Off the Dial

Dream a Little Dream / Diabetes Snapshots

Finishing up Diabetes Blog Week – and combining the last two subjects into one.  Dream a little dream – life after a cure. & Diabetes snapshots. 

Thinking about a cure is odd for me.  I'm not the one with diabetes – my five year old son is.  Because Benny was diagnosed at 23 months, we don't really talk about a cure. I think that would be hard for him to understand (he just got the concept of the day after tomorrow) and I don't want to get his hopes up.  Right now, when we talk about raising money for JDRF or Walking for a Cure, we talk about making diabetes easier to manage, and having less pain and poking.

To be honest, I have always had his Bar Mitzvah date in my head as a significant milestone.  I'd love to at least see the artificial pancreas by then (mark your calendars, Benny will be called to the Torah in 2018!).  And by the time he goes to college, I'd love for him to be able to sleep late and eat poorly as his friends will likely do.

Bennycheck (Dude can't wait for his snack!)

Here's a small part of my dream for a cure: that we won't have to go through crazy ups and downs like we did this past weekend.  I hate when Benny feels bad and I often feel that, as his caregiver, I caused it.  I know, we can just do our best, but you talk about Mommy guilt! I would like (selfishly) to see that go away. 

Saturday was hot and late in the afternoon the kids and Slade went outside to play.  When Benny came in hot and sweaty, I gave him a drink and an ice pop, and a bolus. I had just checked him before he went out and didn't think to do it again. Little while later he wasn't feeling so well. Hmm, wonder why?


He wanted to eat everything in the fridge (lows can make you very hungry) so we went from a snack right into dinner. But we rode the low pretty well and he never went above or below the 100s – which is great.

Next day – we were up and out early for a charity project - great morning of outside yard work to help Hospice House. The pump starts beeping… because we forgot to refill the insulin cartridge. I always have stuff with me, so it should have been easy.  However, we're testing the Animas inset right now and I only had Cleo tubing with me.  A brief moment of panic, then I thought to re-use the inset tubing and just change out the cartridge. Slade said something to me about that, but I didn't tune him in. I was just feeling mighty clever about MacGyvering the thing. 

Especially after Saturday's crazy low, I was a little worried - Benny was shoveling mulch, pulling weeds and running around a lot.  I let him have some full test lemonade and assumed we'd be in the low 100s.  But when I checked him, this is what we got:


Over the next hour I checked the "click" (what we call the inset connection to the tubing), the inset itself and thought about what Benny could have eaten.  Finally, I took the pump off and checked the tubing itself.  It was full of air! There were a few drops of insulin, but not much. There weren't any bubbles in the cartridge, but apparently there was a little pocket of air in between the new cartridge and the old tube.  Grrrr. I re-primed the tubing and we were back and pumping.

Later in the day I remembered Slade's comments as I had changed out the cartridge. He laughed when I asked him about it.  Turns out, he was trying to tell me to watch out for air bubbles in the old tubing. It was perfectly logical to him that it could happen. Have to say, that never occurred to me! So exciting when diabetes teaches you something new (did that sarcasm come through?).

A Body In Motion…(will probably go low)

Day 5 of Diabetes Blog Week – we're talking about exercise.

If you ask Benny what his favorite sport is, you'll get a different answer every day. Football, baseball, soccer, swimming, golf. A typical 5 year old, he never stops moving. Benny is full tilt boogie from the moment he wakes up to the moment he flops back into bed at night.

Of course, some activities are more strenuous than others, so we try to run Benny's bg a little on the high side when he swims, for example, or anytime I know he's going to be playing hard. It can get a little tough, not right after the exercise, but overnight. He's gone low a couple of times after swimming all afternoon, but usually we're able to anticipate it.

Sometimes we do have to laugh. Benny was diagnosed at 23 months and I was very fearful of lows, especially since he couldn't articulate how he felt.  That was me at playground yelling, "You can't play anymore unless you eat this cookie. Get over her and Eat This Cookie!!" The moms probably thought I was nuts, but the other toddlers were totally jealous.

