It has been quite a while since I have written about Levi; so much has happened its hard to pick a place to start. We had a long summer! In July Levi got a severe case of "Hand, Foot and Mouth" a relatively common virus, and was literally bedridden for three days. It took almost three weeks for him to recover and he has permanent scarring from the blisters on his hands and feet. This was in stark contrast to his brothers and sister, they felt miserable for about 12 hours, had a mild rash for two days and only a few blisters. Then in mid-August Levi ended up with a nasty staff infection at his CGM insertion site. We believe he caught the infection at Silverwood when he was playing in the water. Finally after two rounds of shots, one course of IV drugs, and 10 days of a Sulfa medication he recovered. On top of all this, the older children started school and sports giving us yet another challenge when it comes to diabetes.
Given the circumstances of the last couple months, between traveling and the school year starting, I've often found myself focusing on Levi's diabetes more than usual. Carb counting and bg corrections are day to day, but when he gets sick (and when I consider what I do to prevent it),the fact that he has diabetes is really driven home. For example, whenever we go somewhere whether its for two days or ten, I pack an entire suitcase full of medical equipment and diabetic supplies, I have extra site changes, extra insulin, needles ( just in case something happens with his pump) ketone strips, ketone meter, zofran-my best friend and a nebulizer, I need everything for sick day management. I listen to relatives for words like fevers or coughs because not everyone understands that if their kids are even a little bit sick, we can't visit. We avoid places where there are lots of children like Chucky Cheese or the Children's Museum,. At the store, we use the disinfectant wipes twice: once on the way in, once on the way out. With every sniffle, cough or sneeze Greg and I look at each other and cringe. Is he coming down with something? How is his breathing? Are his counts good? Does he have ketones? If we travel, I always know where the nearest hospital is and watch for the blue "H" sign. The thought of yet another ER visit, hospital stay or even worse- DKA, haunts us.
It isn't just in sickness that I am struck by the effect of diabetes on Levi and our family either. At the older children's soccer matches, we watch out for the kind parent that offers all the children sweet treats at the end of the game, ready to jump in, and explain to the well-meaning parent that Levi has diabetes. When we first meet people we tell them Levi has diabetes from the start, so they understand why I am such a mean Mom about cookies. Young children ask about his tubing or the monitor and as their parents admonish them not to pry, I chuckle to myself because it's obvious the parents are just as curious. When my son's teacher asked the students to write about a significant life event, Gabriel (my oldest) wrote about Levi's diagnosis and what that meant for all of us.
And yet there is so much more to Levi than diabetes. If he were another child, instead of being excited that his A1C was down, we would be talking about how fast he can dribble the soccer ball-he's a natural at the age of 3. We would be bragging about how fast he can run and for how long. While watching him wrestle with his brothers, seeing him tackle and take down 6 year old William, or laughing when Gabriel pretends to be knocked out while Levi struts around him, we would be commenting on what a little scrapper Levi is. Athleticism aside, I would be telling people how sweet Levi can be when his brothers and sister are upset or actually hurt. I would be exclaiming over his ability to put two and two together, his imagination and how much he talks or the fact that he is a fishing fool. His favorite thing to do in the entire world is go fishing in the boat with his Daddy. Now, don't get me wrong, we do talk about it-we are proud parents- but when it comes to Levi, diabetes is first and foremost in our minds. Unfortunately that is true with any kind of lifelong disease. The challenge we have is to focus not on what he has but who he is - a precocious, funny, athletic little boy: a boy first and a diabetic second.