Three Words: Reflections from Friends for Life

fflI had just finished participating in DSMA (Diabetes Social Media Advocacy), the live Twitter chat that happens every Wednesday night at 9pm EST (which I’ve suddenly become addicted to). It was around 10:30pm and I finally sat down to write my blog post, reflecting on the Children with Diabetes “Friends for Life Conference” that we attended in early July. I typed my initial thought for the headline and an opening sentence…

That’s when I heard the crying and screams.

It was Isabella. She had been in bed and presumably asleep for an hour or two but was now awake and crying. I went upstairs to check on her…but she was already coming down the hallway on her way downstairs to see us. I asked what was wrong and she continued to cry; unfortunately, this scenario is not entirely unusual when you have nearly 4-year-old triplets who never want to go to sleep at night. Admittedly frustrated, I scooped her up and immediately knew something was wrong. Her little body felt like it was in a cold sweat. She continued to cry and wiggle around as she wrapped her arms tightly around me.

I suspected that her blood glucose was still very high (her levels had been high since we changed her insulin pod several hours earlier). I pulled out her meter and confirmed that she was in fact high (471!).  In and of itself this is not terribly concerning as her level can vary widely (after all, she’s a growing toddler!) and the solution is fairly straightforward – give her insulin to bring her level back down. The problem was that her level had been high for several hours and it was now clear that the insulin we had already given her didn’t seem to be having the desired effect of reducing her blood sugar level. Her pod likely wasn’t functioning or had come loose, which we hadn’t realized earlier.

We checked for ketones; if present in the bloodstream, ketones can lead to DKA, or ketoacidosis (resulting in a coma or worse). For the first time since her diagnosis, Isa had “medium to large” ketones, which is approaching very dangerous levels. I called the hospital emergency line to reach the on-call endocrinologist, and had prepared myself for what I thought would be our first diabetes-related visit to the ER since her diagnosis nearly two years ago. The doctor suspected that Isabella’s pump had not been delivering insulin for several hours and suggested we give her an insulin injection. Isa was scared…I guess she had already forgotten, or at least didn’t want to remember, the nearly fifteen-hundred insulin shots she received during her second year of her life. We replaced her pod and gave her an injection of insulin for the first time since she started on her OmniPod nearly 12 months earlier. Thankfully, within a couple of hours, her level came back down into range. With that, our diabetes crisis was averted.

I never did finish my “FFL reflections” blog post that night, so I wanted to finally share some thoughts. As I reflect on the conference, three words come to mind: inspired, hopeful and proud. Here are a few reasons why…

Inspired

  • We met and had the opportunity to hear from several athletes living with T1D that have accomplished amazing things: Jay Hewitt, Ryan Reed, Charlie Kimball, Sebastien Sasseville. These individuals truly inspire us and are great role models for our daughter; they remind us that anything is possible!
  • We met many great families, some of which we had already “met” in the DOC; I’m inspired by how they manage through this challenge day-after-day, month-after-month, year-after-year…while keeping a positive attitude, continuing to raise awareness and finding ways to overcome “diabetes burnout.”

    ffl mila

    Finally Meeting The Ferrer Family of “Jaime, Mi Dulce Guerrero”. Somos Amigos Para Toda La Vida!

Hopeful

  • We had the opportunity to hear about the Bionic Pancreas, a medical device currently being developed and tested by Dr. Ed Damiano and his team at Boston University. Dr. Damiano began developing this device as a commitment to his son, who was diagnosed with T1D at just 11 months old (he’s now 15). The technology is amazing and would enable Isabella and many others to live without having to worry or even think about diabetes every single day.
  • Isa started a trial of a Dexcom G4 CGM (continuous glucose monitor) during the conference. This was made possible by Jeff Hitchcock, Founder & President of Children With Diabetes, who asked if we were interested in participating in the trial. Jeff helped arrange everything with theDexcom team (who, by the way, are an amazing group of people!), and we were off. We’re hopeful her newDexcom CGM will help provide us with information to make more informed decisions about managing her diabetes…and will provide us with some sleep-FILLED nights!

    ffl jeff

    One of our Friends for Life – Jeff Hitchcock, Founder & President of Children With Diabetes

Proud

  • I was so proud to see Isabella seek out others with green bracelets (all those with T1D were wearing green bracelets) to introduce herself and say “I have diabetes, too!” She was so proud to show off her OmniPod and her new Dexcom…and that made me smile as I want her to be proud of who she is, embrace the challenges in her life and turn them into opportunities.
  • Isabella and her triplet siblings, Mia and Max, made so many new friends during the conference and I know they will truly make “Friends for Life” as a result of attendingFFL each year. That makes me one proud papa!

    ffl lenny

    The Trio with Lenny the Lion!

Overall, the conference was once again amazing. It is truly a great feeling to be with 800 other families that understand exactly what type one diabetes is all about and how it affects our family, both emotionally and physically (thank you to the family that gave me juice to treat Isa’s low by the pool!). The conference sessions are great and informative, but interacting with others affected by T1D and hearing about the amazing things they’ve accomplished living with diabetes is what makes this conference so special. Can’t wait for next year’s conference!

-Greg