Saturday, December 14, 2013

Girl Glycosylated Announces Bears For Diabuddies!

Bears For Diabuddies is Up!

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

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.

Saturday, November 9, 2013

All Our Gear

On the Shelf

November is Diabetes Awareness Month.
I'm posting a Photo A Day!
The word for November 8th was 


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

Thursday, November 7, 2013

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.







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?


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


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


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’”



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.

Wednesday, October 30, 2013

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 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.


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! 

Thursday, October 17, 2013

Converting a Mini Backpack Into a Kid's Diabetes Kit

Commercial Kits

We looked at a lot of the commercially available kits out there for kids with diabetes to carry their gear. and we just weren't happy with any of them.  The main objective for us, is to meet Eleanor's needs in homeschool science class at the Heard Museum here in McKinney. Each week they go on a hike.  She needs to be able to carry her gear with her on the trail.  She also needs to be able to test while standing up out on the trail.  There's not a neat little table out there on which to set her meter.  That would be nice, but it just isn't so!

First We Tried The Free Eli Lilly Diabetes Kit 

So, the first couple of weeks back in class she carried everything in the ubiquitous pink camouflage bag that every girl with diabetes gets at the hospital when first diagnosed.  Eli Lilly gives them out to new patients.  We've seen them in dozens of diabetes YouTube videos and we've seen our diabuddies carrying them at JDRF functions.  It works great as long as you're hanging around inside, or at the park where there's a bench or something where you can open out the bag on a flat surface, but if you try to open it while you're standing out on the hiking path, everything will come tumbling out the minute you unzip it.

A Cool Rockin' Orange Diabetes Tool Belt!

Next we bought her a tool bag from Zoro tools.
She liked it because it was orange, her favorite color, and because it was designed to be worn around her waist, so her hands would be free.  She could unzip it, nothing would spill, and she could reach in and still get what she needs while she's testing.  That worked pretty well, but since it was built for a construction worker, it was a little big for a petite 7 year old girl.  Honestly she still loves it, and I think she'll still use it some, but the current favorite is a converted mini Hello Kitty Backpack.  It began life as an ordinary mini backpack I bought from Zulily. I bought it with using it as a diabetes kit in mind.  But I doctored it up a bit.

How We Doctored Up The Backpack

The trouble with a plain ordinary backpack is that it's one single cavernous opening, and everything just falls to the bottom, and it's difficult to find what you need to test quickly, which can be quite a challenge if you're feeling low.  So, we wanted her to have quick access to the items she needed most often.

I added Stretchy Pockets 

First I added a stretchy pocket on the inside of each side panel.  I used two pair of never-been-worn Hello Kitty print panties. We had an entire package that she outgrew before she could wear them when she gained weight quickly after her diagnosis - but you could make side pockets out of any stretchy knit.  I was just trying to reduce, reuse and recycle.  Besides! It was fun that the Hello Kitty print coordinated with the back pack.

Then I added Elastic Loops

Second, on the back panel, (the side that goes against her back when she's wearing it, so the stitching won't show) I sewed a length of elastic with loops in it to hold all the accessories she needs for testing, and anything else that rattles around loose in the bottom of the bag. First I used a quilting ruler and a pencil to draw a perpendicular line across the inside of the pack, to be sure my elastic strip would be level when I was done. Then, I took a piece of ¾ inch elastic and sewed one end of it into the  existing seam of the pack.  I sewed a bit of the elastic flat down onto the back of the pack, to leave a gap between the seam and the test strip bottle, then I held her test strip bottle in place with elastic wrapped around it, and eyeballed the length of the elastic to measure the distance around the test strips. Again, I sewed a few stitches flat across the elastic to leave a gap
between each loop, then I measured a similar loop for her lancing device.  I repeated this process, leaving a small gap between each item, until I had a loop for her test strips, her lancing device, her insulin bottle, her *stingeze, a couple of syringes (which she keeps for emergencies even though she wears a pump), and her control solution.

*Stingeze is just benzocaine in a dauber tube, it's meant for insect bites, but it works great for soothing an occasional "bad" or painful finger stick.

There Was  A Place for Everything

When it was finished, we put alcohol swabs in one side pocket, Smarties in the other, and down in the bottom were, a juice box, a spare pod, tissues, Glucagon, Glucagel, a couple of "Sleek Sleeves"- lycra cuffs she wears if her Omnipod starts coming loose, and on top of all that her PDM for her Omnipod.  It's working out great!  Today was the first day she wore to it science class and I'd say it was a big success on the trail!

