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!

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    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

 

Grandma Gets It: Diabetes and Disney

*Our family had the opportunity to attend this year’s Children With Diabetes ‘Friends for Life’ Conference held each summer in Orlando.  This was our second year attending the conference and we decided to invite one of Isabella’s grandmothers, Darlene, to join us. While we will be sharing our own thoughts on the conference (look for 2 additional posts from us with our mom & dad reflections), we also asked “Grandma Dar Dar” to write a guest blog about her experience.  We hope it will encourage other grandparents, aunts, uncles, and extended family to consider learning more about caring for a child with type 1 diabetes…the more people a family has on their diabetes care team, the better!

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A great night at the Friends for Life banquet!

I spent an incredible week with my son Greg, daughter-in-law Kristina and triplet grandchildren, Isabella, Mia and Max in Orlando for the Children with Diabetes Friends for Life conference. When they invited me to go with them, I had no idea what all was involved.

The conference didn’t start until Wednesday so we spent the first 2 1/2 days at the Disney parks and it was such fun. I think we stood in line to see every Disney princess possible…as well as Mickey and Minnie. The kids were so excited.

We went on rides, too, and while waiting in line for one ride, Isabella pointed to a little girl in front of us and said that she had a green bracelet on. Her dad asked her what it meant and she said that the girl had diabetes. We hadn’t signed in for the conference yet but, when you sign in, you get a green paper bracelet if you have T1D and an orange bracelet for those who do not have T1D. Isa remembered this from the previous year and it amazed me that she remembered this. Then Isa showed the little girl her OmniPod insulin pod.

When you go somewhere with children you have to take extra clothes, snacks, diapers or Pull-Ups, if needed. When your child has T1D you also need to bring glucose tablets, juice boxes, insulin, a glucometer and glucagon (an injection in case the blood sugar drops too low). Greg and Kristina checked Isabella’s glucose level frequently throughout the day. While we were waiting for the shuttle to take us back to the hotel, the kids were running around and all of a sudden, Isa was just standing there and said she was tired. Greg immediately checked her glucose level and it was in the low 50s so they gave her a juice box to bring it back up. This made me realize that she needs to be checked frequently…and it is a big responsibility.

At the conference I attended a number of sessions for grandparents and learned a lot. Even though I am a retired nurse, I didn’t know a lot about T1D and how to handle the highs and lows since so much has changed with the use of pumps and continuous glucose monitors(CGM). You really need to be on top of things and recognize the symptoms of low blood sugar.

I have also been very concerned about the complications of diabetes and worried for my beautiful granddaughter but ,after attending one session, I was relieved to learn that long-term complications usually only occur if the blood sugar has been high(250-300 or more) for an extended period of time. In fact, one presenter has had diabetes for 55 years and is doing fine.

An interesting statistic is that 15,000 children per year are diagnosed with T1D. A doctor at the Diabetes Research Institute (DRI) in Miami, Dr. Chris Fraker, has found a correlation between certain viruses and T1D and hopes that one day if they can find a way to stop the viruses from destroying the islet cells in the pancreas which produce insulin, then diabetes will be cured.

Many who attended the conference have been coming for years and have developed friendships. It was so great to see the older kids interact with Isa and when Isa saw someone with a green bracelet, she wanted to meet them and show them her insulin pump or the Dexcom CGM she just stared using. 

We heard from athletes with T 1D who have done amazing things like competed in NASCAR and Indy car races (Ryan Reed and Charlie Kimball), doing triathlons (Jay Hewitt), and one young man who is running four marathons per week for nine months across Canada (Sebastian Sasseville) and they are an inspiration to the young people with T1D and show them that they can do anything they set their sights on.

It was a wonderful week and one that I will always remember. 

-Darlene