We’re going to diabetes camp in August! Yes WE. The whole family is heading to Massachusetts for 4 days. I’m excited – I have yet to hear someone not praise the benefits of diabetes camp.
I originally had a little trouble finding the program we’re going to at The Barton Center. I ultimately got the details from Caleb’s endo, but thought it might be useful to start a list of camps by geographical location.
So if you and/or your child are planning to attend a diabetes camp, or if you know of a great diabetes camp, won’t you add the link of their site to the list? Just click on the big blue circle. Please include a geographical reference when you post the name for easy reference. If you’ve blogged about your camp experience and want to include that link, go ahead, just please list the camp name and location where it asks for “Your Name”.
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.
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:
yogurt covered raisins,
That’s it – quick and to the point.
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).
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?
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.
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.
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.
Three years ago, on April 24, 2007, shortly after being diagnosed with type 1 diabetes, Caleb started pumping insulin. I remember this date as much as I remember his birthday. There were lots of smiles and celebration. It was a huge relief. It meant more freedom to eat, drink and be merry. It meant less shots and less pain. It meant me not having to put on a performance pretending that three 50 carb meals and three 20 carb snacks, precisely timed, included exactly what Caleb wanted to satisfy his appetite every day.
Since then, Caleb has used more than 450 Pods, has pumped more than 15,000 units of insulin and consumed more than 220,000 carbohydrates.
He’s also eaten pizza, devoured cupcakes, dined on Chinese food, eaten off-schedule, partaken in indulgent Thanksgiving feasts, and enjoyed goodies from his trick-or-treat bag. Don’t get me wrong – there’s a lot of healthy eating in between that would make Jamie Oliver proud, but those of you who understand diabetes appreciate how difficult eating pizza and carb-filled cupcakes can be. Pumping makes it easier for Caleb, if not just simply possible.
As demanding as managing type 1 diabetes is, I think often of what it was. I am thankful that Caleb has a pump available to him to make it less limiting than just 10 or 20 years ago.
In appreciation of allowing a photo of Caleb to be included in their 2009 annual report, Insulet has made a donation of $500 in Caleb’s name to the Faustman Labs at Massachussettes General Hospital. Dr. Denise Faustman and her team are doing such important work to find a cure for type 1 diabetes and I’m thrilled that Insulet has supported them.
Caleb also received an autographed poster of Kris Freeman with the inscription, “Dream big, Caleb!” As you can see, he was over the moon about it.
Caleb wrote thank you notes to both Kris and Insulet. Here is his note to Kris, spelling, punctuation and all:
Dear Kris Freeman,
I think you should be proud because I am a kid that looks up to you. Thank you for the poster. I was really excited when I saw you on it.
You are my inspiration because when I see you, I feel like I’m not the only one with diabetes.
I would always want an American to win a race, but I would escpecially want you to win! Good luck!
extra love From the big dreamer…
Thank you to all the pump manufacturers for making devices that make life with diabetes a little better for so many. Please keep working to make improvements. As great as pumps are, they are but crude replacements for a functioning human pancreas, and people who live with this every day deserve better.
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.
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.
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.
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.”
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 himselfis 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.