California D-Dad Weston Nordgren is fighting the good fight for families grappling with type 1 diabetes everywhere.
It all started almost a decade ago, when his then-baby son Derek was diagnosed, and he and his wife eventually found the budding CGM in the Cloud community on Facebook. They've helped build it into the powerhouse group that it is today (even recognized by the FB mothership).
Weston, who goes by Wes Ton on social media, is a prominent advocate traveling the country and world talking about the #WeAreNotWaiting community, serving as VP of the Nightscout Foundation and community liaison for CGM in the Cloud -- including manning a booth at the recent national diabetes educators' conference in Indianapolis, where things got pretty emotional at times.
We recently asked Wes to kindly share his story, and the parallel story of how these new technologies are creating a revolution in diabetes care.
Today, we're excited to share Part 1 of Wes' account, about his family and how T1D came into their lives.
T1D Strikes Home, by Weston Nordgren
Our diabetes story began in March 2008, as an unexpected jolt in the second chapter of our lives. My wife and I had met in the early 70s in Arizona and our paths crossed and diverged in the years after that, until those paths finally converged in the mid-80s. We both embarked on careers with FedEx – her in customer service and sales, and I in customer service and operations support – and we planned our first two children four years apart so we could raise them as singletons without the chaos of having multiple kids close together.
By the early 90s, we’d made a move to California and lived what I describe as “the statistical demographic of suburbia.” As our children grew and my son left for college and daughter got ready for college, I started to plan for the upcoming 'empty' years.
My wife had other plans, as she’d began contemplating the meaning of life and what we could do to make an impact in the lives of the most vulnerable among us. That led to us to the decision of adopting children with special needs, as there are 6,500 children in our California county alone, waiting for placement through the foster-adoption program.
That is when Derek came into our lives, and before long we entered the world of type 1 diabetes on a Thursday in March 2008.
On that particular day in March, my wife realized that in spite of our son’s lengthy list of serious medical conditions (that he's had from birth), something else was wrong because he had become extremely thirsty and had stopped eating -- something that activated her ‘mother radar.' Without wasting any time, she immediately made an appointment to take him to the doctor the very next day. The doctor checked him from top to bottom and declared him healthy and then berated my wife for being overcautious with his health issues and indicated that the reason he would not eat was that she was feeding him too many bottles (when he was thirsty). The doctor then proceeded to give a series of vaccinations to our “officially pronounced healthy” 12-month-old son. Things did not improve and my wife discussed her concerns with me after work that day. I was unable to see anything of concern (mom radar 1, doctor radar 0, dad radar 0).
Two days later, as I watched our son crawl across the living room floor, I noticed him crawl right by the only thing on the floor, a lone cheerio. Our little guy had never crawled past anything on the floor without putting it into his mouth since he began to crawl. I turned to my wife and said “something’s wrong.” That night as I went to bed, I said goodnight to my wife as she was working away on her laptop at the kitchen table (she had long abandoned her home office a year earlier when our son came into our lives). She told me she would come to bed once she had finished reading a list of items on WebMD (as she tried to figure out what only she had noticed days earlier).
The next morning I awoke to my wife handing me our baby while I was in bed and she jumped into the shower. I asked her what she had found out the night prior and she said, “You don’t want to know, I think he has type 1 diabetes” (mom radar 2, dad radar 0). I sat our son down on the bed to play with him and as he crawled towards me, his eyes momentarily went up and back into his head and he collapsed a short distance from where I was prepared to scoop him up and rub noses with him. Extremely alarmed, I picked him up as he began to vomit and we rushed him to the emergency room.
In the ER, they found his blood glucose to be nearly 13 times the normal level and that our sweet little guy’s 17-pound body was in full-blown DKA. As the medical ‘air-evac’ helicopter took off from the roof of the hospital with our baby on board, we crossed the parking lot while I filmed the helicopter flying overhead with my smartphone. As I did that, my wife broke down and wept (mom radar 3, dad radar 0).
That's how type 1 diabetes first struck our family.
Fast forward to mid-May 2014 and our family had completely changed.
