CGM Condiments (hold the pickle)

We started using the Dexcom Share in December.  It’s a way to for me to see Benny’s blood sugar on my phone. However, for it to work, the Dexcom CGM receiver has to stay in a stationary and bulky cradle. We like it a lot but we only use it at night.  This week, Dexcom announced they’re eliminating the cradle. It’s a big step forward that will make it easier to monitor blood sugar remotely and most likely change the way we use the Share on our phones.

There’s more to the announcement (you can read it here). In approving this new receiver, the FDA also made it easier for future diabetes mobile apps. It’s great news and a really exciting time for diabetes technology.

Of course, using a Dexcom doesn’t mean you don’t have highs and lows, it just means you get to see them in living color:

mayo blog pic2

Pretty good, right? Sometimes there’s a lot more yellow & red!

Red is for low blood sugar, yellow is for high.

I told B the other day how Kerri at SixUntilMe calls the ups and downs Ketchup and Mustard.

He looked over at the Share readout on my phone and said, “Needs more mayo.”

Eight For Eight

This month marks eight years since I started this blog. I began writing one month after Benny was diagnosed; he wasn’t yet two and life turned upside down.  That first post was titled “Thank you.” After all this time, I’m still very grateful. Thank you for reading, commenting and all of your support.

I thought it would be a good time to take stock and think about some of my favorite diabetes finds and experiences over those past eight years.  This is a longer post than usual, so thanks for sticking with it.

Eight favorites for eight years of diabetes blogging (a ridiculously incomplete list)

Pump technology changes: When we started pumping in 2007, we used the Animas 2020. We loved it immediately for the flexibility and precise dosing. The tubing didn’t bother Benny for a minute. When the warranty was up, four years later, we got the Ping, the next pump from Animas. It pairs the pump with a remote meter. We didn’t even know we needed the remote, but it quickly became one of our favorite features. Our warranty is up again this summer and Animas has another new pump, the Vibe. It’s the first insulin pump to integrate the Dexcom CGM. Which leads me to…

Using a CGM: We started using the Dexcom in December of 2013. There are so many incredible things about this technology. Knowing blood sugar trends, hearing the alarms when going high or low and numbers at a glance have given us a window into Benny’s diabetes. They’ve helped him get better control and afforded him even more independence. 8-10 finger pricks a day give you an idea of where you are in that moment and no idea where you’re going next. The CGM gives you a real-time continuous (every five minutes) reading of BG with an indication of where you’re heading (up, down or steady) and how fast. It’s a game changer.

DOC – The diabetes online community has grown incredibly since I started blogging in 2007. I’ve always like finding out what adult T1Ds have to say – it’s like looking into my son’s healthy (I hope) future. So I started reading Kerri’s blog, and found Scott Johnson and Kelly. I’m not much for message boards, but I liked being part of TuDiabetes, especially The Big Blue Test. Moira and Meri are always inspiring and Project Blue November is a new resource that’s growing. However, my favorite part of the DOC is…

#DSMA – Diabetes Social Media Advocacy: Every Wednesday at 9pm I probably lose a bunch of my “regular” Twitter followers. It’s worth it. #DSMA is a fast hour of diabetes-centered conversation using Twitter that usually includes humor and insight. It’s like walking into the diabetes-version of Cheers every week (ask your parents, kids).

Advice: Ask D’Mine, Wil Dubois’ advice column over at Diabetesmine is a must-read for me every Saturday. The questions he answers aren’t always ones I’d ask, but I learn something with every column. He helps people live with diabetes as individuals, not with a one-size-fits-all beige textbook answer. And I’ve bookmarked his column on T1Ds and drinking. Because it’s gonna happen.

Local connections: For a long time, we felt very alone in our part of town. The few families I knew with T1D kids lived about an hour away and no other child at Benny’s school had diabetes. At the end of first grade, another little boy was diagnosed. That fall, two other T1D children started at our school. I set up a dinner for the four of us and talked about it on social media. More families found us and the numbers grew. I started a Facebook group (Charlotte T1D Parents) so other local families could find each other. Online support is nice, but there’s nothing like connecting in person.

