To the Ends of the Earth…

Isa and Aunt Shelly

Isabella and her Aunt Shelly during the 2014 JDRF Walk to Cure Diabetes

**Thank you to Isabella’s Aunt Shelly for being our special guest blogger this week! We hope you enjoy her post below.

Over the weekend we kept the trio on Saturday night so Greg and Kristina could enjoy a night out to themselves. I swear that the cousins can never get enough of each other and would really prefer to just move in together.

Within about 2 hours of us getting back to our house and having dinner Isa’s blood sugar was high….220 to be exact. She ate dinner and it was just hitting her. I texted Greg to ask him a question about her insulin on board (IOB) and to verify that I should not adjust her insulin at this time and to give her insulin time to work. He verified that was the right thing to do. See?  I’m getting pretty good at handling this stuff by now.

The rest of the night was uneventful. The kids ran around for a little bit until we settled them down for a movie and put them to bed. They were all pretty tired and went right to sleep. We’re pretty good at that as well….7 kids in the house and all go right to sleep…no problem.

Within 30 minutes of bedtime Isa’s continuous glucose monitor (CGM) started beeping telling me she was low. I checked her and she was definitely low….56 to be exact. That’s pretty low if you’re wondering. I gave her some juice and her number came up to 80 within about an hour.

Unfortunately she hovered around that 80 all night which meant a constant beeping CGM and more juice throughout the night. Trying to get a 4-year-old to drink juice in the middle of the night when she really doesn’t want it isn’t an easy task for sure. By 4am I put my husband on that duty and he finally got her to drink the rest of what was left of what we were trying to give her.

What I remember distinctly from that night is that I sat in my bed and do what I do best: I prayed. I prayed for Greg and Kristina first. I prayed for their guidance and for their support through this as I know this cannot be easy day in and day out on a parent. Mostly, I know it cannot be easy watching their little girl knowing she’s not going to wake up better the next day. Then I prayed for Isa…like I do so often. I prayed for her strength. I prayed for there to be a cure one day. I prayed for the doctors taking care of her. I prayed that as she gets older she is able to take care of this on her own and doesn’t rebel. I prayed that she be ok in the morning…..this was my biggest prayer in that moment, and I’m sure one that Greg and Kristina worry every night when they go to bed.

The next day Greg told me how to temporarily turn off Isa’s basal insulin on her pump so she stops getting it…which is probably what needed to occur the night we had her so her numbers could come back up. That’s the thing with this disease: there is no simple answer. A lot of it is trial and error and seeing what works best for you or what works best in the moment. Type 1 Diabetes is manageable, but the scary part is that you just never know. One wrong move and the person dealing with this disease could be in a coma or not wake up.

I am always in awe of Greg and Kristina’s willingness to let us keep their little girl without a second thought. I never, not one time, have felt like they worry about Isa when she’s with us. I second guess myself sometimes about what I could have done differently and I would go to the ends of the Earth for my niece. I love her like I love my own children. Kristina and Greg are educating so many through their guidance, their love and their patience with this disease. They are giving Isa the tools to one day, when she’s older, be able to go out on her own and conquer the world. Hopefully when that happens they will not worry about her quite as much because she’s been trained so well. I am in awe, as always.

~Shelly

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

Guilt

laughterTears. Lots of tears.

Arms flailing, screams echoing through the house. A chorus of doors slamming and feet stomping rattle the walls.

Dr. Jekyll, meet Mr. Hyde.

So often people tell us that Isabella seems so happy, always full of smiles. We share photos of her with her silly grin, stretching from ear to ear, proud of this and happy about that. To the outsider she seems like a toddler full of so much joy, conquering each daily challenge with a hop in her step and a shine in her eyes.

But not today.

Today she is losing…and so are we.

One of the many challenges of type 1 diabetes is that its affects can vary person by person. Some can feel their lows coming, getting tired and shaky. Others, like Isabella, show no sign that their blood sugar is falling to a dangerous level. In fact, Isabella is almost always giddy and laughing when she is low.

As difficult as it is to tell her lows, her highs are hard to miss. The happy, goofy 4-year-old disappears and an anger-filled stranger takes her place and, as has become routine, she is exiled to her room until she calms down…usually falling asleep, exhausted from screaming and crying.

And I feel guilty.

I feel guilty because I know her body is playing a mean game of “Perfection”…just waiting for the sand timer to run out while trying everything to get her blood sugar back in range before scattering all of the pieces to the ground. No matter how hard we try, it always seems like the sand is faster than the insulin running through her body and we lose…a lot.

But there she is, sent to her room to cry it out and sleep it off. Kept home from a classmate’s birthday party because of her diabetes-assisted tantrum. Punishment for a disease she didn’t choose and for effects she can’t control.

And I feel guilty.

We get home from the party and prepare for bath time. I’m still angry at Isabella for her earlier fit, and even more frustrated that she doesn’t understand why she couldn’t go with her brother and sister. As she steps into the tub a mix of emotions hit me as I catch a glimpse of the technology keeping her alive. An insulin pod attached to her arm and her continuous glucose monitor embedded in her lower back…my robotic daughter.

And I feel guilty. And I am mad. Mad at this disease and mad at what it does to my beautiful little girl. Mad that I can only control so much and mad that I feel guilty for trying to parent the best way that I can.

