Back in August, our Love Bug was diagnosed with type 1 diabetes which means our family has type 1 diabetes, though it doesn’t define our family. The first post details how the diagnosis came about and this second one touches on a number of frequently asked questions and a run down of our day. I got wordy again so there is now a third post about how our new normal has changed me, our family and my outlook on life.
The most common question I get is how Bug is doing. My response is this:
Love Bug is doing well, great in fact. She feels good, has energy and is deeply focused on the things a seven year old thinks about. As for diabetes, she is able to check her BG (blood glucose) herself as well as administer her own insulin, with parental advisement, of course. For her, diabetes is still a novelty, a quirk. And she is still at an age when having a quirk is fun and I hope that lasts forever.
MJ and I, on the other hand, struggle. We carry the load and burden of this disease right now, which we are more than willing to bear for our baby. We worry about her BG levels and the carb counts, the appointments, the prescriptions, the insurance and the future. We watch for patterns, consult adjustments and plan out-in-the-world excursions so we are prepared and they are as close to seamless as possible. We pack the measured out lunches and serve all the other measured out meals and snacks. We’ve taken our favorite recipes and figured the carbs per serving. I even called my math genius friend from my high school days to review algebra equations so I can more easily determine carbs per serving on packaged items. We read labels, adjust coverage for activity, communicate frequently with the school nurse and other adults in Bug’s world so everyone is in the know about her health. MJ and I are looking ahead at things like the insulin pump and the continuous glucose monitor, planning how to get educated about them so we can then work with Bug on incorporating them into her life to care for her health. We wonder what this will mean for her as she grows and does activities. We think about what it will be like when she leaves home and lives on her own. We worry about what having children will do to her body and we worry about the long term effects of this disease on Bug’s body. Type 1 diabetes is a lot of work and induces a whole lotta worry.
The second most common question I get is what made us take her to the doctor when we did, what were the signs. To this I answer this:
I made the appointment because, for about 10 days before, Bug started to complain about headaches and she started laying on the couch during the day. Instead of playing, she wanted to sit down and watch. My children hardly ever sit down, let alone lay down, during the day and when they do, it usually means they are fairly sick.
Additionally, over the summer, I watched Bug shrink in size. She lost weight until she was nothing but skin and bones yet she ate and ate. Large, dark bags developed under her eyes and she wasn’t sleeping well. She also drank a lot of water and it’s this symptom I overlooked, and now, chastise myself for. We are a water-drinking family. Love Bug drank a lot of water but the amount gradually increased slowly enough I thought it was a natural progression.
Another question I get is did I suspect diabetes. Here’s that answer:
Yes and no.
Yes. I am familiar with the phrase warning that drinking lots of water and going to the bathroom a lot is a sign of diabetes so watching the Bug’s water consumption/expelling, I did have a passing thought about diabetes. I shrugged it off because how could something so vital to life (water consumption/expelling) be a sign of a life-altering disease. I wanted purple spots or something, something blatantly, unavoidably obvious.
No. We have no diabetes in our family. (There is type 2 in the family but oddly enough, the two types are NOT related at all.) There are no autoimmune diseases either. It wasn’t on my radar at all. As I watched her lose weight, deal with headaches and lay down during the day, my mom brain was scrolling through lists of possible issues, none of which was diabetes.
That being said, the day before the doctor’s appointment, I watched Bug even closer and noticed a couple things. Bug’s energy and liveliness would come back right after she ate food but then would sputter out quickly. Her mood fluctuated and she would get snarly when she hadn’t had food in a while. And the water drinking. I saw these things and again thought about diabetes but wanted it to be anything else.
What does our day-to-day looks like:
There is a lot of math and monitoring. Bug checks her blood glucose 4-10 times a day and everything she eats is measured, tallied and recorded. She receives insulin 4-6 times a day, depending on what and when she eats. We work closely with the school nurse as she is the one to help monitor Bug’s health while she is at school. Bug eats packed lunch each day so we know exactly what and how much she’s eating and I write two notes each day to send in her lunchbox – one details her food stuff and one details the day’s activities and how we’ve adjusted the food stuff to coordinate.
Diabetes is not a static disease; it’s in a constant state of flux. There isn’t a set formula we can follow to get the same results every day. Believe me, I’ve asked and asked and asked and reasked. Blood glucose numbers and insulin needs are affected by age, weight, sensitivity to insulin, activity level, sickness, sensitivity to specific foods, stress, hormones and other unknown things. This means we are vigilantly overseeing Bug’s blood glucose levels as well as her activity and overall health to make sure she is getting what she needs.
The third post is on its way.
