Between Avalanches

Maybe I was experiencing caregiver burnout and didn’t recognize it as such. I kept doing everything I was supposed to do: count carbs, give insulin, check for ketones. Since the election, I’ve been calling and writing my representatives in an effort to persuade lawmakers that people with pre-existing conditions need assured access to health care. I called while waiting at urgent care. I called before breakfast. I started to believe it didn’t matter how many times I called, but I called.

I tried to make peace with the fact that many of the people I love support the current administration that is creating policy that hurts my son.

I did what the insulin pump told me, and sometimes his blood sugars wouldn’t go below 200. I rage bolused.

I raised money for diabetes research. I tried to prioritize moments where he could be a kid instead of a kid with diabetes.

There were trips to the E.R. for minor diabetes related things, battles with insurance, problems with pump supplies, stubborn blood sugars, anxiety at site changes, surprise bills that arrived six months after date of service—all the “normal” things related to living with diabetes.

But there was also Friends for Life, an amazing conference in Orlando that focuses on type 1 diabetes. All the food is carb-counted, and it’s the only week of the year where diabetes feels “normal.”

While at the conference, we heard Dr. Ponder’s Sugar Surfing talk, and when we applied his principles, Henry was in range for 99% of the day. It was the best blood sugar day we’d had in the past 90 days.

Yesterday, while the Senate voted to continue the process of repealing or repealing and replacing healthcare, we had our Endo day. If you don’t speak diabetes, Endo day is when you meet with your endocrinologist, and in addition to the usual conversations of insulin to carb ratios, insulin sensitivity factor (more math than I had in Algebra I), there is a test, the A1C test, which is used as a general measure for how well you’re managing your diabetes.

It’s probably against the DOC (diabetes online community) to admit that I’m sometimes excited for this test, because I’ve always liked tests. I find them an interesting metric. So when I’ve been slaying carb-counting, micro-dosing insulin, not sleeping through the night, and setting a timer for a real pre-bolus, I’m excited for the A1C.

Not this time. The Dexcom alarm would predictably go off over 220, and my husband and I would look at each other, willing the other to act first, to slog upstairs and deliver what felt like the hundredth dose of insulin that day. His high blood sugars made me feel helpless, and because I don’t like to feel helpless, it was easier to turn that feeling into apathy. I slept through high alarms. When we went out to eat, I didn’t try to hide the option of french fries on the kids’ menus. I was certain his A1C would be much higher, reflecting our summer vacation mode and my burnout.

Instead, it was his lowest A1C yet, (and not because of lows). The A1C reflected our recent change to sugar surfing, “working the line,” as Dr. Ponder says. It reflected the fact that I’m no longer afraid to call a restaurant meal 100 carbs, to use the fancy pump settings like temp basal and combo bolus. To rage bolus, just a little.

Our endo stayed and talked with us half an hour after the office closed. Guess what we didn’t talk about? His A1C. As we were leaving, the janitors were gathering trash from the waiting room and neatly stacking the magazines. The lights over reception were dark.

On the hour and half drive home, I listened to NPR report on the Senate vote. I thought of all the things an A1C doesn’t reflect: the anxiety I feel about whether my son will be denied coverage, how he will afford his insulin when he’s older, if he will be forced into a career he doesn’t want because of private insurance—the privilege of that thought.

I didn’t know it yet, but the Endo had made two changes to his basal, and Henry’s blood sugar never dipped low nor rose above 115 all night. I only had to wake up and glance at my phone for the numbers. It was almost like sleeping through the night. Almost.

Hard Questions on World Diabetes Day, and Everyday

November 14th is World Diabetes Day (WDD), a day created by the International Diabetes Federation to bring awareness to the growing concerns surrounding type 1 and type 2 diabetes. Last year, I recognized WWD with the 2015 Type 1 Diabetes Index.  This year, some of those numbers have grown.

 

My son is in his second week of participating in a sport, so I’m new to managing blood sugars during organized physical activities. During his first week of practice, I sat watching the CGM (constant glucose monitor) as it read 120 with an arrow straight down, then the next read out, five minutes later, was 90 with two arrows down. At practice this week, I disconnected his pump, hoping to avoid the rapid drop.