Camp: Our endo practice runs a three day camp for children ages 4-13 and we send Benny to the ADA week-long diabetes sleepaway camp around here. Benny says it’s the best week of the year. He always comes home having tried something new and having reached a new milestone. His experience at diabetes camp made it possible for him to go to same, regular sleepaway camp as his older sister later in the summer. First for two weeks and last year for one month, just like her. It’s wonderful to watch his independence and confidence grow. There is nothing like time away from your parents to figure out who you are and who you want to be. Diabetes or no, camp is great.

#WeAreNotWaiting: I will never forget seeing a tweet from John Costik with a picture of his remote blood sugar monitoring system. Costik had created a way to watch his sons’s blood sugar from daycare all the way across town on his computer at work. Costik and others who started Nightscout are pioneers in our community, along with Dana & Scott from DIYPS. Not in it for the money, making large parts of their codes and methods freely available, they are making us all look at our own information in a different way (More info here in a great write up from the Wall Street Journal). Meantime, the Dexcom technology keeps going forward, most likely pushed by this community. We use and love the Dexcom SHARE but part of it may soon be obsolete; the FDA just announced the latest step toward allowing the Dexcom transmitter Benny wears to beam BG numbers directly to our phones. Very cool.

Reading over this list makes me laugh a little. Eight years ago, I couldn’t have imagined I would ever have anything positive to say about our experience with diabetes. What’s next? Well, eight years from now, Benny will be off to college. That’s a completely different list!

All I wanted from this blog was a place to answer questions and explain what my family was going through. It has become so much more and it helped lead me to an incredible community. I am grateful beyond words.

Type One Nation Summit

Just back from the TypeOneNation Summit, our statewide JDRF retreat.  I was excited to give the welcome to everyone and then to do a session on travel. A few quick thoughts:

Best unofficial sessions happen at the hotel pool. We went Friday night and again Saturday afternoon after the Summit was over. This is where Benny made his newest friend (an 11-year-old just diagnosed last month) and where I was able to meet half a dozen parents. Somehow, diabetes conversations in the hot tub are just better. Hardest part is recognizing people the next day in real clothing.

I wasn’t able to attend Gary Scheiner’s session (he wrote the terrific Think Like A Pancreas), but I was able to speak to him for a few minutes at the vendor fair. We had a great conversation about meters. I use the OneTouch Ping meter-remote that goes with our Animas pump. He suggested I look into a OneTouch Verio IQ. I love our Ping system, but he pointed out it that the newer Verio IQ is more accurate, which would make our Dexcom CGM more accurate. That’s great, but I just got three months’ worth of One Touch Ping test strips, I love the remote and our meter values matched our latest A1C. So, not an emergency, but something I’ll definitely look into this year.

I partnered with Charlotte-area TSA trainers for my travel presentation. They gave the rules and regs and I spoke about the realities of travel. The TSA ladies were really interesting. We had to do some technical adjusting; we couldn’t share the same laptop for the presentation (because, Government). They didn’t give our group any information that isn’t readily-available on the TSA website, but somehow having real people talking to us about what’s allowed made the whole system seem more human. I got some great questions about how I pack, what I bring and where we go. I last wrote a bit about travel over on Animas’ site (click here for more).

The highlight of the event, for me, was talking to Kady Helme. She gave the keynote speech about her experience with the artificial pancreas project. Kady was diagnosed with T1D at age 6. She’s now in her early 20s and took part in an artificial pancreas clinical trial this past fall. In addition to the big talk, she also spent time with B’s age group. He’s eager to get into a clinical trial for this (we’re trying, but it’s a real long shot), so he was excited to meet her.

Kady Helme & her newest fan

Kady & her newest fan

One tip: careful about who follows you on the bill. I gave the welcome presentation right before the magician took the stage. It was so jam-packed in there that they had all the kids give up their seats and sit on the floor right up front. That’s great for the magic act, but while I was talking, I swear I could see the kids thinking, “Enough already, lady. Bring on the balloon animals!”

SummitCrowd

I’ll work on my card tricks for next time.

Thanks to the Greater Western Carolinas Chapter of JDRF for having me speak. Animas Corporation paid my speaking fee and my expenses.  No one looked at my notes or told me what to say there or write here.  

Happy New Year!

I’m not much for New Year celebrations. We had a quiet night with the kids, making s’mores in the fire pit and toasting with some quality sparkling cider:

Ringing in the New Year

Instead of big resolutions, just a few goals for 2015:

More:

Writing, water, veggies, laughing

Less:

Guilt, caffeine, junk food, staying up late for no good reason

Wishing you a happy and healthy 2015!