Summer :: 8.0

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.

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.

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.

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

Opening Day

Vacationing

How quickly we settle into vacation. One day in, with Tom headed to Stellwagen in search of tuna, we settled into our slow paced routine of beach, reading, puzzles, and solitaire. I love how much my children were looking forward to Marshfield. The activities - the games, the beach trip - even the exact puzzles - have become a "tradition."

Rope Swinging

There does not seem to be anything that is more quintessentially summer than a rope swing. Pure summer love.

Both Gwen and TJ were so much more brave then I imagined they would be when we arrived at the swinging spot - letting the rope take them far out over the pond over and over.

Just by chance, TJ's cozmo insulin pump is right up front and center in the photos I took of him swinging. On the one hand, I love these photos - pictorial evidence that diabetes never holds him back. On the other hand, they are a reminder - diabetes with him, no matter the day.

30 Days

Many years, the coming on of August causes me to panic. In so many ways I have yet to settle into a summer routine, yet all of a sudden the end is in sight. This summer - one filled with unpredictable weather, a busy work schedule, and a two-week stay away from home - I find myself entering August with a sinking feeling that summer will end and I will not have lived it.

But, in reality, summer is only peaking - there are many days left to be enjoyed. In order to live them just a little more deliberately, and to share them with my children, I challenged each of us to keep a journal for each day in August. The children were each treated to new spiral notebooks and markers to help encourage them and each dutifully filled the first page with color, prose, and drawings detailing our first day of actual away-at-a-beach-house vacation. I promised them I would blog each day this month.

Although the first half of summer has passed by in a (non-documented) flash, the images on my camera tell tales of long, fun-filled days. Rope swings, boat rides, beach excursions. Fun, any way you remember it.

Red Sox

A (long ago, at this point) April vacation trip to Fenway...the first night was rained out, so we ventured to the city again the next day for the make up game. Lots of Fenway franks, and lots of fun. Click on the photo for a full size look.

Be (Kerri's) Guest

I'm SO honored to be hosted as a "guest blogger" today over at my favorite blog, Six Until Me. Kerri has been an inspiration to me since TJ was diagnosed, and I am still in awe that she would share her space with me. Check it out here!

Stuck in a Rut

Thomas had his appointment with our nurse educator Deb last Friday. Both Tom and I were excited for the appointment, because TJ has had what seem like great numbers lately and we were anticipating a fantastic A1C (and what, getting a gold star? I don't know).

The appointment went really well - Deb is pleased with his numbers, pleased with the adjustments we had made ourselves to his insulin/carb ratio and basal rate, pleased in general. We are A+ parents of a diabetic, apparently. (Which is great for me, grade-grubber that I am...) Oh, wait, but what's that....the A1C you ask. Yeah, still 7.9. Still high. Hmmmm....let's recalculate....B-.

Of course, I'm kidding. Joslin doesn't give out grades, and if there were grades in parenting mine would certainly be less than a B- based on lack of bedtime stories read alone. BUT, 7.9, really. We were sure it would be lower.

Deb was quick to let Tom know that 7.9 is a great A1C for a boy who is as active as Thomas. One might not know it from the A1C alone, but we've actually been struggling with lows lately, since TJ has been playing tons of soccer. Deb reminded us that 7.0 - 7.5 would be considered the best range for a sports-nut like TJ, but still....7.9, again?? Couldn't they have just tossed us a 7.7 to keep things interesting, keep our motivation level high?

So...we'll be back at it. Maybe logging, maybe making more adjustments. I might have to actually crack open that copy of Pumping Insulin I ordered from Amazon. But for now, we're in an A1C rut.

Two

Today marks Thomas' two year anniversary with diabetes. Two years of diabetes. Two years of finger sticks, shots, site changes, carb counting, lows, highs, middle of the night wake-ups. Two years of worry, heartache, learning, growing, adjusting.

Two years. Two years that could be two minutes or two thousand years.

It's amazing how this disease can be so much a part of everything, and still a constant question mark, still a steep learning curve.

Too much to say, too many conflicting emotions.

Two.

Letting it Go

Of course, winter has taken over, and blog posting has gone by the wayside. I have been busy, I think. Not sure what, exactly, I have accomplished, but every minute has felt scheduled and my house is NOT clean!

Thomas had a trip to Joslin in December - right before Christmas - and met his new endo. I liked his old endo, but love, love, love his new one. Dr. Ricker is fantastic. She is laid back, funny, and definitely gets it. As I pulled out his log (which of course was downloaded from his pump only for his appointment) and made a comment about all the "yellow" numbers (color coded because they are out of range), she cut me off with a quick "It's not a report card." Thank you Dr. Ricker!

I was nervous about the appointment, particularly the A1c, because he has had many more highs than over the summer, and we are not as quickto adjust highs because we are worried about lows in school. And, although he has seen many more highs since school started back up, his A1c is still 7.9. Still in range, as our nurse educator Deb so kindly reminded me. Is it perfect? Not at all. Is it a great A1c to aspire to? Not really. But it speaks to something new in my diabetes thought process. It is care I am comfortable with for Thomas for now.

Diabetes brings so many added responsibilities, so much extra in general for Thomas, that I hesitate to hover over him every minute and control his every movement. I want him to be able to to go to playdates and run off with neighborhood kids whose parents might not be so aware of diabetes. I want him to join the sledding down the local hill or the pick-up hockey game in the road. I want him to be able to enjoy school without 12 trips to the nurse (the 5 he makes each day are certainly enough, no?). And in order for him to do all those things, I need to know he is not going to go low all the time. And that means taking slightly higher numbers sometimes and living with them.

There are parents out there, I know, who would read this and claim that I am abusing my son by not managing his BG as agressively as possible. There are parents who wonder why I wouldn't push for CGMS to monitor his BG at all times and get his A1c as low as possible. It is, of course, an indicator of how his long term health might be. And, I do worry about managing his numbers and his long term health.

But I think in our house, with our child, we have made a somewhat unspoken agreement to do the best for the now. Thomas lives with the reality of diabetes. He leaves class to check his BG. He stays out of the pool when his friends are swimming because he is low. He doesn't get to go home on the bus to houses where the parents have not been trained in diabetes management. He wears an insulin pump and takes shots and tests his blood sugar all without complaining. If an A1c of 7.9 allows him a somewhat 'normal' childhood, and generally good health, too, than I will take it. For now.

Fall

It's been a fall chalk full of soccer, trips, beaches, pumpkins, geocaching, and wonderful time with family. Too many sights, sounds, and events to list each one...

(click on the photo collage to see a large image)

Halloween

At the North Falmouth Elementary Halloween Parade...

And later, before trick-or-treating with our good friends Sarah and Abigail Lott.

Sarah, Abigail, Amy and Ed's neighborhood, Pirate's Cove, has long been home to our annual candy-collecting event. We love sharing pizza and beer with them, and making the quiet trek along the water. There always seem to be just enough other children and stops to make the night fun, but not too crazy. Many of their neighbors are elderly and seem to love seeing the kids, which is nice, too. And my dad would be proud that I'm keeping up the Kerrigan tradition of drinking whilst trick-or-treating.

The kids each came home with a respectable 2.5 pounds of candy, give or take the weight of a plastic orange pumpkin, and each happily pulled out a few favorite pieces and then traded the bulk of their loot for cash. As it turns out, candy is just about as bad for braces as it is for diabetes. Now the challenge is for us not to eat it all!

How...

Did I ever live without picassa? Suddenly the thousands of digital photos I have on my computer have a purpose.

Cropping, adding effects and text, removing red eye, making collages, and uploading online albums all in the matter of seconds? Seriously.

Is there anything better than Google? I think not.

Less

Over the past six months, diabetes has been as present as ever in our lives. Thomas started on an insulin pump, but the daily in and out of diabetes is the same. Testing. Bolusing. Site changes. Rinse and repeat.

Somehow, though, diabetes has receded; become less. While the daily chores are the same, the emotional toll is so greatly diminished.

The day school started in Bourne, TJ's pump broke. TJ was supposed to be sleeping over his grandmother's, and we needed his pump to be working. But while the whole thing was a huge pain - I had to order another pump, rush home the next day to program it and do a site change before rushing him to Grandma's - it was just a pain - nothing more.

