Over the past month or so, Tom and I have both been feeling like TJ's numbers have been in range - some highs, but mostly solid numbers, with what feels like many lows scattered throughout. I was happily anticipating our three month check-in with the fabulous Deb at the Joslin Clinic, where I was sure we would be applauded for our wonderful diabetes management, and ability to bring his A1C so low.
And then I downloaded the pump.
Many solid numbers, sure - but also LOTS of highs, and some lows, but not nearly as many as I remember. His three month average BG was 180. A quick search on the internet indicated that his A1C would be 8. Eight.
I am not a person who loves to do errands, chores, tasks around the house. I put off any and all household tasks until the situation is dire. If it were up to me entirely, we would all do laundry only when no one had clean underwear. Somehow, the task of downloading the pump, crunching the numbers, and making adjustments has fallen into the same "oh yeah, gotta do that chore" as laundry. Which is ridiculous, really. And a little pathetic. Yes, it is an annoying, redundant chore, much like clothes-washing. But the results - better long-term health for my CHILD - are far better than clean underwear. And still, it falls by the wayside.
Today we met with Deb, and as the amazing web predicted, TJ's A1C was exactly 8.0, a number Deb was actually fine with. In the past, TJ has been both higher and lower than 8, and it is the top of the goal Joslin sets. It does still seem like a bit of a failure on our part, but there were many other successes: Deb is pleased with how active TJ continues to be, as well as his increased weight - something we have been working hard at. We were able to put additional opportunities for TJ to be independent into his school plans, something TJ was excited about, and Deb was all in favor of. Overall a good visit.
As for the A1C - we'll have to keep at it. Maybe download that pump each time we do a load of laundry.
Thursday, July 1, 2010
Sunday, June 27, 2010
Summer :: Two
Towards the end of Friday's outing to Woodneck beach, TJ's pump started emitting a sound not unlike the alarm that the national weather service puts out. Buried in his cargo shorts, under a towel, it was subtle, but persistent. We have had very few issues with the relatively new Animas, and the code "Call Service/Delivery Stopped" was a new one for us.
We were already considering our departure from the beach when the pump began alarming, so truly, this was not a day-ruining alarm. We made light of the situation, joked with our friends about the broken pump, and packed it in. Not that big of a deal. The situation was (eventually) remedied, with only one call to Joslin and two calls to Animas. In the scheme of "things that could go wrong with diabetes" this was a very small event.
But, still. At the beach, packing up early, in a slight panic, and with a kid I could tell was on the verge of a meltdown, I stood there smiling, putting on my happy mommy face. Why? Why do I always say "he's doing great" or "diabetes isn't that big of a deal" when in reality I want to scream "diabetes sucks, and I wish my kid didn't have it."
Obviously, diabetes isn't the end of the world. As I have said often, TJ is a very well adjusted, happy, athletic, amazing kid. Every now and then, though, I would like for him to not be the kid that leaves first. Not be the one sounding an alarm - literal or figurative. Not be the one counting carbs at the ice cream truck.
This spring has been diabetes-heavy. We have gone through spells where diabetes has truly been in the background, but these past few weeks have not been among them. Diabetes has been out front and center at baseball, requiring in-the-dugout site-changes and sometimes keeping him on the bench. It has been a presence at school with persistent highs. It has made itself heard at friend's houses, where sites have come out. And now, as summer is starting, it has insisted on interfering at the beach.
I'm sure the pendulum will swing again, and we will have a stretch of weeks where diabetes is tucked in the background, barely noticeable, and my smile and "oh, diabetes isn't that big of a deal" comment may be truthful. But not today.
Thursday, June 24, 2010
Summer
Spring was chalk full of soccer, lacrosse, concerts, and school events, but summer is being ushered in, for sure, by baseball. Many, many nights watching a fantastic group of little guys play their hearts out. And every time this boy takes the mound and throws stikes, I can't help but think that he is showing diabetes who's boss.
Monday, May 24, 2010
Contrast
Beautiful morning on the boat; salt air, sun, family :: no lunch...blood sugar is too high, and we didn't bring a site change
Baseball game; a nail-biting tie featuring TJ as the saving pitcher :: a shot and the second site change of the morning...in the dugout right before the game
Celebrating the tie with flav-or-ice :: watching friends have flav-or-ice...it has too much sugar
Jumping on the trampoline with friends :: low...coming in for juice
Playing Wii with friends :: low...stopping for juice
Falling asleep after a long, fun day :: low...downstairs again for more juice
Sunday morning; slow wake-up :: wet bed and high...too much juice the night before
Donuts at a friends house :: watch friends eat them...they are frosted, covered in sugar
Soccer game :: on the sideline at the start...chugging gatorade to bring up a low
One weekend :: Diabetes with him every minute
Baseball game; a nail-biting tie featuring TJ as the saving pitcher :: a shot and the second site change of the morning...in the dugout right before the game
Celebrating the tie with flav-or-ice :: watching friends have flav-or-ice...it has too much sugar
Jumping on the trampoline with friends :: low...coming in for juice
Playing Wii with friends :: low...stopping for juice
Falling asleep after a long, fun day :: low...downstairs again for more juice
Sunday morning; slow wake-up :: wet bed and high...too much juice the night before
Donuts at a friends house :: watch friends eat them...they are frosted, covered in sugar
Soccer game :: on the sideline at the start...chugging gatorade to bring up a low
One weekend :: Diabetes with him every minute
Sunday, May 16, 2010
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