I hope the new year is treating all of you well so far. On New Year's Eve, we had our first ever Anderson Family game night! OK, so we played 3 rounds each of Elefun and Hungry Hungry Hippos and the whole thing lasted maybe 30 minutes including setup and tear down, but it was very rowdy and fun. For those of you who are just feeling sad for us at this point, we did get out to a family-friendly party on new Year's Day. :)
New Year's at our house also means getting ready for the annual Juvenile Diabetes Research Foundation Walk to Cure Diabetes (and, as always, wishing we had started before now). This will be the third year of Thor Corps participating in the walk. Our first year, we had 15 walkers wearing homemade "Thor Corps" stickers which fell off and left ink on our clothes and we raised $1000. Last year, we had 21 walkers, official "Thor Corps" shirts and we raised $1400. This year, we will be wearing the same shirts as last year and I'm not sure how many walkers we'll have, but we're hoping to raise at least $1500. This walk is an amazing event. Every year when I arrive I am awed and humbled to see all the people who show up to walk on behalf of my little boy, and also to see how the Mall of America is absolutely packed with people who come out so early on a cold Saturday morning in the hopes of finding a cure for this disease.
This past Spring, we finally got insurance approval for a continuous glucose monitor. This is a needle which stays in Thorwald's arm for a week at a time and is attached externally to a radio transmitter which is about the size of half of a walnut. This all goes into whichever arm is not currently hosting the infusion set for his insulin pump. (The stomach, back, and thighs are more common sites but are not available for us to use due to Thorwald's nevus). The radio transmitter then sends glucose readings and trend information to Thor's pump. The question I most commonly get is whether this eliminates any of the finger pokes we do to check Thorwald's glucose. The answer is, not really. The constant sensor is pretty accurate, but pretty accurate isn't quite good enough when it's time to administer insulin. The monitor gives us reliable data on whether Thor's blood sugar is climbing or falling, but the data tends to lag behind. The monitor doesn't actually measure blood sugar--it measures interstitial glucose, or glucose levels between cells. This can be wildly different from blood sugar levels, but isn't usually. What the monitor really gives us is a constant stream of data, which is very different from the isolated values we get from a finger poke.
Why is imprecise data so valuable? Well, take overnight for an example: We know that Thor's blood sugar has to be at least 170 mg/dl (3 hours after he has a dose of insulin, that is), or we have to get him up and give him a snack to ensure that he doesn't drop too low overnight. Without the sensor, we might see that he is at 190 mg/dl and call that acceptable. With the sensor, however, we can see that while he may currently be at 190 mg/dl, he might also be dropping fast. This lets us know that we need to stay up a while longer and check his blood sugar again, to make sure he stabilizes at a safe level. If you've ever wondered why we drink so much coffee, now you know! Three hours after Thor has his night-night snack, we check him. If he's low, we get him up, give him some food, and put him back to bed. Then, we wait another hour or two, and do it all again.
Before the CGM (Constant Glucose Monitor), our only clue that he was getting low in his sleep would be Gunnar -- he tends to wake up shrieking when Thor's glucose gets quite low. We've been lucky so far -- Thorwald has never had a hypoglycemic seizure. We are very frightened that one might happen, because the consequences are so severe. Our previous endocrinologist told us, in all seriousness, that we can just go ahead and take off 10 IQ points for each seizure that Thor has at this age, and that's a permanent reduction. Thorwald's pump does alarm if his blood sugar drops too low, but we don't hear it over the baby monitor and it doesn't always wake Thorwald up. So again, it is often Gunnar who first notices a potential problem. At this rate, those two are NEVER getting separate bedrooms!
In other news, Thorwald is in preschool this year and loves it! People often ask me how that works with diabetes management, since he's at church preschool and there's no full-time nurse on staff. How it works is that Gunnar and I are effectively in preschool 3 days a week as well. We drop Thor off, go run errands for an hour or so, get back to school to check Thor's glucose and give him insulin for his snack, and then we hang out, since there's usually less than an hour of school left after snack time. Fortunately, Thorwald's teachers are very gracious about us being there so much. They even set a place for Gunnar at snack time. Gunnar, in the mean time, thinks he's a member of the class and has been so well-adopted as the class "baby" that he has almost celebrity status. It's actually a bit disruptive when we arrive (think Norm walking into "Cheers"). Anyway, that has cleared up any question about whether I'm sending Gunnar to preschool next year or making him wait until he's 4 like I did with Thorwald!
Like I've told many of you, ever since last year's walk Thorwald has been asking periodically if we can cure diabetes yet.
Having had it since he was 10 months old, he doesn't know what life without it is like, but I pray that he will someday soon. JDRF is our best hope for a genuine cure for diabetes. Unlike other diabetes advocacy groups, the JDRF doesn't care how the cure happens -- they don't care if it's a biological cure (e.g., a medication that allows Thor's body to start producing its own insulin again) or if it's a mechanical cure (such as a machine which measures blood glucose and automatically administers insulin) -- they're just funding groups so that it will happen. JDRF runs one of the leanest, meanest fund raising machines in existence. The vast majority of people involved with the JDRF are volunteers, and they put in virtual slave labor to keep the machine running. I mentioned the danger of Thor's blood sugar getting low, and how dangerous overnights are. JDRF-funded researchers are currently running human trials of a modified insulin pump which can automatically reduce insulin administration and even give out glucagon (which raises blood sugar, and is naturally produced in a healthy person's pancreas) if necessary. JDRF led the fight to not only get insulin pumps on the market, but to make sure that the FDA approved them, and that health insurance companies would pay for them. We've fought some of those battles with insurance companies, and it's not fun being on your own. How does one challenge an insurance company's statement that "no diabetic needs to check their blood sugar more than 3 times in a day"? Simple: with facts. No one is working harder and making sure scientists are funded to gather those facts than JDRF. Diabetes is curable. It will be cured. Through funding JDRF, I hope we can see that cure while Thor is still a child, rather than when he is a grandparent.
Please consider walking with us on January 19 or making a donation in any amount. You can register for the walk or make a donation by going to www.JDRF.org and clicking on the walk link by the sneaker. The information you might need is that our team is Thor Corps, I am the captain (or the walker you would be supporting) and the walk will be taking place in Bloomington. Thank you all for your ongoing support.
Angela's direct donate page is at this link
Jeremy's direct donate page is right here
Angela, Jeremy, Thorwald and Gunnar