I Wish It Were Three Years From Now...

Time flies.  My kids are growing up too fast.  I never wish time away...

Well, almost never.  Ally had a rough diabetes day yesterday.  Her CGM was reading above 400 and finger stick showed a blood sugar of near 400.  She had been swimming (on and off of her pump for a few hours), and her pump site came loose.  Tears, tears and more tears.  She was hungry and couldn't eat anything until we could get her blood sugar to come down a bit.  She had just a few minutes to get herself ready for cheerleading practice, where she would be helping to coach the younger peewee cheerleaders.  She couldn't find her shoes.  She couldn't find her bag.  She didn't like the way I had put the bow in her hair.  Tears, tears and more tears.  Finally in the car on our way to cheer (a few minutes late now) and she said, "I don't think I can even remember the cheers right now!"  Tears!  I am feeling so bad for her because I know that a blood sugar of almost 400 is making her feel really terrible.  These are such helpless moments for me because all I can do is give more insulin and wait it out with her, but I can't make her feel better.  We are almost to the park and she says (in a tween sort of huff), "I JUST WISH IT WERE 3 YEARS FROM NOW!"  I looked at her kind of puzzled.  She continued, "Because then I would have a bionic pancreas and I wouldn't be 400!"  And I suddenly wished the time away too.  I wish we could fast forward to a time when she would not have to worry about her diabetes.

Our hope for a better quality of life for Ally has been re-energized by the Bionic Pancreas.  Seeing first hand that the Bionic Pancreas could give her better blood glucose control with very little effort has made us wish the next few years away.  We simply cannot wait for the bionic pancreas to become a reality for Ally and all those living with type 1 diabetes.

I know that some people really believe in only supporting research towards a biological cure for type 1 diabetes.  Our family has always, and will continue to, support research towards a cure.  But, we believe whole-heartedly that we must support this type of technology that will ensure a better life for those who are living with type 1 diabetes.  Until there is a cure, we are still managing the ups and downs of diabetes 24/7.  Until there is a cure, Ally is at risk every single day of having a severe hypoglycemic event.  Until there is a cure, every day is adding to the risk of her developing long term health complications.

The Bionic Pancreas is not a biological cure for Ally's diabetes. However, we believe that it will be the best tool for managing her diabetes...until there is a cure.

We know that in order for this technology to become a reality, we must support the efforts of the researchers in any way that we can.  We have decided to take The Bionic Challenge!  This is what the Bionic Challenge is:

We are asking for the assistance of the T1D community to raise the funds needed to build the integrated bihormonal bionic pancreas platform that will be used in our final pivotal study of 2016.

The Bionic Challenge (which officially launched on July 3, 2014 at the Children with Diabetes Friends for Life Conference in Orlando) asks each participant to raise $5,000 by September 1, 2014. If each participant can turn to their friends and relatives and obtain 50 $100 donations, we can continue our development effort and keep on schedule for our final pivotal study in 2016.

We have just two weeks left to meet this goal!  If you would like to make a donation to help build the final bionic pancreas, please click the link here to find out more about how you can donate.
Credit card donations can be made directly to Boston University here: https://www.bu.edu/alumni-forms/forms/eng/damiano/.  Please reference Team Ally - Ohio if you make an online donation.  If you'd like to make a donation in another form, please contact me at BoxOfChocolates@hotmail.com.

Thank you so much for your support!  Go Bionic!

This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

After The Bionic Pancreas

I have been anxious to tell you all about Ally's experience wearing the Bionic Pancreas. But I have also been in catch up mode after being away from home, my hubby and my other girls for two weeks. I've caught up on bills, shopped for school supplies, weeded my garden. I'm still catching up on snuggles though. I mentioned to Ally that I needed to get an update written for the blog. She offered to do it for me! So here you go an update on Ally's "bionic experience" from Ally herself...


If you're a kid like me, a type 1 diabetic, how many times in the past two weeks have you been asked, “Do you feel high? Do you feel low? What does your CGM say?”  I’m counting. It’s only been one day and I'm already at 12.

That was one of the great things about camp. I was monitored 24/7, but I wasn’t asked any of those questions. There wasn't any reason to. I was wearing the Bionic Pancreas.

The Bionic Pancreas, aka the Bio Panky, is amazing! It kept my numbers in range the whole five days that I wore it!  (And it required a lot less work - and questions.) The five days that I didn’t wear the Bio Panky, my CGM graph looked like a roller coaster. The reason I think it worked so well is that I wasn’t just given insulin, the Bio Panky gave me glucagon too. A Dexcom CGM was paired with an iPhone that read the CGM every five minutes and depending on my blood sugar, it would give me insulin, or glucagon.

Another cool feature of the Bio Panky is that I didn't have to count carbs for everything that I ate. I just had to tell it if I was eating a small, normal or large meal for breakfast, lunch and dinner. At snack time, I didn't worry about entering anything at all.

If you saw my CGM graph, you might even think that it was a non-diabetic's graph. But it really was mine...and I was even at camp getting a lot of exercise. Usually when I have that much exercise, my blood sugar goes low low low. I never went low while I was on the Bio Panky, not even at night.

Some things do need to be fixed before the Bionic Pancreas will be on the market. Glucagon is not stable for more than 24 hours at a time right now, so we had to change our glucagon pump site every day. Also, it needs to be combined all in one device. The research team told me that these things will be taken care of by the time its out on the market.

I had so much fun at Clara Barton Camp. I made new friends. We laughed and sang lots of songs together. We played fun games, like gaga and cities and capture the flag. Dance night and the talent show were fun. Swimming in the pond was pretty cool. I learned a lot at camp too. I learned how to make a duct tape pump pouch :) And not only did I learn to try a site in my stomach, but I learned to do it all by myself!

This is me inserting a stomach site
which I learned at Clara Barton Camp.

But the best part of camp was learning more about the Bionic Pancreas. I can't wait to have my own Bionic Pancreas someday!

This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  


READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE

I WISH IT WERE THREE YEARS FROM NOW

Today I Rejoice!

Today I rejoice because it is time to pick up my camper!!!  Two weeks ago, I wasn't rejoicing, I was crying.  Shortly after Ally began her bionic journey, I had to say goodbye to my sweet girl.  I tried so hard to leave camp before she saw me cry.  I was not exactly succesful.


I tried to tell myself not to cry.  I was about to have a "momcation" with my friend Wendy for the next two weeks.  Two weeks of not thinking about basal rates and changes that need to be made.  Two weeks of not counting carbs.  Two weeks of sleeping through the night, without worrying that her blood sugar would drop too low.  Two weeks without wondering how her food and her exercise will affect the next insulin dosing decision.  I was looking forward to this mom break.  But I still cried.

I was feeling an overload of emotion that day.  I would not see my girl for two weeks.  She had never been away from me for that long before.  Like never!  But that is not what made me cry.

I was overwhelmed with emotion because she had just started wearing the bionic pancreas.  I was going to be putting my trust in others, in a machine, to keep her alive. That has been my job every day since her diagnosis.  The thought of letting that go completely for two weeks...overwhelming!  But that is still not what made me cry.

I cried because for the first time in five and a half years, Ally got to experience a little less weight on her shoulders.  She would get to experience the "unburdening" of her diabetes management.  The bionic pancreas would be making the decisions about dosing her insulin and glucagon.  Every 5 minutes.  That's about 12 times an hour.  288 decisions a day.  And she didn't even have to think about it!

And that is what made me cry.

So today, I will go pick up my girl.  I will rejoice!  (And maybe I will cry a little too!)


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  


READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW