In celebration of World Diabetes Day, we wanted to do a day in the life of a little diabetic. World Diabetes Day is focused on raising awareness for both type one and type two diabetes, but obviously our focus is more on type one. Most of you have heard me say this repetitively, but the biggest difference between the types of diabetes is that type one is an autoimmune disease. While the cause is still unknown, it is most likely caused by a combination of genetic factors, influenced by environmental or pathogenic triggers. The immune system is triggered to kill off the islet cells in the pancreas, which make insulin. Without insulin, the cells in the body cannot receive glucose (energy) and the body will slowly die. The only treatment is to inject insulin into the body in appropriate amounts, which is much easier said than done. There are so many factors that influence insulin needs and absorption, making diabetes management very difficult.

Anyway, back to our day . . . Our life is very much the same as any other family with small children. We play, read stories, have tantrums, do chores, fight and laugh. In every way possible, we try to treat Lyla like a normal child and make her feel as normal as possible. From a parenting perspective, diabetes is just one more thing we have to deal with. The closest thing I can liken it to is potty training. When potty training, the parent is required to have a constant vigilance concerning the trainee – when did they last go, how much have they had to drink, do they look like they need to go? Potty training is typically easier when at home, and creates worry and sometimes disaster in other situations. Diabetes is similar, with two major differences; first, it is not a phase that we will pass through quickly and rarely have to deal with again. It is our life and always will be. Secondly, failures in diabetes management are much more severe than any failure I’ve seen while potty training. After all, it can mean death.

Our biggest fear is obviously insulin shock, which can occur if Lyla’s blood sugar goes too low. It is more of a concern at night, as she could slip into a coma and potential die before we ever noticed. While it rarely occurs, type one diabetics can die in their sleep, a fact that haunts us on a daily basis. Greg does the vast majority of nighttime checks, especially now that I am pregnant and tired. Even when I’m not pregnant and tired, he checks most of the time. He’s just awesome like that.

The day technically began at 12:33 a.m., when Greg checked Lyla before he went to bed. He trades off between going to bed early and setting an alarm for 2 or 3 a.m., and going to bed late and checking her before he sleeps. At this middle of the night check, her blood sugar was 215. She is supposed to be between 100-200, and we usually prefer she stay closer to 100. At night, though, we are happy with numbers slightly higher to give her more of a buffer from falling low. Greg decided to let her be at 215 because giving insulin could make her fall too low in the night. It is a constant debate between letting her blood sugar be slightly higher than it should be versus getting up more times of the night. If it were just one night, it would be an easy decision, but it is every night at our house. So we weigh out our sleep needs with her blood sugar numbers. At night she is supposed to be at 175, so 215 is only slightly high. We all need the sleep.

The kids were up at 7:30. I always breathe a sigh of relief when I hear Lyla’s voice in the morning. I worry every single day about her not waking. We check her blood sugar first thing in the morning. She was at 172. Lyla has always had a hard time responding to insulin in the morning. We have struggled with it since diagnosis. It seems to take a long time for her body to respond to the insulin, which usually results in high blood sugar. Typically insulin takes 60-90 minutes to respond in the body, but Lyla takes much longer in the morning and is faster the rest of the day. The only strategy that has slightly helped with this is to give her insulin at least 30 minutes before she starts eating. This is a challenge in the morning because she is usually hungry and wants to eat as soon as she gets up. We allow her to pick a television show to watch to distract her between when the insulin is given and when she can eat. It usually works, though Nick complains horribly about wanting food. In general, we try to apply all rules to both kids, as to not single her out. It works occasionally. Another challenge with administering insulin early is that we have to make an estimate of how many carbohydrates she will eat for breakfast. We generally dose her for 30 carbs, then try to get her to eat accordingly. It does get to be difficult when she wants more food and a food that is higher in carbohydrates. We have also noticed that certain foods break down more easily in her system and keep her more stable. She loves oatmeal squares cereal, for example, but even if we meticulously count carbs and measure portions, her blood sugar is sky high all morning after eating it. On the other hand, Lucky Charms breaks down well. Again a trade-off – healthier breakfast or better blood sugar.