And tomorrow we’ll flip the sand timer again…

Cheers to Changing the World~
Kristina

Here we go again…

I have always loved Halloween. I love dressing up and I love the excitement leading up to it. It’s probably no secret to those that know me well that I start planning costumes months in advance…and we don’t disappoint!For most kids, though, Halloween is about much more than choosing costumes.

It’s about the candy. C-A-N-D-Y.

Most people would expect that, as parents of a kid with type 1 diabetes, Halloween would be the holiday we dread the most.

And they would be right…but not for the reasons you would assume.

THIS is why I dread Halloween:

Halloween Diabetes
And this:
halloween diabetes 2
A year ago before Halloween I wrote a post in response to someone else’s blog entitled 10 Halloween Candy Alternatives That Won’t Give Your Kids Diabeetus. I realized then that there will always be people who choose to perpetuate stereotypes about this disease, simply because they don’t KNOW what it is. I also realized that there are people who back up jokes like these with the claim of “I was actually referring to TYPE 2 diabetes!”…as if that makes it ok. How about making a joke about cancer and saying “Oh! I didn’t mean breast cancer, I meant prostate cancer, silly!” Nope. Not ok. Another person’s illness or disease is not a joke…no matter what it’s called.This year I’ve decided that instead of being mad about these things, I’m going to channel my inner spirit fingers and let them help recharge my motivation (“Gimme a C-U-R-E!”). I know that our efforts to raise awareness and educate people about type 1 diabetes are helping someone…or many someones. I just know it.

I also know (ok, I just looked it up) that the word “ignorance” comes from the Latin ignorantia meaning “want of knowledge”. So you know what? We’re going to help the folks who continue to perpetuate the stereotypes about “diabeetus” (which, by the way, was only funny when it was said by Wilford Brimley) and keep supplying them with LOTS of knowledge.

You want it? You got it.
bees

Happy Halloween!

Bring it On…and Let’s Change the World~
Kristina

 

The #TBT No One Wants To See

hospital2 Nearly two years.

Now, more than half her life.

Every day. Forever.

Sitting in the standard metal hospital chair, I looked over at Isabella.

Everything seemed the same…just the crib swapped out for a rolling bed.

Hadn’t we just been here?

Didn’t we just experienced the exact same blood-drawing, IV-inserting, stabilizing-levels process?

Hadn’t we just watched helplessly as tears streamed down her face…her little tourniquet-wrapped arm outstretched and reaching for us as blood trickled into multiple vials for testing?

Weren’t we just told that our daughter was very sick…and how lucky she was that we’d brought her to the ER in time?

So many times since Isabella’s diagnosis we’ve heard stories from friends and strangers about the many complications that can come along with type 1 diabetes. And so many times we’ve talked about how lucky we must be that Isa is almost two years post-diagnosis without complications. Didn’t we deserve some “Understudy Pancreas of the Year” award? We were like the Mr. Miyagi of diabetes management…mastering it left and right. I mean, if we did everything right it just makes sense that we’d have smooth sailing…what could possibly go wrong that we couldn’t predict?

Actually, everything.

That’s the thing about this disease: it’s unpredictable. No matter how many devices we use to manage/track/dose…there will always be that unknown.  hospital1

Isabella was admitted to the hospital yesterday with Diabetic Ketoacidosis (DKA) after blood tests in the ER revealed she had large amounts of ketones in her blood stream. If left untreated, the amount of toxins in the blood can result in a coma and can be fatal.  The cause of DKA varies and, as was the case with Isa, it can develop rapidly.

We are now home after 2 days in the hospital and Isabella is back to her old self.

But we aren’t.

Because now we know. We know T1D doesn’t play favorites. There are no “lucky ones”. This is a disease that leads the body to attack itself. ITSELF. It is unpredictable and it is dangerous.

And for Isabella, it’s her life.

For now.

“First learn stand, then learn fly”…wise man, that Mr. Miyagi.

Cheers to Changing the World,

Kristina

PS- THIS is why we are working so hard to raise funds and awareness for a cure.  If you would like to support us in our efforts, please visit: www2.jdrf.org/goto/inspiredbyisabella.  Thank you for joining us on our journey to a cure for type 1 diabetes!

 

 

 

 

 

 

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.”

    ffl mila

    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!

    ffl jeff

    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!

    ffl lenny

    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

 

A Reflection on Linens

 

Scarred fingertips: the shared badge of those with T1D...even at age 3.

Scarred fingertips: The badge Isabella shares with others with Type 1 Diabetes.

I pull the matching pink quilts out of the dryer and head upstairs to do what I always tell Greg is my least favorite house-cleaning task: changing sheets. Before dropping off each quilt in the girl’s rooms I hold them up to determine whose is whose. Two years ago these quilts were identical in every way.

But today they are different.

One still has the bright pink glow that got me to succumb to purchasing a non-sale item from Pottery Barn Kids.

The other is faded from too-frequent washings.

One is always placed on the bed with the corner tags tickling the footboard.

The other gets rotated each time so as to distribute evenly the tiny stains of blood drops that, despite our best efforts to wipe clean little fingers after middle-of-the-night blood sugar checks, have accumulated over the past year and a half.

And so I place the quilts on the girls beds…and continue my dislike of changing sheets.

Because today they are different.

Cheers to Changing the World (and linens)~
Kristina