Tag Archives: T1D

Hole-y Swim Fingers!

Hole-y diabetic swim fingers Batman!

Extended periods of time in the pool give everyone wrinkly fingers, but time after time I’m shocked by what happens to fingers that have been pricked hundreds and hundreds of times.

Normally they just have small marks, like polkadots, on their finger tips. But when the skin shrinks up and gets wrinkly they look like tiny little sponges!

The kids gets a kick out of it, for now.

These are Luke’s fingers, after 4 years of blood glucose checks. I wonder what they will look like in 10 more years. Does this ever go away?

The Disappearing Gingerbread House

Evie made a spectacular gingerbread house in her class on Wednesday! It was great fifth grade Christmas fun. She brought it home carefully and put it on top of her dresser.

Evie and her gingerbread house

Note the presence of a roof. And the copious amount of candy decorating the roof and yard.

This….is the same house, this evening:

Pilfered gingerbread house

I was perplexed why her blood sugar was 476 mg/dL at 1:00am, but I think I have a pretty good idea now of what happened!

Anyone else have a T1D with a massive sweet tooth?

An Amusing 2 am Blood Sugar Check

Things like this remind me that the fingers I’m poking belong to a six-year-old boy. Luke rocked his beloved new skate gloves all through the night. Good thing they are fingerless!

All For A Free Shower

“Mom, I only have 6.7 units left in my pump.”

These words were uttered during breakfast this morning, about five minutes before we were set to leave for school. Five. Minutes.

Evie is fairly self-sufficient with her insulin pump. Self-sufficient in that she knows how to perform the operations herself, not so self-sufficient that she notices and acknowledges things like low-reservoir and missed-bolus alarms. This happens a lot. Luckily, we’re pretty quick with the set changes.

Ok. FIve minutes. I can do this. She has to finish eating anyways.

But then, Evie made an impassioned plea to save her set change for after her pre-birthday-party shower this afternoon. Could she do an injection bolus for breakfast and lunch and save the rest of her pump insulin for her basal needs for the day? After my shower? Please?

Oh, sweet girl.

I take for granted the ability to simply take a shower without having a medical device adhered to my body. If you’re a pump wearer, it must feel really, really great to be able to soap up without worrying about scrubbing your infusion set off in the process. To have your body completely free of adhesive tape and invasive plastic cannulas, if only for the time it takes for a good, long shower.

So we’re doing a combination of injections and pumping today to get her through to that highly-anticipated free shower. It’s sure to confuse the Bolus Wizard–the name given to the complicated algorithms the pump uses to calculate dosages–but that’s what our backup brainpower is for.

If that’s the normalcy she is craving today, then we’ll do the extra work to help her find it.

Halloween Prep: It’s Scary Out There!

Halloween. Witches, skeletons, goblins, and ghouls. Angsty teenagers in horror movie costumes. Scary indeed. But what’s even scarier for a type 1 mom?

Sugar.

Gobs of it. At school, at the store, even in my own kitchen, where a huge bag of mixed fun-sized candy sits waiting for Wednesday night’s trick-or-treaters.

I loved Halloween as a kid; coming home with 5 pounds of free candy and gorging on it for the next two weeks was the highlight of the season. And as a parent, I used to enjoy seeing my kids get excited for the same thing.

In anticipation of massive loads of sugar over the next few days, I’m filling the pump reservoirs with more insulin than usual.

But now the fun-sized Snickers and M&M’s give me nothing but anxiety. Even with the dual insulin pumps, which made candy boluses much quicker and easier, blood sugar management during Halloween is a nightmare. Pockets get filled with treats that mysteriously disappear, candy is stashed here and there (I even found a few Smarties under Luke’s pillow yesterday morning), and everyone loses track of how many pieces of candy corn they’ve munched on.

And even if we bolused absolutely perfectly for every bit of sugar, the quick absorption outpaces the action of the insulin and pretty soon….hyperglycemia craziness.

What to do? One mom saves the 15-gm carb candies to treat low-blood sugars (Skittles are tastier than glucose tablets!) and cuts out a few parties. Read her great ideas here. It also helps to be prepared with carbohydrate counts. Paradoxically, fun-sized candies aren’t required to have Nutrition Facts labels, which makes bolusing a real challenge. How many carbs do you suppose that Charleston Chew has? Arming yourself with the relevant numbers is key: here’s a good chart. And another one here and here.

We’re in the process of Halloween candy negotiations right now. I’m going to let my kids have whatever candy they want on Halloween night, save some for treating lows later, keep a few for after-meal treats the rest of the week, and then buy the rest off of them. We’ll see how it goes.

The Ninja, Abby Bominable, and Camo Guy (what IS this costume???)

Diabetes Family Camp: Laugh. Cry. Bolus.