Lyla has an insulin pump, which is like an IV line into the skin, making it easier to give her insulin and give her small amounts. The pump is programmed to the ratios and ranges Lyla should be in, and will calculate how much insulin to give her, making the math portion of diabetes much easier. I enter in that she will eat 30 carbs and it knows what her blood sugar reading was, so it calculates how much insulin she needs. This morning it was 2.45 units of insulin. She watched her television show and then ate breakfast. She wanted orange juice and Lucky Charms. One of the tricks with breakfast is trying to make her breakfast equate to the 30 carbohydrates that we previously dosed her for. We are often a few over or a few under, which can affect her blood sugar later in the morning. One of my least favorite things is telling her no when she asks for seconds or for additional food. Her blood sugar is so bad in the morning, that I hate giving her more to eat because the numbers are so awful, even with additional insulin.

We don’t typically check Lyla’s blood sugar for the first couple of hours after breakfast because she is almost always high. Around mid-morning, the insulin finally seems to kick in and she drops quickly. This is her most unpredictable time of day. Today was a non-teaching day for me, so we had lots to do. We went to story time at the library, then headed to the store. I wanted to make sure she was okay before the store, so we checked after story time. She was at 235. I debated giving her insulin or letting her be. Especially in the morning, it is difficult to determine if the insulin has kicked in or not. If it was still in her system, then I needed to let her be. If it was already through her system, I needed to give her more to bring her down. Because we were heading grocery shopping, I decided to let her be and check her when we got home.

We had several stores to go to and the kids were restless by the time we got to the last one. Nick asked if they could have treats. I normally don’t get them treats at the store, but decided it was warranted because they had been relatively good throughout all the shopping. I let them each pick a small treat. I was thrilled when Lyla chose a sucker that I didn’t think she would like. Then I briefly felt guilty for letting her pick something that she probably wouldn’t eat.

We got home and started unloading groceries. I was busy trying to get everything out of the car and get the perishables put away. Both children were whining. It was nearly lunchtime and they were tired from shopping. I decided to check Lyla’s blood sugar, and she was at 68. Too low. I gave her a juice box while I continued to unload the groceries. When Lyla is low, she gets hungry and wants to eat a lot. As I unloaded the groceries, she spotted the cheese and asked for a piece. That was easy enough, cheese has no carbohydrates. Then she saw the cutie oranges and wanted one. With more carbohydrates being consumed, she needed insulin. I put 10 carbs for the juice and 5 carbs for the cutie into her meter. It took into account her low blood sugar and told me she needed 0.35 units of insulin. I gave her that, so grateful for the meter that does the math and the pump that allows for tiny amounts. Back when we were on shots, she was required to have half unit increments, which was so much harder.

After the cheese and the orange, she wanted an apple and her sucker from the store. I didn’t think she’d like the sucker and wasn’t sure she’d eat the whole apple. I dosed her for another 15 carbohydrates to account for what I thought she would eat of the two, which was another 0.85 units. She ended up eating the whole sucker and half the apple, so I checked her again an hour after eating to make sure she had enough insulin. Sure enough, she was higher than she should have been, at 227. I gave her another 0.45 units of insulin.

At 2:30, I decided to lay down for a minute (this pregnancy is kicking my butt) and wanted to make sure she hadn’t fallen too low before I did. She was at 236. Maybe I should have picked a different day to document? Seriously, not our best, but not completely abnormal either. I have no idea why she wasn’t going down. We rarely have a good explanation for any number. Her blood sugar and insulin needs are constantly changing based on the food she eats, the energy she expends, her excitement levels, and most other emotions. In addition, food can break down more slowly than we expect, or she can have air bubbles in the tubing of her pump, or her pump site can go bad, or the insulin in her pump can go bad. There are so many factors that it is really difficult to pinpoint what is going on.

By 3:10 she wanted a snack, so I dosed her for another 10 carbohydrates. I didn’t check her because I felt I had already checked her more than normal this afternoon. Our insurance will only cover so many test strips a month, so we try to conserve where we can. The strips also retail for over a dollar a piece, so it is very expensive to check her.

