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

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

A Glimpse Into the Future of T1D

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Isabella and her “I Heart Guts” Pancreas Pillow

On Tuesday, Kristina and I had the opportunity to attend a JDRF research update featuring Tom Brobson, National Director of Research Investment Opportunities. We were excited to hear about the research going on at JDRF and, selfishly, what it means for our daughter now and in the future.

On the way to the event, Kristina mentioned that while she was changing Isabella’s insulin pod in the morning before school, Isabella looked at her and said, “Mommy, I don’t want to wear a pod anymore.”

My heart literally sunk and I felt tears welling up in my eyes. Isabella has never said that. She’s been on her pump for about 8 months or so and for the most part, she understands why she wears it and understands that she doesn’t really have a choice. But, she doesn’t fully understand that it will never be a choice…she may eventually choose a different pump, or may even choose to go back to injections…but the harsh reality is that she literally needs her insulin pump to survive every day of her life. That is, until a cure, or at least something that “feels” like a cure, is found. I began thinking, hoping and praying that we would hear promising news from Tom Brobson at the event.

Tom started his talk by saying, “I don’t have any extra letters after my name like PhD or MD…but I do have T1D.” Tom was diagnosed with type one diabetes about 10 years ago, at the age of 44. He joined JDRF about a year later, hoping to do his part to find a cure for himself and many others. As he spoke passionately about several key research initiatives, it became very clear that Tom was not only passionate about JDRF and the great work the organization is doing, but he was also passionate about making the lives of those living with type one better, including his own, on the path to a cure. He became somewhat emotional a couple of times as he spoke; this isn’t just his job, but his life!

Tom spoke about three main research initiatives, Smart Insulin, the Artificial Pancreas project and Encapsulation. Each of these initiatives have gone through various stages, navigating through the lengthy and quite costly FDA approval process. I expected to hear about how these three initiatives were showing very promising results in mice, cats or better yet, monkeys. The great news is that all three of these programs are currently in the human trials stage or entering human trials soon!  This means that we are that much closer to a dramatic change in Isabella’s life!

Smart Insulin has been in the news recently as Merck, one of the world’s largest pharmaceutical companies, announced earlier this week their plans to begin clinical trials. Smart Insulin, which was originally backed and supported by JDRF, is a form of insulin that is injected perhaps once daily and essentially turns “on” and “off” according to glucose levels. No more glucose checking. No more carb counting. No more dangerous lows. Isabella’s body could get the insulin that her pancreas can’t produce, without any additional effort or monitoring. This would be huge! As Tom put it, this could be “a game changer.” Not only for those living with type one, but also for those living with type 2 who aren’t often prescribed insulin. That’s all great news!…but unfortunately, Smart Insulin is still many years from becoming a reality.

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Tom Brobson, JDRF National Director of Research Opportunities, showing us the artificial pancreas technology.

Tom also spoke at length about the Artificial Pancreas project. The Artificial Pancreas is not what it may sound like (no, it’s not a lab-produced pancreas that’s implanted into your body to replace the “bad part”). It’s essentially a computer program that can run on a smartphone…and essentially functions as a pancreas to ensure insulin is adjusted up or down when needed.

Tom has personally participated in several trials. He talked about one trial in which he was hooked up to the system and then was told to go eat a Five Guys burger and fries, which he gladly did, although he was quite skeptical at the time that the system would actually be able to keep his glucose under control (certainly not as good as he could on his own!). To his surprise, after eating a giant burger and fries, the system was able to keep his blood sugar under 200 and then bring him back within his normal range in a relatively short amount of time. There’s a word to describe this: amazing!

The system has performed extremely well in clinical trials. Tom mentioned that he is generally very tightly controlled and tends to be “out of range” only 4-5 hours per day. When he was on the system, his “out of range” time dropped to about 40 minutes per day. A new trial is starting soon and people will basically be handed an iPhone with the system and told to go live their lives for 6 months. After the trial, the hope is that the data and results will be sufficient to obtain FDA approval for the Artificial Pancreas. This could be 2-3 years out…while not a “cure,” it would certainly change Isabella’s life and enable her, and us, to live our days and nights without constantly thinking about her type one diabetes.