She's Ready to Hit The Trail!
Here's what it looks like with all her gear loaded up.
Her PDM, "Pumpie" has eyes, of course!

Thursday, June 20, 2013

100 days! Pump Start

One paper link for each insulin shot left before PumpStart

It's been 100 days since Eleanor was diagnosed with Type 1 diabetes. What better way to celebrate than with Pump Start Up.  We were so excited that we made a paper chain: one link for each shot remaining until the pump, and she tore one off after each insulin injection.  It was a fun tangible way to count down the days and sticks.

I’d heard horror stories about Pump Start up. More than one parent had said it was just as disruptive and world-rocking as diagnosis.  One friend even said, “I wanted to throw the pump out the window those first couple of weeks.”  I remained dubious.  How could it possibly be as bad as diagnosis?  My theory is that most people have a bigger gap between diagnosis and Pump Start up and they’ve simply forgotten just how horrible diagnosis really was (Sounds a lot like childbirth!).  With only 100 days between… trust me… it was NOT as disorienting or overwhelming as diagnosis.  In fact, It’s already brought welcome relief.

We had the distinct advantage of being prepared.  After hearing what folks were telling me, I went out of my way to be sure I knew what I was doing.  In the days since diagnosis, I've read all of the following books:
Eleanor opening up the shipment
from Insulet

Think Like a Pancreas by Gary Scheiner
Pumping Insulin by John Walsh
Type 1 Diabetes In Children, Adolescents and Young Adults by Ragnar Hanas (this book has my favorite definition of LADA ever!)

However, I didn't catch too many Ranger games so far this season. <sigh> I'm sure Nelly Cruz still knows I love him. </sigh>

 For additional preparation, as soon as I heard we had insurance approval,

1. I downloaded the PDF of the Omnipod User Guide, and began reading it from cover to cover. 

2. When the device actually arrived,  I fired it up, made an attempt to  program the settings to match her current MDI basal and bolus doses.  We were able to “fake” bolus without activating a pod, so we did. 

3. We did at least two weeks of “Simul-Bolus” with our Omnipod PDM (with no pod activated) while continuing with MDI.  So, we had lots of practice.  

she's listening to the ticking on Michael's pod as
it delivers a "bolus" of saline.
differing amounts of pink showing in the window is
apparently acceptable.
I guess it worked, we were actually telling the CDE a couple of things at our education session.  (But that’s probably because she’s still getting the hang of the new Omnipod system, since they just switched over at the first of the year - we’ll cut her some slack, while we still take some credit for being prepared).

We spent the weekend with both Michael and her wearing an activated pods full of saline. We did a pod change ourselves on Saturday morning. We did run into one hiccup.  When Eleanor pushed the "start" button, we heard all the clicks, and beeps just the way we were supposed to, and we could see through the window that the cannula was inserted.  By this point between the three of us, this was our 4th saline pod, and we noticed that the pink showing through the window looked different from any practice pod we'd ever done before.  In all the others most of the pink was visible through the window, and in the one we put on Eleanor on Saturday morning only about 1/3 of the pink was showing, so we called Customer Support.  He told us it was probably okay, but since it was full of saline, there wasn't really anyway to tell for sure.  Obviously if it had been a live pod, we'd be able to tell pretty quickly if she was getting insulin or not.  So, we left it as is, and came away from the experience with a little more knowledge, apparently the amount of pink that shows through the window can vary a bit. Now we know.
The saline filled pod… decorated with Niall Horan
and Hello Kitty.  And a bit of face paint on the tape.

We had the fortune of good timing.  (Although, to be honest, it wasn’t good fortune, it was the result of my efforts to get things done when and how I wanted them done.)  Eleanor’s brothers were both at camp all week, so she had us all to herself.  What better way to start up on the pump, than when she had our undivided attention.  That wasn’t part of my plan, but it turned out to be a blessing.  My big goal was to get her going on the pump before we flew out on vacation, and that has worked out as well.  By the time we leave, we should all be comfortable. 

We were all ready with our “bling basket.” She likes to decorate both the Dexcom and the Omnipods as much as possible.

Then the big day was here!  On Tuesday Morning we woke up Eleanor and drove over the Children's Legacy Hospital in Plano.  First they weighed her and took her PDM and Dexcom.

They also did her Hemoglobin A1C - wow.  We must be doing something right, because it was 6.  Woot!!! (For the record, it was 11 at diagnosis) Perhaps our girl is not quite so glycosylated!

