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.

D Tweeps to the rescue!

On the way to the game
On the way to the game

This is a shout out to my friends on Twitter.

Yesterday, we went to an MLB game. MLB stadium means stadium food. Stadium food means unknown carbs and usually not the best food which typically means out of range BGs and stress and anxiety.

Yesterday was different.  We got to the stadium at lunch time and decided to eat. Caleb ordered up a hotdog and the kid’s special came with Kozy Shack pudding – I could handle that.  We’ve done hot dogs often enough and I did a Calorie King search on my phone for the pudding: up to 44 carbs.  Then Caleb’s brother asked for a pretzel – one of the enormous, soft, stadium pretzels.  We got a couple to share.  Okay I could do this.  I did a Google search and a Calorie King search and the results were mixed.  I saw anything from 45 to 101 carbs.  Hmmm.  How do I decide?

Normally in this circumstance I begin to tense.  I am typically surrounded by three children with various questions and needs and all vocalizing them simultaneously.  Any adults present, although aware of the extra work D takes, do not truly appreciate the implications that eating unknown carbs of unusual foods have.  I am alone with this responsibility.  I need to think and think quickly while trying to meet the various other needs of, “I’m hot”, “When will the game start?” “Can I have ketchup with that?”  “Did you see the train pass by?” “Look there’s Jeter!”  You get the picture.

Well yesterday I had a different approach.  I tweeted, “How many carbs in a stadium pretzel?”  Here are some of the responses I received within minutes:IMG_0665

The results were similar to what I had already found from my own searches.  The difference was that I did not feel isolated.  I had people surrounding me who understood.  People who wanted to help.  People who validated what a was considering.  I literally felt like they were there beside me, whispering in my ear, giving me advice and support to make this decision.  I was not alone.

So I took the information and made a decision with the help of my Tweeps, bolused Caleb and we all ate.  I was not stressed and tensed.  I did not feel this big weight on my shoulders wondering if I had made the right decision.  I had input from others.  We did this together.

Yankee Stadium July 18, 2009
Yankee Stadium July 18, 2009

The good news is, Caleb’s BGs were great.  This was the first time an outing was not a disaster of lows or highs or both.  There was no gray cloud of D casting its shadow on our fun.  Although I think part of that is attributable to the alignment of the planets, I know it also had to do with me being able to make good carb decisions.  Caleb felt good, I felt good.  It was indeed a victory.

So thank you Tweeps for being there with me yesterday.  You helped make the day more enjoyable.

Oh and A-Rod hit a homer, Jeter made a great play to first and Mo did what Mo does best and the Yankees had a victory too.  It was a great outing all around!