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

Reflections From A Substitute, Substitute Pancreas (AKA: Aunt Shelly)

As we sat in the airport club waiting to board our flight to Las Vegas…our first trip away from our children and since Isabella’s diagnosis…I sent a quick text to Isa’s Aunt Shelly: “Would you be interested in writing a guest blog about your experience managing Isa’s diabetes this weekend?” Her response: “That would be awesome.”  So, here you have it:)
——————

 

Isabella and her Aunt Shelly

Isabella and her Aunt Shelly

Last summer my brother asked me if I would watch the trio so he and Kristina could have a long weekend away.  “Absolutely,” was my response.  In December, Greg decided to surprise Kristina for Christmas and take her on a 4 day trip to Las Vegas right after New Year’s and asked if I was sure we were ok with watching the kids.  Again – “absolutely,” I said. I realized that I would be charged with not only adding three 3 year olds to our family of 4 kids, but I would be managing Isa’s T1D. The fact that I was entrusted to take care of Isa was an honor that I didn’t take lightly. I knew I was up for the challenge and off they went…..

Greg and Kristina dropped the kids off on a Wednesday night and thus started Isa’s monitoring.  I was given some base numbers to decide if I should check her in the middle of the night or not, but had already decided that I would feel better just getting up and checking her to be sure all was ok. This meant that I would be checking her around 11:00pm before I went to bed, and then setting my alarm to check her at 3:00am.

Over the next few days I realized that having T1D is very much like having a newborn again. Her glucose must be checked every 2-3 hours and she eats something after each check while inputting her carb counts into her OmniPod insulin pump.  I’ve never had to worry about what food or snacks to give my own children. I just feed them whatever we are having and if they want a few cookies after dinner then so be it.  With Isa, that is so different. I wanted to ensure that each meal and snack had what she needed to keep her levels in check. Overall, I think it went pretty well. She had a day of some higher numbers that really couldn’t be explained unless it was from the one small cookie that she had the day before. She also had some lower numbers in the middle of the night that I offset with some glucose gel to ensure she didn’t drop too low before she awoke. I now know that sometimes, no matter how accurate your carb inputs are or how much you do right, you just can’t explain some of the high and low numbers.

Throughout the 4 days everyone in the house was checking Isa’s glucose for her and at one point she said “Aunt Shelly, none of my cousins are checking me today.” She loves her cousins and definitely feeds off of the attention they give her.

On Saturday morning I was cleaning up from breakfast and all the kids were in the basement playing. I went down to see what they were doing and they were all lined up in front of Isa. I was told that she was “checking” everyone’s levels. It was so cute that they were all pretending to have their fingers pricked, but also sad when I thought about the reality of this for Isa.

Isa had to have an insulin pod change while she was with us as they expire after 3 days. We started the process and she was very positive. She told me it would hurt when the needle went in. I asked her to squeeze my hand to help her. She didn’t even flinch and had not one tear.  That was a proud moment for me.

The day came for Mom and Dad to pick up the kids and I must say I was a bit sad.  As busy as we were taking care of all of them and especially taking care of Isa, I felt a bit empty at their leaving.  I feel honored that I would be trusted to take care of Isa’s life because that’s basically what I was in charge of. Isa’s levels must be monitored constantly and the insulin she receives keeps her alive. I have a whole new respect for this little girl. While she has T1D, the reality is that she’s just a little girl that doesn’t really have a clue of the enormity of the card she has been given in life. I am confident that her independent attitude will take her wherever she wants to be. She lights up the room with her laughter and smile. I will be right there with her along this journey and am thrilled that I get to be her aunt.