Monday, July 9, 2018


Photo courtesy of beyondtype1.org


Adventures at Diabetes Camp

Maybe you've heard of Diabetes Camp, and maybe you haven't. I hadn't known of it's existence until a couple of years ago when my son was given a flyer from the school nurse. (Have I mentioned I LOVE school nurses?) 

Three years ago, a local camp launched their first ever Diabetes Camp. What is it? A safe, structured environment for children with type one diabetes to play, explore, and learn some self sufficiency, with a trained staff. The staff included a nurse practitioner, two medical interns, and three cabin staff members all trained in diabetic care. This gave me peace of mind.

Photo courtesy of myglu.org

The first year of camp was a half week session. It was experimental. Admittedly, I was reluctant at first. My son had never been away overnight. Nobody was trained in his care. 

I waited for the phone to ring, bringing with it dire news about a tragedy that had occurred while hiking, swimming, or boating. 

That call never came.

He survived without so much as a bump or bruise.

Caregivers know the anxiety that goes with leaving the person you care for in someone else's hands. It might be likened to leaving your newborn baby for the first time - so vulnerable and helpless.

Trust me, it gets easier. 

And the best part is that he had trained caregivers around the clock. This gave him the chance to be a little independent from mom, while having support staff aid in his blood sugar checks, insulin pump changes, hypoglycemia, and hyperglycemia. 

The second and third year of camp were a week in duration. During his time at camp, he was able to do all the things any active teenage boy would enjoy.



Photo courtesy of kayakpenderisland.com






Kayaking on the lake




Photo courtesy of news.aces.edu







Rock wall climbing

Photo courtesy of campalleghany.com





Singing beloved camp songs


Photo courtesy of onyahsa.org










Dining in a fully equipped mess hall, with healthy food options. 

Photo courtesy of superhealthykids.com







Photo courtesy of redtri.com


Swimming in the lake.

There were optional polar bear swims each morning, in which my son participated. Brr!

Children weren't segregated. They participated in activities with the other campers. They were housed together so trained counselors could monitor their blood sugar levels during the night. They also had the opportunity to meet other children with T1D. 

The Diabetes Camp was sponsored by Univera and gave scholarships to the first several that applied. Actually, I don't think anyone who wanted to participate was turned away.
We were told this was the last year there would be a Diabetes Camp in our area. We are hoping more funding will come our way for this great opportunity.


The camp was influential in my son's desire to become a camp counselor next year. Camp leaders are trying to find a way to provide a support team for my son the week he would be at camp as a leader in training.







Other activities included:



Photo courtesy of westfieldrepublican.com



Basketball and other games

Photo courtesy of pinterest.com








                     Crafts









Photo courtesy of spotlightnews.com





             Archery












Photo courtesy of rei.com

And campfires






Diabetes Camp was a pleasant experience for my son and me. My son had fun and I felt secure in the knowledge that he was being well cared for.


Monday, June 25, 2018

Pros and Cons of the Continuous Glucose Monitor


CONTINUOUS GLUCOSE MONITOR

It took a long time, a REALLY long time, for our insurance to cover the Continuous Glucose Monitor (CGM) for Sawyer. 

We've had it now for two months, and here are my thoughts on it so far.

Pros

* You can track blood sugar trends throughout the day.

* There are alarms that can be set for various situations, such as extreme lows, highs, or dropping fast.

* During sports, Sawyer could see his blood sugar and trends at a glance.

* Finger pricks only twice a day.

* Sensor change only once a week.



Cons

* It had to be calibrated twice a day. Failure to do so resulted in false readings.

*The sensor and transmitter came off during swimming and other activities.

* The sensor made the skin of his epidermis and dermis itch the entire week he wore it. 

* The alarms go off a lot. Sawyer silenced them because he didn't like the attention in class. Even when we changed the settings to only two alarms, he would set them on vibrate to avoid embarrassment.

* After one of the sensor changes, the monitor stopped receiving readings after one day. 

*Removing the transmitter from the sensor was very difficult.

*We received error messages of not being able to receive transmissions for half an hour.

*We received messages of the transmitter not working and rebooting, which would take two hours to warm-up.

*The cost. (When a sensor or transmitter fails, it's not cost effective to change it until the following week, leaving one without readings until that time.)


Sawyer is currently at camp. The meter wasn't working and it wasn't cost effective to change out the sensor mid-week.
It would have been nice to have the CGM for camp to monitor his BG during all the activity in which he'll be participating.


The CGM is a HUGE advancement in diabetes self management. Depending on the brand you get, the results will vary. 
For us, the monitor worked well during school sports season. For his field trip, it was not always accurate. And for a fun birthday party with other very active teenage boys, it was a flop.

Have you tried a CGM? 
Are you planning to in the future?
What were your results?










Friday, June 15, 2018



Over 3,000 walkers showed their support at the annual JDRF One Walk in Buffalo
(PHOTO CREDIT WIVB NEWS)

WALKING FOR A CURE

JDRF ONE WALK

My family participated in the JDRF One Walk on Sunday for the first time. There was a great turnout of walkers, along with supporters and sponsors of those who would walk. 
I've never been involved in an organized event of this size. 
It was a great way to connect with other parents of children with Type One Diabetes (T1D). 
It was also a great way for children with T1D to have fun while feeling loved and supported by the community.

The walk was held at Delaware Park in Buffalo on June 10. This was my first time visiting this beautiful park. The atmosphere was family friendly. 

After the event, all walkers were welcome to visit the Buffalo Zoo at no admission cost. (More love and support from the community here 💙)

Our team raised almost $6,000 of the region's total donations of 
$642,946!!

Way to go team!!


That's our team!!! Way to go!!









It was a well organized event, all coordinated by volunteers.

Nothing like the heart of a volunteer. 💙


JDRF is the leading global organization funding type 1 diabetes (T1D) research, according to Guidestar.org. The mission of JDRF is to accelerate life-changing breakthroughs to cure, prevent, and treat T1D and its complications. 

JDRF seeks to turn Type One into Type None.

Cutting the ribbon to kick off the One Walk.
Photo Credit WIVB News







" Innovations driven by JDRF, such as artificial pancreas systems, treatments for T1D complications, encapsulated beta cells, and prevention therapies are beginning to advance beyond the lab. These advances have the potential to transform the lives of people with T1D and ultimately bring about a world without T1D" (https://www.guidestar.org/profile/23-1907729).

I hope to see the development and world wide distribution of the artificial pancreas for my son and other brave people struggling with the daily balancing act that is T1D.

That's my dream.
That's why we walk.

Championing for those living with T1D



My son and I want to thank our generous sponsors and all of
those who donated to the JDRF One Walk 💗


More information on JDRF  (Juvenile Diabetes Research Foundation) and the annual One Walk can be found on their Web site at WALK.JDRF.ORG

More Resources: http://www.jdrf.org
http://www.diabetes.org/diabetes-basics/type-1/?loc=db-slabnav



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