We walked.

Caleb at the JDRF walk - 10/18/09
Caleb at the JDRF walk - 10/18/09

We walked to raise diabetes awareness and funds for a cure.  We were overwhelmed by the generous response from our friends and family.  We set out with a total goal of $1,000, hoping for perhaps $500 of contributions that we would match.  You met that challenge and more than doubled it.  Thank you so much for all your support!

I’ve seen so many pictures of walk teams with blue skies, colorful t-shirts and well, sun and warmth.  Our pictures are a little different.  But that’s okay.  We walked in honor of Caleb and all PWD because we want better for them.

I’m so proud of my family.  It was pouring on us, forty degrees, strong winds whipping our faces and our path was riddled with puddles.  Lila was “bubble girl”, essentially wrapped in plastic.  Not a single complaint from anyone.  Caleb, Colin and David were the last walkers there – still trudging through the mud and puddles while others were packing their vehicles or were long gone.

At the walkThen we returned to our vehicle, took off our soaking layers and headed home, stopping for a well deserved treat of Dunkin’ Donuts on the way (I’m happy to report BG has been hovering between 80 and 100, with a nice flat arrow).

I knew we would create a memory today.  I had pictured it differently, but it’s a great memory nonetheless!

Anyone interested in making a donation to the JDRF can do so here. Or just click to see and hear the goal thermometer explode!!

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Taking the CGM Plunge

DexcomI admit it – I resisted.  Mostly because I could not bear to think of having to pierce Caleb’s skin for yet another reason.  Finger sticks and pump insertions seemed like quite enough. Adding a CGM – another poke, another pain, another apparatus strapped to him – seemed too much to ask.

But it remained in the back of my mind always.  Every time we waited for the blood drop to register – that little game of roulette we play ten to twelve times a day – what number would pop up? It’s part gamble.

Caleb and I talked about it.  He bravely agreed to try it.  I nonchalantly started the insurance process expecting it to be a long series of rejections and appeals. I was still reluctant and took every step with much more time than was necessary.

Then we went out to eat for grandma’s birthday.  Caleb chose his favorite – pasta.  I will not allow diabetes to make more choices for him than necessary.  So even though I hadn’t dosed him for regular pasta in a long, long time, I gave it a try.  I weighed his portion and bolused him reducing it by an amount I remembered working back when we weren’t eating new pastas.

We were off to a good start.  Blood sugars were behaving nicely.  But then shortly after he went to bed he yelled saying he felt low.  He was 22 and he got there within minutes. We’ve never seen 22 before.  More alarming was his reaction: “Mom, why does everything look so small?”  “Mom, I feel like I’m gonna die.”

He was back in range quickly.  But I don’t want him to ever experience that again.  I couldn’t help but think CGM would help.  So I stepped up the insurance process and within a week I got the call that he was approved.

Fast forward to the first insertion:

So how is it working?

As expected.

I made the mistake of expecting miracles when Caleb started pumping.  I didn’t make that mistake with CGM.

It is helpful.  It is informative.  I appreciate having to play roulette less.  I felt a sense of relief immediately being able to watch Caleb’s blood sugar change rather than get slapped in the face every two hours or so.

But, like pumping, it’s far from perfect.  Glucose readings must be verified before acting, so we have yet to reduce finger sticks.  In fact, we’ve done more than ever to verify all the ups and downs within those ten to twelve times a day we traditionally check.  It’s not always accurate.  Sometimes it’s WAY off.  But much of the time it is meaningful.  And it’s true what everyone says: the trends are the real value, not necessarily the numbers.  But, when it does work and work well, it’s actually pretty fabulous.

I really want the theory behind CGM to be the true reality of CGM.  I want it to tell me what his sugar levels are 24 hours a day.  It doesn’t.  It doesn’t “catch” his lows and highs. It alerts us to the possibility or even likelihood of lows and highs – but sometimes not even that accurately because there is a lag between its readings and his actual blood sugar. Compound that issue with its readings being off maybe ten to twenty points and it’s easy to miss lows.  So it can catch his highs and lows, but it doesn’t do that as a rule.

So far CGM has softened the extremes in Caleb’s blood sugar readings.  It is a step forward in Caleb’s care regimen. I am glad to have it.  It is, however, a much smaller step than I would have liked.

In all fairness though, we are still new to it, and I am optimistic that our learning curve will improve and the small step will become at least a little bit bigger.

Nevertheless, it is too much to ask.

To pump or not to pump

First day with the OmniPod - April 24, 2007
First day with the OmniPod - April 24, 2007

From the very beginning, when Caleb was in the hospital at diagnosis, there was talk of pumping. “Oh it will be so much easier when he’s pumping.” “Oh he’ll be able to be more of a kid when he’s pumping.” “Pumping will provide so much more freedom.”

Well why on earth are we giving him shots?

The thought of pumping at first to me was a little horrifying. I didn’t understand how it worked and my imagination formed images that I didn’t like. I envisioned a permanent “something” surgically implanted in him. It seemed very sad. Very medical. Very dependent. No one showed us what it entailed. We just heard how great it was.

I’m not sure when exactly I got over those self-formed images (which of course were all wrong), but I knew Caleb would start pumping ASAP. All I needed to hear was that it was the best way to get control, would result in the best BGs and therefore give him the brightest outlook. The rest didn’t matter. My early reading included the results of the DCCT study. Enough said. Sign us up. When do we start?

Even so, I still had reservations. In those early days I watched Caleb running around, being a three-year-old and tried to envision this device strapped to him. It seemed like the increased freedom came at the price of the loss of other freedoms. We were just picking the lesser of two evils. Sigh.

Bless our dear friends, Dan and Meri. Dan’s company was investing in this new product by Insulet Corporation – had we heard of the OmniPod? Why no. Could this be? Is there actually an insulin pump that you don’t have to be strapped to? This must be a mistake – something new and not yet approved. Why has no one else mentioned this to us????

I cannot express how fortunate we were at the timing of things. Dan’s query came at exactly the point when I was looking at the various pump options. Had he mentioned it a week later, we may have made another choice.

I did my research and I was sold. We were decided. We were going to give the OmniPod a try. Now how do we get it? And WHEN??

I was told, “Oh the insurance won’t just pay for it. Needles are cheap. Pumps are not. You will have to wait at least six months and show that you can’t control his BG on injections.” That was not appealing. I wanted to do whatever I could to keep his BGs in control. I almost felt like we were better off not keeping his BGs in range.

And that doesn’t even touch upon the fact that many insurance companies were not yet hip to the OmniPod in early 2007. Our insurance listed it as a CGMS and thus would not cover it. I was prepared for a battle. I had my ducks all lined up.

That was all misinformation however. As soon as we could, within 3 months of Caleb’s diagnosis, we submitted to our insurance our request for a pump. We were told it would likely be rejected and we would have to appeal. We didn’t. I got the call one day. “Caleb is 100% covered.” I’m sorry, can you repeat that? “This is Insulet Corporation and I’m calling to tell you that Caleb has been approved for the OmniPod, 100%.”

I was elated. It was the best news I had heard in months.

To pump or not to pump. It is a very personal decision and requires careful thought. It is not for everyone. But for Caleb we chose to pump. We are very glad that we did.