Blue Test - brotherly solidarity.
WDD - Lila with blue nails.
Lila emulating Caleb.
These are Caleb's numbers on his 7th birthday.
In the t-ball field with Dad. Always a watchful eye both on the call and on Caleb.
Heading to Yankees stadium. We had a great save on pretzel carbs by the Twitter team. Click to read.
WDD - Hands encircled in blue glow.
Total support - Caleb with father, brother, sister, mother.

Day 1 – A day in the life of…diabetes

Day 2 – Making the low go.

Day 3 – Your biggest supporter.

Day 4 – To carb or not to carb.

Day 5 – Let’s get moving.

Tomorrow’s topic: Dream a little dream.

To carb or not to carb. As Caleb sees it.

Day 4 of Diabetes Blog Week.

To carb or not to carb. Today let’s blog about what we eat. And perhaps what we don’t eat.

Chomping on a granny smith - 20 carbs.

In Caleb’s words (sorry, but this is a bit of a ramble):

I don’t eat peanut butter because I’m allergic to it. I don’t eat frogs, rocks, grass, slime or anything like that.

I like apples, cheese and crackers, pretzels, Nutrigrain bars for snacks and sandwiches, yogurt parfaits, peppers and fruit for lunch. I like cereal, muffins, toast, waffles and oatmeal for breakfast. I like pasta, chicken parm (but I don’t like eggplant parm) tacos, lentil soup and chili for dinner and cake, cookies or fruit for dessert. One time Dad made a wrap with sausage, egg and cheese and I liked that. I also like pizza, Chinese food and salad. I like cucumbers, carrots, Swiss cheese, pears, bananas, grapes, strawberries, mangoes, peaches. I like every kind of fruit there is. Ice pops, ice cream and jolly ranchers are good.

I think he would have gone on forever, but at this point, I just said, “Thank you, that’s enough.”

I worry, of course, about the impact that diabetes has on Caleb, both physically and emotionally. I worry about whether he feels restricted when it comes to food. There is nothing that I say “no” to because of diabetes, but there are things that I avoid because of the impact that they have on Caleb’s blood sugar. I am pleased that his response showed no indication of that. The fact that Caleb does not eat frogs or rocks or slime has absolutely nothing to do with their carb count, fat content or impact to his blood sugars – I promise.

Chowing down on Dad's hamburger 65 carbs with salad and milk.
Feasting on Mom's chicken pot pie - 70 carbs all in.

Day 1 – A day in the life of…diabetes.

Day 2 – Making the low go.

Day 3 – Your biggest supporter.

Tomorrow’s topic – Let’s get moving.

Your biggest supporter. In Caleb’s words.

There were lots of great suggestions to treat lows yesterday. I’m glad to have some new ideas. Thank you everyone!

Day 3 of Diabetes Blog Week.

Your biggest supporter. Today it’s time to gush and brag about your biggest supporter.

Caleb gets lots of support from many.  Nurse Ronnie, his school nurse, is a true contender for being his biggest supporter.  Any of his family members would be viable options.  He thinks differently.

Nick Jonas talks about his fight against juvenile diabetes at the National Press Club in Washington on August 24, 2009.

In terms of diabetes, who is your biggest supporter? Without hesitation, Caleb responds:
Nick Jonas.

Why?
I like him because he likes music and I like music.  He has diabetes so I feel like I can perform like him when I grow up because I think I want to be a musician.

Caleb’s brother, Colin, who is wise beyond his ten years, asks:
What about Mom?

Caleb responds:
Oh yeah because she will always drive her car into school and save me when I need it like she’s Super Pod Woman.

I love you mom.

Caleb imitating Mom as "Super Pod Woman" driving to school to "save" him.

Day 1 – A day in the life of…diabetes.

Day 2 – Making the low go.

Tomorrow’s topic – To carb or not to carb.

Making the low go.

Just part of the stash.

Thanks to everyone who checked in yesterday! Caleb really enjoyed reading all your comments. He sat and smiled and even chuckled out loud a couple of times. He has no idea what the food police are, but he found that reference downright hysterical.

It was great to read all your Day 1 posts and the different ways you all went about describing your day in the life of diabetes.

Caleb’s contribution today is most definitely short, and undeniably sweet!

Day 2 of Diabetes Blog Week.

Making the low go. Tell us your favorite way to treat a low.

Caleb’s top choices in his words:
Mom, it really doesn’t matter to me. I use lots of sugar tablets. My favorite is apple because they are sour. I use them especially at school because it’s easy, but I also like:

juice,

raisins,

yogurt covered raisins,

sour Skittles,

Starbursts,

Yogos,

sugar cubes,

sugar packets,

Swedish fish,

dried apricots

and pretzels.

