Tuesday, May 18, 2010

Almost... but not quite

I know I say I try not to get hung up on the numbers, but I'll admit it, I was a little disappointed today.
Three months ago Jonathan hit the A1c target of 9.0% he was given two months prior to that.  At that same visit in February, he was given a new target of 8.5% for our May visit.  Looking at all the data we've collected over the past 90 or so days, I thought for sure he was going to come in under that… not so...  8.7% today.  The nurses were thrilled and reminded me that for a 4 year-old the "gold standard", as they put it, is anywhere between 8.5%-9.0%.  The Doctor on the other hand seems to be of the same opinion I am - almost… but not quite.  I'm not entirely convinced that these tests are confined to a 90 day period - I've seen some indications in my reading that it's more like 120 days which means what was going on since his 9.4% in November is still in play.

On the up side, his trend is downward which is a good thing.  We’ll be going back mid-August for his next check-up and I think we're in a better position to get that 8 1/2.  We're leaving his meal ratios alone for now, but we're going to try out a new correction scale.  Currently his standard correction scale is >15.0 = +1ū, >20.0 = +2ū, >25.0 = +3ū, >30.0 = +4ū, and his night time and school lunch corrections are, >15.0 = +1ū, >20.0 = +1.5ū, >25.0 = +2.5ū, >30.0 = +3.5ū, just to be on the safe side.  We decided this morning to max out the capability of his pen for corrections at home (anything other than school lunch) by using a 1/2 unit scale.  We're going to start at 13.0 = +0.5ū and add 0.5ū for every 2.0 more (ex. 15 = 1, 17 = 1.5…) and see how that goes.  I'd really like to hit 8.0%, but as long as the number keeps dropping I'll be good with that.

We talked again about pumping and they insist that we're already doing all of the data collecting and analysis to enable us to easily transition over however, for some reason I'm still stuck on getting past the 1 year mark first.  That and I know I need to spend some time to do serious research on the options available.  I did find out though that omnipod is not available in Canada - our clinic had 1 patient on it, but they went to Michigan to get it and paid all the expenses out of pocket.  I still have some concerns about pumping, but I think it's likely we'll go that way in the near future.  I told them that if they have a pump with a CGMS that will send readings and error codes to my Blackberry and I can send instruction to the pump, then I'm on board.  I'm still concerned about infection at infusion sites and issues with insulin being prevented from making it to his body (kink, crack, etc…), but I have more of an open mind about it, especially after reading about some of my friends' pumping experiences (gotta love DOC) and I have little doubt that we'll at least give it a try.

Other than that, he's gained a couple pounds and grown almost an inch, still riding the 75th%ile curve.  He's had a little morning cough but that seems to come and go on allergy days since we don't give him anything for that.  All in all, not too shabby :)


  1. Congrats on bringing the A1C Down! That is an accomplishment!! Keep it up, he'll be where you want him before you know it!

  2. I wish a cgm would send alerts to a phone and we could then tell the pump what to do... THAT would be awesome :)

    Someone needs to start working on that!!!

  3. Great Job! Keep your eyes on the ultimate goal - DOWN! You're all doing a great job! Don't be too hard on yourself!

    Sign me up for that cgm/pump that sends alerts to the phone! How great would that be?!? Just think about when they go to college!!!

    Glad you're keeping an open mind about the pump. Just an FYI- we have been pumping for 8 months (not a super long time, I know) and we have NEVER had an infection at the pump site. I don't even use any neosporin. It's just a little red spot that is usually healed by the next site change. Don't let that keep you from it - you never know until you give it a go!

  4. WOOHOO!!!!!!!!! Great Job, Team Jonathan!!!!!

    It's funny because for almost 3 years, I felt like anything in the 7's was just an elusive wish that I couldn't grasp. When we got there, I felt like we had to make it under 7.5. When we sat there for 2 years, I felt like it still wasn't good enough and kept wondering why in the world I couldn't grab a 6. Just once. JUST ONCE?????

    So...we did. Just a few weeks ago - 6.8

    And ya know what. I'm still not happy...now I'm wondering if she's having too many lows. Wondering if I've missed lows. Wondering if I'm being too aggressive and setting a standard for myself that I won't be able to keep.

    It's been almost 5 years. ARGH! And all this time I kept thinking that stinking number would make me happy. But it doesn't.

    It really is just a number...if I dwell on it too much, I'll go crazy. Then I won't be able to be the mother Addy needs.

    I have to just let each one roll off my back...and move on.

    Anyway, as for the pump -- we're BIG fans. I would be a BIGGER FAN of your Blackberry idea, though. It took us over a year to even consider a conversation about a pump -- and 18 months before we actually started one. I was a stomping, fingers in my ears, LA LA LA LA LA LA, don't want to talk about it mama.

    It's been the best decision we ever could have made for Addy.

    Good luck :)

  5. Congratulations on a lower A1C!!! That is wonderful, like Wendy said...we always feel like we can do better.

    But when it comes down to it, we are all doing an amazing job. If I stop and think about what it is we are doing it amazes me daily, we are staniding in for a pancreas for our kids and that is a tough job!

    You are doing awesome :)

  6. HEY...LOVE the Blackberry idea!!! Pat yourself on the back Marc. You are getting the A1C down and that is the ultimate goal.

    As for pumping...I was really concerned for Joe when we first did it. He was only 3. I was concerned with his activity level that he would dislodge it etc. Well, it has only been dislodged once in 3.5 years...NO infections...bad sites maybe here and there, but you catch them early...and excellent A1Cs. So...when you are ready...if you are every ready...everyone is different I know...feel free to ask me any questions. I'd be happy to share our experience with you.