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As I held his makeshift pancreas in my hand, I looked up and saw grandparents taking short videos, parents cheering kids on, siblings sitting through practice, drinking from juice boxes, eating unmeasured food. In one hand was my son’s insulin pump, the other his CGM receiver, and with all my willpower, telepathically, I was willing his blood sugar not to drop any lower, but it was 98 with an arrow down. As I rushed downstairs to give him a glucose tab, it struck me, once again, how different my experience of the ordinary often is, usually because I’m thinking about some difficult diabetes question or trying to do diabetes math, which is impossible, by the way.

For World Diabetes Day 2016, I’m sharing a few of the typical questions I have throughout any given day.

If he’s eating 45 carbs for dinner, with lots of protein, but not much fat, is 1.75 units of insulin enough to cover the meal?

Should I wait 5 more minutes to see if one glucose tab is enough to bring his blood sugar up?

Will the school nurse think I’m overprotective if I call? I just dropped him off at school with 2 units of insulin on board, a glucose tab in his mouth, and he’s 79 with an arrow down. Yes, call. Are you crazy? Why would you not call and tell her this?

Did I give him enough insulin?

Did I give him too much insulin?

Should I explain to the man who just picked up his kid and moved him to the other side of the pool after seeing the medical devices on my son that my son is not dangerous or contagious? Should I tell him it’s OK to ask questions, but not to stare and ostracize?

OK, the packaged pasta says 2/3 cup of dry pasta is 44 carbs. Hmmm. How is dry pasta a useful nutrition fact? Do people actually eat dried pasta?

Why do I feel guilty and lucky at the same time because my son has access to insulin and others don’t?

When I walk in his bedroom this morning, will he be conscious?

Why does he eat the exact breakfast every morning and sometimes he’s 120 an hour after and other times he’s over 300? The.exact.same.breakfast.

What if Henry has kids and they get diabetes?

As I look at his CGM many hours after eating out, I wonder just what exactly is in restaurant food.

When I’m talking to a representative  from my insurance company after they’ve limited my son’s test strips and declared his Dexcom CGM out of network, and I ask this person how much my son’s life is worth, do I really expect an answer? Do I really want them to answer this question?

How will my son handle the burden of type 1 diabetes as a teenager?

Is his sister peeing more than normal? Am I?

After asking for the nutrition information at a national chain of ice cream parlors, do I push it and try to explain for a third time that I’m asking for carbohydrates, which are a very different thing from calories?

When Henry is anxious about a site change, he says, “I don’t want to have diabetes. Why do I have diabetes?” Is it enough to say, “I don’t want you to have diabetes either,” and “I don’t know.”

Those two pieces of pizza are 70 carbs. Right?

After learning of someone else in my local community is diagnosed with T1D, I wonder why the CDC is not tracking the incidence of type 1.

How will Henry respond when some of his classmates stop being curious and start being hurtful?

Sleeping in two and three hour intervals is enough, right?


November is diabetes awareness month. Please consider signing this petition that asks the CDC to start tracking the occurrence of T1D or making a donation to a diabetes organization.

A Time Diabetes Bossed Us

Henry’s recent love of Angry Birds Star Wars on his iPod and the curvy roads back East let us know that he gets car sick. About 40 minutes into our 571 mile trip back from the beach, (which should take about 9 hours) he began to feel sick.

Car traveling jacks up Henry’s blood sugar, so to compensate, we increase his basal temporarily to deliver 80% above his normal basal rate, which usually keeps his blood sugar between 80 and 150. However, one look at his continuous glucose monitor (CGM) told me his BG was falling. I tested his blood for the glucose level and ketones. His blood sugar was 62 and he had moderate ketones. We’d entered the terrible T1D paradox of nausea. Insulin and fluids are what flush ketones out of the system, but with a low BG and a sick tummy, it’s difficult, if not impossible, to take in or keep down carbs so that insulin can be delivered.

I climbed to the back seat and canceled the temporary basal increase. I coaxed Henry to eat or drink any carb he wanted, but apple juice and Airheads made him gag. We pulled into a gas station, and after some really dramatic moments, he managed to swallow a Dramamine with some apple juice. We walked around, and I panicked purchased a number of candies that came in a gel form, a sleep pillow, and a roll of paper towels.

