FUDiabetes

[FIRSTS] - Meeting with other T1D families today

Three years in and we’ve not met with or had Liam around other T1D kids…the opportunity just never presented itself. That changes today. We are scheduled to meet up with our local T1D families club in our city at a volleyball arena and while the older T1D’s play volleyball, Liam will be playing with, talking too and having fun with other T1D kids around his age. He’s looking forward to it.

Meeting other caregivers in the local area has become important now because we really want to pick their brains and determine what is and isn’t allowed in the county as far as our 504 accommodations are concerned. I have a list of 54 accommodations that I want to run over with the parents so that I can get their feedback. Liam will be the youngest there, but there will be a few kids close to his age (6 - 10 years old). This will be good because their parents will have 1st hand knowledge of what works and what isn’t working so well within the county and will help Erin and I in the formulation of our 504 bullets for the big March meeting with the county.

I already know there are some problems with restrictions being placed on the nurses at the schools (for instance, parents have complained at board meetings that nurses aren’t even allowed to change batteries in devices! To me, this is just INSANE.) So, I’m looking forward to meeting local parents so that we can figure out if public school is something we want to do for Liam right now, or if we will be homeschooling him until he is old enough to basically do everything by himself. I’ll check in after the meeting if there are any nuggets taken from the event.

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How old are the “older” kids?? I have a 14 year old around here who could use some good diabetes vibes, and I think it would be great if he could find a couple of kids his age who were getting along alright.

Anyway, I hope you get some good answers, have some nice conversations, and maybe even make a friend.

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There will be a range of kids there, all 18 or younger. But kids around his specific age there are 3 that I know about, ages between 6 and 10. If you around Fredericksburg and can be there at 1530, come on! :slight_smile: PM me if you’re interested and want the address! Sorry I didn’t invite you…I forgot that you live so close to me.

The bigger kids will be playing vollyball and the younger kids will play with toys they bring and just run around…this will give parents a great opportunity to network and pick each others brains.

FYI - it’s going on from 1530 - 1730 today, possbily longer. But 1530 - 1730 is the schedule time for this meetup.

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Hope Liam has a great time, I have fond memories of meetups with other diabetic kids when I was little (my parents were active in the Children With Diabetes group back in the day) :grinning:

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If there is a next time, please let me know. I’ll try to coordinate with the kid’s parents. I’m sure they would enjoy meeting others out in the wild. I’ve knew them for years before his diagnosis, and I continue to be their main connection to it all. :grimacing:

And would love to hear how it all went and how Liam liked it!

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Okay, wow. What a GREAT time we had! I was able to meet a bunch of parents with kids of varying ages and Liam made a new 5-year old friend named Maddie who happens to be a girl. :stuck_out_tongue: They played tag and hide-and-seek much of the time and spent the rest of the time eating and tossing around a big beach ball.

I learned a lot about what is and isn’t something that our county permits and just a wealth of information. One thing that I learned that just blew my mind was an app called ‘Sugar Mate.’ Sugar Mate provides basically the SAME (maybe not the exact same, but much of the same) capabilities that xDrip provides, but you don’t have to download and configure a bunch of stuff. Just download the app, connect it as a follower of the Clarity data (you’ll get an email address that you’ll be asked to set up as a follower in your G5 Mobile app) and vwhala…you get REAL TIME data anywhere…on a smart watch, on the sugarmate website among other places. It also does predictive high and low AND…can CALL YOU if you are heading low! I mean…WHAT???

So, in literally 5 minutes, I have the app installed on my phone and I’m tracking the data in the app as well as having a webpage open where I’m tracking his data. I don’t know why anyone would use xDrip given that this app does the exact same thing (albeit there aren’t as many options), but it does all that I need it to do.

Now I don’t have to run upstairs to check Liam’s Receiver or my phone to see his BG’s every few minutes, when he’s not with us. Being able to have the webpage open WITH REALTIME DATA, I can see his data in the tab up at the top of the browser.

I don’t see it offered for Android devices, though. Mac App Store and Apple Store. I guess I’m glad I have an iPhone now.

Now I have access to the data anywhere at any time. I am so grateful to have found out about this app tonight.

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That’s awesome!!! I’m so glad Liam had fun and you were so energized by the event!

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That’s awesome!

I’ve been a fan of Sugarmate for a while! It’s pretty awesome. If you have a Mac they also have an app that can display BG in your menu bar and if you click on it it’s essentially the same stuff as on their phone app, all the handy stats and unlimited scroll of your BG trend.

