Good grief! I have legit dropped the ball for the past, what, 3-ish years?
There have been so many changes, advancements, adventures and dramas in our little life I can't imagine attempting to start rewinding and bringing it all back. So here's a little cheat sheet for catch up purposes:
Sisi is now a goofy, thriving 8 year old just about to finish 2nd grade.
Her little brother? He's totally 6. .. whaaaat? His first summer after kinder is upon us shortly too, godspeed self.
We've officially been on the Animas Ping insulin pump for 4 years this July. 4 YEARS. I'm certain it's impossible I've aged that much, but it happened folks and here we are.
All in all? The pump has been perfect for life with a young child, things get forgotten (cough, like every day at school practically, cough) and having the pump on her at all times has often saved the day on that 5th return trip to school to frantically run to the classroom in hopes the teacher is still miraculously in attendance on a Friday so that we're not left without our kit bag for a weekend.
We're still rocking the Dexcom - G4, because I don't really feel the need to upgrade yet and the phone vs receiver thing is moot - she has both and the teacher understands and knows the receiver numbers up in her face. I like that, too.
Some developments that have changed over the past few years are basically these:
Full time nursing staff at our elementary school.
Nope, you didn't read that wrong. This is a public California school, and we have full time (almost) nursing staff on site. We have our fabulous district nurse on the short Wednesdays, and two LVN's (retired nurses) who have been hired to be onsite from 9:30-1:30pm. Amazing, right? I am counting my lucky stars here team. We have to be one of the most stoked groups of t1 parents ever, or at least in our immediate area, hands down.
Not only do we have the coverage, we have a team effort. They are flexible, they are helpful, and they've worked with me to build essential a technical network of information available to all of our fingertips to keep our kids safe at school.
"They"? Yup, we have 5 diabetics in our grade school, which has roughly 500 students. 3 of these students are now up and running on my next exciting info drop: NIGHTSCOUT.
If you're in the diabetic community and you have yet to hear about The Nightscout Foundation or "CGM in the Cloud" (#wearenotwaiting) - you've just landed on a goldmine.
I stumbled very luckily upon their Facebook page in the infancy of development - July roughly 2 years ago when I believe there were about 1000 members (there are 10x+ that many and globally now!). I dug in and set up our databases and websites and hacked our Dexcom and guess what? BEST THING EVER.
No really, and this is probably old news at this point in time for many, but this was absolutely GAME changing for our family. While I have a semi-tech-nerd background I am not what you would call a true techy and am grossly out of practice, but I did it, you can do! And I suggest going there right now if you have a moment, because even if it seems completely overwhelming at first - YOU CAN DO IT. And they'll help you. We all will. I've helped two families at our school get online (or at least learn about how it works so they could do it themselves). It's free info, it's free support, and I can see my girls numbers no matter where she is or where I am, any time in real time.
On my wrist. (Thanks Pebble watch!)
What does this really mean? Is it stressful? I guess that depends on your personality. I like glancing at my watch, knowing what's happening, and knowing that if I don't see a change I can shoot a quick text to her teacher or friend or my mom or the nurse - whoever - and give them a heads up. Often it's not necessary if I breath for 5 minutes and see a change I need to see to feel better. I love it. It took some hidden weight off of my shoulders that I don't think I realized was there. The "not knowing". Even with just a dexcom, the sense of relief I gained from Nightscout was tremendously more.
What about DexShare, you say? I know, getting data anywhere anytime is old news now that Dexcom has released the G4 Share and G5 - still, I prefer the data coming from Nightscout, which is more comprehensive and trends are easier to read.
Currently there is a huge bout of people trending to build their own Artificial Pancreas (Henceforth: AP cause I'm lazy). Check out "OpenAPS" if you're curious. I'm not tech savvy or brave enough to try it myself, but it's just going to keep getting better now that it has tech eyes on it from people who CAN do this and can find ways to make it accessible to everyone. It's what they do. #wearenotwaiting.
What aren't we waiting for? The FDA. The for-profit companies to figure out things that our members are CRUSHING right now with pretty impressive success rates. Sure, it's nice to have the FDA trying to keep things safe, but they're also the crusher of all things progressive until it's no longer progressive. At least, a lot of the time. And frankly, they know nothing about day to day life with Type 1. The lack of sleep. The constant thoughts and stress that can sometimes consume you. The worry for your child or other loved one. While these technologies run to the shelves successfully in Europe, our FDA waits. I get it, that's our system, but OpenSource is legal, and our medical choices are not and cannot be mandated by the government - our bodies and health is our own, and if you know what you're doing, more power to you.
Still, if you aren't tech savvy enough, like myself, to go full AP at this point - no worries! It's looking like 2018 is going to be a big year for us friends. Several companies (BigFoot, Beta Bionics, TypeZero and now we see notices from companies like Omnipod and Medtronic trying to get their options out as well) are in the race to produce the winning AP solution. Sweet. Market drive! I like it.
So this was basically a re-entry post to just say hey - yay - stuff is ACTUALLY happening guys. YES. We've been hearing it forever, but change is coming.
Speaking of change, because it's time for a new pump through insurance Sisi has decided she's fed up with tubes - onto the Omnipod we go!
Anyone have some tips or experiences for me? Seems pretty straight forward and I'm excited for her. I'm also excited to not have to attach and prime tubes at 2am, so there's that.
Above all please remember: You're crushing it. It's not crushing you. And though sometimes you may feel alone, you are so NOT alone. We're all out here, warrior-ing alongside you.
Until next time, which shouldn't be 3 years from now.
In October of 2011, our 3 year old daughter Sierra was diagnosed with Type 1 Diabetes and spent three nights at the local PICU. These are our stories, experiences, and our life as a family of four moving forward.