That’s it – quick and to the point.

Unsealed and ready to go.
Unsealed and ready to go.

I try to unseal all the containers as soon as I get them so I don’t have to waste time with those nasty buggers when Caleb needs sugar FAST!

As a side note, Caleb says they are easy, but he’s told me before that he prefers glucose tabs at school because they appear more like medicine.  It makes him uncomfortable to eat a “treat” or drink juice around the other kids since they don’t also get to indulge (or perhaps its more like avoiding the envious eyes around the classroom).

If you missed it, Day 1 – A day in the life with…diabetes.

Tomorrow’s topic: Your Biggest Supporter.

A day in the life…with diabetes.

Just another day with diabetes.

Thanks to my fellow North-Easterner, Karen, for coming up with the idea of Diabetes Blog Week. I’m excited to be undertaking this week of blog posts with so many who have become my friends over the past year or so.  I’m guessing my RSS reader will explode.  Assuming yours will too, I’m keeping my posts short and sweet.

There’s something extra special about this week’s posts – they will be Caleb’s. This is Caleb… will actually be coming straight from the horse’s mouth.

So here we go.

Day 1 – A day in the life…with diabetes.

How would you describe your days in terms of diabetes?
It’s kindof whacko when you think about it, but I feel normal about it.  When I wake up, I just feel like it’s any other day.  It doesn’t bother me to check my sugar or do the other things I have to do.

It can sometimes make me busy. I check my blood sugar all the time and I sometimes have to take a break from what I’m doing.  Sometimes I feel low and I feel crummy.

How much of your day do you spend thinking about diabetes?
Not much.

What about school?
It’s really busy at school because I have to do a lot of school work and I have keep a routine about my diabetes, like checking with the nurse at 9:30, at lunch-time and before I go home, plus anytime I feel low.

Pod changes?
Changing my Pod can be stressful because it hurts sometimes, but I’m pretty used to it so lots of times it doesn’t hurt too much at all.

Eating?
Why do I have to talk about eating?  Everyone eats.  I have to bolus myself for whatever carbs I eat and Mom writes them down in a journal for school, but I can still eat whatever I want.

I chose the above picture for this post because of the story it tells.  I took it to commemorate Caleb’s first day of baseball.  Upon closer examination, I noticed several reminders of diabetes.  The tiger striped medical ID bracelet, the SPIbelt that holds his DexCom receiver, the open cabinet with his diabetes supplies peeking out, and even the stack of newspapers with the recent article of Caleb and his diabetes.  Just another day.

Day 2’s topic will be: “Making the low go”. See you tomorrow!

Super Bolus

Super Bolus by John Walsh
Super Bolus by John Walsh

First things first: this approach works for Caleb. It may or may not work for you. I am by no means suggesting that anyone should apply the following theories to their diabetes care. I am only explaining what I do for Caleb.

For weeks, Caleb’s most predictable BG of the day was pre-lunch. Without exception it had been in range. It was sensor change day and we were operating in the blind start-up period. No worries though because this time of day hadn’t posed an issue in quite a while.

It’s approaching lunch time so let’s do a finger stick. 289.

289?

Okay. Oh well. It happens. There was more fiber in his breakfast than usual and he was a little low at the postprandial check. Ah yes, hindsight is 20/20. Moving on.  Now back to this 298 and we are getting hungry for lunch.

Super bolus.

John Walsh explains it as follows: “A Super Bolus is created when some of the basal insulin delivery is stopped or partially reduced, and delivered instead as additional bolus insulin on top of a normal carb or correction bolus.”

The intent is to get glucose levels back in range quickly without inducing hypoglycemia. Here is how Caleb’s super bolus went that day:

Correction: 1.50 units, plus

Meal bolus for 50 carbs: 2.00 units, plus

Basal for the next two hours: 0.70 units, equals

Total units delivered: 4.20 units.

Lastly (this is critical) turn basal to “off” for two hours.

The change in the timing of the basal insulin makes all the difference.  Front-loading it and delivering it with the meal and correction bolus makes it act faster and all at once, thus bringing glucose levels back in range sooner.  If left as basal, the end result will be the same, but it will take more time and hyperglycemia will last longer.  The same amount of insulin is delivered when using a super bolus, it is only the timing that is different.

Back to life, start preparing lunch.

1/2 hour after superbolus: 169

Perfect. Coming down fast and lunch is ready, let’s eat. 50 carbs consumed.

