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

Girl Glycosylated Announces Bears For Diabuddies!

Bears For Diabuddies is Up!

Hey Folks! Big News! The Bears for Diabuddies site is up and running!

Donate Now!

Or you can go directly to our GoFundMe page and donate to help us get enough money to pay for registering the URLs, and for the filing fees as a non-profit organization. Our goal is set at $1000. 

After that we can start raising money for the bears! 

Thanks for your help and your support! 

Everyone at Girl Glycosylated thanks you for your help and support. Eleanor is so excited to have Bears for Diabuddies up and running. The first batch of Jerry The Bear should have already shipped and bears that are ordered now will be shipping in the spring. Eleanor wants bears provided by Bears for Diabuddies to go to children who are freshly diagnosed.  

The Next Step

First we need to get some of the fundamental legal qualifications taken care of, like filing as a non-profit, and paying for the URLs we registered. Then we need to establish an application process, or some other means of determining which children will receive the bears we donate. Eleanor is operating the organization herself as part of her homeschool learning experience, so she has a lot to think about and many decisions to make. We're glad you're here to watch us grow.

All Our Gear

On the Shelf	November is Diabetes Awareness Month. I'm posting a Photo A Day! The word for November 8th was  Organization!
In the kit!	Here is a little peek at how we organize our stuff and our bling.
Bling Basket!
On the counter	In the cabinet

November is Diabetes Awareness Month: Photo A Day

November is Diabetes Awareness Month.  

I've been commemorating the event by posting a photo a day on Facebook.  I'm also sharing the photos here.  Here's the list, and the first 6 photos.

Past	Check	Snack
Proud	Advocate	Relationship

Past

This was on February 9, 2013. One month before Eleanor was diagnosed with diabetes. It was the last birthday party she ever attended that she didn't have to weigh her piece of birthday cake. It seems like a million years ago. There haven't been too many birthday party invitations since then, actually. Interesting. I'm sure it's not a conspiracy, but I can't help but wonder if more individual families have made a decision not to include her because they weren't sure how to do so.  I'm thinking of writing a blog post on how a child with diabetes can go to birthday parties, even if they're sleep overs.  It takes a little bit of extra work and a commitment  but it can be done.  Don't you think it's worth it?

Snack

Diabetes Awareness Month: Photo A Day: November 3: Snack: Peanut Butter Trail Mix Balls From Dishing It Up Disney Style Ingredients:
1 C Peanut Butter
1 C Honey
3 C Old Fashioned Oats
1/2 C ground flaxseed
1 C mini chocolate chips
1/2 C chopped nuts of your choice
1/2 C dried fruit of your choice

Proud

This is Eleanor doing her own finger stick and Bolus in the car last night. She does so much for herself now.

Advocate

This morning, we were on our way to the orthodontist, and I mentioned that I needed to remember to look up the word for the Photo-A-Day when we got there. A few minutes after we arrived, I looked it up and said, “Oh! ‘advocate.” 

Eleanor asked, “What’s that?”

I answered, “That’s all the kicking and screaming I did to get you put on ratios when the hospital said they don’t *usually* take kids off of fixed carb diets and put them on ratios until after their parents take the “taking charge” class, and advocating is all the kicking and screaming I did to get you put on an insulin pump 3 months after diagnosis when the hospital said that they don’t *usually* put kids on insulin pumps until a year after diagnosis.”

That was when Kenneth said, “Advocating is what Mom was doing when she told the hospital what they could do with their ‘usually’”

Yup.

Relationship

Michael texted us a pic of him with his Dexcom. He and Eleanor definitely have a special relationship because of their shared experience with diabetes. I'm sorry they have it, but glad they have each other, if it's possible to feel both feelings at once.

We keep a baby monitor in Eleanor's loft now, so we can hear her Dexcom alerts. He was up there with her one night recently waiting out a stubborn low to come up, before he finally came to bed. Through the monitor I heard them talking and she said to him, "Sometimes, when you feel low, don't you hate it when…"

And through the monitor I heard his voice murmuring a reply though I could not make out all the words.

My eyes stung with tears, because I could not love him more just for being there to understand her. This is one thing I can never be for her, so I'm glad he can, even though I wish he couldn't.

Halloween Costumes for your Omnipod

Put a Costume on Your Omnipod Insulin Pump!

We've had a lot of fun this month making Halloween costumes for Eleanor's Omnipod, and we wanted to share them with you.  However, one caveat. Costume your pod at your own risk.  I cannot guarantee your safety or the efficacy of your Pod if you put a costume on it.  I can only tell you that we had a lot of fun with these and did not have any trouble, but I'm not responsible for your pod or your safety.  Get an adult's supervision and use caution.

"How can you put a costume on a Pod?" you ask! "It's just so… well… Pod shaped!" I know! I know! I thought the same thing, until I looked at it one day and it occurred to me that if you turned it a certain way, the blocky end looks a lot like Frankenstein's head, and thus Frankenpod was born.

