Archives for January 2015

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

Why we continue to fight

As the father of a small child with type one diabetes, I’m somewhat forced to live in a state of constant uncertainty and worry. Type one diabetes is like a never-ending roller coaster of numbers, highs/lows and emotions. Although Kristina and I have always approached diabetes management like we do most challenges — as a team and with the most positive outlook possible — it’s often hard to not let T1D-related questions and concerns consume my every thought.

Did I count those carbs correctly?

Did I give her enough insulin? Too much insulin?

What’s her current number? Is she going up or down? Why? Why not?

Did her insulin pump stop working? Did the insulin go bad?

Is she sleeping? Or is she unconscious?

That last question is by far the biggest worry. I’ve gone into Isabella’s room in the middle of the night to check on her countless times since her diagnosis more than two years and each time I wonder (even if for only a split second) if this will be the day that Isabella suffers some sort of life-threatening diabetes-related complication. I pray that day never comes. But I also pray that Kristina and I will have the strength to deal with it if it does.

Unfortunately, on June 9th, 2014 that day came for Katie Schwab and her family. Katie, a recent college graduate living with T1D since 2008, was found unconscious as a result of diabetes-related complications. One day Katie was fine and the next day she was in a coma. No warning. Just like that.

Katie and her family are now 7 months into their journey. Katie endures physical, speech and occupational therapy sessions on a daily basis. Her recovery is progressing, but at a slow pace. Importantly, she is surrounded by the love, support and prayers of family and friends. My thoughts and prayers are with Katie and her family as they continue along their journey.

Katie’s story is an unfortunate reminder of why we continue to fight…not just for our Isabella, but for Katie and millions of others living with type one diabetes.

-Greg

You can watch more about Katie’s story here: