Pumped!

Well, despite a two month hiatus from blogging, Thomas is pumping with the best of them. I have actually been holding off on this blog post until I could include a photo or two, but life has been a whirlwind, and I don't have any photos. I do have a day, off, however, so I'm updating the blog. Words only will have to do.

Thomas was "officially" hooked up over April vacation, and things have been running very smoothly since then. It's amazing how quickly the new "normal" replaced the old "new normal" of MDI (shots) therapy.

Thomas is pretty quiet about the pump, but when pressed he has all good things to say. Sure, most of them are verbatim things I told him would be good about pumping, but still, I think he likes it. It certainly has made life easier on our constantly on-the-go family. His numbers have also been much better.

Thomas has also been able to take even more responsibility for his care, which is nice for everyone. He is (as always) great about testing, and most likely could use the pump totally on his own if we would let him. As it is we have to slow him down to keep up with him. He was able to give a very detailed description of how the pump works it's magic to both Gram and Nanny, and successfully completed an overnight visit at Mimi and Papa's. Overall, the pump rocks!

The beach might be interesting, but all else is fantastic. The pump definitely minimizes the (inevitable) disruptions that diabetes brings with it.

Seeing the Future

When Thomas was admitted to Children's Hospital almost a year ago, the constant message from the doctors, nurses, social workers, and child life staff was "you can do it." A large team of (very-well paid) cheerleaders, the CH crew made it their goal to drive home the message that life with diabetes was manageable, even swell.

Part of this, I'm sure, is survival on their part. There is a lot that parents (and children) need to absorb in a short time. In order to confer the most basic and important information, and be sure it sticks, the staff needs to focus on it and only it. The checklist is out during every meeting, and the staff is slowly but surely checking off all the requisite skills: drawing up insulin - check; treating a low - check; counting carbs - check; planning a meal - check; and the list goes on an on. There is just not time enough in the three or four days to dwell on anything but the necessary, and in order to do that, they need to keep parents in an up-beat "you can do it" frame of mind.

But even with all the cheerleading, the concerns creep in. At first, my concerns fell into one of two categories - self-centered or Thomas centered. Will we be able to eat out? Will we be able to leave Thomas with a sitter? Will he be able to play at his friend's houses? Will I have to quit my job. The worrying was endless, but it was all about our lives at the time.

Now, though, almost one year later, my worries have grown to those topics that were pointedly avoided at Children's: the life-long complications that diabetes carries with it. Although no doctor has laid the "risks" of type 1 out for us, it has become clear that there is not a part of TJ's body that is not open to the devastation that D can bring with it. Dentist appointments and check-ups - previously a nagging but minor concern - are now at the front of my mind. Diabetes advertisements that were background noise before are now red flags. The ubiquitous "ED" ads that once made me blush now remind me that if, in fact, I don't keep those numbers under control the consequences will resonate in every part of TJ's adult life (even the parts I would otherwise choose not to think about.) "Will he be able to go over a friend's house" has been replaced by "Will he see his grandchildren?"

In reality, none of us can see the future for our children. There are many tragic endings all parents avoid thinking about. Will diabetes ultimately get the better of Thomas, or will there be a cure in 15 years. No one knows. Each high or low number on the meter (heck, each test on the meter) stands as a reminder that we might not be doing enough to keep these complications at bay. But, today, almost one year in, Thomas is a healthy, happy boy who happens to have diabetes. And that is as far into the future as I can see.

Going on a Bear hunt...

Last weekend the whole family trekked into the city to attend the Diabetes EXPO at the seaport world trade center. Although none of us were entirely sure what to expect, I had heard rumors of 'freebies,' and really wanted to get my hands on some! On top of the EXPO (which I worried might be rather boring for the kids) there was the Joslin Teddy Bear Clinic, one of the most well advertised events on the annual Joslin kid's calendar.

So, early Saturday morning we all headed to the city, bears in tow, to check out the scene. We were greeted at the entrance to the exhibit hall by a teddy bear who immediately drew the kids into, well, bear hugs and a TV camera that immediately made me nervous. The EXPO greeters were thrilled, cheering for us..."you might be on channel 5."

Next stop, Teddy Bear Clinic, where the kids took their respective bears (Tyler and Blacky) through the different parts of the Joslin check-up (blood draw, blood pressure, etc.) and also participated in some more routine diabetes care - making a BG log, testing blood sugar, planning a meal. Both Gwen and Thomas were enthralled, carefully completing the task at each station and doting on their patients.

We did score 2 free meters(!), found a new juice that has no carbs (it does have splenda, or course,) and even got to sample a little sorbet. Overall a very successful trip.