Within half an hour we were back on the road, two arrows up on the CGM, Henry drinking sugar free liquids, insulin delivered, and ketones gone. It took a while before he felt like eating, but when he did, we stopped at a place Henry named. When it came time to place his order, big tears welled up in his eyes, and he said he didn’t want to eat there. Normally, Henry loves mealtime, so this behavior threw us. Finally, he decided on a bowl of rice, black beans, chicken, and cheese, and we bolused for half of it.

Henry ate half, and saved the rest for later. Later arrived, and we bolused for the rest as Henry grazed in the late afternoon. I  watched his blood glucose rise to 200, then 265, then 310, then 381, then HIGH (on a CGM this means it’s above 400). All the while, I rage bolused more insuiln, .5, then .75, then 1.5. I poured on the fluids. With a high blood glucose and lots of fluid, we got to visit no less than 7 gas stations (and a bucolic roadside) before dinner, which we were holding off on until his blood glucose was below 300, so the kids had an 8 p.m. dinner.

Recently, we were at the Friends for Life Conference in Orlando, FL, where the closing keynote speaker challenged the audience to think of how diabetes had enriched our lives. When presented with this question, my first thoughts were sardonic. It’s easy to think of all the negative ways that diabetes has altered my life, and most significantly and importantly, my son’s life. However, the easy type of thinking is not very useful. Diabetes is difficult, and demands a complicated response. The way I see my son is beautifully difficult. I see a five-year-old with a generous spirit, a kid who has endured more medical procedures than me, even though I’ve been alive seven times longer than he has. I imagine the courageous person he is already becoming because he has to live with type 1. Diabetes has allowed me see me son, and yes, I mean, “I see you,” in James Cameron Avatar kind of way: a great empathy that is a heart always breaking open to need and contentment.

Super T1D in blue with blue d-bag. #bluefridays #projectbluenovember

A post shared by Semisweet (@semisweett1d) on

 

A few more gas station stops later, we were finally at our destination eleven and half hours after we started the trip. We’d blown right past bedtime, and when I tucked Henry in he said, “I don’t like diabetes.”

I said, “I don’t like it either. Why don’t you like it?”

“I don’t like diabetes because I have to wait to eat yummy candy like Airheads, and they taste delicious. It’s not fair”

Henry’s starting to realize that his diabetes makes him different. The times when he tells me that he doesn’t like diabetes are hard, and I know it’s imperative for me to be really present in these moments, but my thoughts spill out like paint splatter. Immediately, I think it was a poor decision to introduce candy as a treat for lows. I wonder how we could have been so shortsighted. I think about watching family members who are able to give their kids lemonade, crackers, juice, and candy without a second thought. I’m with Henry, it’s not fair.

“You know what, Henry,” I said. “It’s not fair, but because you have diabetes, that means we take really good care of you, and you’re going to be healthy when you grow up.”

I think about telling him that candy is like medicine for him, but think better of it. I want to keep as much of his childhood diabetes free as I can. I want candy to be just candy.

 

Insulin Pump Meets Atlantic Ocean

Diabetes is often considered an invisible illness. For the first months after our son’s diagnosis, a stranger could look at our kid and not know he was living with a lifelong chronic disease. He was on multiple daily injections (MDI) and didn’t yet wear a continuous glucose monitor (CGM), so no medical devices identified as someone with a disease or disability. However, three months after his diagnosis, he started wearing an Animas insulin pump and Dexcom CGM.

In fact, unless someone knew what to look for (tubing coming from a pump, adhesive peaking below a shirtsleeve), Henry’s diabetes would be invisible to most. But when Henry swims, his diabetes becomes visible.

There are all sorts of pumps and a few CGM’s on the market, all with varying degrees of water resistance. I think the choice of insulin therapy and delivery is personal and specific to each person with diabetes. For us, the Animas pump was a good choice. It’s waterproof, and we devised a way for Henry to wear it while at the beach, so we don’t have to disconnect and manually deliver the basal a couple of times an hour. Henry’s free to play in the hot sun without us worrying about his insulin overheating or losing a pump site. However, to ensure that the site and pump are in good working order (even in salt water) we devised a pretty creative work around. It’s a bit like nesting dolls, but to us it was worth preserving the site and not interrupting Henry’s time at the beach.

