Sweet Sixteen

Sixteen sweet things about the past sixteen years with T1D:

1. My daughter was diagnosed in time.

2. Christmas in a children's hospital is not an experience I'd wish on anyone and yet was magical in ways no other Christmas could be.

3. She and I both survived the toddler diabetes years.

4. We found other families with diabetes quickly.

5. We continue to have diabetes people in our lives: friendships we treasure both despite and because of their diabetes glue.

6. Ruby, the teddy bear with diabetes, lives with us and continues to be a fuzzy source of support.

7. A perfect and welcoming preschool was, essentially, in our backyard.

8. I found the diabetes online community; and then I got to start a blog and revisit my second grade goal of being a writer when I grew up.

9. The elementary school nurse was a treasure; and her diabetes care was great too.

10. Friends' parents invited my daughter over for playdates, however uncomfortable they may have been.

11.Lots of friends and family have gone out of their way (especially in those early pre-pump years) to loop us in on menu plans and eating schedules, making our visits easy.

12. Teachers have kept an extra eye out, no matter the other chaos in their classrooms.

13. Schools have found a way to make trips, special events and after-school activities work.

14. We've had amazing medical professionals on our team.

15. Math has always come easily for my daughter (and my math skills have greatly improved).

16. My daughter has grown into a responsible, self-confident and compassionate young woman.

Sixteen years ago today we had a tough day. There have been quite a few tough diabetes days every year since then. But, from time to time, it's worth counting our blessings.

Insurance of the Year Club

We're switching insurance again.

Of all the employer-sponsored insurance plans offered for 2019, our current plan will now be three thousand dollars more expensive for the year than the least expensive one. The cheapest of the three, of course, is the one we've never had. We will sign up for what the company calls a 'gold plan,' and the system is tiered so that all insurers in the gold plan cover similar medical services, charge the same copays and have the same deductibles. The gold plan's coverage fits our high medical use and costs, and so is our best choice. But the per-paycheck cost is staggeringly different for each plan.

We did our homework, which was easier this year after lots of practice last year. The new insurer will cover all of our current doctors and drugs (though still not Novolog which stinks). It's possible we'll be able to escape Edgepark's grip since other DME providers are listed, but I'm not holding my breath since they are still one of the options. And while I generally subscribe to the adage, 'the devil you know is better than the devil you don't know,' $3000 is a lot of money.

The big risk, the one we can't get a clear answer on, is whether there will be hoops we have to jump through to get coverage for diabetes-related equipment. We delved pretty deep into the new insurer's website and made phone calls to learn about diabetes coverage and could not come away with a clear answer on whether we'd have to prove my daughter's need for an insulin pump and CGM before coverage is granted. Between reading and conversations, the possible answers range from 'you might need a letter of medical necessity from your doctor' (which is pretty standard), to needing to submit tons of documentation, to maybe they don't cover CGM unless it's some sort of dire situation.

I'm well aware that we're incredibly fortunate that we have access to insurance at all. That we've consistently had access to really good insurance, which for the most part covered what we needed with little to no hassle, is unusual. Maybe that's about to change, but after 16 years at this, I'm prepared to use every tool I now have up my sleeve to fight for what my daughter needs. Hopefully we'll repurpose that $3000 wisely. If need be we'll spend it on things that aren't covered. Or on a little getaway to help me recover from a year of insurance fights.

Slowly but Surely

Our household diabetes policy (yours may vary) has been for my daughter to take on diabetes responsibilities as she feels ready. The understanding has been that while we do not expect to live in her college dorm with her, she should not feel rushed. Every diabetes task will ultimately be hers, for the foreseeable future.  For now, we're here to help.

Slowly but surely over the past sixteen years, one or two things at a time, my daughter has taken over her own care: blood sugar checks, carb counting, then insulin pump site changes, and so many more in between.

The Dexcom was at the center of the two lingering exceptions.

Because of the awkwardness of the G4's insertion device, I continued to assist with putting in a new sensor every 7 or so days. She did it once, to prove to herself that she could in case it failed while she was traveling without me, but it was super-awkward and I was happy to keep helping. The insertion device for the G6 is a much easier to handle one-handed push-button device. My daughter inserted the first and second ones with no problem. It's easy and nearly painless, she reports, though the spring-loaded insertion contraption is alarmingly loud.

The second area of responsibility we've recently relinquished (to some extent) is overnight diabetes care. Until the G6 arrived, the Dexcom receiver remained on a parent's bedside table each night. We got up to deal with its alarms while my daughter slept, or roused herself briefly for juice. That routine, of course, followed years of setting 2 a.m. alarms for fingerstick checks.

The new plan is that my daughter keeps her phone, and the Dexcom receiver, on her bedside so that she can awaken to deal with the alarms. She started with just the phone, but the Dexcom app alarms were not loud enough to consistently wake her (though they woke both of her parents in the next room). She's added the receiver, which she keeps on the bed with her to feel its vibrations, and so that two alarms are blaring at once. She still does not consistently wake to the alarms, while I, of course, still do. But things are improving. She did wake up and treat a low this week without my hearing anything, which was good news. And the alarms are diminishing after the Thanksgiving leftovers are gone, and as we use the Dexcom data to work on keeping numbers more consistently in range...which is the ultimate goal.

It's bittersweet to watch my kid take on these responsibilities. Yes- by all rights they're hers to deal with and it's important for her to practice with the safety net of mom and dad around to help. But how I wish she didn't have to.