I'm starting this blog as the most efficient way to keep everyone updated on Grace, how we're all doing, and any new information we'd like to pass along. I have no idea how long the blog will last. In fact, I've come to believe that blogging is an ancient art. But for our situation, it seems to make perfect sense. The format is sooo lame. I'll play with it when I have more time.
So here's what's up. It's been almost 3 weeks since our CHOP experience. In the week we were at CHOP, Tom and I got a crash course in diabetes management. But similar to those silly childbirth classes every anxious parent takes, the classes did not really compare to the real deal of living with diabetes. Our binder of educational materials is well-worn, doctors' numbers are on the top of my contact list, and my bag is loaded with very sharp objects. On a daily basis I am armed with an epi pen, lancets, and syringes. In short, don't mess with me.
I think there is a lot of misinformation out there about diabetes. I know my personal knowledge base was dated by about 10 years. Our first night at CHOP I panicked that Grace would never be able to have sweets again, would be on a special diet, and would eventually come to hate food given the restrictions we've imposed because of her food allergy. The only silver lining I saw was that I'd get a crap-load of new cookbooks out of this. Anyone who's seen my collection knows how serious I take my cookbooks. I had to find a silver lining.
The good news is that Grace can eat whatever she wants. The bad news is that Grace cannot eat whatever she wants. Her days of wandering into the kitchen and grazing on carrots and tomatoes and ranch and hummus and yogurt and whatever else was on her approved snack list have ended. Grace takes 2 kinds of insulin. One is given before bed, the other every time she eats something over 5 grams of carbohydrates. Now stop reading this and go look in your cabinets. Have anything a kid would like that's under 5 grams of carbs? No, I didn't think so. We have a list of snacks that Grace can have that are "freebies"--no insulin required. Cheese, smoked meats (salami, pepperoni, etc), lunchmeat (meat in general), string cheese, guacamole, celery, sunbutter, cream cheese, small servings of veggies with ranch, hardboiled eggs, pickles-I could go on. No where on that list is crackers, Teddy Grahams, yogurt, fruit, pretzels-staples of Grace's diet. Translation: Grace gets a lot of insulin. It's her choice whether or not to have a carb snack but, hang with me here, she has a "limit" of how many carbs she can have a day so we generally limit carb heavy snacks. If Grace wants fruit or yogurt or cookies, it comes at meal time with a dose of insulin.
How do we keep track of all this? I do (by and large), in a notebook I keep with me at all times. I count carbs (more on that in a minute), note her blood sugar (taken with a pin stick to her finger) and I then use a chart Endocrine has given us to calculate her insulin dose. It involves addition, multiplication, and division. Can you see the sweat on my brow? It makes me nervous-very nervous-to calculate an insulin dose. Sometimes it's easy, other times more complicated. If I screw it up, I screw up her blood sugar.
We carb count everything through the internet and a handy book they gave us. Some things are now committed to memory-pizza has 22 carbs per slice, milk, 13 grams per cup, ketchup 4 grams for 2 tablespoons. Other things are not so easily found. For example, the canary melon I received in my farm share today (13 grams for one cup diced)-- took a little digging to find that one. I calculate all her carbs and record the number on a chart we have to keep for our appointments. We have phone contact once a week with Grace's endocrine practice and they ask us to read back numbers to see if an adjustment needs to be made. Up until today, I had to wake Grace every night a 2am to make sure her sugar had not gone too low while she was sleeping.
Some people have asked me if Grace can take insulin orally. No, her body would destroy it. Type one diabetes is an auto immune disorder. For her body to absorb the insulin, it has to be injected. Have you seen how skinny my girl is? Injections either go really well (she barely notices it), or she howls. And howls. And howls. And sometimes hits. And sometimes kicks. But we have a deal--a solemn pinky sworn deal-that I will never, ever walk away when she is upset. So I take it. Just like Grace takes it.
There is much more to write but I'll save it for another day. Feel free to ask questions--fire away. I'll do my best to get back to you and update more as I have time.