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 💖

Judgement Day

Judgement day comes every three months in our house. One tiny little blood droplet from Caitlin's finger will tell a three month tale of how well her pancreas (me, her, Dave, her T-Slim pump) have controlled her blood sugars for the last three months. The A1C test is the true measure of how our efforts from the previous three months have paid off. 

Hemoglobin A1C (also known as HbA1c) is measured in people with diabetes to provide an ndex of average blood glucose for the previous three to four months.  The normal A1C range for a non-diabetic person is 4-6%. For people with diabetes, the lower the A1C value, the lower the risk of developing long term complications such as eye, heart, and kidney disease.  The American Diabetes Association recommends that children with T1D strive to achieve an A1C below 7.5%. 

One would think it would be such a simple task.  Count your carbs, do the math, pump some insulin and Bam!  Perfect blood sugars!  If only.....  The variables and hurdles to achieving in-range and consistent blood sugars are endless.  Hormones, growth spurts, illness, stress, activity, glycemic index of foods eaten, etc, etc....  

Two years ago, at diagnosis, Caitlin had an A1C of over 13%. We're still hovering around 8. We're almost there but the jump from 8 to below 7.5 feels insurmountable at times.  Achieving tight control while safely avoiding lows is a fine line to walk. 

So we keep trying, working, and tweaking until we get things right.  Because we love her eyes, and we love her toes, and we love her kidneys, and we love her heart ❤️

stuff

So I've been trying to figure out what to write for a while now. I figured that I would just tell you about me. So my name is Caitlin. And this is all about me.(this is from a youtube tag)

vital stats
My name is Caitlin.
My nickname is Cate.
My birthday is June 10th.
I was born in a hospital.
I'm a gemini.
I'm a student

appearance
I have blue/yellow/green eyes.
I have freckles.
I have dirty blonde/dark blue colored hair thats just longer than shoulder length. 
I'm about 5 feet tall. 
I have my ears pierced.

firsts
My first best friend was my brother i think. lol
My first award was my preschool graduation award.
My first sport I played was tumbling(gymnastics for little kids).
My first holiday was halloween.
My first concert was kids bop.

favorites
My favorite movie is the fault in our stars.
My favorite tv show is modern family.
My favorite color is red.
My favorite song is try hard by 5sos.
My favorite restaurant is bertuccis.
My favorite store is Aeropostale.
My favorite book is paper towns.
My favorite magazine is seventeen magazine.
My favorite shoes are my vans.

currently...
feeling happy.
single.
eating nothing.
listening to 5sos.
thinking about this blog post.
watching the laptop screen.
wearing pjs.

in the future...
want children-yes
want to get married-yes
career in mind-musician or author
want to live in california

do you believe in...
miracles-i don't know
love at first sight-yes
ghosts-no
aliens-no
soul mates-yes
heaven- maybe(definitely Something with a capital S)
h-e-double-hockey-sticks- nah
kissing on the first date-idk I'm 11
myself-yes                          
                                                                                           btw this is 5sos
Bye for now                                                                       (they're a band)
xx-caitlin

Hope For a Cure with JDRF

Just six days remain until our second Walk For a Cure with JDRF.  We jumped into fundraising last year with the hopes of raising just a few hundred dollars.  We set our fundraising goal at $1,000 thinking we were reaching for the stars.  We blew that goal away and raised almost $4,200 for diabetes research in just a few weeks!  Caitlin was the top individual fundraiser in Central Mass and was awarded the Golden Sneaker award for fundraising excellence.  Not bad for our first year out:)

JDRF is the leading global organization funding type 1 diabetes (T1D) research.  JDRF's goal is to progressively remove the impact of T1D from people's lives until we achieve a world without T1D.  JDRF collaborates with a wide spectrum of partners and is the only organization with the scientific resources, regulatory influence, and a working plan to better treat, prevent, and eventually cure T1D.

As the largest charitable supporter of T1D research, JDRF is currently sponsoring $568 million in scientific research in 17 countries.  In 2012 alone, JDRF provided more than $110 million to T1D research. 

Our successful fundraising would not be possible without people like you: our friends, family, and co-workers who have been so supportive through this crazy journey we've embarked upon.  Your kind words, asking how Caitlin is doing, asking how we are doing, have more of an impact than you can imagine.   

We walk on Sunday to help raise money and awareness for:

• the 3,000,000 people living with T1D in the US
• the 15,000 children diagnosed with T1D in the US each year
• the 15,000 adults diagnosed with T1D in the  US each year

We walk on Sunday for Caitlin.

Donate Now

Our Bionic Pancreas Summer

I said:

A person with Type 1 Diabetes makes hundreds of decisions a day about their diabetes care. Decision that will directly impact how the rest of their day will go, what their A1C will look like at their next endo visit, and whether or not they'll end up with long term complications from their diabetes.  For five days this July at our very own Clara Barton Camp Caitlin didn't have to make any of those decisions. 288 times a day, her Bionic Pancreas did it for her.  

I first learned of The Bionic Pancreas project when Ed Damiano and his team trialed it at CBC last summer.  I was a immediately intrigued. Caitlin and I discussed it and she was eager to try it if the opportunity ever presented itself. Shortly after, we found out they'd be doing the same trial in 2014 on campers aged 6-11. She expressed interest right away and then went back and forth through the winter on whether or not it would take away from her camp experience.

When we were contacted in the Spring she was ready to commit. The screening went smoothly and we were placed on a backup list. The program had quickly filled up with families from all over the country. People were traveling from hundreds, even thousands, of miles away to our little camp to participate in this study.  Caitlin was ready to step in if another child was unable or unwilling to participate. We were ecstatic to learn shortly before her session that she was in, she was going bionic for five days!