  1. Henry wears a contact detach infusion set, and we cover it with a layer of Tegaderm HP, so the site itself is protected from sand, salt, and water.
  2.  The next step was to secure the pump. We placed it in a ziploc bag, with the tubing coming out at the very edge. Then we secured the opening with gaff tape.
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Opening secured with gaff tape (upper middle)

 

 

 

 

 

 

 

 

3. Next, we placed the pump in its ziploc bag in a FRIO insulin pump wallet, so that the insulin didn’t denature in the heat, and then placed the FRIO pump wallet in a SPIbelt. (I told you it’s like nesting dolls!)

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rocking the SPIbelt

4. Hang the d-bag from the sun shelter and enjoy a preserved site and pump.

Teacher, Caregiver, Nurse, Friend, and Advocate

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who will share their experiences of learning about Type 1 and managing it in a preschool classroom. “Teacher, Caregiver, Nurse, Friend, and Advocate” is by Alexis Johansen.


Diabetes. A word you rarely hear when going through college as an education major. You discuss behavior and disability interventions, teaching strategies, classroom management, and anything else that will prepare you to become a successful classroom teacher.

However, I heard “diabetes” entering my second year of teaching. My co-teacher and I were told we were going to have a child who was recently diagnosed with Type 1 Diabetes in our classroom. I cannot speak for my co-teacher, but my stomach felt very uneasy. I was worried to take on such a huge role with something I knew very little about. Many thoughts ran through my head. How do I care for a child with diabetes? Will I know what I am doing? How are we supposed to keep him safe? And most of all, how do I give him 100% of my care when I have 19 other 4 and 5 year-olds who need the same?

Unlike many public primary and secondary schools, preschools are not usually staffed with nurses, so my co-teacher and I were going to take on the nurse roll. We were in charge of keeping our little friend safe, and really when it comes down to it, alive. His parents put their trust in us to care for their child, while they themselves were still learning about caring for Type 1 Diabetes.

Not only did we have to take on this “nurse” and care giver roll, but we also had to learn to balance diabetes and the rest of the class including Henry. We were still the teachers, we were still Henry’s teachers.

Fast forward two years later, as I near the end of my time with my sweet little Henry, and all the care is now routine. But that wasn’t always the case. I think back to the first couple weeks of school, when we were learning and reading about Type 1 Diabetes. For instance, a typical day for all involved includes the following (keep in mind there is no such thing as a typical day in the diabetes world🙂

  • Between 5-10 finger pricks a day
  • Delivering insulin every day and multiple times a day
  • Counting carbs for lunch, snack, or a special cooking activity
  • Doing a pre-bolus (insuin given before a meal) for lunch along with a combo bolus (insulin given over a duration for high carb and fat foods like pizza)
  • Giving rescue carbs (glucose tabs or juice box for a low at any given point)
  • Correcting a high with an EZBG (more insulin) multiple times during the day
  • Communication with parents via group text, emails, phone calls when needed
  • Countless checks on his monitor, our personal cell phones, or his iPod

I’d say after two years, we have this balancing act figured out pretty well. There are still times where I find myself explaining to another 5 year old what a glucose tab tastes like (a gigantic smartie) or why Henry gets to have a juice box or cheese stick at random times during the day. This is all part of the balancing act. As a class we all come together to accept diabetes as part of OUR norm. This is just part of our day. The kids see us do blood checks, give rescue carbs, and give more attention to Henry at some parts of the day. But do you know what? They don’t think twice about it. They may ask a question or two, but curiosity is what makes our children learn and grow.

As I sit here typing this post, constantly checking my phone to see what his numbers are during rest time, ready to text my staff at any point, it makes realize that I have come to many conclusions and have my own thoughts about diabetes.

First of all, I love FREE FOODS (a no carb food)! The best food there is when you don’t have count carbs, knowing Henry loves them as well. To this day, my heart will always skip a little beat when I see double arrows down on his CGM (continuos glucose monitor). Pizza day is a bittersweet because I know there will always be a high and then there will most likely be a low. Exit signs, pointing with their arrows, will always remind me of Henry and his CGM (a devise used to read his blood glucose with arrows showing which direction his blood sugar is headed). Lastly, I thought Type 1 Diabetes was going to diminish my ability to teach the class, but really it made me the best teacher, caregiver, nurse, friend, and advocate that I could possibly be.

I will not look back and remember the scary lows or the difficult math (not my strong point) when it comes to figuring out carbs in a given meal or treat. I will not look back on the extra time it took to try and fully understand Type 1 Diabetes. I WILL look back and remember that little boy who took every finger prick like a champ, who made lows not so scary, who gave me the giggles when I was stressed out, who was so excited to see his blood glucose numbers (when sometimes I was dreading it), who, in all reality, gave me a whole new outlook on life. No, I will not remember Henry as the child we had with Type 1 Diabetes. I will simply just remember him as my sweet little Henry. A strong little boy who didn’t let diabetes define who he is.

exit signAlexis Johansen teaches in the 4 and 5 year old room at the University of Northern Iowa Child Development Center with her Bachelors in Early Childhood Education. She recently just finished up her third year teaching. Alexis lives in Cedar Falls, Iowa with her newly married husband and her adorable dog that loves to cuddle! When she isn’t at school with her kiddos, she enjoys reading, running, and being crafty at home.

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Lexie and Henry 

When Type 1 Knocks on Preschool’s Door

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who share their experiences of learning about Type 1 and managing it in a preschool classroom. “When Type 1 Knocks on Preschool’s Door” is by Jessie Blohm.


It has been two years since diabetes knocked on the classroom door. Two years ago we were, admittedly, afraid and unknowledgeable. Two years ago, I could have told you the difference between Type 1 and Type 2 only by way of saying that Type 2 was the kind that elderly people can develop and a result of the obesity epidemic. Other than that, I had no idea what the difference was or how much we would learn in two short years.

Insulin, units, blood glucose (BG), meter, lancet, pump, bolus, combo bolus, pre-bolus, etc…the language alone was enough to make my head spin. How were we going to learn all of this in one week, so that we could keep Henry safe at school? It didn’t matter how, it just mattered that we would. A couple evenings of reading The First Book for Understanding Diabetes and a crash course in testing with the meter and we were on our way. Well, not quite that easily, but it did happen that quickly.

I believe that there were 4 key factors that made Henry’s time in our classroom so successful and relatively stress free for his parents.

#1. Caring and attentive parents

Henry’s parents were willing to meet with teachers before the start of school with step by step handouts, powerpoint, scales, cheat sheets— anything and everything they could think of to inform two lead teachers and a handful of college students on how to best care for their son. Rachel and Matt were able to answer questions when we had them, walk us through as new situations like priming the pump or delivering a combo bolus arose. They stressed the importance of realizing that there was no “normal” situation when “managing” diabetes and that so many factors play in to Henry’s numbers on any given day. They gave us a list of our typical snack foods as well as the portion sizes and carb counts, taught us how to weigh foods for lunch, and count carbs in each serving size. We used those cheat sheets religiously and by the end, we were able to take a cooking activity for the classroom, modify the ingredients slightly, and figure out how many carbs were in it so that we could give Henry the correct amount of insulin and most importantly, that he was able to participate in the same activity that the rest of the children were.

#2. Lots of checking…and double checking, and sometimes even triple checking

Before going outside for large motor, “Henry, let’s check you.” While at group, “Anna, will you check the CGM?” While getting ready for lunchtime, “Lexie, will you text Rachel and Matt to check if that amount of insulin sounds correct, it seems high.” Preparing for a center time cooking activity, “Double check my math on this portion size for the cooking activity, do you get the same numbers that I do?” The CGM needs calibrated, “Two different checks (pokes) this time, Henry.” In the beginning, this was a complete tag team effort between us as co-teachers, standing shoulder to shoulder at the counter as we figured the carbs for his lunch/snack/activity. After two years, it was like a well choreographed dance, we were able to have a quick conversation about his numbers that day, make a guess on how lunch/snack/activity would effect his blood glucose, and move between the different roles as lead teacher/lead caregiver with ease….but it took a lot of “checks” to get us there.

#3. Trust

It had to have taken an amazing amount of trust on Henry’s parents behalf to hand over his backpack each day and trust that we were going to stay on top of his numbers, catching any highs or lows from a new breakfast food, our lunch menu, and his activity level. Trust in our student staff and their training when we were out of the room or in a meeting. Trust in the CGM in order to avoid an unnecessary finger poke. Trust in the Dexcom app and knowing that there were 4 sets of eyes randomly checking his numbers throughout the day and sending a precautionary text to whomever was with Henry (teacher/staff), just in case they hadn’t caught it.