A woman at work asked about Thomas the other day, wondering if he was "all set and under control now." As I was briefly explaining that while he was doing well, we have to monitor him each and every day to keep him that way. It dawned on me, though, that diabetes care had become less like a terrible, sad imposition, and more like changing a diaper - not the best part of the day, but something that needs to be done.

In the meantime, my blogging has suffered. Carey wrote once that he was always waiting for his son to "do something diabetes-ish" to be blogged about. And while there have been things to write about, I just don't care to, or haven't had the time to, or a little of both. So, the tales of by the numbers may change - to the stories of regular life. Which is, after all, life with diabetes.

Boo!

Look what we made this morning...

all lit up...

Walk on the Wild Side

"Team TJ" came out of retirement to strut it's stuff on October 4th in Boston, and strut we did. The day was fantastic, falling into place amazingly. We took the T in from Cambridge, met up with the other team members easily, and walked at the front of the pack in beautiful weather.

This year our team grew. All of the Kerrigans came out to support us. We were especially happy to have Warnick family members Cassie (also Type 1), Dave, and Christine join us. Grandma came along as well, and Grampee came as an honorary member (anyone who rides a motorcycle all the way from Indiana and still wants to walk 3 miles can join our team anytime!).

Unlike last year, this year's walk was much more fun and far less stress. Suzanne helped with the t-shirts and logistics, and for the most part I was able to keep myself in check, remembering that just being at the walk is enough. We did raise a more than respectable $4200, but even if we had not, the walk was a success in my book. As beautiful day, a reminder that we are not alone in this journey, a fantastic lunch at Boarder Cafe. And really cool t-shirts from customink.com...a great day all around.

Many, many thanks to Sally and Kevin, Mike and Suzanne, the Kerrigans, Warnicks, and Bornings, and TJ's amazing friends! As I have many times, we are so lucky.

See more pics of the day here:

JDRF 2008

50 Years?

Today on facebook, Joslin shared a list of all of their recent research finds. These are obviously meant to be positive - possible hopes for a future cure.

This piece, however, struck an unintended nerve:
Study Finds Individuals with Long-Term Type 1 Diabetes Still Capable of Producing Insulin: Surprising Finding Gives Hope to All With Disease
June 8, 2008 – Researchers at the Joslin Diabetes Center in Boston have discovered that a significant portion of people who have had type 1 diabetes for 50 or more years still have the capacity to produce insulin, a finding that has potential implications for improved treatment for all with the disease. To read more, click here: http://www.joslin.org/1083_4367.asp

It is definitely an interesting piece. After diagnosis, you spend a decent amount of time wondering when the "honeymoon" will end. When will the pancreas finally stop producing insulin all together? To be honest, in some ways I was eager for the honeymoon to end, because I thought that things would be more predictable. No more would TJ's pancreas somehow sputter to a start again, kick in a little insulin, and send him low. Or let us down when we were counting on it, if even for a small bit of insulin production.

But this study suggests that even after 50 years of living with diabetes, some people are still capable of producing insulin. The lead doctor goes on to say that this finding could lead to a possible change in treatment, if they find ways for people who have had diabetes for less time to produce insulin...BECAUSE, he says..."it's very rare for someone to live with Type-1 diabetes for 50 years."

Well, then.

I've posted before about my concerns for TJ's long-term health. But I can't say I've been viewing diabetes as a death sentence. TJ was diagnosed at 6. Does that mean that it will be unusual for him to live to 56?? Obviously so much could, and most likely will, happen in science and diabetes treatments over the next 50 years. There is no way to predict what Thomas' diabetes life will be like. I'm sure people who are in their 50's now and using an insulin pump never imagined they would be - especially when they were measuring their BG with urine strips and taking insulin only once a day.

But still, I generally defer all diabetes opinions to Joslin. So far they have proved to be nothing but amazing in their understanding of diabetes and their commitment to a cure. Hearing right from that particular source that it would be "very rare" for Thomas to live longer than 50 years. Too tough to take.