Eleanor ate her breakfast at the hospital. She
was ravenous by the time she got to eat it.
Then we went into a room and the CDE quickly checked over the settings.  Then she watched while we deactivated the saline pod, filled the new pod with real life insulin, put it on Eleanor and let her push "start." We had a few tears when she moved down off the table, I assume the cannula shifted position in her arm.  She actually had her arms up over her head when we did the insertion, so I'm sure it pushed further in when she put them down at her sides. (Note: don't do that again) The tears didn't last long.

We stopped on our way out for
a pic next to her favorite color.
And we were off!  We'd packed her breakfast, so we used the PDM to bolus and she sat at the desk in the exam room and ate her breakfast, while we finished up our education.  We went over all the safeguards and instructions.  We passed our quiz with flying colors.  She was happy, we were happy.  We had our marching orders and we were on our way.

There are settings to be adjusted.  She's already had an unacceptable post breakfast spike both days, but we'll get that fixed up in due course.  She had a low before dinner last night and today the CDE made a change to her basal rates to accommodate that.  That's it, we just make lots of notes, do lots of BG tests, and report back to her with our recommendations for changes, and she'll say "yay" or "nay," and that's how we learn to fly on our own.

The "bling basket" makes it fun!
All in all, we are off to a great start! 

I would say that one advantage to starting the pump so quickly after diagnosis is that we are still discombobulated from diagnosis.  I can't in all fairness say that starting the pump has been anything but a breeze.  

And not only that, but Miss Eleanor woke up the next day and decided she was going to take over her waking hours finger pokes and testing.  She loves the PDM, she's named it "Pumpy Purple," although it has a name change to "Pumpy Pink" when she changes skin colors.  We've made a real effort to provide bling for it and the Dexcom as well.  Gotta make that lemonade anywhere you can find it.  Oh happy day!
"Pumpy Purple" is her new BFF. 
Her first real working Pod. Yay!!

Thursday, June 6, 2013

Little Ticking Time Bombs - LADA, Addison's, Vitamin D, and Trial Net

The boys and I had blood drawn for TrialNet last week.  We're supposed to hear something back from them in 4 to 6 weeks.  I'm not the least bit concerned about myself.  I think it's pretty obvious that the genes for the T1D came from Michael's side, although I've obviously contributed my own share of autoimmune woes, with my arthritis.

I'm trying to decide how I even feel about the results of the TrialNet autoantibodies tests.  Of course the real bottom line is that we participated in the test because it might help uncover means to prevention or a cure.  It's nice that we also get personal information from it, but that was not my motivation.  Well… maybe a little.

I'm worried about the boys' results.  I don't want them to face this, and yet, there's this funny part of me that doesn't want to admit that I don't want them to have type 1, because to admit that would be to admit that there's "something wrong" with Eleanor.  I know it's all complicated and twisted up with my feelings of fairness.  It's the same way I feel when someone sees our diabetes management and says, "Oh my gosh! I could never do that!"

Yes you could.  Yes. You. Could.  And you would.  You just don't have to, and it's okay to be glad you don't have to, but maybe you should say that instead.    "Oh my gosh I'm so glad it's you and not me!" But that sounds selfish so you don't want to say it, but that's what you really mean, isn't it?  I don't blame you.

Eleanor's First Birthday at the Hospital
My husband was diagnosed with diabetes 14 years ago.  They said he was Type 2, because he was 34 years old at the time.  But they admitted he was one of the "weird ones."  7 years later he was also diagnosed with Addison's Disease.  Eleanor was a year old, she celebrated her first birthday in the hospital lobby on his floor.  The boys were 7 and 3.  He was in the hospital 10 days, and I was losing my mind because they could not figure out what was wrong with him.  I had actually come up with the Addison's diagnosis the very first night he checked himself into the ER.  I based my conclusion on, among other things, his low sodium level and that in recent years he had developed a nickel sized cafe au lait mark on his face up near is hairline on his cheek bone.  I can't remember every little detail I read, but when I read the symptoms, they all fit.  (I actually diagnosed his diabetes too, 14 years ago.  I started reading up on symptoms and I said, "You have diabetes!" before he ever went to the doctor - I wish I had some other thing to feel smug and vindicated about!)

It took me 10 days to work up the frustration level to tell the hospitalist how he needed to be tested.  I remember that day.  I must have left the kids with my dad or someone, because it was just Michael and me in his room when the hospitalist came in.  That was before the days of mobile devices,  so I had pages and pages of articles and research studies printed out from my research.

