In Which I Break All the Diabetes Rules and I Like It

 When Kittygirl was first diagnosed with diabetes I was overwhelmed with all the details. Carb counting and insulin ratios were super confusing, and we were told they weren't even going to stay the same all the time. I measured everything, and I mean everything, with carbs, down to how many tablespoons of ketchup Kittygirl was eating. I snuck a measuring cup and a gallon size ziploc bag into the movies in my purse so I could measure exactly how much popcorn Kittygirl was eating the first few times we went to the movies after she was diagnosed. I would do exhaustive online searches for carb counts for restaurant food whenever we ate out and I freaked out if Kittygirl didn't eat every crumb of her meal. 

When we had our diabetes education class at the clinic (as opposed to the basic overview we got in the hospital) we were told things that turned out to be kind of conflicting. They said our kids could eat anything as long as we/they counted the carbs and dosed insulin for it. They also said we should try to keep their blood sugar in range as much as possible. The one thing they did caution us against was liquid carbs. In fact, the notes they gave us said in all caps NO REGULAR SODA. They said that the sugar in regular soda acts too fast for the insulin to cover it and that first the child's blood sugar would go high from the soda and then low as the insulin hit and the sugar in the soda was done acting.

Three and a half years into diabetes (which doesn't make me an expert, but whatever) I am here to tell you that I've thrown most of that advice out of the window.  The first thing I discovered, after Kittygirl started wearing a Dexcom CGM, was that eating with diabetes and controlling blood sugar is not in any way, shape, or form as simple as counting carbs and dosing insulin before eating. I've learned that different foods act in Kittygirl's body in different ways. You wouldn't think this would be revolutionary, but the average diabetes education class does not make this clear.

Kittygirl still throws back at us the fact that, in the hospital, the nurse told her she could still eat anything as long as she got insulin for it. That was further compounded by the fact that, when I've talked to her classes at school about diabetes I've wanted to emphasize that kids with T1D can, in fact, eat sugar and said that she can eat anything. It turns out that's both true and false, if we want to maintain good blood sugar control. I have yet to find a type of food that Kittygirl absolutely cannot eat in some amount at some time. The big difference is, there are many foods that we only allow in limited amounts at limited times. It's a big science experiment in which we have to figure in the number of carbs in a food or drink, how quickly those carbs will act, what Kittygirl's current blood sugar is, what time of day it is, what else she's eaten that day, how active she's been and is going to be, and half a dozen or so other factors sometimes apparently including the position of Mars in relation to the moon it feels like. This really annoys her.

If all the stars are aligned correctly, we've dosed exactly right, and Kittygirl has not been unusually active or inactive, she can eat a large, dense donut from our favorite local donut shop and only experience a small rise in blood sugar.

If the starts aren't aligned correctly, I dose it wrong, Kittygirl is more or less active than usual, or any one of a dozen or more other things go wrong, Kittygirl's blood sugar may go down to 50 and then up to 350 with one of these donuts.

If I just followed the rules I was taught, however, that would always happen. Unfortunately, the fact that diabetes is best managed dynamically taking a huge variety of factors into account is not often taught. I'm so thankful that we discovered teachers such as Gary Scheiner and Dr. Stephen Ponder early in our journey of parenting a child with diabetes. We are far from perfect, but I think we would be more frustrated and our daughter would have a poorer quality of life and a poorer outlook for her future health if we hadn't done research into good diabetes management ourselves and also if we weren't willing to experiment and learn specific things about how diabetes works for our particular kid,which is not always the same as it works even for another kid of the same age, size, and gender.

Earlier this summer, I even discovered that the all caps NO REGULAR SODA rule can, in fact, be broken under the right circumstances. Now, would I just hand my kid a bottle or can of regular soda with no thought? Of course not, but I've learned that half a bottle of regular soda with a meal does not affect Kittygirl's blood sugar in a significant way. This happened because Ale8, which is a Kentucky staple, produces a special orange cream flavor that's only available in the summer and doesn't make it in diet.

Orange is Kittygirl's very favorite flavor in the whole world and she desperately wanted to try it. I let her have a few sips last summer when the flavor was first introduced, but she wanted her own bottle this summer. I looked at the carbs, thought about it, and decided she could have half a bottle with a relatively low carb meal. It worked well, so we did it again. I now know that even the all caps rule can be broken under the right circumstances.

There are still diabetes rules that can't be broken. You can't not take insulin, even if you eat a very low carb diet. You can't not check your blood sugar if you want to have any hope of keeping it in range. You can't just eat anything you want anytime you want without thinking about it.

You can, however, ignore the old fashioned static management rules that too many endos still teach as long as you replace them with dynamic management rules that actually work better.

