Shaping Friendships

Just before Thanksgiving the stars aligned and just like eHarmony for the T1D world (dHarmony?) we met a sassy blogger online named Libby. A twenty-something who also happens to be pancreatically-challenged, Libby asked us if she could interview us for her blog and we were pumped (pun totally intended).

I told Isabella that a new friend with T1D wanted to interview her…which set off a string of questions about who this mystery girl was, what kind of ice cream she likes and whether or not she’d seen Frozen. She was excited and I was, too.

After our interview with Libby (which was chocked full of so much awesome that I’ll let you read it yourself) we decided we wanted to send her a thank you card and one of our fab Inspired by Isabella t-shirts. Of course, being 4 years old and looking for any excuse to get marker on my nice, Amish-made table channel her inner Warhol, Isabella said SHE wanted to make the card. The “card” turned into half a dozen drawings and notes, dictated letter by letter by me, to our new friend Libby.

“Does ‘Libby’ begin with an ‘L’, mom?”

“Are there one or two ‘o’s in ‘love’?”

“How do you spell ‘best friend’?”

And that right there made my eyes start to leak.

Isabella brought me her stack of notes and drawings and as I thumbed through them I stopped at one. It was a drawing she had made of her and her new BFF, surrounded by flowers and a rainbow, their names scribbled to indicate who was who.

libby

It was hard not to notice the numerous shapes Isabella had drawn up and down the two figures, seemingly random.

“I love this drawing, Isa. Can you tell me what these shapes are on you two?”

“Those are our sites…for our pumps and cgms.”

And I could feel my heart sink.

But then I noticed something else. Smiles. Both the stick figure image of Isabella on the paper and the pigtailed toddler standing in front of me had smiles spread across their faces.

And I knew. I knew that Isabella had found someone else she could draw who also had shapes running up and down them like a highway of reminders of this disease. She was smiling because she had found someone to look up to and to show her that she shouldn’t be ashamed of these shapes. And while her shapes will never define her, they are a part of her story.

Thank you, Libby, for helping Isabella embrace her shapes…and for sharing her journey.

Cheers to Changing the World~
Kristina

Three Words: Reflections from Friends for Life

fflI had just finished participating in DSMA (Diabetes Social Media Advocacy), the live Twitter chat that happens every Wednesday night at 9pm EST (which I’ve suddenly become addicted to). It was around 10:30pm and I finally sat down to write my blog post, reflecting on the Children with Diabetes “Friends for Life Conference” that we attended in early July. I typed my initial thought for the headline and an opening sentence…

That’s when I heard the crying and screams.

It was Isabella. She had been in bed and presumably asleep for an hour or two but was now awake and crying. I went upstairs to check on her…but she was already coming down the hallway on her way downstairs to see us. I asked what was wrong and she continued to cry; unfortunately, this scenario is not entirely unusual when you have nearly 4-year-old triplets who never want to go to sleep at night. Admittedly frustrated, I scooped her up and immediately knew something was wrong. Her little body felt like it was in a cold sweat. She continued to cry and wiggle around as she wrapped her arms tightly around me.

I suspected that her blood glucose was still very high (her levels had been high since we changed her insulin pod several hours earlier). I pulled out her meter and confirmed that she was in fact high (471!).  In and of itself this is not terribly concerning as her level can vary widely (after all, she’s a growing toddler!) and the solution is fairly straightforward – give her insulin to bring her level back down. The problem was that her level had been high for several hours and it was now clear that the insulin we had already given her didn’t seem to be having the desired effect of reducing her blood sugar level. Her pod likely wasn’t functioning or had come loose, which we hadn’t realized earlier.