#4. Acceptance

In our classroom, we call everyone “friends” and we work hard to promote acceptance, resilience, and kindness. After diabetes knocked on the classroom door, we had a new topic to cover. Sugar. Much like we begin every school year creating that classroom community, we hit all of our usual likes/dislikes, how we all are the same and how we are different, etc. It was decided that we all liked sweet treats and we all understood that too many sweet treats would give us a tummy ache. However, for Henry, his body needed help with the sugar and he had to wear the pump so that it would keep giving him medicine in order to be safe. The children were so accepting of this! They would occasionally take an interest in watching us check Henry’s BG, ask an occasional question, or tell us they heard a beep from the pump, but more often than not, they didn’t even notice anything different! Henry was resilient, could go wash his hands, check his BG quickly, and return to his play with little interference, it was just accepted as part of the classroom routine and community. In all honesty, acceptance, resilience, and kindness are probably the best qualities in young children, and the rest of the class made it easy. I only hope and pray that the rest of Henry’s years of school are equally as accepting and kind to him.

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Jessie and Henry

Jessie Blohm is a teacher and a mother, holding her Masters Degree in Early Childhood Education from the University of Northern Iowa, while earning her Mother of 3 degree at home in her partially remodeled farmhouse in Reinbeck, IA. She lets her kids run barefoot and would rather pick weeds in the garden and drive kids to soccer practice than cook any day.

Sugar Surfing Into Summer

We live in a small Midwestern town, where it’s a winter’s winter about five months out of the year. In deep winter, the temperature (not the windchill, the actual temperature) can reach -24 Fahrenheit. In mid-March, just when the snow, salt, and ice threaten to become a forever feature, there’s a little less gray and the icicles drip away. In the next month, the snow melts, tulips emerge, and the town’s most popular ice cream joint opens for the season. There’s always a line of people and taillights, celebrating a baseball game or summer evening.

Having type 1 diabetes does not prohibit what people can eat. People with T1D can eat anything; however, many people choose to limit or eliminate certain foods simply because it makes blood sugars potentially easier to manage. Right now, we don’t eliminate food, but eat a little bit everything in moderation. When we get an ice cream, it’s a celebration.

Recently, we’ve discovered the power of pre-bolusing and are starting to practice some of Dr. Ponder’s Sugar Surfing advice. It can be nerve-racking to pre-bolus a large amount of insulin for a restaurant meal or special treat, particularly when there’s little control over when the carbs will arrive. Matt is a lot better about waiting out the downward slide than me. I nervously check and recheck the CGM.

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on our way back from the local ice cream joint

But then the sugar starts to kick in— the rise is more gradual and less extreme. The insulin action time better matches the carbs. We’ve figured out if we give enough insulin to cover for 30 carbs that by the time we’re through the line, with a strawberry ice cream baby cone in hand, that his blood sugar usually evens out to about 145 half an hour later. I’ll take a rolling line after ice cream any summer night.

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Hello, summer. 

“I Can Spell to 100”

I didn’t have time to be nostalgic about my youngest kid participating in Kindergarten Round Up, (a preview of elementary school for preschoolers entering Kindergarten next fall). Instead, there was a flurry of emails to the school administration, nurse, and staff. There were meetings, apps were downloaded, and then the morning of Kindergarten Round Up rolled around.

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It’s hard to bolus for emotions.

Just a quick glance at Henry’s face shows how excited he was, and a quick look at his blood glucose on his Dexcom CGM (continuos glucose monitor) shows how anxious he was to attend the same school as his big sister.

Adrenaline is a hormone that’s secreted during stress, and it raises the blood sugar. We’re learning that many things raise or lower blood glucose: a growth spurt, illness, puberty, exercise, emotions, a unicorn jumping over a blue moon after a black cat crosses its path, and just because.

Days before we walked through the school doors, I knew it would be another vacillating moment of living with diabetes: a challenge to preserve the typical experience, while ensuring safety and health. And it was. Henry’s first introduction to school was meeting with administration and the nurse, listening to us talk about his blood sugar. But he’s heard us talk about his blood sugar so much that it’s old news, no news. But Kindergarten, that’s new news. He was bouncing, happily telling everyone, “I can spell to 100.”

And he can spell (and count) to 100. If a blood glucose of 300 is any indication, this kid is excited to go to Kindergarten.

2nd Diaversary: 731 Days of Living with T1D

I like my birthday less than I used to. Of course it still happily marks another year of life to celebrate with friends and family, but March 5th also marks the last day my son would ever not have type 1 diabetes. On March 6, 2016, my son has been living with (diagnosed) T1D for 731 days (there’s a leap year in there), roughly 37% of his life.

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Semisweet Soap (0 carbs)

We haven’t figured out how to mark or celebrate his diaversary, a neologism for the anniversary of a diabetes diagnosis. I think we’ll wait for Henry to take the lead on this. However, I’ve been reflecting on this upcoming date for a few weeks now. Moments like this are mile-markers because they disrupt the routine of counting carbs, insulin delivery, and correcting highs and lows. If I think about the preponderance of diabetes care all at once, it’s overwhelming, so the task-to-task perspective allows me to get up each day, put my boots on, and do it all again. Yet, around these mile-marker moments, I usually peek out the window at the vast appalling and inspiring mountain range that is T1D management.

On March 1st, I recorded all my actions related to T1D care. Here’s one day of T1D care. It’s only one day. Some days are better. Some days are worse. We’ll do it all again tomorrow.


KEY

basal= background insulin being delivered by pump

bolus= a larger amount of insluin delivered at meal and snack to cover carbs

BG= blood glucose

CGM= continuous glucose monitor, provides an estimate of Henry’s blood glucose every 5 minutes

Dexcom Share allows us to see blood glucose values on our phones

ezBG= pump function calculates how much insulin to deliver to correct a high BG

IOB= insulin on board, the amount of insulin that has been administered and is still circulating


12:03 a.m.- check BG by blood, 74 with an arrow down to the side, half a juice box

2:00 a.m. – wake up to alarm, check BG on CGM, 147 with an arrow straight across go back to sleep

5:00 a.m.- wake up to alarm, check BG on CGM, 220 with an arrow straight across, so check BG by blood, it’s really 309, give 1.25 units of insulin, go back to sleep

7:00 a.m.- wake up to alarm, check BG on CGM, 137 with an arrow down to the side, so I get ready for work

7:30 a.m.- check BG by blood, 130, while Henry is still asleep, prebolus 1.5 units of insulin for a breakfast of 25 carbs

7:35 a.m.- help Henry get dressed so that the pump and CGM sites stay secure

7:55 a.m.- Henry eats breakfast, a low carb, sugar free muffin and a scrambled egg with cheese

8:35 a.m.- check BG on CGM 107 down to the side, get d-bag ready for school

9:05 a.m.- drop Henry off at preschool, get CGM on Wi-Fi, check BG by blood, 210, give .15 units of insulin to correct high

9:15 a.m.- listen to a diabetes podcast during morning email and class preparation

10:08 a.m.- text from Henry’s preschool teacher/s: Did another ezBG, I look at BG remotely, 320

10:59 a.m.- right before teaching, look at BG remotely, still 320

11:17 a.m.-text from Henry’s preschool teacher/s: We did another ezBG at 10:30 and it gave another .3. He had 1.07 IOB at the time. 

11:45 a.m.- Husband calls during class, saying he went to check on Henry, who has large ketones. Pump said to give 6.6, but this would be way beyond the most insulin Henry’s ever had at once, and it made my husband nervous, so he gave Henry 5.6 units of insulin to correct for large ketones and cover his lunch of grilled cheese and tomato soup. 5.6 is the second highest amount of insulin Henry’s ever had on board.

12:01 p.m.-look at BG remotely, 329 with an arrow up at the side

12:15 p.m.- listen to voicemail from drugstore about prescription problem with test strips

12:45 p.m.- while on a way to a meeting, read text from husband: I called the school and told them to go ahead and give the additional unit I was worried about, look at BG remotely, 363 with an arrow up at the side

1:15 p.m.- during meeting, unsuccessfully try not to think of Henry’s ketones and blood sugar

1:53 p.m.- text from Henry’s preschool teacher/s: We gave another unit and are continuing to push water. Will have cheese stick and beef stick for snack, husband texts back and asks that Henry be given 1 additional unit of insulin to help clear ketones.