1 hour after superbolus (1/2 hour after eating 50 carbs): 109

Excellent. The first time I tried this, I panicked a little at this point.  A 109 an hour after a bolus that large is cause for worry.  But his basal had been zero for an hour and he still has food in his system.  Plus his basal will be zero for another hour.

DexCom had been calibrated with that lovely 289, which we confirmed after washing hands with a 288. DexCom showed him cruising between 85 and 100 over the next hour.

2 hours after super bolus: 89.  Wonderful.

I know a bolus of that size is still hanging around in Caleb’s system beyond the 2 hour insulin duration that we use. However Caleb’s basal insulin has just now resumed.  He hasn’t received any basal or other delivery of insulin for the last two hours.  Any tail of insulin duration from that super bolus is required for his basal needs.

And it worked.  He continued to hover with a nice flat arrow through the afternoon until dinnertime when a finger stick confirmed a BG of 98.

I invite you to read more of what John Walsh has to say about using a super bolus. He suggests its use for high glycemic foods or large intakes of food in order to avoid blood glucose spikes. I haven’t tried in those situations yet, but I plan to. He also speaks of pumps giving us the option to deliver a super bolus automatically. The thought of it gives me chills.

In what ways have you used the super bolus?

“Blood Brothers” – Caleb, Nick Jonas and the Yankees

The Danbury News-Times featured a story about Caleb, his love of baseball and his meeting with Nick Jonas. Thank you Brian for contacting us and Sandi for doing such a great job on the story!

If you missed it, here’s my write-up of when Caleb and Nick met.

Caleb holding the Danbury News-Times, April 11, 2010

Ready to Play: Danbury boy shares a bond with pop star Nick Jonas

Sandra Diamond Fox, Contributing Writer

April has finally arrived and children everywhere are practicing for baseball season, which begins later this month. One kid who’s especially excited about playing again is 7-year-old Caleb Schlissel of Danbury.

For Caleb — who has always lived and breathed baseball — the season starts Friday with the Danbury Youth Baseball league.

“Before he could walk, he had a ball in his hand,” says Caleb’s mother, Lorraine Sisto. “For his first birthday, he had a ball-themed party with a cake in the shape of a baseball.”

Caleb plans on becoming a pitcher for the New York Yankees and says nothing will stand in his way — not even Type 1 diabetes, which he’s had for over three years.

That would explain why he chose baseball as the subject of the Bayer “Express Your Simple Wins Creativity Contest” he entered — and won.

The contest involved 17-year-old singer Nick Jonas of the Jonas Brothers pop/rock band, who also has Type 1 diabetes. It was presented in conjunction with Bayer Healthcare Diabetes Care, which develops products that help simplify life for people with diabetes.

The nationwide contest was open to people ages 6 to 18 who are dealing with diabetes. Contestants were asked to put together a 15- to 30-second video demonstrating their “Simple Wins: small, everyday victories for managing diabetes.”

After the public voted online from more than 160 submissions, Jonas helped select Caleb’s video as one of three grand prize winners. The other winners were Bradley Brown, 11, from Pennsylvania, and Lauren Hermsen, 17, of Illinois.

Caleb’s video — which Sisto filmed — shows him playing baseball and talking about how much he loves the sport.

“Everyone in our family (which also includes father David Schlissel, brother Colin, 9, and sister, Lila, 4), is a huge fan of Nick Jonas. We have seen him perform in concert four times,” Sisto says. “We pretty much follow all things Nick.”

As one of the grand prize winners, Bayer HealthCare flew Caleb and his mother to Disney’s Grand Floridian Resort & Spa in Florida for a meet and greet with Nick Jonas and the other winners.

When they first saw each other, “Nick went right up to Caleb and said `I know you’re a Yankees fan. You’re a good man,'” Sisto says. “He had remembered Caleb from his video.”

Jonas spoke to Caleb about his passion for baseball, and about living with diabetes. “Nick was very warm and very caring, and really focused on Caleb,” she adds of the meeting, which occurred in December.

“At the end of the event, they both pulled up their shirts to show each other their `pods,’ the OmniPod Insulin Management System, which supplies their bodies with insulin,” she says.

“I really liked meeting Nick because he has Type 1 diabetes like me. When I talked to him, I didn’t feel like I’m the only one with diabetes,” says Caleb, who is a first-grader at King Street Primary School in Danbury.

“It was very inspiring and encouraging to see a young person who is dealing with this and not letting it stop him from doing what he wants to do,” Sisto says.

Sisto spoke with Nick Jonas’ father, Paul Jonas (who goes by the name Kevin), who was also at the event. He told her his son is happy to be a role model for other kids with Type 1 diabetes.