At 4 p.m. I was on the phone with the medical supply company to get Lyla’s test strips and pump supplies reordered. I was grabbing a pen from the cupboard, when a very cranky Nick saw the gummy worms in the same cupboard and started screaming for them. Like any mother on the phone, I threw one to him to make him stop screaming so I could hear the lady on the other end of the phone. Of course, then Lyla wanted a gummy worm and started loudly complaining. I gave her one and checked her blood to see where we were at. She was at 150 – in a good range, but definitely too high to have candy without being dosed for it. I dosed her for another four carbs.

We had dinner at 5 p.m. and she was 186. We were having apples, lasagna and garlic bread. We try to dose Lyla before she eats so her blood sugar doesn’t get too crazy high before the insulin kicks in. It is a guessing game to figure out how many carbs she will eat in the meal. Like any other kid, she has days where she eats really well and others where she barely eats anything. I figured 30 carbs was a good starting point since all of the items served were pretty carb heavy.

Of course, she didn’t touch the lasagna and came to me at 6 p.m. saying she was too tired to clean her toy room. This is actually a common complaint for her and we usual have to check her to determine if it is a blood sugar problem or a laziness problem. This time it was legit – blood sugar of 54. I asked what she wanted and she excitedly asked for some of her Halloween candy. She perked up quickly after eating a little candy, but started complaining of not feeling well as soon as I sent her back to finish her chores. Another internal debate – check her again, just in case she is having a crazy plummet, or tell her she is fine and needs to get her chores done. It is hard to figure out when she really doesn’t feel well and when she is trying to get out of something. Both happen a lot at our house. I checked again at 6:30 and she was 132.

Just before bedtime, I needed to change the site for Lyla’s pump. The sites have to be changed every 2-3 days. Lyla’s numbers are better the newer the site is, so we try to change her on Sunday, Tuesday and Thursday evenings so her site will work well at preschool and Grandma’s house while I’m at work. The site change requires a fairly long needle that threads a tube just under her skin. The site should go into fatty tissue, such as the stomach, arms, thighs or a butt cheek. We stick with butt cheek locations because Lyla is so petite that she doesn’t have much fatty tissue elsewhere. Lyla is incredibly tough when it comes to site changes. She made a deal with us a year or so ago, requiring four Swedish fish for a site change. We bribe her with candy – ironic, I know – but she never complains and rarely cries. She is one tough kid. There are times, in fact, when she asks for a site change because she wants candy. Tonight she didn’t want Swedish fish, but wanted a piece of Halloween candy instead. She chose a box of Dots and after she had consumed them, I looked up the carb count and it was way higher than Swedish fish normally are. Not the best choice. Her blood sugar was 134 before the site change. We also have to change out the cartridge full of insulin that goes in her pump and the tubing that goes in her site about once a week. In general, Greg is better at getting the air bubbles out of the cartridge and I am better at getting the sites in without pain. We stick to our strengths, but also switch from time to time so we are both well versed in both tasks.

I checked Lyla’s blood sugar one more time before I went to sleep. Luckily she doesn’t wake when we check her in the night. She was at 128. Greg will check her again when he gets home from work, then he’ll decide on his late night strategy for checking Lyla’s blood: either choosing to have his sleep interrupted at least once, possibly twice or more; or stay up late and only sleep a total of five to six hours, but without interruption. Then we’ll start the process over in the morning.

As overwhelming as it seems, diabetes is only one part of our lives. We have the normal tasks of cleaning, cooking, laundry, grocery shopping and general household management. We also have two small children that need and deserve our time and attention. This is all in addition to two very stressful and demanding careers. Greg is also working on writing his dissertation for his PhD and I am nearly in the third trimester of my worst pregnancy. I certainly do not detail this to complain, but to create awareness. We have lots of friends and family who don’t really understand why we advocate and fundraise for a cure for type one diabetes. To us it is obvious. We want to do everything we can to treat the disease, but we want more than anything for Lyla to be normal and healthy and for her diabetes to be cured. I’m not sure what we would do with ourselves if we didn’t have the constant stress and worry. I’d love to find out.