Today marks 1 year since Rainbow was diagnosed with Type 1 Diabetes. So, what goes on in the life of a kid that lives with T1D? Well, the first thing we learned is that there is seldom a ‘typical’ day. Its a constantly changing thing and there isn’t a magic formula to make sure that everything will always work the same way.
Our day starts out getting up just like any normal kid, but because managing the disease is all about routine and schedule, weekends often mean not sleeping in as long as we used to in order to make sure everything stays on track.
Once dressed, we go downstairs, and test her blood glucose (BG) levels before she eats. If she is low, she gets a juice box immediately, otherwise we need to figure out what she wants to eat for breakfast, and measure exactly what she is eating so we know how many carbohydrates she eats. If we are lucky, she will eat everything we measured out and then we can calculate how much insulin she gets for her food plus any extra depending on how her BG was before the meal. If she doesn’t eat everything we also need to figure out how many carbs to remove before doing that calculation. We then get the insulin ready and administer it, usually with accompanying crying or less often screaming.
If it’s a school day, if we didn’t have time to prepare lunch the night before, I often make lunches while the kids eat. Since it’s not as simple as making lunch for our oldest it takes a bit longer. Her school has two nutrition breaks, one midway through the morning and one in the afternoon, so we need to send two lunches. Both lunches need to meet a carb count goal to make sure her BG levels are maintained through the day as well as so she has proper nutrition. We write down exactly what carbs are in each part of her lunch so that the nurse who is with her at school knows just in case she doesn’t eat everything to be able to figure what she has eaten. I also prepare her diabetes kit and make sure all supplies (insulin, needle tips, test strips etc) are all ready for the day.
We then are able to get out the door and get her to school.
During the day, after her nurse tests her and after she has eaten her lunch, the nurse will txt message me to communicate her BG levels as well as confirm how much insulin she will be getting.
For her afternoon break, he will message me again with her BG levels, but at that break she does not get insulin.
When she gets home, while she plays we are often getting ready for supper so she doesn’t go to long between meals. We test BGs again and measure out how many carbs are in what we put on her plate. She has been doing much better lately eating everything we give her, but the odd time we need to go back and measure what is left over to make sure we give her the right amount of insulin. After another arm poke with her insulin, she usually goes and plays, or reads or does homework.
Before bed, she has to have BG’s taken again and then she has a snack to make sure she has enough carbs to last her body through the night. She then gets her fourth and final insulin shot of the day, this time it’s a long acting insulin that works in the background for 24 hours.
Off to bed for her, then we either stay up, or if we go to bed at a ‘normal’ time, we set an alarm to check her BG levels in the middle of the night. We have been very blessed that lately her night time levels have been very good, but there have been some times that it seems like every night she is low, which means that she needs to have some fast acting carbs (usually a box of apple juice). We then have to wait 15-20 minutes and test again, sometimes having to repeat if the number isn’t coming up. It makes for long, tiring and stressful nights when that happens. We are also blessed that Rainbow has become a pro at “sleep-drinking” so we just have to sit her up, and put the straw to her mouth and she can finish the box in less then a minute, then rolls over and goes back to sleep. It wasn’t always this simple and we would have to fight with her a lot at first. We are also happy that she has never been so low that she hasn’t been able to wake up at all either!
Like I said, every day is a bit different, and weekends present their own challenges, but I hope this helps you get an idea of everything that we need to deal with helping a young child with diabetes.
We have talked to other parents and their routines have been different from ours, sometimes because of the individual child, and sometimes because of the information provided by different medical staff. (That will be the topic of a future blog post when I discuss as my frustrations with the significant differences I’ve seen in diabetic care between health professionals).
Are you the parent of a diabetic child or are you diabetic yourself? What is different about your routine from a ‘normal’ person or from what I’ve described above?