Bringing DIY To Our Daughter’s T1D (By Closing The Loop)

It’s a little bit after six in the morning, and I find myself, as I do most mornings, at work at Remington Park. The sun is just peeking over the horizon and the racetrack is beginning to come alive. Horses snort and buck on the mechanical walkers, grooms move to and fro saddling and bridling the ones headed to the track for training, farriers and jockey agents and veterinarians begin their morning rounds, while the trainers and assistants organize their days. I sit in my truck sipping coffee, having completed my early morning chores and preparing myself for another busy day. A quick glance at my Pebble watch brings a smile to my face, as I see the impossibly straight line and the reading of 113 mg/dL, which tells me that my daughter is sleeping peacefully in her bed as she has all night, and is safe.

For the past five years, most of my days have started the same. The alarm goes off and I trudge down the hall to the coffee pot, turning it on in a sleepy haze. I creep quietly into Lily’s room and remove a test strip, then pierce her little finger to obtain the drop of blood that will tell me if she is ok and what, if any, action I need to take to make sure she stays that way. For almost two years, I had no idea what the number would be, but since we’ve been using a continuous glucose monitor (CGM), a small device implanted under her skin, I’ve at least had an idea of what her blood sugar would be. Often, my wife or I had been up just a few hours before, checking her blood sugar and giving her juice if it was too low or insulin if it was too high. We almost never slept through the night, because in our pre-CGM days one of us rose at 3 AM to make sure she was ok, and after that we usually woke up at some point due to an alarm going off telling us we needed to do something.

This morning, I find myself incredibly well rested. I drifted off to sleep around 11 last night, and slept soundly until my alarm went off at 5:30 AM. I peeked over at my phone and the graph of her CGM reading, smiling to myself when I saw that her blood sugar was in range. I turned on the coffee pot and crept silently in her room, then checked her blood sugar to calibrate her CGM. On her graph I saw the blue dips and rises in the line representing her basal rate, or the amount of insulin provided constantly by her pump, and smiled again as I realized just how many small but crucial adjustments had been made to that rate, and just how effective they’d been at keeping her in range.

For the past six months, we have been a part of the small but growing worldwide community in which parents/caregivers and persons with type 1 diabetes have been using DIY systems to help fight the incessant battle one must engage in to keep ourselves or our children safe. Having no background in technology or engineering or coding, I was hesitant at first to employ these amazing methods out of self-doubt that I had the ability to use them properly. Through the encouragement and support of an incredibly talented and patient and kind group of strangers, I finally found the courage to try it, and the results have exceeded our wildest dreams.

Type 1 diabetes is a monster. It never stops and it never goes away. From eating to exercise to even sleep, daily activities that many others take for granted have the potential to cause wild fluctuations in Lily’s blood sugar, and in worst case scenarios, put her life at risk. Parents of children with diabetes are often exhausted and stressed out and filled constantly with a sense of worry and even dread. I admit to having those feelings at times too, but now they seem so much fewer and far between.

These systems aren’t perfect, primarily because they still require a great deal of human input and effort, and with that comes the natural potential for error. A mistake in carbohydrate counting, for example, can cause terrible fluctuations and throw the systems off. Improper settings can do the same. I’ve worked very hard to minimize these risks, as has my wife, and we still have much to learn. But six months in, we can’t imagine life now without this technology.

We are so grateful to all involved in these projects. We are so thankful to Katie DiSimone and Kate Farnsworth and Dana Lewis and Pete Schwamb and all the people out there who’ve been there along the way to help us, and who continue to innovate and improve. We’re so grateful to the others who’ve had the courage to do this, and in turn have encouraged us to do the same. I worry about Lily all the time, and I admit that my mood too often corresponds to her blood sugar reading, because I just want her to be safe and happy and focused on being a kid. With this technology, that is now more possible than ever, and I can’t imagine life without it.

==Clayton’s been on the Real Life Diabetes Podcast twice to talk about his journey, first HERE, and then HERE.==

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