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It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Dr. Frederick Banting: In His Own Words

Today is November 14, 2014.

World Diabetes Day

I’ve spent the day taking care of routine stuff.

A dentist appointment. A trip to Costco. Dishes.

I’ve also periodically checked Sugar’s Nightscout screen to keep tabs on the basal changes I’ve been tweaking over the last couple of days.

(Sidebar: Haven’t heard of Nightscout? You should really check it out.)

Today I’ve thought a lot about Frederick Banting, and how thankful I am that he was born on November 14, 1891. Afterall, he discovered the miracle treatment that keeps my daughter alive today: Insulin.

Over the years, I’ve read many articles about Dr. Banting and the discovery of insulin, but I haven’t encountered very many direct quotes from the man himself. I know it’s silly, but sometimes I ponder what it would have been like to attend a conference with Dr. Banting headlining as the keynote speaker. Can you imagine the tweets, hashtags, and Facebook updates that would start trending from such an event???

#bantingisdabomb

So much has changed since that first injection of insulin was given to Leonard Thompson on January 11, 1922. Syringes have evolved from reusable to disposable. Today there are insulin pumps and continuous glucose monitors. The Bionic Pancreas and encapsulation sit on the horizon.

Yet so much has remained the same.

I read Dr. Banting’s Nobel Lecture for the first time today, and found myself awestruck at the similarities between life as we know it right now, and life as it existed when he delivered his address on September 15, 1925.

I’ll leave you with some of the profound excerpts of his words:

banting 1 banting 2

banting 3 banting 4

banting 5 banting 6

banting 7 banting 8

banting 9 banting 10

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Bionic: The Pick Up

We made the final turn, approaching Clara Barton Camp to pick up our girls, and it felt like we were moving in slow motion. As we moved past the back of their cabin to the parking lot, we were giddy with excitement. Misty and I couldn’t seem to stop the car fast enough! We hopped out and headed straight for their door…wondering along the way if we were supposed to check in somewhere beforehand, but knowing we were on a mission to get our arms around them first and foremost.

We stood at the door for a second.

They were there, smiling with their friends – oblivious to our arrival. I whispered her name at first…then a little louder…

She looked up, met my gaze, and rushed into my arms.

We cried a little. She hugged me tighter than she has in years … and then she told me she didn’t want to go home. She told me she didn’t want to take off her “BioPanky”. She asked if we had to go right away, or if she had some time.

I explained that we had all day. It was just after 10 am and the study didn’t end until 3. With that, she took a breath and then started to pull out all her parts and pieces. “Mom, I can’t wait to show you everything. This is the brain, and this is the insulin.” She was ripping the zippers open and pulling out pumps and tubing like rabbits out of a hat.

She was a very happy camper.

A very happy, grubby camper.

bionic addy (1)

The most glorious, happy, grubby camper I had ever seen.

“I chose Seahawk colors, Mom. Of course, you knew I would, right? Daddy would be so excited about that.”

–Beep Beep–

“Are you beeping, Honey? Do we need to call someone? Should I go get one of the nurses? What do you do when it beeps…”

“Mom.” She grabbed my arm. “Relax. It beeps all the time. I just ignore it. It’s doing what it’s supposed to be doing, so I don’t worry about it.”

Those words have lingered in my mind: “It’s doing what it’s supposed to be doing, so I don’t worry about it.”

The Bionic Pancreas had kept my daughter alive – and thriving – for five days and five nights. It was doing what it was supposed to be doing, and she wasn’t worried about her diabetes.

I don’t know if there has ever been a day in the past nine years that she could say she wasn’t worried about it — or, maybe not “worried” per se — but at least not THINKING about it.

Ignoring it.

Living life apart from it.

And, yet, there she was. Standing right before me, beeping without a care in the world about what her number was.

Her bunk was a mess, so we cleaned up that disaster. I made her change her shirt and brush her hair.

bionic belt (1)

(Once a mother, always I mother, I guess.)

