Forty Days of Diabetes - Day 4

Why JDRF?

I'd never heard of JDRF before D Day. I'd probably seen ads for it, or maybe their sneaker logo fundraisers at Walgreens or Marshall's, but never paid it much attention. It didn't pertain to me, I was busy thinking about other things and Diabetes was something that happened to other people.  

And then there was D and we were feeling vulnerable and overwhelmed and along came a package with a JDRF backpack full of books, T1D literature and Lenny the Lion. An actual stuffed lion with patches on his body where Caitlin could practice giving insulin shots. Shortly after that there were phone calls and emails from volunteers reaching out to us.  Other D parents who knew exactly what we were going through. It seemed a natural fit to fundraise for them once life started to return to normal, or our new normal.

• JDRF is the leading global organization funding T1D research with more than 100 U.S. locations and 6 international affiliates.
• Since inception, JDRF has contributed over $1.9B to T1D research and including $98M in 2014.
• JDRF is currently funding 45 human clinical trials of potential T1D therapies.
• Approximately 80% of JDRF expenditures directly support T1D research and research-related education

JDRF’s highest priority remains funding research to deliver a cure for T1D and its complications. At the same time, JDRF is also focused on developing better treatments that will transform the way people with T1D treat the disease today, in order to help them live healthier lives now and in the future. Finally, JDRF also seeks to prevent T1D, to keep future generations from developing the disease.

You can help create a world without Type 1 Diabetes by making a tax deductible donation to JDRF. Click below to donate to our walk team or to join our walk team and fundraise on our behalf. Thank you!!!

Caitlin's Ketone Crushers Team Page 

Forty Days of Diabetes - Day 3

Oh the things people say.....

I've heard most of these more than once. I took Caitlin for a haircut several weeks after diagnosis. The stylist saw us checking her blood sugar before she climbed into the chair and said, "aww, my grammy had diabetes and they cut her legs off". I had no words.

The one that makes me scratch my head the most is when I'm told, "I could never give my child a needle".  The sarcastic ass in me wants to ask if they'd choose to let their child die but I just smile and nod.  And then pray that they never have to join our club. 

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Forty Days of Diabetes - Day 2

Test Strips and Lancets and Snacks, oh my..........

Back to school shopping looks a little different in our house. It includes the usual stuff like notebooks, pencils and graphing calculators (pink, of course). But, unfortunately, T1D comes with a lot of baggage.

We have a new school nurse this year. About half way through the summer I received a text from Caitlin's usual nurse informing me that she'd taken a position in another school in the district. Instant stress! We've been working with Darlene for two years and everything has gone as smoothly as we could hope for. She's supportive and very understanding of the complexities of T1D. Not all families are as lucky as we are with the support we receive from the Nashoba school district.  

Caitlin and I met with our new nurse yesterday and unloaded our supplies and the first words out of her mouth were, "oh my, I'm going to need a bigger bin". Unless you're up close and personal with T1D you have no way of knowing how much gear comes along with it.  

A typical list looks something like this:

• blood sugar meter and test strips
• lancing device and lancets
• ketone meter and test strips
• alcohol swabs
• syringes
• insulin
• pump sites
• fast acting sugar (candy, juice, glucose tabs)
• Glucagon

These aren't things we keep just in the nurses office at school. These are things we carry with us every single day and everywhere we go.  

And the new school nurse?  I have a feeling we're going to have a very good year.

Forty Days of Diabetes - Day 1

Our third JDRF walk is sneaking up on us.  This means that T1D has been in our lives for almost three years.  It's becoming more difficult to remember a time when it wasn't there.  Last year I kicked off our fundraising campaign with Forty Days of Diabetes on Facebook to raise awareness not only about Type 1 Diabetes but also about how much it affects a whole family living with it.  

So it seemed so appropriate to talk about Caitlin's nighttime low last night.  Things like this don't happen very often but they're not so uncommon either.  We walk the fine line every day of trying to keep her as close to 100 as possible without inducing hypoglycemic events.  It's not easy!!

Forty Days of Diabetes - Day 1

Tap, tap, tap.... I peek at my phone, it's 2:30am. She sneaks the door open, "I'm 64". Her voice is small and sad. She's too tired to eat, just wants to sleep. I walk her back to her room and lay with her while she eats Skittles. Even a child doesn't want to eat Skittles in the middle of the night. I worry about cavities, I worry about the "what-if's", what if she hadn't woken up, what if she'd been at a sleepover, what will happen when she goes to college? I worry....

And then we check and recheck until we see a happy number and everyone goes back to bed. Just a regular night in a house where T1D lives.

The Highs and Lows of 2014....

One more year survived as a D family! Ba-bam, take that Diabetes!!!  

We weathered the year with more highs than lows.  And when I say that I mean it in both ways.  With growth hormones raging and puberty lurking around the corner it was a constant struggle to keep her in range.  But emotionally it was far more good than bad:)

Her A1C (a test which shows what her average blood sugar has been for the previous 3 months) fluctuated wildly throughout the year.  I was dreading her end of year appointment but we were all equally surprised to learn that her A1C had dropped 0.3 points.  

As much as I want to give D a big fat F.U., I can't help but reflect on the good things it brought to us in 2014:

In February we were lucky enough to participate in our second Riding on Insulin event.  Riding on Insulin was founded by Sean Busby, a professional snowboarder with Type 1 Diabetes.  Their mission is to empower those living with T1D to challenge the illness and learn to ski, snowboard, ride BMX, etc. in a safe environment.  

