Helping Children with Diabetes Gain Independence Part 2

If you read part one last week you can skip this little description and move on to the post...

So a while back the people who make the OmniPod asked me if I would like to contribute to their new blog called Suite D. I said yes, but I had one caveat that I honestly never thought that they would agree to - but they did!

See, Insulet wanted me to write a series of posts about how we use text messaging to manage Arden's type I and I wanted to tell that story here on Arden's Day. My caveat? I get to repost my writing here after it has run on their blog. This is not something that many websites would agree to because they understandably want their content to be fresh and exclusive -- I want to give major kudos to Insulet for agreeing. You may be wondering what I said to get them to allow me to do this... Well, it was simple really. I couldn't write for them and give them my full effort if I felt like my writing was taking something from Arden's Day and taking something from you. I was honored to be asked and I wanted to take the freelance work, but not at the expense of my readers here. So we struck a simple, and I think, very reasonable deal. I get to repost after the piece has been live on their site for at least thirty days. A BIG "way to go!" from me to Insulet for being so cool and blogger friendly! Here's part 2 of my 6 part series on gaining independence through technology, part 1 is here.

I sat down in my daughter’s 504 meeting after she finished second grade with a plan. Each year we make small adjustments – preparations for new aspects of the school day that come with advancing to the next grade level. These meetings are very productive, somewhat brief and usually not very eventful.

The nurse began to talk about how we could give Arden a little more responsibility with her diabetes management in third grade. This was something we did each year during this meeting and sometimes, if warranted, during the school year. We strive to shift Arden’s diabetes care onto her plate bit by bit, as she is able to accept new responsibilities. The idea is to slowly get her acclimated until the day comes when she is completely self-managing her diabetes without even realizing anything has changed.

I like that process very much and it was working extremely well. So well, in fact, that before the nurse could finish her thought I stopped her and said, “I don’t want Arden to come to your office next year. It takes up too much of her day and I think the lost time is damaging her learning process. She is missing vital parts of instruction and I want to change that.” They of course agreed, but were initially confused about how I intended to change the situation.I continued, “Arden is going to manage her diabetes herself from now on and I am going to help her. She will handle everything right from her desk and I will oversee each decision with text messages (and phone calls if and when necessary).” 

Cue the blank stares…

I filled the silence before anyone could protest too much. Our previous governor signed a bill giving students with diabetes the ability to test their blood glucose anywhere in the school. So testing in the classroom wasn’t an issue. And Arden’s 504 plan already allows her to carry a cell phone, so all I needed to do was explain that sending text messages wasn’t going to be a distraction to the other students. They were intrigued.

I began to explain how much better I imagined Arden’s A1C would be if we could make small adjustments throughout the day instead of only addressing her blood glucose every few hours. Then I turned to her teacher and asked how much cumulative time she thought Arden missed each day while she was at the nurse. She replied, “Forty-five minutes maybe.” I didn’t hesitate to show off my impressive math skills and said, “That’s almost four hours a week… fifteen hours a month.”

They couldn’t disagree with my argument. Everyone knew that a student can’t thrive when they miss that much of their school day. There were a lot of faces in the room and I could see on each one of them that I had made my point. I reassured them that my idea would work and that we should try.

Arden and I practiced all summer and came up with our own little diabetes management shorthand. I found a few emoticons that were representative of the arrows on Arden’s continuous glucose monitor and we were off.

Putting Arden’s New Diabetes Management Plan into Action

Today, almost one complete year later, even I can’t believe how well my plan has worked. One week towards the end of the school year Arden’s blood glucose had been low all week. I didn’t know why. I had been using temp basal rates and adjusting boluses, and she just kept running low. I’m talking about blood glucose levels in the 50, 60 and 70 range – situations that required immediate action.

But guess how many times Arden had to go to the nurse’s office that week? Zero. Guess how many times Arden had to go to the nurse’s office all year? Yes, you guessed it… zero! Arden did not need to leave her classroom once to address a diabetes-related issue. We treat lows, bolus for highs and count carbs all with text messages like in the screen shot above.

This simple technology that most everyone possesses is one of the most valuable and productive diabetes technologies that we employ. The independence that it gives Arden and me is unmatched. The peace of mind that being able to text her brings me is soothing. The effect that this process has had on her diabetes management is staggering! Just wait until I tell you about Arden’s A1C in my next post.