In Which Virtual Is Actually Pretty Good

If you had told me six months ago that my 9 year old would be using Zoom regularly this year I would have believed you. Then the pandemic hit, and most of us started using Zoom or some other video meeting interface pretty often. Our first experiences were kind of mediocre. Her teachers had a weekly class Zoom meeting, but it was poorly attended and not that engaging. Random kids in her grade would have their parents set up a Zoom meeting so that they could talk to their friends. Some parents set up meetings with grand intentions for the kids to speak Spanish with each other, but that never happened. Kittygirl tried one of those meetings, but it was set up by a boy and she was the only girl who joined. She left the meeting after just a few minutes. 

Virtual school as a whole was pretty unimpressive this spring. I don't blame the teachers. This was thrown on them very suddenly. They were provided with no training. They were also told they were not allowed to lower students' grades during the last 9 weeks when we had to go virtual and that they couldn't introduce new content. It was a pretty terrible set of circumstances.

Our first positive virtual experience was with a virtual Cub Scout campout in April. There was a whole schedule of suggested activities with the opportunity to share what you were doing via Facebook, plus Facebook live events where you could interact with others. Frankly, the planning was better than some in person campouts we've attended. We even had a real campfire in the backyard during the closing campfire program.

This summer everything the kids had planned to do was cancelled, but we managed to have some really impressive virtual experiences. We were particularly sad that FFL Orlando, the amazing diabetes conference that we've attended for the last two summers, had to go virtual.this year. However, it was actually done extremely well. They even had virtual versions of the Thursday evening banquet and the Saturday social events. One of the best parts of FFL is connecting with other parents of kids with diabetes and adults living with diabetes, and the organizers did their best to recreate those random connections by having virtual "hallways" - Zoom meetings that you could join at any time  between 8am and 8pm. 

It was disappointing that kid and adult sessions alternated during the virtual conference so I had to find something for Kittygirl to do during my sessions, but I understood practically why they did this. Many families simply don't have enough devices for multiple family members to be on Zoom at the same time.  Both the kid and adult sessions themselves, however, were quite good. I figured the adult sessions, that are often lecture type presentations would be pretty easy to translate to a digital environment, but I doubted the kid sessions would fare as well. To my great surprise, Kittygirl absolutely loved her first year in the Tween group even though it was virtual. They did an amazing number of fun activities along with learning some things about diabetes and meeting some famous people with diabetes. They even made "carb creatures" out of food and showed them off.

FFL was just one of several positive virtual experiences we've had this summer. Kittygirl also did a virtual diabetes camp that was surprisingly good. The week of the virtual FFL conference and for a week after that we were isolating as much as possible so we could safely visit my parents, so we signed each kid up for a week of virtual camp the second week. They were both excellent. 

Squirrelboy did a Cyber Film Camp with the Verdugo Hills BSA council, which is based in California in the heart of the moviemaking industry. He got to learn from professionals who do the kinds of things he hopes to do for a living, and he managed to cooperate with a group of 7 other scouts from 4 different states to make a short film. All the films made by the campers were shown in a film festival this Sunday, and I was really impressed. Squirrelboy's film even won the audience award, which was voted on by the Zoom seminar attendees.

Kittygirl did a virtual camp with Lexington Children's Theater. She at first wasn't excited about the idea, but then I told her it was based on a Percy Jackson book, which she is obsessed with, so she agreed. For three hours every day over Zoom the kids rehearsed a short play and then they presented it via Zoom on Friday. It was kind of surreal to have the kids saying their lines on camera in their homes instead of together on a stage, but it was amazingly good despite that. As a bonus, my in-laws who almost never visit and my brother who lives in Germany were able to join the Zoom meeting and watch Kittygirl's play. That never would have happened if it had been a normal end of camp presentation.

This year has not been what we expected. It looks likely that it will continue like this at least until the spring of 2020. Sometimes this makes me really angry. I'm particularly angry that the government in the U.S. has done a really pathetic job reacting to this pandemic. However, lots of individual organizations have really stepped up and embraced this unusual time. So many new people signed up for the virtual version of FFL that the organizers have committed to having a virtual version even when the in person version is safe again (hopefully that will be 2021, but all bets are off at this point). The Verdugo Hills council is planning to do the Cyber Film Camp again next summer. My husband's company is investigating allowing employees to work from home in come cases long term. I think this pandemic is going to fundamentally change the way we do some things, and in many cases it will be for the better.

These positive experiences are why, even though our spring experience of virtual school was pretty pathetic, I'm cautiously optimistic about what it could look like in the fall. Our district has announced that we will begin two weeks later than originally planned, on August 26, and that school will be virtual only at least until the end of September, at which point local conditions will be reevaluated. If we do go back later in the fall it will be part time to begin with and 1-3 days a week will still be virtual. This time, there has been more time to prepare, it is expected that new content will be presented, and the superintendent says that work will be differentiated. I have a healthy skepticism about how this will go, and am mentally preparing to pull Kittygirl and homeschool her if she's as miserable as she was in the spring, but for the time being I'm giving everyone the benefit of the doubt. Overall, virtual is normally not as good as in person. However, I have experience really well done virtual and really poorly done virtual. Here's hoping that school this fall is closer to the former.