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.

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?

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

To Pump or not to Pump

Making the choice to use an insulin pump is a personal one. There are a lot of factors involved in deciding if and when a pump will work for your child.

For me, the choice to wait was due large in part to my son's impulsive nature. I was concerned he would treat the pump like a video game and press buttons that could deliver insulin when it wasn't needed.

I didn't know there were pumps with safeguards in place. The one we chose has a three button system to turn it on. It's a requirement of the FDA, a good one. 

After 5 years with type 1 diabetes, we made the call to get the process started. 

First, the doctor gave us brochures to look over and pick the pump that we wanted. Since my son is now twelve, I included him in that process. He is the one that has to acclimate to using it and I wanted him to select a pump that he'd be comfortable with. There are a few out there, and my son's doctor told us it was our choice. 

Insurance companies generally want to see blood sugar logs. Ours wanted to see 2 months worth. Some want three. We keep logs of all his sugars and insulin doses, so fortunately we were prepared. 

bookcoverimgs.com

The process went quickly. Within a few weeks, my son was connected. What we didn't expect was the dramatic change in his blood sugars.

He has adapted quickly to the pump...much more quickly than I could have imagined.  It clips to his belt or he tucks it inside his pocket. Every 2-3 days, we change the cartridge and the infusion site. 

reviewsmemo.com

I expect to see a lower A1C at his next check-up. With that, a lowered risk of diabetic side effects.

The decision of whether to pump or not to pump is an individual choice. It was definitely one that we took time to consider before making the transition. 

We're optimistic, so far, that the results will be worth it.

Your Child Depends On You!!

Being a kid is tough enough without the complications of a chronic disease. The joy of a normal childhood is stolen from them...unless their parents take an active role in giving them the best care possible. 

I don't want to cast my son in the 'sick role' of society. My desire is for him to have as normal of a life as possible. This isn't always an easy task.

Shots, blood sugar checks 4-6 times a day, hypoglycemia, constant blood sugar monitoring during extraneous activities, keeping a daily log book of blood sugar levels, carbs and insulin dosages at every meal as well as quarterly endocrinologist visits are all a normal part of a diabetics life. These measures are small in comparison to the huge benefits received from following these steps - a long and healthy life.

Not doing these things for your child is equivalent to signing their death certificate. 

A bit blunt? Sure. But it's true.

I couldn't imagine any parent would neglect the duties associated with the care of their child with diabetes. It was incomprehensible to me...until the other day.

I had a conversation with a school health professional this week. We were discussing the advances in diabetic care with medical devices like the insulin pump and new research which could lead to a cure within five years time. She told me that in years past there may have been one child in the district with diabetes. Now, there are four alone in the one elementary school where she works. Diabetes is predicted to affect one in four people within the next 10 years. This is evidence of those statistics.

The next part of our conversation was disturbing to me as well as sad. She said the parents of the diabetics she is working with now are doing a great job with the children. But just a couple years ago, there was a young boy whose parents gave him no treatment at home. The only diabetic care he received was during his time at school. 

When he was in fourth grade, he passed away.

I was stunned. How could a parent neglect their child's diabetic care or any care for a chronic disease? This is blatant child abuse in my eyes. His death could have been avoided with monitoring and proper health care.

 From my experiences, I realize that insurance companies make it difficult for diabetics to afford their supplies. There is help possible through the American Diabetes Association and the Juvenile Diabetes Research Foundation. 

But flagrant neglect is unacceptable. 

If you or someone you know has a child with diabetes or the symptoms of diabetes, including but not limited to: 

Loosing weight without trying

Weakness and fatigue

Frequent trips to the bathroom

Unquenchable thirst

Tingling or numbness in your hands, legs or feet

Blurred vision

Dry, itchy skin

Frequent infections or cuts and bruises that take a long time to heal

Call your doctor. If you feel there is something wrong, advocate for your child. My doctor told me my son had a virus, but I knew it was more serious than that. Demand blood work be done. 

Also, monitor your child's blood glucose at every meal and before bedtime. Keep in contact with your doctor when sugar levels change, when they are ill or when they are vomiting. 

It's not difficult to do these small steps to give your child a great life.

Don't they deserve the chance at a normal life? 

Don't let them down. 

Apple Leads the Way in Glucose Monitoring Systems

A New Innovation 

from IBG Star and Apple

As the mother of a little boy with diabetes, as well as being Type-1 myself, I am always excited when new innovations come along that make living with diabetes simpler.

Just out last month, IBG Star has partnered with Apple in developing a new metering system. The glucose meter connects directly to the Apple iPhone or iPod. It syncs with an app that is downloaded to your device. The app tracks blood sugar trends when you input data into your device. Blood sugar numbers are logged as well as other information to help your doctor evaluate your progress.

The data can be emailed directly to your doctor. It can also be  printed to take to your doctor on your next visit.

The blood glucose meter can be used alone or with the iPhone / iPod. It's smaller than most meters. This is a plus when having to check blood glucose in a public setting. Rather than pulling out an obtrusive device and drawing attention to an already uncomfortable situation, a child may appear to be just checking their text messages or playing a game on their device. 

Currently, most insurances don't cover the device. It is only available at Walgreens (for about $75 with a prescription from a doctor) and at the Apple Store ($99.95). 

The IBG Star Web site also has offered assistance with test strips. By registering for the Star Savings Co-Pay Program, a patient will never pay more than a $20 co-pay for their test strips. (Restrictions apply - including to those already on Medicaid, Medicare, or other state funded programs. Not valid in Massachusetts.) 

For more information on the IBG Star blood glucose monitoring system, click on the link below:

http://www.ibgstar.us/

In a mobile society, it it isn't always practical carrying all the supplies needed for a day or weekend trip as well as the many diabetes supplies. For me, it's multiplied by two. 

One less cumbersome device to tote around makes this mom happy indeed. 

A Wonderful Week

It was a wonderful week, visiting with Jolene Philo and discussing her new book, Different Dream Parenting.

I want to thank Jolene for stopping by and sharing some of her time with us. She has had plenty of experience raising a special needs child. And she was gracious enough to stop by and share her knowledge with all of us.

Thank you to those of you who stopped by and left a comment. 

And...

Congratulations to Kathleen Maher for winning a copy of Jolene's new book. 

It's a busy season, and I apologize beforehand for the brevity of posts. I am working on ideas for articles for the new year. 

If you have any suggestions for topics you'd like to read about, please drop me a line and let me know. I am always looking for new angles to cover.

I will share our Christmas news and how our season of goodies, candy, and abundance of food at this time of year worked out for us.

Sawyer is doing great! He's a tough little guy. 

I am sure Santa has taken notice :D

Merry Christmas to one and all!