I asked Tom what he felt was the most exciting and most promising initiative underway at JDRF, fully expecting him to say the Artificial Pancreas. But, instead he talked about “Encapsulation.” To describe it, used the analogy of a shark cage. If you want to observe sharks, you could get into a cage where you would be fully protected and unharmed from sharks that want to eat you. The concept behind encapsulation is very similar…JDRF is working with partners to be able to insert beta cells into a small medical device that would be implanted into the body and protect the cells from other dangerous cells that want to destroy them. The beta cells would produce all the insulin you would need for up to 24 months. This also wouldn’t be a cure…but two years without worrying about diabetes is pretty damn close! This is still a long way off before it could be used as a treatment, but very exciting nonetheless.

So, the bottom line is that we heard a lot of very exciting stuff that inspires us and gives us hope! In speaking about his view of a cure, Tom said, “someday someone will write a book about the cure for type one diabetes and I wish I knew what chapter we were on now.” Don’t we all.

I had an additional opportunity to meet with Tom again Wednesday morning in a smaller group session at our Northeast Ohio JDRF Chapter Board meeting. He talked about the research initiatives and the fact that they are getting closer and closer to reality, which also means they become much more expensive. In talking about JDRF’s efforts to date and current efforts to push into the future, he said, “we’re the type that will take this on and change the world…but we need your help.”

Please help and join us on our journey to a cure for type one diabetes. Together, we can change the world!

-Greg

 

Suiting Up

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“Celebrities with Type 1”

“Type 1 Famous People”

“Professional Athletes with Diabetes”

After Isabella’s diagnosis I searched. I searched…and I hoped.  I searched and I found what I had been so sure existed.  And I was relieved. Relieved to know that our daughter had “them” on her side.  She would have “them” to provide the name we needed to trigger some recognition…to trigger some action. I knew that as long as we could count on these people, there was no way Isabella would be living with Type 1 Diabetes ten years from now.

It’s their responsibility, after all…isn’t it?

This morning R&B star Usher announced on the TODAY Show that one of his young sons was diagnosed with T1D this past year .

“This year has been really one of my hardest years – I lost my grandmother, my son was diagnosed as being a type one diabetic. It has definitely been a difficult one for me, man,” he said. 

And with that admission, we scored big. Suit up, Mr. Raymond, and take your place alongside Ray Allen, Nick Jonas, Bret Michaels, Jay Cutler and the handful of others whose families have been turned upside down by a T1D diagnosis. Suit up and get ready for one of the most important gigs of your life.  Suit up and be prepared to be an advocate for…

Your son.

Yes, it’s a bonus for us to have someone like you on our team. Yes, the exposure your son’s diagnosis will give to this disease affecting so many of our families will help us to raise awareness and educate others. Yes, we hope your celebrity status will help us raise funds to aid in our search for a cure.

But that’s not your job right now.

Right now you’re a dad to a son who needs you…more than he’s ever needed you before. And that, my fellow substitute pancreas, is your job.

And when you’re ready, your team is here waiting for you…and we’re all warmed up.

Cheers to Changing the World~
Kristina

 

 

 

Captured by Kelly Photography – Mini Sessions to Benefit JDRF!

Very excited to announce that the super-talented Captured by Kelly Photography will be hosting special mini sessions for TWO days, April 5th & 6th, and donating a portion of each session to JDRF in Isabella’s name! We have had Kelly take our family photos multiple times and they are always amazing.

If you are in NE Ohio & would like pics for Easter, or just new family photos, this is a wonderful opportunity AND you’ll be supporting a great cause. Please see the flyer below for more info about how to schedule your time slot. Thank you for supporting our journey to a cure for type 1 diabetes!Captured by Kelly

What I Signed Up For

Trio

“I’m so sorry…I know you were just here.”

“It’s fine. It’s what I signed up for.”

I jump in my car, still warm from my return trip picking up a sick son just 30 minutes earlier, and head to the preschool to tend to an insulin pump that is screaming its head off…the 6th insulin pod in a box of 10 to bite the dust before the 3-day window closed.

But, this is what I signed up for.

Last month I made a quick stop at Macy’s and, as has become customary since our trio arrived, I spent the entire time flipping through the clearance rack in the kid’s department.

I stepped up to the checkout counter, my arms filled with Dora jammies and Hello Kitty flair, proud of my deal-seeking skills.

 

“Wow! Do the girls you are buying for know that they’re getting some cute new things?”

“Actually, these are for my daughters.”

“Oh, you have twin girls?”

“Well, I have triplets…two girls and a boy.”

“Holy cow! What did you do when you found out you were having TRIPLETS?!? I would have hung myself.”

And…scene.

The sad truth is that this isn’t the first time someone has said something like this to me. In fact most people I meet who learn that we not only have triplets, but that one of them also has type 1 diabetes, express their sympathy to me in varying forms.

But, this is what I signed up for.

When I was young I used to say that I didn’t know if I wanted to have children…I knew I had a selfish side. I wanted to be successful professionally. I wanted to travel. I wanted to have the freedom to do what I wanted, when I wanted.

And then things changed. I wanted to be a mom.

But it wasn’t that easy. Not easy at all. Like, 5 years not easy.

It’s not until you realize that there’s a possibility… a real possibility…that you can’t have kids that you realize whether or not you are meant to be a parent. I realized I had been wrong.

I wanted someone to call me “Mommy”. I wanted someone to ask me to tuck them in at night and assure them that there were no monsters in the closet. I wanted someone to ask me why the moon goes to sleep during the day and why Donald Duck doesn’t wear pants.

That is what I signed up for.

When people ask me “How do you do it?” the answer is actually pretty simple…how could I not? I don’t know any different.

When you become a parent you are making a commitment to one thing: to love your children…no matter what. We don’t get to choose what challenges come with parenthood. We don’t get to decide what we can handle and what we can’t…that’s done for us. What we do get to play a role in is HOW we parent and HOW we show our children that we love them.  Did I sign up for diabetes? Of course not.  But I did sign up for being a mom…diabetes or not.

I am constantly amazed by the number of friends we have whose children are facing challenges including type 1 diabetes, Spinal Muscular Atrophy, Apraxia, severe food allergies, and many more. Did any of us know or envision our children’s lives being consumed by these challenges? No way. Did any of us know we would soon become advocates, fundraisers, and educators about these diseases/disorders? Not a clue.

But, we have…because that’s what we signed up for.

Cheers to Changing the World~

Kristina

 

Offending ‘Miss Manners’

 

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Earlier this week advice columnist Judith Martin, whose Miss Manners column is carried by more than 200 newspapers worldwide, responded to a reader’s question regarding whether or not those with diabetes should check their blood sugar in public settings.  Her response was a column entitled “Do Diabetic Testing in Private” and included the following paragraph:

Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such.

As a father of a child with type 1 diabetes, I felt I needed to respond to her and, after writing, decided my message should be shared publicly with all of you.

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Dear Miss Manners,

I read your recent response to the gentleman inquiring about testing his blood in public. While you are certainly entitled to your opinions, your response shows  ignorance and lack of education about type one diabetes (T1D), as well as a lack of compassion for those living with T1D and their caretakers. As a father of a three and a half year old with T1D, I must say that I was completely appalled by your response.

My daughter, Isabella, was diagnosed with T1D in August 2012, just two weeks before her second birthday. She spent four long days in the hospital after her diagnosis while the doctors pumped her tiny body full of insulin. During that time the doctors and nurses educated us about type one diabetes, an autoimmune disease that we knew nothing about until that moment. We learned that had we not caught some of the symptoms early on, our daughter may have slipped into a coma or worse in a matter or days. We learned that our daughter’s life would never be the same. We also learned that we would have to check her blood glucose levels at least 8-10 times per day, count every carb that she consumes and give her insulin injections at least four times per day.

 This became Isabella’s new “normal” life. What we know, and you likely do not, is that failure to closely monitor her glucose, properly count carbs or administer precise amounts of insulin could ultimately lead to our daughter’s death. Therefore, I view every single moment of every single day (awake and asleep) as an emergency. Our daughter’s life literally depends on frequent blood checks and insulin. We have always checked Isabella’s blood in public and administered insulin injections in public, as well. We have always taught Isabella that T1D is a part of her life and she should never be ashamed or embarrassed about it, nor ever let it define her. And, even at three and a half years old, she has embraced her diabetes, checks her own blood sugar and loves talking about her diabetes with anyone that will listen. We would never suggest that she stop doing any of those things because there is a chance that it might make others uncomfortable.