We checked for ketones; if present in the bloodstream, ketones can lead to DKA, or ketoacidosis (resulting in a coma or worse). For the first time since her diagnosis, Isa had “medium to large” ketones, which is approaching very dangerous levels. I called the hospital emergency line to reach the on-call endocrinologist, and had prepared myself for what I thought would be our first diabetes-related visit to the ER since her diagnosis nearly two years ago. The doctor suspected that Isabella’s pump had not been delivering insulin for several hours and suggested we give her an insulin injection. Isa was scared…I guess she had already forgotten, or at least didn’t want to remember, the nearly fifteen-hundred insulin shots she received during her second year of her life. We replaced her pod and gave her an injection of insulin for the first time since she started on her OmniPod nearly 12 months earlier. Thankfully, within a couple of hours, her level came back down into range. With that, our diabetes crisis was averted.

I never did finish my “FFL reflections” blog post that night, so I wanted to finally share some thoughts. As I reflect on the conference, three words come to mind: inspired, hopeful and proud. Here are a few reasons why…

Inspired

  • We met and had the opportunity to hear from several athletes living with T1D that have accomplished amazing things: Jay Hewitt, Ryan Reed, Charlie Kimball, Sebastien Sasseville. These individuals truly inspire us and are great role models for our daughter; they remind us that anything is possible!
  • We met many great families, some of which we had already “met” in the DOC; I’m inspired by how they manage through this challenge day-after-day, month-after-month, year-after-year…while keeping a positive attitude, continuing to raise awareness and finding ways to overcome “diabetes burnout.”

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    Finally Meeting The Ferrer Family of “Jaime, Mi Dulce Guerrero”. Somos Amigos Para Toda La Vida!

Hopeful

  • We had the opportunity to hear about the Bionic Pancreas, a medical device currently being developed and tested by Dr. Ed Damiano and his team at Boston University. Dr. Damiano began developing this device as a commitment to his son, who was diagnosed with T1D at just 11 months old (he’s now 15). The technology is amazing and would enable Isabella and many others to live without having to worry or even think about diabetes every single day.
  • Isa started a trial of a Dexcom G4 CGM (continuous glucose monitor) during the conference. This was made possible by Jeff Hitchcock, Founder & President of Children With Diabetes, who asked if we were interested in participating in the trial. Jeff helped arrange everything with theDexcom team (who, by the way, are an amazing group of people!), and we were off. We’re hopeful her newDexcom CGM will help provide us with information to make more informed decisions about managing her diabetes…and will provide us with some sleep-FILLED nights!

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    One of our Friends for Life – Jeff Hitchcock, Founder & President of Children With Diabetes

Proud

  • I was so proud to see Isabella seek out others with green bracelets (all those with T1D were wearing green bracelets) to introduce herself and say “I have diabetes, too!” She was so proud to show off her OmniPod and her new Dexcom…and that made me smile as I want her to be proud of who she is, embrace the challenges in her life and turn them into opportunities.
  • Isabella and her triplet siblings, Mia and Max, made so many new friends during the conference and I know they will truly make “Friends for Life” as a result of attendingFFL each year. That makes me one proud papa!

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    The Trio with Lenny the Lion!

Overall, the conference was once again amazing. It is truly a great feeling to be with 800 other families that understand exactly what type one diabetes is all about and how it affects our family, both emotionally and physically (thank you to the family that gave me juice to treat Isa’s low by the pool!). The conference sessions are great and informative, but interacting with others affected by T1D and hearing about the amazing things they’ve accomplished living with diabetes is what makes this conference so special. Can’t wait for next year’s conference!

-Greg

 

Now, we wait.

trioChecking…

Checking…

We stared intently at the meter, seemingly taking forever to provide a blood sugar reading.

Checking…

Checking…

84.

And with that we released a sigh of relief. Today would not be the day we had another child diagnosed with type 1 diabetes. Nope, not today.

This wouldn’t be the first time we’d checked one of the other kid’s blood sugar…and it probably won’t be the last.

Since Isabella’s diagnosis almost two years ago it’s become commonplace for people we meet to express their surprise that just one of our trio has T1D.

“She’s the only one? Hmmm, that’s so interesting.”

“Are you worried about the other two ‘getting it’?”