Party with Your Omnipod

Eleanor made a mask at the hospital party

We attended a party for kids with diabetes hosted by the Dallas Children's Medical Center, and Count Podula made his debut there. He had a swarm of fans.  The folks working at the Insulet table seemed especially fond of him. (Gee? I wonder why?) They even photographed him! They were like the Paparazzi. They said to me, "This is going out in a text right now!"

I wondered, "Cool! to who?!" Maybe it was to an agent in Hollywood.  I'm pretty sure it must have been, because I'm pretty sure all those Hollywood agents are always looking for great ideas for new ways to decorate insulin pumps at Halloween and other holidays.  They should be.

Sweet Halloween Fun For Kids with Diabetes

So Frankenpod, was first and Eleanor liked him so much that she cried when he had to come off, which is kind of great, because it means she really really liked him, but kind of horrible, because, she was crying.  So, I was super pumped (no pun intended) to get super creative all over again, and thus Count Podula was born.  You should see the results you get when you Google search for "cute vampire," I'm not talking about Brad Pitt and Tom Cruise.

Pod Cover - download my template! the template

Even before we made Frankenpod and Count Podula we started the Halloween theme with full pod covers made out of Halloween fabric.  I made a pattern, which you can download here cut it out of fabric and covered the whole Pod with Mod Podge.  You could do that with any fabric, any time of year.  Eleanor's Pod sported a fabric Jack O'Lantern costume and some candy corn attire as well.  Finally just this morning, Tutan-POD-un rose from the tomb wrapped in bandages and spooked us.

Patterns to help you make your Own Omnipod Halloween Costumes

I've provided a pattern to download for Count Podula's hair and cape/wings.  I've also included the pattern to make full pod covers on the same pdf file, I used fabric and Mod Podge.  So far we've only tried original Mod Podge, but I recently purchased a bottle of Outdoor Mod Podge. We are curious to know if it will stand up to a bath.  I doubt it, but we'll keep you posted. Or, if you try it first, let us know!  We've made up our minds to apply our decorations right after a bath, and simply re-do them if we need to.

Frankenpod

Frankenpod

Frankenpod held up to bathing, I began by painting the entire pod with acrylic paint.  His mouth and nose are also acrylic paint.  I used a tiny dot of glue from a hot glue gun to attach, his eyes, his "hair," and the bolts (pony beads) to the side of his "neck." I was extremely careful to apply the glue to each item far away from Eleanor and then bring it over to the pod, rather than putting the glue directly onto the pod while she was already wearing it, which would mean getting too close to her skin with the hot glue gun.  I also used as little hot glue as possible, because I had some concern that the heat from the hot glue might compromise the insulin in her pod, so again, do this at your own risk. We didn't have any problems.

Count Podula

Count Podula

Count Podula was probably the trickiest to design, but I've done the hard part for you.  I made his cape out of stiff black felt (ours had glitter on it, because that's what we had on hand.)  I liked that the stiffness made the felt hold it's shape.   You need to tuck his cape between the adhesive and the pod  again, at your own risk.  I used Mod Podge to glue the cape to the back side of the Pod itself, and that worked for me, you could try other glue.  You could use black paper or painted cardboard for the cape too. Use what you have.  If you look at the pattern I've provided for download, you can see there are two little tabs that stick up to tuck behind the pod, that's where you put the glue.  Have fun! I made his hair from vinyl stick-on letters I got from Office Depot.  I just looked for a section large enough and cut out the shape. His hair is part of the pattern. His mouth is just a scrap piece of vinyl lettering.  You could also use black fabric, flexible felt, tissue paper and Mod Podge, paint, or even Sharpie for his hair.   The fangs are felt, but they kept falling off.  I'd use paint if I did it again.  His bow tie is felt and stayed on with hot glue. His eyes are stuck on with hot glue, just like Frank's.

Tutan-Pod-un

Tutan-Pod-un 

This little guy is probably the easiest one.  The only trick to him is that I actually put one layer of bandages on him underneath his eyes.  That's just because I didn't want any of the pod surface to show through the gaps.  Also, you can't really wrap the strips around and around the pod, so, the bandages are cut into short strips and then layed across, and glued down so the wrapped look is all an illusion.  The eyes are glued on, just like before. 

The boys really wanted him to be a Tummy Mummy, but Eleanor thought more of her fans would get to see him if she wore him on her arm.  I'm not sure if she meant fans or all those Hollywood agents who have been lined up outside waiting to see if they could catch a glimpse of the latest Pod costume.

And that's it!  Happy Costuming! Have a safe and Happy Halloween from all of us a Girl Glycosylated! If you put a costume on your pod, don't forget to send us a picture or post it on the Girl Glycosylated Facebook Page!