2:30 p.m.- look at BG remotely, 263 with an arrow straight across

2:33 p.m.- look at BG remotely, 260 with an arrow straight across

2:38 p.m.- look at BG remotely, 260 with an arrow straight across, realize I have to stop obsessing and get some work done

3:08 p.m.- look at BG remotely, 141 with double arrows down, which means Henry’s BG is falling faster than 3mg/dL per minute, text to his teacher/s: Now he’s falling fast! What’s his real BG and how much IOB? 

3:16 p.m.- look at BG remotely, 111 with double arrows down, call classroom and talk with student worker who tells me that IOB is 1.16, I tell her to give Henry 2 glucose tabs, text husband this information

3:25 p.m.-look at BG remotely, 95 with double arrows down, I tell myself I am a logical person, that the sugar will do its job and the CGM is lagging, so he’s probably leveling off, not spiraling down

3:29 p.m.- text from Henry’s preschool teacher/s: 97 and .92 IOB, gave two tabs 15 min. ago, CGM says 84 with double arrows down

3:58 p.m.- look at BG remotely, NO DATA

4:16 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across

4:31 p.m.- my phone buzzes with a Dexcom alert, I check, says he’s 64 with an arrow straight across, then Henry walks through the door with his papa, who said his BG by blood was 112

4:46 p.m-. my phone buzzes with a Dexcom alert, I don’t check, knowing it’s still catching up form the fast drop

5:40 p.m.- check BG by blood, 95 and prebolus 1.4 units of insulin for a dinner of 40 carbs

6:10 p.m.- during dinner my phone buzzes with a Dexcom alert, CGM says BG is 74 straight across

7:00 p.m.- check BG on CGM, 121, an arrow straight across

7:28 p.m. – help Henry change out of his clothes and into his pajamas to preserve pump and CGM sites

7:32 p.m.- check BG by blood, 111, give .55 units for a high protein bedtime snack of 11 carbs

7:40 p.m.- add some new basal times and programs to avoid nighttime highs, which have been more or less constant for the past few days

7:56 p.m.- check BG on CGM, 160, an arrow straight up

8:56 p.m.- check BG on CGM, 157, an arrow straight across

9:32 p.m.- check BG on CGM, 134, an arrow straight across

9:46 p.m.- silence reminder alarm from pump to check BG 2 hours after insulin delivery

10:10 p.m.- check BG on CGM, 181, an arrow straight across

10:39 p.m.- check BG on CGM, 177, an arrow straight across, decide to check BG by blood, 209, give .7 units of insulin

11:32 p.m.- check BG on CGM, 168, an arrow straight across

11:42 p.m.- check BG on CGM, 158, an arrow straight across, set alarm for 12:40 a.m., 3:00 a.m., and 6:00 a.m.

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today 

 

 

When New Recipes Go Wrong

Welcome to type 1 diabetes: where you should know how much you will be eating, when, and what it’s made of— it’s like having a meeting to plan a meeting for the meeting.

Our son’s blessing (and curse) is that he loves food. Two weeks after his diagnosis at three-years-old, we started pre-bolusing because we knew he’d eat the food on his plate and probably ask for more.

In our house, no food is off-limits, but we try to eat locally and responsibly: a little bit of all things. We’ve observed vegetarian diets, belonged to a CSA, garden, and eat fast food on a bi-annual 1,700 mile road trip.

A little bit of all things. All this is to say, in general, we read nutrition labels, understand them, and conduct a quick benefit analysis for the food and occasion. If you read nutrition labels, you’ve probably figured out that about half of the shelf-stable food sold in the typical American grocery store should be a rare treat instead of a staple.

No food is off-limits for our child with T1D, but we’re using our insight of carbs and insulin (that we can see with a Dexcom) to inform more of our family meal and food decisions. Lately, I’ve been experimenting with a few substitutions: almond milk (1 carb per cup, instead of cow’s milk, 12 carbs per cup), applesauce and ripe bananas as a sweetener, almond meal and coconut flour, and chia seeds. We rocked a post breakfast BG with these Paleo banana chia bites.

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An ounce of chia seeds contains 12g carbs, 11g fiber, and 4g of protein. I was fairly certain we’d come across a diabetes superfood. Then I made this chocolate pudding, that uses dates as a sweetener, almond milk, cocoa powder, and chia seeds.

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WTF chia seeds? We had something special, then you had to go and ruin it with an overly sweet date.