“Well, you know the warning signs so you’ll be prepared if it does happen.”

“At least you know how to manage it already.”

Truth…but a painful one to think about.

During the Children with Diabetes Friends for Life Conference in 2013 we learned about TrialNet – a two-part clinical study being conducted by “an international network of researchers who are exploring ways to prevent, delay and reverse the progression of type 1 diabetes.” We stopped by the TrialNet table during the conference and spoke with someone about our family participating in the screening that checks for autoantibodies that are predictors of type 1 diabetes development.

We left the table with a stack of forms to complete so that Isabella’s brother and sister, as well as Greg and I, could be tested during the conference. As we packed our bags four days later I remember tossing the papers into the hotel room trash can. We couldn’t do it.

There are many schools of thought on whether it’s better to know that something bad is inevitable, or to live life as it is and just take what is handed to you as it comes. Would we do anything differently if we knew, with a good amount of certainty, that one or both of Isabella’s siblings would also develop type 1? Would it change the way we are living our life today? Would we just be in a static state of paranoia – checking their blood sugar regularly to see if ‘today is the day’?

The answer is: I don’t know.

You never know how you’ll react to news you don’t want to hear. You never know if you’ll be able to hold it together so that your kids don’t see the breaking of the Hoover Dam that is bound to happen behind your eyes. You never know if you’ll wait…and wait…and wait…for nothing to ever happen.

And you never know how strong you are until that’s the only option you have.

Two weeks ago during this year’s Friends for Life Conference our TrialNet paperwork made its way to the scientists. We all held out our arms for the blood draw that will ultimately let us know if anyone else in our house has the autoantibodies that predict type 1 diabetes. Two weeks ago we made a decision that we wanted to help advance the research into this disease and that, by participating in this study, we would be helping scientists understand more about T1D and move towards finding a cure.

Sitting at the hotel pool later that day I met a woman who told me her non-type 1 child had participated in TrialNet the year before. She told me, with tears forming behind her sunglasses, that the day they got the phone call with the results was harder than the day her type 1 child was diagnosed. The test had come back positive for the autoantibodies. Now, she told me, they just live in a state of limbo since, technically, her other child hasn’t been diagnosed. A state of limbo waiting for the excessive thirst, frequent urination, weight loss…waiting for the day they “officially” become a family with two kids with type 1 diabetes.

So now we wait. But we wait knowing that, regardless of the call we might receive in a few months when our results are ready, we are part of a bigger picture. A picture of hope that one day two mothers can sit on the poolside watching their children play – no medical devices attached to their bodies keeping them alive – like kids should do…without a care in the world.

Now, we wait.

Cheers to Changing the World~
Kristina

Grandma Gets It: Diabetes and Disney

*Our family had the opportunity to attend this year’s Children With Diabetes ‘Friends for Life’ Conference held each summer in Orlando.  This was our second year attending the conference and we decided to invite one of Isabella’s grandmothers, Darlene, to join us. While we will be sharing our own thoughts on the conference (look for 2 additional posts from us with our mom & dad reflections), we also asked “Grandma Dar Dar” to write a guest blog about her experience.  We hope it will encourage other grandparents, aunts, uncles, and extended family to consider learning more about caring for a child with type 1 diabetes…the more people a family has on their diabetes care team, the better!

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A great night at the Friends for Life banquet!

I spent an incredible week with my son Greg, daughter-in-law Kristina and triplet grandchildren, Isabella, Mia and Max in Orlando for the Children with Diabetes Friends for Life conference. When they invited me to go with them, I had no idea what all was involved.

The conference didn’t start until Wednesday so we spent the first 2 1/2 days at the Disney parks and it was such fun. I think we stood in line to see every Disney princess possible…as well as Mickey and Minnie. The kids were so excited.

We went on rides, too, and while waiting in line for one ride, Isabella pointed to a little girl in front of us and said that she had a green bracelet on. Her dad asked her what it meant and she said that the girl had diabetes. We hadn’t signed in for the conference yet but, when you sign in, you get a green paper bracelet if you have T1D and an orange bracelet for those who do not have T1D. Isa remembered this from the previous year and it amazed me that she remembered this. Then Isa showed the little girl her OmniPod insulin pod.

When you go somewhere with children you have to take extra clothes, snacks, diapers or Pull-Ups, if needed. When your child has T1D you also need to bring glucose tablets, juice boxes, insulin, a glucometer and glucagon (an injection in case the blood sugar drops too low). Greg and Kristina checked Isabella’s glucose level frequently throughout the day. While we were waiting for the shuttle to take us back to the hotel, the kids were running around and all of a sudden, Isa was just standing there and said she was tired. Greg immediately checked her glucose level and it was in the low 50s so they gave her a juice box to bring it back up. This made me realize that she needs to be checked frequently…and it is a big responsibility.

At the conference I attended a number of sessions for grandparents and learned a lot. Even though I am a retired nurse, I didn’t know a lot about T1D and how to handle the highs and lows since so much has changed with the use of pumps and continuous glucose monitors(CGM). You really need to be on top of things and recognize the symptoms of low blood sugar.

I have also been very concerned about the complications of diabetes and worried for my beautiful granddaughter but ,after attending one session, I was relieved to learn that long-term complications usually only occur if the blood sugar has been high(250-300 or more) for an extended period of time. In fact, one presenter has had diabetes for 55 years and is doing fine.

An interesting statistic is that 15,000 children per year are diagnosed with T1D. A doctor at the Diabetes Research Institute (DRI) in Miami, Dr. Chris Fraker, has found a correlation between certain viruses and T1D and hopes that one day if they can find a way to stop the viruses from destroying the islet cells in the pancreas which produce insulin, then diabetes will be cured.

Many who attended the conference have been coming for years and have developed friendships. It was so great to see the older kids interact with Isa and when Isa saw someone with a green bracelet, she wanted to meet them and show them her insulin pump or the Dexcom CGM she just stared using. 

We heard from athletes with T 1D who have done amazing things like competed in NASCAR and Indy car races (Ryan Reed and Charlie Kimball), doing triathlons (Jay Hewitt), and one young man who is running four marathons per week for nine months across Canada (Sebastian Sasseville) and they are an inspiration to the young people with T1D and show them that they can do anything they set their sights on.

It was a wonderful week and one that I will always remember. 

-Darlene

Why We All Need A Patty

Isa and Addison

Most people would look at this photo and see two little girls, happy and smiling…without a care in the world. What you’re really looking at are two AMAZING 3-year-olds fighting the challenges thrown at them by type 1 diabetes.

We had an awesome day with little Addison and her family today where we enjoyed pizza,  pump site changes (one planned and one not!), high (400) & low (48) blood sugars, and the beginning of an adorable friendship between two toddlers who’ve found a friend that “has didabeeeteees too!”

Watching Addison ask Isa if she wanted stickers to decorate her new insulin pod and holding her hand during her site change…and seeing Addison timidly show Isa her continuous glucose monitor adorning her little belly…it made me realize just how much it matters to have someone by your side who’s fighting the same battle as you. And I’m not just talking about the girls.

When Isabella was diagnosed we were in the hospital for less than 24 hours when we had a knock on our hospital room door.  In walked a woman that, though I didn’t realize it at the time, would set the scene for how I would be as a mother of a child with T1D.

Over the next hour this woman, Patty, told us about her life as a mom and wife to children AND a husband with Type 1.  She gave us a book of information about diabetes care she had photocopied from when one of her children was first diagnosed. She told us about diabetes camps and the difference they had made in her children’s lives.  She smiled. She laughed.  And her hair and makeup looked great.

She was normal.  

I wanted to be like Patty.

