Bayer, Insulet and Caleb

Should you see a Bayer Diabetes Care pamphlet the next time you visit your endo that looks like this:

Nick's Simple Wins

Open it up and you may find another familiar face:

2009 Contest winners with Nick

Insulet held a conference this week that you can listen to here.  Caleb is mentioned at the end as an example how OmniPod helps improve the way you live with diabetes – in Caleb’s case, by swimming freely.

Caleb in his "backyard".

Pumpiversary, Podiversary

First day of Pumping with OmniPod
April 24th, 2007, 1st day of pumping - OmniPod

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.

Caleb pumps with the OmniPodThat choice was an easy one for us. Since the day he started pumping, at just 4 years old, he was able to deliver his own bolus’.  He, himself has delivered each dose of insulin while at school, including preschool.  From the beginning, he has helped change his Pod and just recently, at the age of seven, he has started doing Pod changes completely by himself.

Inside Cover

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 with Kris Freeman poster

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…

Caleb!

Caleb with thank yous to Kris Freeman & Insulet

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.

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.

“This is Caleb…” – the origin #dblogday

A little over a year after Caleb was diagnosed, when the fog had cleared, we had experienced all our “firsts” and things were more or less chugging along, my attentions shifted.  The present was under control, now what about the future?

I made my first video.  The intent was to bring attention to work being done to find a cure for type 1 diabetes.  It turned into so much more than that.  It entered me into a world I hadn’t realized existed, or at least one that I could be so much a part of.

Caleb, his face, his story, his personality, have all stretched across the world and brought me, and him, within reach of a support system that we would not otherwise have. I am so grateful for this unexpected byproduct.

This is my first work.  When I made it, I could not watch it without crying.  No matter how many times I watched it, I would choke up.  Now when I watch it, there are two things that I note: (1) how much more effective my message could have been had I made it more succinctly (yes, it’s long – sorry), and (2) how my perspective has changed.  The story is still true.  The spirit of the message still resounds.  But now I know the Caleb who has been living with diabetes for almost three years.  He has adapted.  He has flourished.  He has shown me what perseverance is.  Diabetes does not define Caleb. He just happens to be living with it.  I can watch the video now without tears because I know that Caleb.

So, as this and other videos I have made begin, This is Caleb…

At least a part of him.

I pumped. Once.

Lorraine, Caleb's mom, with inserted OmniPod, pumping saline.
Lorraine, Caleb's mom, with inserted OmniPod, pumping saline.

That’s me.  No, that’s not a demo Pod. That’s the real thing.

No, I do not have diabetes.

When Caleb started pumping, so did I.  I wanted to know exactly what the “virtually pain-free” insertion felt like.  I had heard it compared to a finger stick. Caleb was going to endure this for the foreseeable future.  I had been able to directly feel a finger stick, so too did I want to feel a Pod insertion.

So, shortly after Caleb’s first “click”, to which he reacted with a surprising, “Yow!”, I heard my “click”.  The trainer had filled a Pod with saline and we repeated what we had just done with Caleb.

It was no finger stick.  I had my own, “Yow!” although I kept it to myself.  It was surprising because of what I had read about the pain of insertion from the Insulet site as well as from other OmniPod users.  I have never used a traditional infusion set, so I cannot directly compare, but I have heard from those who have used both and they seem to agree that the OmniPod is less painful.  With perspective, it may indeed be more like a finger stick, but it was a definite pinch.

I recently asked Caleb to talk about what the insertion feels like.  Here is a video of his response (the “Yows” are now few and far between):

I wore the saline-infusing Pod as Caleb wore his insulin-infusing Pod.  No bolus’ for me of course.  But I slept with it, showered with it and went about my life with it.  It was not in the way.  I did forget about.  It did not seem obvious under the clothes I wore.

Then, I took it off.  I ripped it right off.  It didn’t hurt.  I took it off and threw it away. That was it.  Done.  Over.

Caleb, of course, has been attached to a Pod 24/7 for the last eight hundred and twenty-five days.  Me, only three.  I pumped.  Once.

When Caleb started pumping, so did I.

I finished.  Caleb has not.

I wish it were the other way around.

You decide

Caleb with his first Pod.
Caleb with his first Pod.

Deciding to pump was not hard.  Even deciding which pump was not hard.  What came after was a surprising challenge.

Six weeks after diagnosis, Caleb had his first endo appointment.  We covered many bases at this meeting, including insulin pumps.

I labor over the smallest decisions.  There is little that I take lightly.  I research, ponder, marinate, research a little more, think, inquire and finally decide.  When I decide, I am confident and committed.  By that point, I know what I want.

Pumping for Caleb was no different.

The nurse pulled out pump options and explained their advantages:

Animas: it allows for the smallest basal rate which is particularly important for children

Cozmore: it, in her opinion, had the best software

MiniMed: it has an integrated CGM

I sat with Caleb and my husband.  I listened to her describe the devices.  I waited for her to finish and asked, “what about the OmniPod“.

The nurse responded, “Caleb can’t use that.  He’s much too small.  It’s too big for his body.”

Perhaps what was said was not quite as surprising as the way it was said.  She implied that we were fools to consider it and further, we really had no clue what we were talking about. We were asked, “where did you hear about it”, as if it was important to know the source of our supposed misinformation.  We were “pooh-poohed”.

If you know me, you know that I am not afraid to speak my mind.  I am not afraid to go against the grain.  I am stubborn and outspoken.

If you know me, your eyebrows likely raised when you read the nurse’s response and you may have chuckled thinking something along the lines of, “this nurse has no idea who she is dealing with.”

A civil discussion ensued.  I explained that it was not too big.  That I knew of a child who was two when he began using it with success (Caleb was then four).  I had spoken to that child’s mother.  I explained that although I agreed the portion adhered to the body is bigger, the overall device that was effectively attached to the body was smaller.  She really tried to talk us out of it.  But her basis was invalid based upon what we knew.  We did not come to our conclusion without careful thought.  We could be wrong, but we wanted to at least give this a try.

With a smirk, she conceded.  I envisioned, “you’ll see”, going through her mind.

Shortly thereafter, Caleb began pumping with the OmniPod.  We dealt with various people at the endo office as he got started.  Everyone’s reaction included surprise that someone of Caleb’s age would use the OmniPod.  Nevertheless, they supported it.

Caleb has been pumping with the OmniPod for over two years.  We have never had any issues with the size of the Pod.  At the time, there was no one else at his endo’s office under the age of twelve using it.  For several of Caleb’s endo visits after he started pumping, the tables were turned.  We were being asked more questions than we were asking.  They could see that the OmniPod was a viable option for children Caleb’s age, and they wanted to learn from our experiences so they could advise other patients.

I believe Caleb’s endo felt they were providing reasonable guidance.  Because the OmniPod was relatively new at the time, there was not a lot to draw upon and I believe they simply made some assumptions about its use.  I am appreciative that they were willing to support our choice, even when they did not agree with it.

This experience solidified my understanding that I am my son’s greatest advocate.  Even including doctors and nurses with the best intentions, only I truly have his best interests in mind.

I will continue to research, which includes consultation with Caleb’s doctors.  However, I will continue to make decisions that I, and soon, that both Caleb and I have concluded are the best for him, either because of or despite his doctor’s advice.