In February and July Caitlin spent time at her much loved Clara Barton Camp.  Definitely THE happiest place on earth for a child with T1D. Sorry Mickey!!  While there in July she was chosen to participate in the groundbreaking Bionic Pancreas camp study.  She spent 5 days hooked up to an insulin pump, glucagon pump, and continuous glucose monitor all driven by an iPhone using a mathematical algorithm to determine appropriate dosing response.  It was cumbersome but she was happy to have been a part of it in the end. 

We fundraised through most of October for our second JDRF Walk to Cure Diabetes.  Caitlin raised $3,954 with your help and support!

Caitlin ran cross country for the first time in 2014.  With all the exercise and training came a lot of lows, lows, lows...  As with every new experience with T1D, we made adjustments and tried new things and she kicked D's butt in the end.  She made it to every meet and missed just a practice or two, no more than any other teammate not dealing with a 24/7 disease.

Keeping her healthy was sometimes a struggle in 2014.  We battled colds, stomach issues, and just plain crappy days where D did not play fair.  The simplest virus for a non-T1D can wreak havoc on a immunocompromised person. But in the end we won.  We washed out those ketones, smashed those high blood sugars with insulin and did what we had to do to get her back on her feet.  With about 12 missed school days in all of 2014 she still managed to maintain straight A's (and one lonely B+). 

And now onward to 2015.  Bring on the challenges of raising a pre-teen with T1D!  I'm ready for this.  I will take the bad with the good because I know the good will prevail.  We look forward to seeing old friends at Riding on Insulin, Clara Barton Camp, and our JDRF walk.  In July you'll find us at Disney's Coronado Springs Resort for our first Children with Diabetes Friends for Life Conference.  This conference brings together an international group of clinicians, researchers, physicians, adults, children, and families with diabetes to learn the most current information in diabetes care.  With a whole lot of fun mixed in!!

Happy New Year to all!!  May all your goals and dreams for 2015 be within reach.  Get out there and make them happen:)

Today I give thanks...

...for so many wonderful things.

1.  Frederick Banting:  A Canadian medical scientist, doctor, painter, and Nobel Laureate noted as the first person that used insulin on humans.

2.  Carolyn O'Donnell:  Our pediatrician who took me seriously and recognized the signs of DKA immediately.  I am thankful to her every single day.

4.  UMass Pediatric Endocrinology:  Caitlin's care team.  I'm so thankful to have a great team of doctors, clinical diabetes educators, nutritionists, and support staff just 20 minutes away.

3.  BCBS:  Our health plan which makes it possible for us to afford the thousands of dollars of medications and supplies we use each year to keep Caitlin healthy.

4.  Clara Barton Camp:  Caitlin's diabetes camp where she can spend three blissful weeks in the summer being just like everyone else.

5.  Dave:  A great husband and father who didn't hesitate for a second to jump right in and learn everything he could about caring for Caitlin.  He's 100% involved.

6.  My friends and family who help in every way they can.  From subsidizing Caitlin's summer camp fund (thank you Mom & Cheri), to hosting fundraisers for JDRF at her shop (thank you Wendi), and for allowing me to shake them down every year for our JDRF walk to cure diabetes (thank you everyone).

We didn't know things were easier back then. We didn't know our lives would change drastically in two years.  But if I said it's all been a nightmare  that would be a lie.  Diabetes has brought some wonderful people into our lives and provided some amazing experiences for Caitlin.  I asked her once if she'd take a cure today if they had it and she said no.  She said it's a part of who she is and and she'd be afraid she couldn't go to Clara Barton Camp again.  

We have our rough days.  It's not easy all of the time.  But tell me, does this girl look like she's suffering or feeling sorry for herself?  I think not:)  Happy Thanksgiving everyone.  Count your blessings and be thankful for all you have every single day.

Much Love,
Michelle

When I ask you how you are, please answer me in numbers....

This is how conversations go in my house. 

"how are you doing?"

"I'm low, I'm high, I'm 132, 279, too high to read...."

So many of our conversations revolve around numbers, or food, or plans on how to handle an afternoon run, or a sleepover, or if her number is good enough to go to bed with.

"did you bolus for that?"

"did you eat enough carbs?"

"did you wash your hands before you checked?"

"did you pack enough supplies?"

"is your pump charged?"

It's a wonder she's able to focus on anything else.  Yet she does.  I'm pretty sure it's all background noise to her and she worries about these things far less than we do.  Which is perfectly fine for me.  Think back to when you were 9, 10, 11.  Can you even begin to imagine having to be responsible for something so fragile and important?  What did we have to worry about?  What was on TV?  What we were going to wear to school tomorrow?  Whether or not we'd get what we wanted for Christmas?

It boggles my mind how she handles it all.  Usually seamlessly but once in a while it all comes crashing down.  The text came in while driving home from the grocery store this morning.  She slept at a friend's house and I sent two extra pump sites just in case.  Pump site 1 & 2 failed last night and pump site 3 fell off during the night.  

The results?  Blood sugar too high to read, large ketones, and one very sick and disappointed little girl who had to cut her sleepover short to take care of very grown up matters.Two miserable hours later, half a dozen finger sticks, and water, water, and more water and she's finally starting to bounce back.  By this afternoon she'll be good as new and won't give this another thought.  For me, just one more reason to cringe the next time she gets a sleepover invite.  Will I let her go?  Absolutely!  She has diabetes but I will not let diabetes have her.