Isabella now wears an insulin pump that is physically attached to her body at all times. We are often asked about the device, which gives us an opportunity to educate others and raise awareness at the same time. I would never even think about covering it up simply so that no one else can see it (so they don’t become uncomfortable about my daughter’s diabetes, I suppose, according to your logic).

The reality is that Isabella is different than other kids, including her triplet brother and sister….however, we would never make her feel different and ashamed by hurrying her off to the restroom every time we have to check her blood sugar when we’re out in public. We believe it is extremely important that she is completely comfortable talking about her diabetes and the effects it has on her life, physically and emotionally, now at only three and a half years old and as she gets older.

We want Isabella to share her story with the world. As her parents, that’s exactly what we have been doing for the past year and a half and will continue to do so until a cure is found for our daughter and millions of others living with this terrible disease. I can assure you that observing a simple finger prick is nowhere near as uncomfortable as what my daughter and millions of others go through every day of their lives.

Your column only motivates us even more and reminds us that we still have a lot of work to do to educate others and raise awareness.

-Greg Dooley

www.InspiredbyIsabella.com

#TeachableMoments

Screen Shot 2014-02-14 at 2.06.08 PMWords can’t express how jazzed (yes, I said jazzed) Isabella and her siblings were this morning for their big Valentine’s Day party at school. It was so wonderful to see the true excitement on their faces when I told them they could FINALLY give their Valentine’s to their classmates.  I asked Isa if she would share her treats with me when she got home from school and a huge smile spread across her face.

“I’m going to get treats? What kind, mom?”

“I don’t know, chica.  I think you’ll probably get some cards from your friends and maybe some candy or cookies.”

“YAY!!!!!”

And just like that her day was made.

It’s days like today that I’m glad Isabella can’t read yet. It’s occasions  like Valentine’s Day and Halloween when I get to witness just how much misunderstanding and lack of education there exists about diabetes, both Type 1 and Type 2.

I am a regular Twitter user and we use our @InspiredbyIsa account to share info about our experience with T1D and  follow our friends in the Diabetes Online Community (DOC).

Two hashtags today, when combined, made my heart sink: #Diabetes #Valentines.

I don’t think I need to explain why…instead I’ll just share a sample of what I saw with all of you.

This. This is why we are doing what we are doing to raise awareness.

And you know what?

Today Isabella WILL come home with diabetes.  Just like she has for the past 535 days…just like she will until a cure is found. And she WILL share her treats with me.

Cheers to Changing the World~
Kristina

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

 

When Routine Is Not So Routine

surgery2On Monday Isabella had two fairly routine surgeries…one to remove a small, pea-sized bump on the left side of her neck (she was born with it) and another to insert tubes in her ears (we wouldn’t have known about the fluid in her ears if she hadn’t see the ENT doctor about the bump on her neck!). As parents of a child with type one diabetes, you quickly learn that “routine” procedures are never quite routine anymore. You have to be prepared for everything.

Isabella had known about her surgery since the day she met with the doctor. She knew that the doctor would make a cut in her neck to take out the bump and also knew that he would put some tubes in her ears.  She understood all of this as we talked with her about it several times…yet I never really saw her show any signs of fear or anxiety. In fact, in the weeks leading up to her surgery, she loved telling her brother and sister that the doctor was going to remove her bump and put tubes in her ears. She told them as if to rub it in that SHE was going to the doctor and THEY weren’t (our kids love doctor visits!).

The night before the surgery I went to check Isa’s level before bed and heard her say in her sleep, “blah, blah, blah…tomorrow…blah, blah, blah.” At that moment, I knew that she was nervous about the surgery. I sat there thinking what a strong, brave and courageous little girl she is, a fact I’m reminded of on a daily basis. I corrected her low blood sugar, something that would be more difficult in another hour since she had to fast after midnight and up until the surgery (not an ideal situation for someone with T1D!). A few hours later she climbed into our bed with a fever, a cough and tears. She tossed and turned for the next several hours until we woke her to leave for the hospital.

We arrived at the hospital early in the morning, about two hours prior to her surgery.  After registering Isabella they called us to one of the hospital rooms where we met with a nurse.  She started asking us questions about Isabella’s diabetes. Isabella was being very quiet and shy.  Then we were visited by a child life specialist, who really made Isabella feel comfortable and she started to come out of her shell.