In the years prior, our eldest son and daughter had gone off to college and we were now proud grandparents of two beautiful grandchildren. We had retired from our careers with FedEx, and we now ran a fertilizer business focusing on vineyards, orchards and groves selling almonds, pistachios, table wine and grapes throughout the San Joaquin Valley in Central California. Aside from being six years further down the battle-scarred road called T1D, we also now had twin 4-year olds -- as we'd adopted three wonderful children, all with special needs, between 2009 and 2011.
Our ‘new normal’ had seriously become a ‘NEW normal.’
For our son, six of the last nine years have been truly fraught with great difficulties. Three summer vacations ended in our little guy being air-evac’ed to the nearest children’s hospital; one vacation lasted a full 7 minutes upon arrival to our destination. We had virtually stopped traveling all together, and any trips that we did make had destinations with highly rated children’s hospitals nearby. Destinations out of cellular range had become a thing of the past and renting a satellite phone was the only way we were going to be able to attend a large family reunion at a remote lake. Derek even had special daycare where an RN was on staff at all times for him, but the sheer instability of his blood glucose would panic the nurse and her staff time and time again.
Our son was labeled a ‘brittle diabetic’ by two separate endocrinologists and one even told us that he may never have an A1c lower than 9%.
That 'CGM in the Cloud" Group on Facebook
One day before I left for work, my wife started talking to me about a new way to see CGM data and I responded with the appropriate head-nodding while I tried to figure out what I would need that day in the vineyard. My wife then stood in front of me, blocking my way as I was entering the hall and said, “This is really amazing and would help a lot with Derek’s T1 care,” so I started asking multiple technical questions to assess the importance of such a technology.
I remember thinking, “How much quicker do we need this information?”
After all, we had a CGM receiver with us at all times, so we had current blood glucose numbers right at our fingertips without much hassle! My wife then proceeded to tell me that although she could not answer my questions, my new job was to figure out the technology and implement it... looking back, it's funny now to think that she'd unceremoniously dumped me into the "CGM in the Cloud" group on Facebook.
By this time, six years after diagnosis, the mom radar score was probably 1,256 compared to my dad radar score of 5.
A few days later on a Saturday, I finally checked out that Facebook group.
Within minutes of looking at the group feed and seeing the tearful testimonials, I rushed out to where my wife was knee-deep in our wonderfully rowdy second-generation of kids and exclaimed, “We have to build this TODAY!”
We took the plunge, worried it could cost us over $1,000 -- even though it only ended up costing us $135 to set everything up.
That first evening when we glanced at CGM data on our laptops and smartphones, I’m not sure if I did a "touchdown end zone dance" at that moment (I think I did), but it was definitely the first diabetes-related victory I'd felt since diagnosis.
A few weeks later, the ‘CGM in the Cloud’ Facebook group had exploded with 1,700 families and individuals and almost 100 people had set up their very own Nightscout system.
As a family, we took very seriously the request to ‘Pay it Forward’ from the group founder Jason Adams. Most evenings after the children were in bed, my wife and I would sit next to each other on the couch with our laptops, she working as an admin on ‘Diapers & Diabetes’ and I answering Nightscout setup questions and encouraging my new worldwide family of sleep-deprived individuals that yes, they could too get their ‘CGM into the Cloud.’
The weeks progressed, and CGM in the Cloud grew at an even more frenzied pace.
That's then the decision had to be made to transition everyone to a formal Nightscout online forum where the volunteer tech support group (of which I was now a member) could more efficiently address the needs of a burgeoning community. That was the first time we realized that we would not be able to move the community off the FB platform as only 35 members (just 1% of the total) attempted to utilize the new support platform.
At that time, the FB platform left a LOT to be desired, and we frequently heard comments that our community grew in spite of those limitations. Really, our group was nothing more than a giant container where thousands of people were all poured together to help and to receive help in deploying the new Nightscout technology. The proverbial genie had been let out of the bottle and there was no turning back the whirlwind of growth that enveloped our months-old group on a platform that was not equipped to handle it. Within four months, we had 5,500 members and the following month we'd grown to 7,000... and on and on and on.
The growth never stopped. Today, we have more than 43,000 members worldwide along with 33 country subgroups and six specialized technology solution groups branched off.
For us, it's all about the mantra: ‘For better or worse, in sickness and health, until a cure do us part.’
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Stay tuned for the Part 2 of this post, where Wes shares how the Nightscout Foundation and CGM in the Cloud changes lives, and even brought tears at the recent AADE conference...