Then it was time for a BG check and lunch.

bionicaction

She didn’t have to count exact carbs, but she did have to tell the device if she wanted a “smaller than usual”, “usual”, or “larger than usual” meal. Those definitions are individualized, and based on predetermined carb ranges the user enters into the device while setting it up. For Sugar, a “larger than usual meal” meant 80-100 carbs.

Off to the dining hall for lunch — she didn’t finish her cookie, but wanted a few more nachos, and then she wasn’t sure about this or that. Honestly, I have no idea how many carbs she actually ate between her excitement and coordinating with Ally to show us some of their camp songs/cheers. She just sat down, clapped her hands, beat the table, and ate a few bites of lunch in between. If she wanted more, she got more. When she was finished with something, she was finished. Neither of us were keeping a carb tally. It all seemed so…

Normal.

After lunch, most of the girls who weren’t in the study were gone. Sugar was trying to catch the few who were left to say good-bye and hug as many friends as she could, before eventually finding her way to the GaGa Pit

bionic gaga

Addy, Ally, and Elise…the final three girls left in the game!

I don’t even know how many games of this GaGa thing she played, but she loved it — as did all the other campers!!! Apparently GaGa is a popular game…who knew?!?!

What I do know, however, is that she played GaGa over and over and over — for about an hour and a half — without ever stopping to think about what her blood sugar was doing.  *AND* she did it after telling a device to give insulin for a “larger than usual” meal, then eating very randomly without really knowing for sure what her carb intake had been. She could have eaten too many or too few carbs, but it didn’t really matter, because the device was plugging along, doing its job…making a decision to give a little insulin, or a little glucagon, or do nothing…every 5 minutes without needing her to interrupt the game to make those decisions herself.

She just played.

And I just watched.

It was the first time since before her 2nd birthday that I witnessed my daughter simply being a healthy, happy child…running and playing carefree…without the burden of diabetes. I tried as hard as I could to savor those moments, because I knew they would be coming to an end. I studied every detail, and breathed in the sense of normalcy that accompanied each passing second. I committed everything to memory…her face was more relaxed; her movement was carefree; her smile brighter. She was experiencing life apart from the numbers — whatever they were — because she didn’t know, nor did she care.

I couldn’t get enough of watching her laughing and smiling and having fun. Nor could I seem to get enough of watching her do those things without the familiar worry in the back of my mind…replaying her previous carb counts and insulin dose/time while wondering if she should stop to check or find a snack.

She was, indeed, BIONIC.

{Stay tuned for the next part of her story. The study officially ends, she removes her “BioPanky”, and we have a chance to sit down with Ed Damiano to review some of her preliminary data.}

THIS POST IS PART OF A SERIES DOCUMENTING SUGAR’S EXPERIENCE IN THE 2014 BIONIC PANCREAS SUMMER CAMP STUDY.

FURTHER READING:

BIONIC: 9th Diaversary

On July 25, 2005, I sat in an ICU listening to machines beeping and buzzing while watching my unresponsive baby lying in a hospital crib. Her face was puffy and her eyes were swollen closed. Aside from breathing, she didn’t move very much.

The world hustled in to silence her alarms and prick her toes for blood drops every 30 minutes. They would come around again to draw arterial blood samples or attempt to restart a failed IV. All the while, I sat there, wondering how I would be able to keep her alive without a team of nurses and doctors waiting just outside the door.

She had three IVs in place: 1 for an insulin drip, 1 for a dextrose drip, and an extra for lab draws.

Poke – Beep – Push Buttons.

Insulin up.

Dextrose Down.

Insulin down.

Dextrose up.

And so it continued…poke – beep – push buttons…poke – beep – push buttons…for the better part of 2 days. It was a delicate dance between an IV drip of insulin and an IV drip of glucose.

I will never forget the doctor’s words to me that night:

“This was the last day of your daughter’s life. If you had not gotten help when you did, you would have put her to bed and she would have been gone by morning…”

I don’t remember much else about our conversation after hearing those words. He said the road ahead would be tedious. Frustrating. Exhausting. He told me this race would be a marathon, not a sprint.