Unfortunately, Isabella’s cough had gotten a bit worse and her fever was starting to come back. The anesthesiologist expressed some concern and we thought that they might cancel the surgery. While we were hoping the doctors would make the best decision to ensure our daughter’s safety, we really didn’t want to reschedule the surgery for another day. Thankfully, they decided to move forward with the surgery.

The doctors and nurses “huddled” in our room…and discussed the surgery to align their team and also ensure that we knew what was going on. It was a bit unnerving because we really didn’t know up until that moment if she would be able to wear her insulin pump during surgery and recovery (which would have been approximately 3 hours without basal insulin from her pump); we were prepared for any scenario, including an overnight stay. Luckily, the doctors agreed she could wear her pump during surgery.

At this point, I checked Isabella’s glucose…she was at about 90, which is generally a decent level; but, she still had insulin on board, which meant she would be dropping lower. This was concerning, especially given the uncertain effects of the anesthesia and her cold. After a bit of discussion, the doctors agreed to let us give her about 2.5 grams of glucose gel, which we were hoping would be enough to combat the insulin, while they prepped her for surgery and hooked her up to an IV (which they could use to give her glucose, if needed).

As we weren’t permitted in the operating room this meant the anesthesiologist would be in charge of monitoring Isabella’s glucose levels and applying insulin, if needed. We knew she would be checked at least once per hour and they would handle corrections as needed, but we had no idea how her body would react to the anesthesia, so we were quite nervous. It didn’t help at all when the anesthesiologist turned to me and asked, “Can you show me how to use her pump?”

I nearly grabbed Isabella and ran for the exit! I took a deep breath and literally gave a 5 minute crash course on how to use her OmniPod. I really wasn’t feeling too good at that moment. I calmly began to explain all of the backup supplies in her kit, including the insulin pen in case the pod stopped working or in the event they had to remove the pod unexpectedly.  I felt like I was being rushed along since they were getting very close to the surgery start time. I kept thinking I was forgetting some important detail.

Surprisingly, I was not at all concerned about the actual surgical procedures they were about to perform, but I was terrified about the uncertainty surrounding Isabella’s T1D. As much as I tried not to think about it, I couldn’t help but recall the recent national news story about a young girl who went for a “routine” procedure, which ended tragically for her and her family. That was without T1D involved.

The anesthesiologist told us it was time for Isabella to go back to the operating room and be prepped for surgery. Isabella, of course, chose to have her mommy join her while they applied the anesthesia. I gave Isabella a kiss goodbye and told her I loved her and that I would see her soon. Isabella, Kristina and the doctor left the room and there I was standing all alone, with tears welling up in my eyes. I sat down and prayed that my little girl would be protected and that her doctors would make the right decisions to ensure a successful surgery and quick recovery.

A few minutes later, Kristina returned and we left for the waiting room. While we waited, we received periodic updates on the pager provided by the hospital. This was a nice feature as it kept us up to speed on the surgery.  That being said, I nearly jumped out of my chair the first time the pager vibrated. Luckily, it only read, “Surgery began at 9:59am.” About 30 minutes later, another alert read “Patient still in surgery. Everything’s going well.” Everything’s going well! What great news!

It wasn’t until after the surgery when we met Isabella in recovery that the doctor told us that her blood sugar dropped to 60 during surgery, at which point they started glucose through her IV drip and she began to slowly climb back up. It was probably a good thing that we didn’t know that as we would have both been a nervous wreck.

Isabella was sleeping soundly and looked so cute laying there. I sat there watching her sleep with an IV, heart rate monitor and various machines beeping in the background.  My mind immediately took me back to August 28, 2012 when Kristina and I sat in a similar hospital room in Mexico City shortly after Isa was diagnosed with T1D. Seems so long ago.

Then Isa started to move around a little bit as she was waking up. I jumped up from my seat and gave her a kiss on the forehead and told her she did so well and that I was so proud of her. The nurse said we could pick her up and hold her. Isabella, of course, wanted mommy to hold her (I’m sensing a pattern here!). She was very happy when they brought her a “purple-flavored” popsicle, her first meal since the night before.

All of the nurses and doctors kept commenting on how mature Isabella is and how much older she seems. Unfortunately, her life is not that of an average child due to her T1D. She has been forced at such a young age to exhibit strength, bravery and courage that most adults, including myself, have not had to deal with in their lifetimes.

I am truly Inspired by Isabella. Are you?
~Greg