I wrote last month about our opportunity to attend ConnecT1D’s Diabetes Family Camp in Seattle, and how excited we all were for the weekend. Evie has gone away to diabetes summer camp for the past couple of years on her own, but this was the first camp that we’ve attended all together with other Type 1 families. We were ready for an adventure!

We skipped their half day of school on Friday and made our way leisurely through Seattle (“look, Mom, the Space Needle!”), playing a little along the way, and then headed North to the retreat center. After we checked in, met the camp directors, and found our cabin (double bunk beds!) we gathered in the meeting room with the other families for orientation. Then off to bed for a good night’s rest.

The morning started off with a bang, with a keynote presentation by a family psychologist that had me tearing up in my seat. The topic was parenting and diabetes and he touched on standard issues like discipline and family dynamics, but also addressed more tender topics like grief and loss. He asked us to reflect on our diagnosis stories and my chest tightened. We have two of those; they are different, but equally painful. Being in a room full of other parents who I knew shared similar stories and experiences made it a little easier to confront those memories and emotions.

Photo Credit: Kristine Burtner. Everyone gathers together in the center of the meeting hall to get to know one another.

Photo Credit: Kristine Burtner. Three teens with type 1 diabetes share their stories and answer questions

Photo Credit: Kristine Burtner. Parents and caregivers listen together to the presentations.

Other sessions that day included a research update, a panel to discuss diabetes in the school environment, and a small group session in which we all shared tips and for living and coping with diabetes in our families. This hour or so of more intimate and open discussion was my favorite part of the weekend. Groups included caregivers with newly diagnosed kids, some who have weathered years and years of diabetes in their families, and everything in between. My group even included another set of parents that had two kids with diabetes.

Even though I’ve been parenting diabetic kids for four years now, I was a sponge, soaking up information and experience like I was a newbie. It was so comforting to be surrounded by other parents who Understand—other adults who have to navigate school policies and holiday parties, wake up multiple times during the night to check blood sugars, and learn to live with a complicated disease that has unpredictable and ever-changing effects on their kids and families. We could all look at each other, recognize that underlying burden of physical and emotional fatigue we wear like an old sweater, and say “I get it.”

I hope that my kids had similar feelings of solidarity. Evie and Luke go through most of their daily lives being the only kids with diabetes, singled-out by blood sugar checks, trips to the health room, and well-intentioned but isolating comments from teachers (“Please avoid sending sugary treats because we have a Diabetic in our class…”).

I expect that it’s a relief to be in the company of other kids who have to stop and pull out a medical device before tearing into that mid-morning granola bar and bag of pretzels. And whatever your age, its fun to swap “war stories.”

This one time I had a vampire cannula and my tubing totally filled up with blood!! 

Don’t you hate it when your mom pushes too hard on the lancet and your finger is still bleeding three hours later??

One morning my school served french toast sticks that had 300 carbs per serving and I had to do TWO injections just to cover!! (Er….WHAT??)

Evie offers moral support to friends about to have a blood test.

Siblings of kids with diabetes also need peer support, and I was happy to see Will interacting and making new friends. I doubt, at eight years old, that he engaged in any conversations specifically about his feelings and experiences being a middle child sandwiched in between two kids with major medical issues, but he certainly saw that he wasn’t alone, and that was the whole point of camp. So that none of us would feel alone in our circumstances.

Photo Credit: Kristine Burtner. Evie plays carpet ball with a fellow camper.

I hope to go again next year and see many of the same families I met. Evie collected some e-mail addresses and is already busy keeping in touch. And Will asks me nearly daily if I’ve heard from his new friend’s mom yet.

But the most important take away for me was the realization that support and connection with other people who live with diabetes is vital. Not only to share information and resources, but to have people that can laugh with you when you make jokes about infusion sets and low blood sugars, panic together at the empty coffee pot, and not bat an eye when you cry over breakfast conversation. People who “get it.”

See you next year!

Evie is enjoying keeping in touch via e-mail with her new friends from camp.

Little Fingers

“A mother’s arms are made of tenderness and children sleep soundly in them.”

—Victor Hugo—

As I checked Luke’s blood sugar tonight, sitting on his bed in the dark squeezing a drop from his finger, I was overcome with both a roaring love and a blistering sadness. Images of his fantastic smile, enthusiastically loud storytelling, gentle and loving pats on my back, careful and imaginative drawing–all the things that endear him to me–conflicted wildly with the memories of the many times I have caused him pain and made him bleed. Days and nights just like this one.

I kissed his small, bleeding finger. And then kissed his cheeks, and nose, and forehead, and rumpled his hair, until he wriggled away in his sleep, completely, blissfully unaware of my torrent of emotion. Ah, such is parenting.