And the take-home message has lasted all week. Although I thought the "pretending" might be a little beneath the kids, both have been enthusiastically checking their bears' blood sugar. They drew and gave their own (saline) shots for the bears before bedtime one night, and Thomas is keeping a better log for Tyler than we keep for him. And the best part? The kids actually WERE on the channel 5 news that night.

D - upDated

So much has been going on...which seems to leave very little time for blogging. But, much of it has been good, exciting, and fun - a needed change. So, in no particular order, a few D updates:

We had our two pump visits in January and February (complete with math homework). The first was less than successful, ending in frustration followed by an A1C result of 10.1. (Yes, that's right, over TEN!). But, possibly spurred on by the realization that we really were not doing our best "managing" TJ's D, we have put significant effort into getting better control of the numbers, with much success. I think both Tom and I had become resigned to crappy numbers, but with the help of Dr. W and Deb, we have seen amazing improvements!
Our second pump appointment was a breeze, and in only a month his A1C is down to 8.8 (still high, but not as shameful!). So...we are pleased, to say the least. Plus, it is clear how much better Thomas feels when he is in range.

Which leads me to...Thomas' pump came!! His BLUE cozmo is waiting in the box for mid April, when we will do a saline start and April vacation when we will go for the real deal! Never one to disappoint on the humor side, Thomas' one comment when I showed him the pump was "good, buuuuuuut, can you send it back and get a black one, I changed my mind on the color." I'm sure everyone has realized both Tom and I have taken to spoiling Thomas in an attempt to soften the blow of having D, but even I was able to find my backbone long enough to say NOPE to that one!

The pump couldn't be coming at a better time. Thomas - who has thus far been amazing and cooperative at every turn - is finally starting to tire of not being able to eat what he wants, when he wants. Not to mention he has not made any significant growth strides since diagnosis. He's not too small by any means, but he is definitely in a lower percentile than he was pre-D. The nutritionist was pleased with our carb counting worksheets, but made noted on each days logs that his caloric intake was less than a boy his age needed. So, I'm glad to have the opportunity to feed him a little more freely, and with increased calories! We are also very excited about the many pump features, including the attached meter and the integrated computer program. I'm sure there will be many bumps along the pump-paved road, but for now we are looking forward to hooking TJ up with unbridled optimism.

Finally...tomorrow is the Diabetes Expo. We are all excited to check out the scene, score some D-swag, and participate in the Joslin "Teddy Bear Clinic" (because what bear doesn't need a little diabetes care!?!). We'll also be on the hunt for a black case for the (repeatedly requested, apparently undesired) BLUE pump. Hopefully it will be as fun as the promos promise!

Lucky

Over the past 10 months, our close friends - family now - have banned together to be sure that even with diabetes, life for TJ can be the same as it was pre-diagnoses. The many adults in our lives: S and K, S and M, A and E, not to mention Mimi, Papa, and Grandma, have learned to work the meter, count carbs, and recognize a low so that Thomas can play wherever he wants, whenever he would like.

This teamwork is no small feat - my friends work hard, both for TJ's benefit and mine. Thomas comes home from playdates with records of his BG readings from the day. My friends are even more vigilant than I am in testing every 30-45 minutes while his is playing hard. "S" overcame her life-long fear of needles to learn to give an injection. "A" revealed a "diabetes dream" she had a few weeks ago. As we learn more, and as Thomas learns more, our friends learn along with us. Meter talk, BG discussions, pump inquiries...we are all going through it together.

Today, mid-playdate, Thomas ran over to the table to test, and his wonderful pal TE hurried up alongside him to help. Two boys, heads buried together, working the meter. TE unwrapped the test strip while Thomas used the lancet. TE held the meter up to the drop of blood, while they both chattered to a new friend, C, about what they were doing and why. An unfamiliar bystander would have been hard pressed to pick just one diabetic child out of this scene. TE has tested his own BG a few times, and even weighed in when C asked if it hurt.

I don't believe there is enough room in the blogosphere to count the ways in which our family is blessed. Not for one minute have I felt alone in this journey. I am so lucky to have friends that listen, and have learned to care for TJ. Tom and I have never been stuck in a day care dilemma, and we are offered frequent breaks from the constant vigilance of diabetes care.

Watching TJ test - with a friend - today, it struck me that he is not alone, either. No one makes him feel different. Instead, his friends help him out and their parents remark at how brave he is. He travels with the crowd, regardless of his expanded care plan. He does not have to explain testing, carb counting, injections, or the tiring weight of his lows to his best pals - they are all in it together.