We arrived at camp early our first day and met with the Bionic Pancreas team and the other families participating. It was a charged environment!  Two groups of campers would be participating. The first group would wear the Bionic Pancreas for five days and revert to usual care for the rest of their camp session.  The second group would begin with usual care and switch to Bionic Pancreas for the remainder of camp. Caitlin was chosen for group 1 and the preparations began.  She was given two infusion sets and two T-Slim pumps, one for insulin and one for glucagon. A Dexcom sensor was popped in and she was ready to go.  Her Pancreas, an iPhone 4s with a Dexcom G4 receiver mounted to the back, hung around her waist in a spibelt.  It was a lot of gear for a skinny little girl to carry!

The countdown began. 10, 9, 8.....  Go Bionic!!!  And it was all out of our hands. Beds were made up, cabins organized, kisses and hugs exchanged. And I left my little girl in the hands of a roomful of doctors and scientists staring at data on screens and with gadgets hanging around her waist responsible for her health and well-being for the next five days.

Pickup could not come soon enough. Twelve days with no idea of how it was going was tough to take.  In the end she didn't love the experience but is happy she did it.  It got to be a bit much wearing all the gear and responding to the alarms from two pumps and a CGM. She missed out on some camp activities for the five days she wore it which she decided was the worst part of the study. The results speak for themselves. With Bionic Pancreas her potential A1C was lowered from the mid-eights to the mid-sixes. They still have a ways to go with integration but they have a solid plan in place and with the proper funding hope to have a product to market by 2017. Just in time for Ed Damiano's T1D son to go off to college.  Now that's what I call commitment to a cause!

She said:

I’ve had diabetes for almost two years. It probably seems like a short time, but I can barely remember life without diabetes. I’ve been coming to CBC for two years. This summer I took part in The Bionic Pancreas (biopanci) Study. The biopanci didn't make it seem like I didn't have diabetes, but it definitely made it seem like I had less diabetes. I still had to carb count, and check my blood sugar, but that’s the simple stuff.

All you had to do to bolus was… I would wait for the biopanci nurse to check my blood sugar. calibrate my Dexcom, carb count, and see if how many carbs I’m having is a usual size meal for me.  The way this works is that you teach biopanci what a usual size meal is for you then you tell it if you're having a usual size meal or something bigger or smaller. 

This machine is magic — even though Ed Domiano, the creator of the biopanci, told us personally that he doesn’t believe in magic — it is. I never had one high blood sugar, and only two low blood sugars that were 70 or 80. The biopanci remembers if you had more or less carbs yesterday, and if you had a higher amount of carbs in the range of carbs in usual meal, it will give you more insulin for the next day. Same with less carbs. 

I had a couple times where I really didn’t like the biopanci, only because all of the stuff I had to carry around. But don’t worry, when they make the final product, it will be one machine, not much bigger than a normal pump. Also, you can only disconnect from the biopanci for a half hour at a time, so I missed some of my swim time, and water day time. Lastly, since it was a study, the pumps were beeping a lot.

Overall, there were things I did and didn’t like about biopanci but I know the things I didn't like will be changed. I would definitely get the biopanci once it’s got all the kinks worked out, and in one machine. This was my experience with the biopanci. It was a good experience. 

And Then There Was D

My daughter looks like any other preteen girl. Straddling that space between daddy’s-little-girl and “Can I borrow the car please”? Silly, sweet, and sassy one minute…mooning over boy-bands the next.

Look a little closer. You’ll see a gadget at her waist that, at first glance, resembles a pager from the eighties. You’ll see marks on her belly, arms, and back from multiple injections and pump site changes. You’ll see spots on her fingertips from the thousands of times she’s checked her blood sugar over the last two years. Watch her as she plans for every piece of food she puts in her mouth. Every meal and snack requires carb counts, google searches, and a kitchen scale. She never goes anywhere without her gear. A blood sugar meter, fast acting sugar to counteract hypoglycemia, extra pump sites, and the dreaded Glucagon. Glucagon is a life-saving injectable to be used only in extreme cases when a diabetic is so low they are seizing or unable to take fast acting sugar by mouth to reverse a severe low.

Look at her again and all you see is a sweet little girl. She takes it all in stride and doesn’t let it slow her down or stop her for one second.

Caitlin was diagnosed with Type 1 Diabetes on October 5, 2012 at age 9. It’s hard for me to put my finger on when I think it all started. She’d been a little moody, tired, complaining of headaches and stomach pains here and there. By the end of September she didn’t want to go to dance class anymore and spent most of her free time laying on the couch. I remember the night before diagnosis vividly. I was following her up the stairs to bed and she looked like she was struggling to take every step. I was getting exasperated with her slowness and asked her what her problem was. She answered in such a pathetic voice that it broke my heart. “I don’t know.”

days before diagnosis

When her school nurse called me at work the next day I was not surprised. I was ready for the words when the pediatrician said them but it was still so very shocking, She said “You don’t need to go by ambulance but you need to go home and pack enough things for a few days and report to the emergency room. We’ll let them know you’re coming.”

We were whisked into the ER where she was poked and prodded for what seemed like forever. It was nothing short of miraculous to watch her begin to come back to life as the insulin infusion started working its magic. We later learned that she was in full blown DKA (diabetic ketoacidosis) upon admittance, a life threatening condition. Her blood sugar was almost 1,000 and we could have lost her had we waited even one more day.

in the PICU and still smiling

We spent the next three days getting a crash course in Diabetes 101. Taking her home was as scary as the trip home with our first newborn baby. Our lifelong journey as a Type 1 Diabetes family was just beginning.  And then there was D.......