I was driven to the breaking point with spinning our wheels in the hospital and I told the hospitalist.  "These are the tests we need to run."  I pointed angrily at my sheaf of papers.  I had a catch in my voice and my adrenaline was pumping like crazy because I was sure I was in for a fight.
Eleanor, well protected from the Sun in Grand Cayman
I think he has Addison's Disease, and this is why… " I carefully made my case, "We need to get an endocrinologist in here."

When she said, "That all sounds very reasonable," and wrote the order, I didn't know what to do with my fight.  I felt like a deflated balloon expelling hot air. When the endocrinologist showed up he was a bit smug.  He said, "I'm kind of proud!  This is my first time to diagnose Addison's Disease."

To which my husband replied by pointing my way, "She's the one who diagnosed it." The endocrinologist reluctantly acknowledged that was the case.

The next part of the story is Eleanor's story.  She was diagnosed with Type 1 on March 10, 2013.

And here's what pisses me off.  AFTER she was diagnosed with T1D, I started really reading and learning, and getting myself educated, and I learned that the combination of Addison's Disease and Type 1 Diabetes is probably a form of Polyendocrine Syndrome, and that means that our kids have a 1 in 2 chance of developing Type 1 Diabetes.  That's really high.  And I didn't know it.  According to The Joslin Diabetes Center:

  • About 1 in 7 people with type 1 has a condition known as type 2 polyglandular autoimmune syndrome. In addition to type 1 diabetes, these people have thyroid disease, malfunctioning adrenal glands and sometimes other immune disorders. For those with this syndrome, the child's risk of having the syndrome, including type 1 diabetes, is 1 in 2, according to the American Diabetes Association (ADA).

No one told me my kids were sitting here like ticking time bombs.  I didn't know.

We always took great care to avoid sunburn
Unlike my diagnosis of Michael, I did not suspect diabetes when I took Eleanor in to urgent care that Sunday afternoon.  In fact, I even told the doctor that I was worried it was leukemia.  At least I made it clear that I was VERY concerned.  I knew full well this was not just  a bug.  I still have the text messages saved on my phone that I was sending to my mommy friends that day.  I argued with them that she wasn't acting like she was because she was still getting over the virus she'd had the weekend before.  I just knew. Funny how that intuition works so well when it comes to our babies.  I am thankful for that intuition.

But why didn't someone tell me?

this is the only kind of swimsuit
my kids have ever worn
And you know what else?  No one told me that vitamin D deficiency can increase the risk of developing Type 1.  Ironically, I was so anxious about sunburn and skin cancer that I exercised more than typical care in keeping my kids out of the sun.  They all wear wide brimmed hats.  They all wear long sleeved SPF factor rashguard style swimsuits, because I had a third degree sunburn in the mountains as a two year old, so I was more cautious about sun exposure than most of the mothers I know.  They'd get slathered with sunscreen every single time we were out in it.  Was my concern excessive?  Did my fear of the sun contribute to Eleanor's developing T1D?  Maybe.

Just a couple of weeks ago, my rheumatologist told me my own vitamin D levels were deficient and she put me on a prescription strength supplement.  There's a pretty good chance that Eleanor was also deficient.  Michael was diagnosed with his diabetes about 2 years after moving to the Pacific Northwest where there is a lot less sunlight.  The closer to the equator you get, the less common are diagnoses of Type 1 diabetes.  More cases are diagnosed in the winter months than in the spring and summer. Hmmmm… interesting.

They are well programed.  They always ask for sunscreen.
From the Mayo Clinic:Geography. The incidence of type 1 diabetes tends to increase as you travel away from the equator. People living in Finland and Sardinia have the highest incidence of type 1 diabetes — about two to three times higher than rates in the United States and 400 times that of people living in Venezuela.

and now she is excited to get
her first Omnipod shipment
If I had known that our kids had a 1 in 2 chance of developing type 1 diabetes, I would have watched more closely, and I would have read more about it, but I didn't know.  If I had read more about it, I might have been a little more careful to get them some sun exposure each day before we put on the sunscreen, but I didn't know.  If I had known that having Michael for a dad meant they were eligible to participate in TrialNet, we would have been doing that too.  But I didn't know.