I know as TJ grows, and his circle widens, he will have to answer questions about his diabetes. I know there will be days (like today) when I hosted the playdate even though the other child had invited TJ over because I simply couldn't deal with trying to explain everything to someone else. There will be sleepovers he will miss, and birthday cake he will not eat. I know there will be coaches, teachers, and bosses in TJ's future that might not care to learn about diabetes as much as our current circle of friends.

But, for now, we are so very lucky.

Math

In my memories of school, no class stands out more than Algebra. Which is interesting, since I hated math. Moreover, Algebra 1 and Algebra 2 were most certainly top contenders for my two lowest grades ever. (This may be genetic, I recall Dan struggling through Algebra, too) Despite my longstanding inability to get along with math, though, the class seems somehow branded in my memory. The stress of not understanding, and not caring to understand, any of the concepts presented is one I can conjure almost instantly.

I know that what got me to school was band (no surprise there), but I don't recall more than 10 cumulative minutes of rehearsal. I don't remember our routines, the songs we played, what the band room looked like, or even many of the people who would have been there. I know I liked band - loved it even - but that is about as far as my memory stretches.

I do remember sitting in Algebra class, though, with Mr. Kazowka. I remember sweating as he checked homework since mine was incomplete, for sure. I remember watching the clock until class ended. I remember sitting on my bed trying to complete 15 late homework assignments (is it possible to become Type A in your 20's?? I never would skip my homework now!!).

When I went to UMASS, I marveled at my luck for passing out of the first level of required math. Even luckier, I managed to find a logic class (read - word problems with NO numbers involved) that counted for the level two requirement.

What does all this matter? Nothing, until now. Math seems to be one of the cornerstones of diabetes management. There are two known equations - rules, if you will - of determining insulin doses, either to correct a high blood glucose, to cover food, or a combination of both. Until now, we have been oblivious of said rules, because we follow a sliding scale created for us at Joslin. We test TJ, we check the chart, we dose the insulin. Simple.

But now, lured by even the slightest possibility of tighter control, we are moving forward in getting TJ pumping. Everyone has warned us that the pump is trickier, but I didn't think for a minute it was beyond my comprehension.

Until the nutrition meeting. Knowing that we were at Joslin for a pump education meeting, the cute, perky nutritionist we met with launches quickly into carb counting lesson with instantly starts my head spinning. There are equations. There are parenthesis, subtraction, and division. I'm sweating. I know the material in the parenthesis needs to be completed first. I can't really divide, but I can use a calculator with the best of them. We do a few equations and I'm back on track, feeling good. I can do it.

Then, she launches into correcting for a BG is that below target, while also giving food. The concept I get - because he is below target, we need to subtract a little insulin. But, ultimately its the algebra that gets the last word. There are negative numbers, and there is division. In a full on panic, I decide to watch, pretending to get it. I'm nodding, I'm listening. I'm back in 10th grade math - totally LOST. HOW did she get a negative answer. WHY isn't there a negative number showing up on the calculator. I sneak a look at Tom. I can tell he gets it. I, on the other hand, am ready to cry.

So...not wanting to reveal my stupidity, but wanting to pass the upcoming pump test, I finally get up the nerve to raise my proverbial hand:

"Um, OK - it seems to make sense, but you said negative..."

She cuts me off - "yeah, negative - it's less."

I nod, but I'm still lost..."but, that number on the calculator - it looks positive...there is no negative sign."

"Well..." she starts "I just didn't put in the negative sign, but you know its negative."

In my mind I am screaming...HOW do you know???? And then, from somewhere in the depths of my creative, not at all mathematical mind, comes the answer. A negative divided by a positive is a negative.

Thank you, Mr. Kazowka!

Exhaling

At TJ's last endo appointment we took a (small) beating from Dr. W for failing to:
a) control TJ's numbers tightly enough and
b) call in to Joslin when things weren't working.

Both Tom and I had began to frustratedly resign ourselves to crappy numbers, but, as so clearly illustrated by his A1C of 10 (YUP - 10!) we have to buck up and deal a little better.

And, we have. Already in the first week after the appointment we saw some positive changes. Then, blessed by God Herself we had a snowday last Monday. I finally had the time I needed to gather all the data and give Deb a call. Now, for one whole week we have been seeing awesome numbers!!! We are making nightly corrections, so the Levimir clearly needs an adjustment, but we both feel like if a correction shot in the middle of the night is all it takes, well then, bring it on. (Easy for me to say since Tom gets up with him every night!).

Regardless...I'm so glad to see good numbers for a change, and I can't even begin to describe what a different kid TJ is when he actually feels good.