He also told me we had won our first victory, simply because she was alive.

We came so close.

On July 25, 2014, my daughter sleeps in a cabin at diabetes camp. There are still people who sneak in during the night to poke her fingertips for drops of blood. Once again, there’s a team of nurses and doctors waiting just outside the door.

Soon, she will trial the Bionic Pancreas: a continuous infusion of insulin and glucagon…and the dance will begin again.

We’ve come a long way in the last nine years. I’m excited to see where the next nine takes us.

BP 1

There is HOPE.

This post is part of a series documenting Sugar’s experience in the 2014 Bionic Pancreas Summer Camp Study.

Further Reading:

Going Bionic: The Dropoff

I must have gone through her luggage three times that morning to make sure nothing had been lost since I packed (and re-packed) her bags a over a week earlier.

It was time to drop off our girls at diabetes camp for 2 weeks. Beyond that, it was also time to get them hooked up and ready to start participating in the 2014 Bionic Pancreas Summer Camp Study. Misty and I embarked on this journey after hearing Ed Damiano present at the CWD Focus on Technology Conference 8 months earlier. The nervous energy felt surreal after so many months of preparing, planning, and coordinating to make this trip a reality.

Bionic Pancreases

A table full of Bionic Pancreases

As soon as we arrived, there was paperwork to take care of, then a physical exam, and a meeting with the camp medical staff to discuss basal rates and bolus times and all the other stuff necessary to keep these kids alive.

Height and weight, blood pressure, temperature…then another weight check to make *ABSOLUTELY* sure (because the Bionic Pancreas delivers insulin and glucagon based on a person’s weight). A Dexcom insertion, a new meter, new strips, and a Spibelt

w collage 1

Then we had two hours to kill while waiting for the initial Dexcom calibration, but there was still plenty to do. Find the cabin, pick a bunk, unpack, lunch in the dining hall, swim test, visit the camp store, picture, activity selection…it was enough to keep us busy for 2 hours for sure!

Words really can’t accurately describe how beautiful camp is. Not only the accommodations, but the experience of being surrounded by so many adults with insulin pumps. The people in the dining hall, the people doing the swim test, the medical team. There were pumps everywhere.

Yes, camp is BEAUTIFUL.

w collage 2

And then it was time to give the study an official start time. Sugar was assigned to the second group of participants, which means she will wear the entire Bionic Pancreas system for five days, starting next Sunday. Ally, however, was assigned to the first group, which means she will wear the entire system for the first five days of camp.

Watching that countdown, knowing each of those girls were about to be completely controlled by a closed loop system was incredibly emotional. I’ll expand on those thoughts and feelings later, but Misty talks about her experience in that moment HERE.

When it was time to say good-bye, part of my heart stood still.

I know she will be a little more grown-up with more confidence, and more independence under her belt when I return to pick her up. And, while I also know this is the ultimate goal when raising each of my children, I couldn’t stop the tears from falling as I walked away.

In our last minute together, I held her close, felt her soft skin on my cheek, and nuzzled my face in her hair.

w and a 1

Good-bye, sweet girl.

I am so proud of you.

w and a 2

I’ll see you in two weeks.

This post is part of a series documenting Sugar’s experience in the 2014 Bionic Pancreas Summer Camp Study.

Further Reading:

Going BIONIC
Addy and Ally: A BIONIC Friendship

See more pictures HERE.

A Bionic Friendship: Introducing Addy and Ally

1

Addy was diagnosed with Type 1 Diabetes on July 25, 2005.

Ally was diagnosed with Type 1 Diabetes on February 10, 2009.

They live several states apart, and their paths probably wouldn’t have ever crossed if their mothers, Wendy and Misty, hadn’t been active bloggers in the Diabetes Online Community. Before Facebook and Twitter began defining the landscape of social media, Wendy and Misty were seeking online support by sharing their personal journeys of raising a child with diabetes through their online journals.