I can't wait to see what sports Benny enjoys and decides to concentrate on as he gets older. He keeps telling me football. I'm hoping golf.  Either way, I'll be cheering him from the sidelines – and you know I'll have a package of cookies in my purse. (You never know!) 

To Carb Or Not To Carb?

Still going with Diabetes Blog Week. Today's topic – food!

Last week at Carowinds, I used my phone to look up the number of carbs in a corn dog.  That tells you a lot about the way my family eats (and also about why I love my new phone). The fact that I let my son have a corn dog and that I had to look up the carbs. It's not as though that's an every day food for us! But I bet you would never know by our diet that Benny has diabetes.

Corndog (56 carbs, by the way – although I didn't believe that. That's no low-fat Hebrew National beef frank in there.  I went with 70 carbs and a one-hour combo bolus. Perfect. This time.) 

Early on we learned that a low-carb plan doesn't work very well for a little kid with diabetes.I wrote about our attempt to put a two year old on the Atkins diet here. Upshot: bad idea. In an attempt to keep his carbs and insulin injections down, we started eating all sorts of high fat meat and cheeses that we'd never eaten before. Yuck.

We do like to try to have the whole family eating the same kinds of food, the same meals and snacks. Right now, Benny's favorites include any fruit – especially watermelon and strawberries. He loves broccoli and carrots, roast chicken, turkey meatballs, hard boiled eggs and grilled cheese.  Because we live in the real world, he also loves hot dogs, tater tots, cookies, brownies, frosted flakes, milkshakes and ring pops. And don't forget banana splits!

So, yes there are treats and of course there are limits.  I have an either or policy for cake and juice boxes at birthday parties, for example. My friend are always pleasantly surprised when they ask if they should provide a sugar free alternative for Benny, and I can so no (although it would be nice if someone served water or even flavored water once in a while)

We also own an Italian restaurant and my husband is a great cook.  We love pizza and it's fun to have the kids try calamari and eggplant parm!Rotelli (Yes, that's us, Rotelli Pizza & Pasta, corner of Carmel Rd & 51 in Charlotte.) 

Overall, I still can't believe the flexibility of eating for type 1 diabetes. It's not at all what I expected and I am so grateful for all the research that's come before to lead to insulin pumps, etc.

We do have a new food adventure for us coming this fall: school lunches!

Diabetes Blog Week – Your Biggest Supporter

Continuing as part of Diabetes Blog Week…

I've written about some of my diabetes heroes before, here and here. It's fun to look back on both of those posts – they were written in the first year after Benny's diagnosis. 

It's been three years, now, and I have to say my biggest supporter is my husband, Slade. I hope I'm his.  We are very much a team – and not just symbolically.  Usually with a chronic condition like diabetes, one parent ends up taking the lead role.  That's not the case for us. I'd like to say it's because we're such a modern-thinking, sensitive and caring couple.  Truth is, it's because our schedules are crazy!

I work very early morning hours (I leave home at 4am) so he gets the kids every morning. Slade owns Rotelli, an Italian restaurant here in Charlotte, so often he's there in the evenings. Sometimes we even see each other.

How does he support me? My favorite is when I get an email or a text with "you're a machine!!" telling me about how I took care of this, that or the other. We also work hard to have a sense of humor and a realistic attitude about type 1 diabetes – and we try to talk to Benny about it in the same way.  Slade also backs me up – and often leads the way when I'm frustrated.

Slade truly does the heavy lifting: Benny likes to be held upside down sometimes to change his inset. At 65 pounds and growing, he's getting just a little bit too big for me to do that.  Okay I never did it – some things are just for dads!

Blue light special
(Slade & I show our support for JDRF at last year's Charlotte Gala. We may be as lit as those glow sticks!)