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.

In our house we call this life support...

"I feel low."  These three little words stop me in my tracks no matter what I'm doing.  It is my drop everything and go into automatic pilot phrase.

Find the blood sugar meter, make sure her fingers are clean, check, treat with fast acting sugar, and repeat. Every 15 minutes until we're happy with the resulting number.  But, above all else, don't look scared.  Even if the number is alarmingly low, don't look scared.  Because if I look scared so will she.  So I smile and check and recheck while my heart is doing a little rat-a-tat-tat beat.  And then everything is fine.  For now.

This is why our home looks like a mix between a pharmacy and a candy store. The insulin brings it down, the sugar brings it up.  And so on, and so on, and so on.... The trick is to find the balance between the two.  Challenge accepted!!!  

Sugar and Spice.....

Saying goodbye to sugar and spice and everything nice is bittersweet.  It's tough watching your little girl turn into a young woman.  Just over two years ago we moved into our Bolton home and doused Caitlin's room with pink and lavender and all things frilly.  She asked me several weeks ago if we could "ungirly" her room.  What?  The shabby chic bedding & curtains, the lavender walls, the pink flokati rug?  They all need to go?

Yes, says she!  T1D adds a whole new layer of complexity to these changes. Growth and puberty cause drastic changes in insulin needs and lead to wild fluctuations in blood sugars. And good luck trying to figure out if mood swings are due to hypo or hyperglycemia or if your child is simply acting like a pre-teen.   Imagine hearing "did you check your blood sugar?" every time you're cranky, moody, sad, or giddy?

So the American Girl dolls have been packed away, the Judy Moody books donated, and the lavender walls will soon give way to new color. And we all hang on for this bumpy ride we call life with T1D.

Pump Sightings in the Wild

Until you're knee deep in it T1D isn't even on your radar. You're oblivious to what it entails. How much planning and preparation every little trip takes. Whether it be to the mall or the other side of the country. I'm getting more lackadaisical about it and it shows. 

Caitlin and I recently ventured out to the movies. A quick 25 minute drive which turned into 2 round-trips, during rush hour, because someone (that would be me), forgot to throw a blood sugar meter in her purse.  We still made the movie but it cut into our precious pre-movie shopping time.  We went through the stages of should we guess, eat low carb, grab a new meter and strips at target ($$$$$), etc..  But we knew the only answer was to run back home for it.  

Spotting someone else with T1D out in the general population is not something I would have expected we would get so excited about. Seeing the little peek of tubing at someone's waistband, or a pump site on the back of someone's arm. It sparks a whole conversation about how long since diagnosis, what pump you use, and makes you feel connected to this perfect stranger in an instant.  

While out this weekend celebrating "The Diabirthday" Caitlin spotted a woman bolusing for desert on the front steps of Pastiche in Providence. That one little spotting offered her a sense of normalcy and solidarity in her journey that she sometimes feels alone on.  So thank you anonymous woman in Providence with the Animas Ping.  Thank you for showing Caitlin that she should wear her pump loud and proud and never feel the need to hide who and what she is.

Two Years and Counting

It's here.  That bittersweet date that I will never, in my whole life, forget.  The date that could have just as easily been her last but was, instead, her first. The words were there. On the tip of my tongue, tucked in the back of my mind for days before diagnosis. I knew deep down that it was coming but I couldn't wrap my head around it enough to accept it.  Just another day or two. It's just a virus. She's getting better.  If I don't put a name to it then it isn't real.

But it was. And then there was diabetes.

It's a funny day to celebrate. Most in our circle call it a diaversary. Caitlin calls it her diabirthday. She can call it whatever she wants.  It's her burden to carry. We're just along for the ride.

Two years.

5,840 finger sticks
1,825 injections
180 pump site changes
75 cgm site changes
12 missed school days for illness and appointments
15 trips to her endocrinologist's office

The burden is hers but she carries it with such grace that it appears effortless.  So today we celebrate Caitlin.  We celebrate her bravery.  Her perseverance. Her strength.  And we celebrate with cake because yes, diabetics can eat cake 💖