FDA Approves Medtronic Low Glucose Suspend

"MINNEAPOLIS – September 27, 2013 –Medtronic, Inc. (NYSE:MDT) today announced the U.S. Food and Drug Administration (FDA) approval of the MiniMed® 530G with Enlite®, a breakthrough, first-generation artificial pancreas system with Threshold Suspend..."

Read the rest of this exciting press release at the link.

In Need of a Vacuum Cleaner Recommendation

My life really is strange sometimes. Yesterday I was in a Manhattan studio for a Lilly Diabetes satellite media tour where I was interviewed, along with Amy Hess-Fischl, twenty-nine times by different television and radio stations from all around the country. It was a whirlwind day that began at four in the morning. We gave one interview right after the other for almost seven hours, it was a really fun day of talking about sleepovers, diabetes management ideas and the Lilly/Disney collaboration at Spoonful.com/type1. 

The bright lights of the big city didn't last too long for this stay-at-home dad. When I arrived home yesterday my son was sick, the laundry was piling up and Arden had homework to do. I got back into my routine pretty quickly and this morning things were back to normal here at home.

I found the kitchen counter this morning after the kids left and gave it a polish, then I thought I'd do a bit of vacuuming before I had breakfast but something terrible happened. My closest comrade in this life, my partner, the yin to my yang - she passed away suddenly. I don't know what I'll do without my little buddy, but I guess I'm just going to have to press on. Sure she sucked at her job and I never liked the yellow jacket that she wore, but Eureka... she tried. 

Anyway, here's some pictures from yesterday's media tour and audio from one of the radio interviews. After you take a look, if you have a good one, can you please leave a vacuum cleaner recommendation? I need a sturdy upright that does wood and carpet and I like a nice wand for the corners and such. Not too expensive but I'll spend some money for a vacuum that'll last. Thank you!

Audio - Radio Interview with WIBC Indianapolis 

Helping Children with Diabetes Gain Independence Part 1

So a while back the people who make the OmniPod asked me if I would like to contribute to their new blog called Suite D. I said yes, but I had one caveat that I honestly never thought that they would agree to - but they did!

See, Insulet wanted me to write a series of posts about how we use text messaging to manage Arden's type I and I wanted to tell that story here on Arden's Day. My caveat? I get to repost my writing here after it has run on their blog. This is not something that many websites would agree to because they understandably want their content to be fresh and exclusive -- I want to give major kudos to Insulet for agreeing. You may be wondering what I said to get them to allow me to do this... Well, it was simple really. I couldn't write for them and give them my full effort if I felt like my writing was taking something from Arden's Day and taking something from you. I was honored to be asked and I wanted to take the freelance work, but not at the expense of my readers here. So we struck a simple, and I think, very reasonable deal. I get to repost after the piece has been live on their site for at least thirty days. A BIG "way to go!" from me to Insulet for being so cool and blogger friendly! Here's part 1 of my 6 part series on gaining independence through technology.

Helping Children with Diabetes Gain Independence Part 1

I recall being handed syringes in the hospital and thinking that they seemed so very lightweight. I guess that I had never held one before that day and didn’t know what to expect. They felt flimsy in my hand and I struggled to understand just how these bits of plastic and metal were going to keep my daughter healthy.

That was my perspective only a few days removed from our two-year-old daughter’s type 1 diabetes diagnosis in August of 2006. Today, I realize that if Arden had been diagnosed fifty years earlier those little needles would have likely looked and felt like something from a science fiction movie.

Gaining Independence through an Insulin Pump

The technologies that help to improve the lives of people with type 1 diabetes are nothing short of amazing – and the ways that we use that technology are ever expanding and evolving. I love the idea of utilizing what we have available today to the fullest, but I always keep an eye on the future and wonder where it will take us.

The first time I saw the table full of insulin pump samples at our endocrinologist’s office, the OmniPod insulin pump jumped right out at me. I was first struck of course by the tubeless nature of the device, but quickly, my mind raced with the possibilities of how the manufacturer could continue to adapt and blend advancements, because of its self-contained design. I told my wife, “I like that one. When they improve it we won’t have to wait to benefit.” That’s what I liked most about the OmniPod – it felt like the future and I couldn’t see a limit to the possibilities of where it may go.