Before Christmas this past year a classmate of Isa’s was diagnosed with Type 1.  Up until that moment Isa had been the only child in her school with diabetes.  I didn’t know the family of this newly diagnosed child and had heard they would be moving and leaving the school over the holidays.  The day before the holiday break I went to the school to pick up the kids and, almost as if it was meant to be, the little boy’s father was there picking him up.  I am a firm believer in fate, and this was it.  It was my turn to be Patty.

I passed our contact info on to the dad and encouraged him to reach out to Greg or I if he or his wife needed anything. I told him about our experience with the OmniPod pump and about the Children with Diabetes Friends for Life Conference we attended in Orlando. I told him we were just a year post diagnosis so we were still learning, too, but that we could certainly provide advice based on our short experience. I was sure I’d return home that day to an email from this family with a list of questions I could answer. 

I was wrong. I was obviously no Patty.

Today while chatting with Addison’s mommy and daddy I was reminded of how important it is for parents of T1D kids to connect. To share stories of what’s worked and what hasn’t.  To commiserate about those unexplained lows and to curse the technology that, in reality, is helping us keep our children alive. To beam with pride when our kids exhibit bravery we could never muster.

We all need a Patty to remind us that our lives as our kid’s substitute pancreas won’t be easy, but to keep in mind that our kids will take their cues from us. It’s up to us to assure them that their diabetes, though a part of who they are, doesn’t define them. It’s up to us to let them know that there is an Addison somewhere out there to hold their hand.

So, for those of you who are newly diagnosed, or those who have just gotten the courage to seek out some support, we are here. I may not be a Patty but I can assure you that my hair and makeup look great, too.

Cheers to Changing the World,
Kristina

 

And Just Like That, Year Two Begins…

Not Cool Pancreas

She loved the t-shirt we made for her: Not Cool, Pancreas…Not Cool. 🙂

A year ago today we sat in Isabella’s room at the Hospital ABC in Mexico City on DAY 2 of her life with T1D.  Today we began YEAR 2.

Yesterday was amazing…Isabella’s journey was celebrated not only here in Ohio, but also in Texas and Florida. Though we have so much to be thankful for, I have to admit I am looking forward to the day we can celebrate a cure for this disease.

Over the past 24 hours we’ve received some very generous donations from friends, family, and strangers to support our team in the upcoming JDRF Northeast Ohio Walk to Cure Diabetes.  Words can’t begin to express our gratitude to everyone who has joined us on our journey to a cure for type 1 diabetes…we are truly blessed.  A year ago we would never have imagined all that we would experience and accomplish since Isabella’s diagnosis:

-We’ve met some amazing people who also have T1D in their lives;

-Become deeply involved with JDRF (including Greg’s board appointment to the Northeast Ohio chapter);

-Visited the DRI (Diabetes Research Institute) where we met with diabetes researchers;

-Reached nearly 600 Facebook followers and the same number of Twitter followers;

-Led teams participating in JDRF walks in Ohio and the FIND walk in Mexico City;

-Attended the JDRF Hope Gala in Miami;

-Created partnerships to raise funds (including jewelry, t-shirts, hair bows, and ornaments);

-Partnered with amazing businesses to host successful fundraising events;

-Won 2nd prize in a diabetes awareness photo contest sponsored by the JDCA;

-Attended a Children with Diabetes Conference at Disney;

-Been profiled in various online and print publications;

-Launched this website (yay!);

-Raised nearly $14,000 and counting towards diabetes research…

And we’re not done yet 🙂

As promised, here are some photos commemorating Isabella’s 1-Year Diaversary yesterday!

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Waiting to greet her party guests!

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Family and Friends Celebrating Isabella’s Diaversary in Ohio

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Blue (sugar-free!) cupcakes!

 

 

 

 

 

 

 

 

 

 

 

 

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Isabella’s aunt and cousins organized a balloon launch in Florida to celebrate with us!

Oma Opa Blue Day

Isabella’s Oma, Opa, and cousin supporting her Diaversary in blue all the way from Texas!

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