2

In 2010, Ally sent Addy a special little book she made about her “diabetes friends”…

3

Since then, the girls have kept in touch, supporting each other via e-mail…

4

And Skype…

5

And, most recently, text messaging (YIKES!)…

6

Addy and Ally (and their families) met for the first time in person at the 2012 CWD Friends for Life Conference

7

Then again in 2013

8

So, perhaps this IS a story about two girls…but it’s also a story about two families…

9

Two families who have three little girls each, the oldest of whom has Type 1 Diabetes.

Two families who long for the day their girls — and every person with T1D — will experience life without the constant “basal thinking” that is necessary to survive from one glucose check to the next.

Two families who are bonded through this journey, and whose lives have been forever changed because of Type 1 Diabetes.

10
This post is part of a series of updates documenting Addy and Ally’s experiences as part of a clinical trial for the Bionic Pancreas in the Summer of 2014.
Postscsript – I don’t generally use my daughter’s real name here, on the ol’ bloggy blog.
Each of my girls actually have their own cutsie nicknames, but I’m making an exception today, because putting the names “Addy and Ally” together is too sweet {pun intended} not to!
I know.
Stop laughing.
I’m really not that sappy all the time.

504 — Check.

I dropped of my younger two with a neighbor, before hustling to get Sugar and I to the school.

We walked in, signed the visitor log, and took a seat.

I could hardly believe it was time again.  Time to gather the troops to make sure everyone is on the same page. Time to run though the checks and balances.  Time to review the battle plan.

One by one, they began showing up.

The Vice Principle.
The Librarian.
The Music Teacher.
The Art Teacher.
Both PE Teachers.
The School Nurse.
The Health Assistant.
All three second grade teachers.
Her 1st grade teacher.

And us…my girl and me.

Gathered around a big conference table, I took the lead with a short explanation of what Type 1 Diabetes and Celiac Disease is, and asked if anyone had any questions.

Our school district instituted a new computerized system for managing 504 meetings, and the Vice Principle had meticulously gone through the entire document to make sure each detail was in place.  We passed out copies, and started at the top.

Questions were thoughtful and relevant.  The team covered every detail, and we went in circles until each base was covered, and everyone felt comfortable.  Here’s a few highlights:

  • Instead of stashing supplies in various places around the school, she carries a little backpack that contains everything she needs (including Glucagon).  By doing this, she will always have access to what she needs, and will also be prepared for unexpected situations, such as  lockdowns, fire drills, or other emergencies.  The teacher keeps a little hook next to the door, and she puts her bag there, making sure to grab it whenever she leaves the classroom.  It goes back and forth between home and school everyday.
  • If she alerts someone that she is feeling low, the school nurse or health aid should be called to come to her.  At no time will she be left alone.  Only an adult may accompany her during a blood sugar problem, but she can go to the Health Office for routine diabetes care with another student, as long as there aren’t any signs of a blood sugar issue.
  • Sugar gets pre-bolused, so it is understood by everyone (INCLUDING HER!) that she must finish all of her snacks and meals.
  •  She will test her blood sugar and eat a 20 carb snack before P.E (which, conveniently, happens to fall 2 hours after lunch twice a week — and ends 10 minutes before I will arrive to pick her up).  
To be honest, this is the FIFTH year that we’ve gone through this.

Yes.

I said FIFTH.

Once for preschool, twice for kindergarten (I opted to hold her back a year, because she has a summer birthday), and last year.

That brings us to right now.

Second grade.

Sooooooo, I should be an old pro, right?

Pffffffffft….HA HA HA HA HA HA HA HA HA!!!!  YEAH RIGHT!

I have to admit that it’s easier the 5th time around.  But I’m still nervous.  I’m still afraid I’ll forget to send in something important.  I’m still anxious about how a daily routine will be established with her new schedule.  I’m still freaked out about troubleshooting the inevitable pump setting changes.  I’m still scared out of my mind that she’ll have the worst low EVer, and I won’t be there to catch it.

I dunno if all that stuff ever goes away.

But I do know that we’re as ready as we’re ever going to be.

So let’s do this.

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