Here we are many, many years later and I find myself about to talk to you about technology and how it has improved my daughter’s life – really my family’s life – and given her more independence. But now I’m going to talk about another piece of technology that we all have in our pockets, something that when used correctly will take you to the future and free you from restraint. Let me explain…

Giving Our Children More Freedom with Diabetes

Our children go. They go to school, to their friend’s house, to a movie – they are constantly going. Parents of children with type 1 diabetes are conditioned to fear the feeling of their child’s natural desire to just go. We want our children to have that leisurely feeling of course – that carefree, run-out-the-back-door feeling that we enjoyed as children. I don’t want to think about what could go wrong on a school bus ride. I hate telling my daughter she can’t visit a friend’s house because their parents don’t have a working understanding of diabetes and I am willing to bet that you feel the same.

Freedom and independence for our children with diabetes – but how?

How Technology Can Provide More Independence

Arden was missing class each time she visited the nurse’s office at her school. Before recess, before gym, before lunch, after exercise and every other time diabetes came to call, Arden missed class time. It was only five minutes here and three minutes there, but by the end of the day those minutes added up. After a week, they were hours and by the end of the year, they were days. Days of learning, days of socialization and days of her life – gone.

If only I could just be there, stand in the corner so I could invisibly wander to her desk and oversee her insulin dosing decisions. I just needed to be able to whisper in her ear that she didn’t need all fifteen carbs to correct that low blood glucose. I only needed to be there for a second, just like when she is home with me. Then it hit me… I can be.

Arden was in her bedroom one Saturday afternoon when I needed to know what her blood glucose (BG) was. Instead of walking upstairs I sent her a text message that said, “Test your BG please.” A few moments later I received a return message: “134.” I was with her, but I wasn’t. We were managing her blood glucose with only a momentary pause to her activity; this was the minimal interruption that I dreamed of. If only she could have her phone with her at school…

I’ll be back soon to tell you how I explained to the school what I was planning for her diabetes management, their surprising reply and all the goodness that’s come since.

The next two parts can be found on Insulet's blog, Suite D here. I've just completed parts 4 and 5, they will be going live on Suite D sometime soon. I hope that you have a great weekend... We are going to watch our kids play softball and baseball this weekend until our butts are numb from the bleachers. Best, Scott

Oh Lilly: Coco, Sleepovers and Me

Remember back in August when I gave away ten copies of 'Coco's First Sleepover' and I told you that sometime way in the future, I'd be participating in a Lilly Diabetes press junket to talk about sleepovers and diabetes? Well, time sure does fly because I'll be leaving Monday for The Big Apple, Metropolis, site of the 1964 World's Fair, the city that never sleeps... if I can make it there... Okay, you get it, I'm going to New York City.

On Tuesday, September 24th I'll be participating in a satellite media tour for Lilly Diabetes. I arrive early in the morning armed with only my knowledge of being the parent of a child with type I diabetes and my urbane wit. Throughout the day I, along with Amy Hess Fischl, M.S., R.D., L.D.N., BC-ADM, C.D.E., will answer questions as they are asked by the following media outlets. List subject to change.

TV:

WNEM/Flint-Saginaw, MI

WBTV/Charlotte, NC

WTVG/Toledo, OH

NEWS AROUND AMERICA

CONN TV

LOUISIANA HOMETOWN

KOLC/Reno, NV

KHQA/Quincy-Hannibal, MA

WSAW/Wausau-Rhinelander, WI

KAZT/Phoenix, AZ

WDTV/Clarksburg-Weston, WV

WGGE/Springfield-Holyoke, MA

Radio:

WDIS/Boston, MA

Main Street Radio

WCBC-AM/FM/Washington, DC

WFMY/Greensboro-High Point, NC

KLTF-AM/Minneapolis, MN

KXFN-AM/St. Louis, MO

WIBC-FM/Indianapolis, IN 

KOGA-AM/Denver, CO

WXGM-FM/Norfolk-Portsmouth, NH

WARM-AM/Wilkes Barre-Scranton, PA

WYYZ-AM/Atlanta, GA

WCAP-AM/Boston, MA

 

I'm excited to be helping Lilly and Disney to get the word out about their diabetes themed children's books and grateful that they thought of me when the opportunity arose. All that's left is to find out if I fit into the jacket that I wore on Katie Couric.

Lilly will provide transportation to and from New York (car ride), a stipend for expenses and one nights lodging. The Coco books are free through your Endocrinologist, just ask your doc for a copy (they can get them through their Lilly sales rep).