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I just hate that there isn’t an app for the Android.

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That’s the sweetest, coolest thing ever. If it’s anything like how it’s felt meeting everyone here, then he’s feeling wonderful. :heart:

Just downloaded it the other day and couldn’t believe how easy it was for me to get it on my phone, but then we got hung up for some reason when we were trying to get it for my mom. I think we decided it didn’t have followers… for some reason… but it seems you’re one so…

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She can log into the sugar.io website with your credentials and see the sugars any time, so she can access them that way as a last alternative. You have limited followers, and the app requires one of them, so if you don’t have any available follower spots, you have to decide who you’re going to drop from the follower list.

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I’ve got one follower, and she’s enough… she’s like an army of followers all by herself. So if you are allowed to have one very energetic, enthusiastic, and anxious follower that equals six followers but is still just the one, I should be able to get her in…

Though…

I really am going to have to ask myself why before I pass anything on…

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I’m not going to tell her you exist or that this conversation ever happened and really take my time on this one. :thinking:

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:laughing:

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I’m looking very forward to seeing if these phone calls work…I never thought I’d say I actually would enjoy getting a phone call in the middle of the night, but since I’ve apparently turned alarm deaf, a phone call may be the answer I’m looking for to wake me up. It also calls if he’s been level, but over a certain BG number for x number of time…which would be VERY beneficial to us. Some nights he’s perfectly flat at or over 200 and I’d love to WAKE UP to just give him a small adjustment to bring him down even 20 or 30 points, but I just don’t wake up. Looking forward to testing all of this tonight.

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And I just found out you can actually even use it with Nightscout. Very cool app.

And you figured all of this out… tonight??

I did sign up for the phone calls and am sure it’s been calling me, but I don’t answer phone numbers I don’t recognize so… :thinking:

Okay then. I’m just going to let the app occupy my phone home screen and wait to hear back from you how these things are working out. I like the color of it, and for that reason, and that reason alone, have not deleted it. But I’d like to know if it’s been calling me. :grin:

Here’s a list of the features.

Sugarmate is a companion app for users of the Dexcom G4/G5/G6 continuous glucose monitoring system. It works great for both the CGM wearer or follower.

• Easy setup

  • just add Sugarmate as a Follower, or input your Nightscout url
  • login on multiple devices (using one Follow slot total)

• Real-time syncing across all of your devices, including the Sugarmate Mac and web apps

• Additional notifications like Steady Above Normal, Predictive High and Predictive Low, with customizable alert sounds

• Emergency Contacts Alert: designate up to 5 people as emergency contacts and they will receive a text message with your last location when your sugar level is urgently low (Disclaimer: Continued use of GPS running in the background can dramatically decrease battery life)

• Below Normal Call: receive a call to alarm you when your sugar is below normal and you are sleeping (even when your phone is in Do Not Disturb mode)

• Better Apple Watch integration: your watch face updates within a minute of a new reading, shows the time of your reading and the +/- from your previous reading. And works for Followers!

• Today Widget with real time stats and graphs for your lockscreen

• Built-in nutritional food lookup, with voice recognition, food imagery, and barcode scanning

• An infinitely scrolling history of all of your sugar levels (starting 24 hours before you start using the app). Pinch to zoom, or rotate your phone to enlarge

• Siri Shortcuts: just say “what’s my sugar”, “add insulin”, “lookup food” and more

• Apple Health: two-way syncing, plus automatically creates walk/jog/run events based on your steps

• Export and email your readings and activity to an Excel spreadsheet

• Activity feed with photos and voice dictation

  • Track your food, insulin, medication, exercise, manual readings and notes
  • Offline saving so you can still log while out of service

• Over 20 customizable tiles, including a mini-graph and other stats such as average, estimated A1c, median, flux, % in range/low/high, total insulin total carbs, and more

• Themes: make the app more personal by picking your own color scheme

• Multi-user support: manage 2+ people’s sugar levels on one phone.

The data displayed in this app is for informational purposes and should not be used to make medical decisions of any kind. Please see our Terms of Use on your website for more details.

This application is not owned by or affiliated with Dexcom.

This application is not owned by or affiliated with the Nightscout Project.

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lol. I set the number up (the number was provided in the setup) as “SugarMate” in my contacts on my phone…so I would recognize it.

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Did you just WRiTE that?? Or did you copy and paste?? Please tell me you copied and pasted…