I've read that patients who present at diagnosis with DKA (diabetic ketoacidosis) have a higher rate of complications than patients who are not in DKA at diagnosis.  Is that cause, effect or correlation?  I don't know,  Eleanor was in moderate DKA at diagnosis.  I can't help but wonder if we'd known her risk of T1D was so high we might have caught it sooner and she might NOT have presented in DKA, in which case, maybe her risk of complications wouldn't now be higher.  But I didn't know.

Now the boys are taking Vitamin D supplements,  I'm trying to make sure they all get a little sun, but not too much, and we are waiting on the results of those TrialNet tests. It's already too late for Eleanor.

Thursday, May 30, 2013

A few quick things…

Eleanor: Channeling Taylor Swift

Thank you to Tom Karlya at Diabetes Dad for saying such nice things about our YouTube Channel, we promise to work on some new videos very soon to please our fan base.


We got a wonderful call this morning! Eleanor has been approved by our insurance for an Omnipod.  It should be on our front porch on Tuesday.  After that it's just a matter of attending some training at the hospital and then we're off and running.  This is a tremendous relief, as I was truly bracing myself for a denial.  The rep from insulet had as much as told me we were destined for denial.  She was half choked up too with the call, because she says she really does not enjoy calling up parents and telling them they've been denied.  So everyone had a good day today.


The boys and I went to Quest Diagnostics on Wednesday after Art Class.  (Actually Eleanor went too, we couldn't just leave her) but the three of us had blood drawn for TrialNet.  Caught a few moments of tawdry day time TV as long as we were there. :-/


Eleanor and her brothers are scheduled to appear on Good Morning Texas in the morning at 9:00 am on WFAA channel 8.  So, if you live locally, tune in.  If you are friends from afar, we'll link you up as soon as we can.

Bling on the Dexcom

We put some bling on Eleanor's Dexcom transmitter/sensor this time, but things are not going so great.  I also may have not done the insertion exactly right.  In either case, the receiver has been complaining on and off all afternoon.  Seems to have recovered and perked up for the moment, we'll be keeping an eye on it.


This has absolutely nothing to do with diabetes, but I'm reading aloud The Girl Who Fell Beneath Fairyland and Lead the Revels There to the kids right now, and it's an excellent work of fiction.  I highly recommend it!  It's the sequel to The Girl Who Circumnavigated Fairy Land in a Ship of Her Own Making, but the new one doesn't seem to have been added to the author's website yet, so I can only link you up to the first, which we also read, and which was also extraordinary.

Eleanor is beginning to get going with her non-profit org to raise money for Jerry The Bear.  We were very glad to learn that the application window for the Davidson Young Scholar Ambassador Program is June 1 through September 30, so we couldn't have timed it better, really. The purpose of the program is to foster learning and civic engagement through community service, volunteerism and leadership in highly motivated, mature and socially conscious Young Scholars.  She and I have already begun to fill in her essay questions on the application for the program.  If she is accepted, she will have access to two year training program.  It would be a tremendous learning experience for her.  She would attend online seminars covering such topics as Self Advocacy; Website Design & Functionality; Leadership and Ethics;  Fundraising; etc.  Fingers crossed that they have a spot for her!

Sunday, May 26, 2013

Introducing The Girl Glycosylated YouTube Channel!

Well, there's not much else to say!  We've got a new Girl Glycosylated YouTube Channel, and our first video is up.  You can expect more where that came from!

This is how to make Peanut Butter Trail Mix Balls from Dishing It Up Disney Style.

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

So enjoy that! And watch for more fun on the channel. We'll keep you posted. 

Thursday, May 23, 2013

Third Times The Charm! Our Third Dexcom Sensor Insert Success

Today we did Eleanor's third Dexcom sensor insert.  It went MUCH better today, pretty smooth.  Here's what I did differently that made it better:

1. I didn't use a Tegaderm patch to hold the Lidocaine cream in place.  Last week, getting the
Tegaderm off her arm, with the adhesive pulling on all those little hairs was almost worse than the insertion.  Instead, I put the cream on a "nonstick pad" and then wrapped sense-wrap self adherent around her arm.  That's the red stuff in the photo.  It sticks to itself, but not to her.

2. I had a bottle of Uni-solve medical adhesive remover, and I soaked the adhesive on the old sensor in that before I tried peeling it off.  I kept using more as I peeled it off and that too went much better.  No tiny hairs ripped out of her arm.  She's way too little for waxing!

3. I remembered to pinch up the skin where I was pushing the sensor in.

So, yeah, practice makes perfect and we had no tears at all today.  Hooray!

And here she is playing on the playground earlier this week, Dexcom is on the Hello Kitty Lanyard around her neck.