Twins Always Take Care of Each Other!

Thursday, October 16, 2014

WE are not waiting!

I love me some diabetes technology!

Well, I am so thankful for what we live in a time that provides pocket-sized glucometers and tubeless insulin pumps although I can still wish for more! Who wouldn't when it is their child that lives with type 1 diabetes every hour of every day.

I try to look at myself as pretty laid back.
Although, I am not yet at a place where I could imagine saying a sleepover at a friend's house is in our future. Well, it wasn't. Perhaps now my thoughts on that have changed!

Thanks to the NIGHTSCOUT PROJECT!

You see, there is technology out there but government regulations slow the progress and availability in the U.S.
(Although, when you consider what the FDA considers safe for food products it shocks me why their standards for medical devices are so rigid).

In any event, the Nightscout Project is an amazing technological advancement that was not released by any pharma or device company. It was created and released by parents of a type 1 diabetic and refined and advanced by those in the diabetic community and released at no charge to the public.

As I have blogged about before, my diabetic daughter wears an insulin pump and a continuous blood glucose monitor (CGM). That CGM means that she wears 24/7 a transmitter that transmits her blood sugar numbers to a receiver device and it gives new readings every 5 minutes. A fantastic piece of equipment. Although, the receiver must be within 20 feet of the transmitter. Meaning, while in school or whenever I am not with my daughter (even if she is in another part of the house playing), I often do not have access to those blood glucose readings.

So, the Nightscout project has taken this CGM data and uploaded it to a cloud server (via a hardwire connection to a cell phone). It took some work and a bit of new hardware but this allows me to remotely view my daughter's blood glucose readings from wherever she is - or wherever I am!

Which has opened new doors for us!
I am now willing to entertain opportunities for her to participate in after-school activities that I previously would have been apprehensive about or I may be willing to consider allowing sleep-overs. 

While it may take years for the industry to get there, we are so thankful for the hard work of the individuals and the families that have spent countless hours making the Nightscout Project possible so that our family and others like ours can gain a little more normalcy in daily life living with type 1 diabetes. 
#wearenotwaiting


Wednesday, October 1, 2014

Berks T1D Connection Family Camp

Soooo
We had the most amazing time in September!

My dream when I started Berks T1D Connection was to host a local family camp for our local type 1 diabetics and their families and that dream was realized just last month and I have to tell you it was a magical weekend!


We hosted many families from our region and the program consisted of nationally renowned speakers to educate our families while our kids (T1Ds and their siblings) enjoyed awesome camp activities with the amazing camp staff (if you are ever looking for a great facility to host an event, we HIGHLY recommend the South Mountain YMCA)! We hosted a vendor expo where we filled the room with device and pharmaceutical company reps to share their latest and greatest with our families! We even had TrialNet on-site to enroll people in their study. We had great food - Moe's Southwest Grill of Wyomissing even catered our dinner! WELCOME TO MOE'S! And we had an amazing craft for the kids - a good friend who is fantastic at scrap booking volunteered to work with the kids to come in and create this awesome take-home camp photo-frame with a photo of the child from the camp! We also had a large round-table discussion which was just an amazing experience for everyone to discuss what was important to them and get feedback from other families. We had a camp fire where the camp staff facilitated sing-along songs and skits! What an amazing time!

We learned together, we had fun together, we ate together, we sang together, we walked together (a lot!), we even got rained on together! But no one even minded the rain because we were having such a great time!

We had families in attendance that were newly diagnosed and families that have been living with type 1 diabetes for many years. And it was just such an experience to spend the weekend with people "who get it." 

When the thoughts started forming to begin this organization, this is exactly what we had in mind. Local families supporting each other. This organization facilitation education and information to our local type 1 diabetic community. Raising awareness. 

We will most DEFINITELY host this camp again each year so keep your eyes open for registration information in 2015!

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Would you like to see some pictures from camp? CLICK HERE!