Diabetes Poetry Day

Eleanor (7) wrote the following poem about diabetes.

Ouchie Ouchie prick your finger
get a tissue, get a tissue!
Well, that didn't help, so get some StingEze

Her 13 year old brother, Kenneth,  a type 3 like me, wrote this diabetes haiku

Her Dexcom buzzes.

"What does Dexie say?" Mom asks.

Two hundred fourteen.

Send your kids to diabetes camp! Even if you're anxious! Do it anyway!

This is my second time to participate in diabetes blog week.  It's kind of amazing that here we are a year into life with D. When I participated the first time I was such a newbie! Eleanor had only had diabetes for two months.

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)

So, my big point of advocacy is very simple really. You want to change the world?  It's just to encourage all the D-Mamas out there to let go just a little and send their kids to Diabetes Camp.  Find one near you, or find a really good one that you have to put your youngster on a plane to get them there, but find one and pack them up and send them on their way.  You can change your child's world with that one gesture.

A year ago I would have told you you were crazy to suggest that I send my newly diagnosed daughter off to Camp Sweeney for three entire weeks at the tender age of six.  I even called the camp and asked, "Do people actually do this? Do people actually send their six year olds out there for three solid weeks?!" The good folks on the phone assured me that people do.

Not long after, we were very pleased to discover free passes to Camp Sweeney's Spring Fling in our packets from the early diabetes education classes we took at Dallas Children's Hospital.  By that point she was begging us to find her some friends who also had diabetes, so we bundled up the whole family, rolled up our sleeping bags and spent a weekend at Camp Sweeney for their Spring Fling.

By the end of that single weekend, my husband and I had turned a complete 180° from our original position.  When we started we had absolutely no intention of sending her to camp out there.  We only wanted to go to the Spring Fling in the hopes that she might meet a couple of girls with diabetes and make some diabuddy pen pals.  But, by the time the weekend was over, we looked at each other and shrugged realizing that Camp Sweeney was so amazing, and had so much to offer her that we could not in good conscience deny her an opportunity to go.

A diabetes camp can give your child something you can never give them.  It's that simple.  They go out there and for that time they are just like everyone else.

Plus… really, don't be a martyr.  You can have a break once a year! Those counselors are amazing! It's highly competitive, the kids in med school vie for the jobs at these camps.  They are able to hire the best  of the best because so many people want the jobs.  The staff absolutely blew my mind, not just with their medical knowledge, although that was stellar, but with their people skills.  They made the whole thing energetic and fun.  I know you've heard that before… but seriously… these people are like cheerleaders; life coaches; and older siblings all rolled into one.

If you've been reluctant to send your child with diabetes to a summer camp, please give it some additional thought.  At the very least, find out when the open house is at the camp, and at least go to that.  There's nothing scary about taking the whole family to the camp for the afternoon to go check it out.  It won't require a commitment.  If you can go to a weekend spring fling as a family, even better.   Give it a chance.  You owe it to your child to give them diabetes camp. You owe it to your child to change their world.  There is nothing else like it on earth.

Letter and Photo to Dr. Ham

Eleanor wanted me to send a photo of her Dexcom showing her BG in range for 24-hours-straight to her endocrinologist, so I did.  Here's the email letter and the photo we sent to Dr. Ham:

Dear Dr. Ham

     Eleanor McCalpin (7) requested that I send this photo to Dr. Ham. She was very proud of herself because her BG stayed in range for 24 hours straight. That really doesn't happen all that often, although we do strive for it and reach it from time to time.  But furthermore, what was special about this particular day was that it was during the holidays and Eleanor had eaten cookies with frosting and had hot chocolate to drink.  Because of the CGM we've gotten better at knowing how her BG will respond to certain foods.  The more practice we have, the more we are able to plan ahead. So, for the treats we were able to pre-bolus and superbolus, and prevent a BG spike.

Always trying to Improve 

We are not always able to do that, there are days when there's just no way to plan ahead, or wait 15 minutes between bolusing and eating, but we keep learning and we keep making an effort to improve.  

 It's all coming from Eleanor

What's exciting is that Eleanor herself suggested to me that we pre-bolus for the cookie.  Then, she went and got a book to read to pass the time while she waited for the timer to signal she could finally eat. I'm proud of her awareness and her self motivation.  I think the visual feedback she gets CGM really helps give her ownership of her diabetes management.  She can see immediately what happens if she eats a cookie or a cupcake… and she can see what a difference it makes if she waits just 15 minutes before she eats it instead of eating it right away. She says cupcakes even taste better when she has to wait for them.

Trying Whole Milk 

We've also found that putting whole milk on her cereal instead of skim mitigates her post breakfast spike tremendously.  We decided to try this because her Daddy, who is also wearing a CGM now, discovered that he had a dramatic difference in his post breakfast spike depending on wether he put real cream in his coffee or non-fat non-dairy creamer.  Even if the carb content of their breakfast is identical… the fat content completely changes how fast their BG rises.  

 Dexcom Continuous Glucose Monitors Make a Difference!

The CGMs have become invaluable tools for both of them.  Michael (her daddy) has had diabetes for 14 years, and he's always had good control, but in the first four months since he started wearing a Dexcom, his HbA1c dropped an entire point. 

Hot Chocolate Mustache - She can eat Anything with enough planning

Anyway, I'll wrap this up.  Eleanor wanted Dr. Ham to see the photo of her Dexcom in range for 24 hours straight, so here it is (I hope you can also see her hot chocolate mustache), along with a photo of her reading on her Kindle while she waits to eat the cookie, and a photo of the Santa cookie (with lots of extra icing). 

 Just feeling Proud

We don't have any questions or need any feedback from the CDEs,
Eleanor just felt proud and pleased, and wanted to share some good news. 

Thank you, and Happy New Year!

Julie, Michael & Eleanor McCalpin