“He said that when Nick was diagnosed, Nick didn’t have anyone to look up to who had the condition. Nick wants to be to other kids what he didn’t have for himself,” she says.

“This contest was put in place to help inspire kids with diabetes to express and share their simple wins,” says Judy Manning, director of consumer marketing for Bayer HealthCare Diabetes Care, located in Tarrytown, N.Y.

“Life alone for anyone is complicated, but it’s much more so for people living with diabetes. Between (the nuisance of) having to prick their finger to measure their blood sugar many times a day, and the social issues involved with caring for this disease in school and with friends, anything we can do to make it easier for them is important,” Manning says.

“With contests like these, we hope to inspire kids with diabetes to continue living their lives and not let diabetes get them down.”

As a grand prize winner, Caleb also received a glucose meter, a Jonas Nintendo DS game, a CD of Nick Jonas’ song “A Little Bit Longer” about living with diabetes; and an autographed copy of “Burning Up: On Tour with the Jonas Brothers,” a book written by all three Jonas brothers — Joe, Kevin and Nick.

This is the second contest Bayer Healthcare Diabetes Care held that involved Nick Jonas, who was diagnosed with diabetes when he was 13. In 2008, the company held a “Walk in Nick’s Shoes” sweepstakes. Winners got to meet Nick at the Juvenile Diabetes Walk in Los Angeles, Calif.

“When Caleb was first diagnosed, I didn’t know anyone else who had this condition. When I first learned about Nick, for me, it got me over a hump. It’s not easy to do the performances he does which are so physically demanding while managing his blood sugars. Here is someone with this condition who is succeeding and living his dream,” Sisto says. “This means so much to me.”

Since learning about Nick Jonas, Caleb’s parents have become aware of other people in the public eye who share their son’s condition. Two of them include competitive cross-country skier Kris Freeman and Chicago Bears quarterback Jay Cutler.

“We got so much more out of this experience than just the excitement of meeting a celebrity,” Sisto says. “We felt a comfort around Nick and around the other contest winners, which made us feel that it’s going to be OK. Caleb will be able to become anything he wants to be.”

To view Caleb Schlissel’s winning video, log onto http://www.nickssimplewins.com.

He’s just a kid

I’m sitting at the kitchen table after dinner with Caleb beside me finishing his homework.  While he’s working, I scan the computer and come across a video about a young boy living with diabetes.  He is younger than Caleb and there are pictures of lancets and needles and of this boy as a baby and a toddler, smiling and enjoying life and being cute, and clearly living with diabetes.

I realize that Caleb is crying.

I look at him and he says, “I’m not crying about my homework.”  I didn’t realize he was looking over my shoulder. “I’m sad because that boy has diabetes and he’s just a kid.”

“He’s just a kid”?

But Caleb himself is just a kid.

I am not exaggerating when I say that Caleb does not complain about anything he has to do because he lives with diabetes. There may be the occasional hem when we need to change a Pod, or a haw, when I ask him to check his sugar.  But these hems and haws are no different than his reactions to having to make his bed or put away his laundry.

Even when asked what he thinks about living with diabetes, he is relatively indifferent. It’s typically a “good”, “whatever”, “it doesn’t matter” response.  He’s got bigger things to worry about.

To see and hear him get upset at seeing a young child going through everything he goes through, things that never seem to phase him when he does them, left me speechless.

I took him on my lap and hugged him. I had many thoughts and emotions running through me, but no words. We both had tears. That seemed to say it all.

Caleb’s 1st Complete Pod Change – Part One

No bubbles

Caleb has often helped change his Pod, but he has never done a complete change from beginning to end. There’s a level of dexterity necessarily to fill the syringe that fills the Pod. Considering the size of the needle used to do this, I have always interceded at this step. (I once stabbed the tip of my finger with that needle – it left an entry and exit wound and a half inch bruise from one point to the other. That thing is serious.)

But Caleb is seven now, and is showing more independence and responsibility in many aspects of life. Why not diabetes too?

When asked if he wanted to do the whole change, his face lit up, “really?”

With some expired supplies, our extra PDM, and his good friend Rufus, Caleb practiced. He did beautifully. I’ve always thought the hardest part of a Pod change is getting the bubbles out of the syringe. He listened to my instruction and did it with relative ease. Much better than my first time, that’s for sure.

Since then, the favorite thing to do in the house is to care for Rufus with bolus’, injections, bg checks and lots of love.

Here’s the video I put together of this monumental occasion.  Stay tuned for Part Two.