Friday, July 07, 2006

Now It's Turkish Delight On A Moonlit Night

(Name that tune)

Yesterday, O and I made the 2 hour drive in to Boston to see the endocrinologist. We both kind of enjoy these trips - we get to chat on the way in, we go out to lunch and we get all of our questions answered by people who never get tired of discussing diabetes management. It's fanTABulous.

I knew downloading her meter and pump was going to be scary, given all the highs she's had over the last few weeks. The scatter plot was a mess. Her numbers ranged from 41 (her lowest low) to 591 (her highest high). And there was absolutely no pattern, no rhyme or reason for any of the numbers. However. She's grown a whopping inch and three-quarters since her last appointment three months ago, so that explains a lot of those shitty numbers. She's almost 5'2" now. No wonder she's always tired.

Our first appointment was with a researcher there. She helped us get O hooked up to a CGMS, so O's wearing that for the next three days. I'm hoping it will help us get a handle on her overnight numbers - those are the suckiest ones. I hate that I can't see the numbers as they're being read, but if the printout they get at the end of this will help, then I'll deal. I also had them flag O's name to participate in a DexCom study they're doing in January. How fucking COOL would THAT be??! I hope it's, like, a year long...maybe by the time she's done with the study, insurance will have gotten off their asses and approved these devices for use in children. Oh, and pay for them, since they are very expensive. The DexCom is less than the Minimed 522/722, which is what I really want. That's the integrated pump/CGMS and that's $6,000. Way beyond my budget.

Then we had a horrible lunch at Rebecca's Cafe. Really horrible. I've never had a veggie wrap that had absolutely no flavour, but they managed it.

Back to Joslin for the appointment with the CDE. We discussed O's blood sugars and decided to have her go untethered for her soccer camp next week. So she's on Levemir and boluses thru her infusion site. It's a bit of a pain overnight, sitting there waiting for the pump to do its thing, but it's only for a week. She does seem to be running a bit high, but I'm going to give it a few days. Besides, she may run lower while she's at camp next week. And if the CGMS helps us kick these overnight spikes, then maybe she won't need to be bolused overnight. Wouldn't that be nice?

I was so freaking organized this time, too. I brought all of her log sheets from the last month, I remembered to ask for her school orders and her camp physical form and remembered to ask about going untethered. I can't believe I remembered it all. My brain's so seive-like these days, it's a wonder I remember to put on underwear in the morning.

We're also participating in a study about family management of diabetes. It's for kids 10 - 15 years old and O's loving it because every time they talk to us, they give her $5. She also got a new backpack from them yesterday. So we scored - I got four, count 'em, FOUR boxes of Precision Extra Ketone Strips (which are scarcer than hen's teeth) and a vial of Levemir and O got $5 and a backpack. Plus, we get free parking while we participate in this study. Two years of free parking? Have you seen the prices in that stupid garage? $18 for four hours. Sign me up for the study, man.


Anonymous said...

I miss the trek to Joslin, and the ability to participate in studies to get the free parking. I was a good guinea pig...there were times when I wondered if I was the "don't" portion of how to take care of diabetes during the teen years.

I honestly believe that research studies are crucial to our understanding of the disease. It's not just the new drugs/formulas that make a difference - it's the psychological and physiological studies that help us to understand the emotional and physical impact on individuals and families. If I helped one doctor or one family member to better understand how to treat a diabetic, then it was all worth it. (And free stuff to boot? Sweet!)

I think we did that whole adolescent management diabetes psych study for years. I wonder if it's a continuation of the original?

Kerri. said...

Ah, the Route 9 experience. (Or do you brave 93?) There's the fanciest Dunkin Donuts I've ever seen on Route 9. The letters are all jazzy and gold.

And Rebecca's is great for tea/coffee drinks. The food there (unless you score a bagel sandwich and drain O's pump bolusing for is) is less than awesome.

Kudos on the participation in the studies. Free parking is key. And I think that guy has been working the Pilgrim garage since I was diagnosed. He is there EVERY TIME.

Did you see Dr. R? Love her.

Can't wait to read about the CGMS! And best of luck with the untethered method.

Shannon said...

Good luck with all the stuff you guys are doing!!

You're such a good mom, you know that?

Anonymous said...

I'm on your blogroll! How lovely.

Sounds like the appointment went really well, and best of luck w/ the CGMS. You'll have to give me the scoop on it when you know. (Or, you know, post about it.)

Sandra Miller said...

Istanbul (Not Constantinople)

They Might Be Giants (though I think it was a cover)

Can't tell you how many times Joseph and I danced to that tune when he was a little guy.

Haven't listened to it in a while, though-- thanks for the reminder -- I'll pull out the cd today :-)

Nicole P said...

Sandra's got it. It was originally done by a band called the Four Lads and the lyrics were written by an old Irish songwriter named Jimmy Kennedy. My dad had the record.

When I heard it years later on the Flood album I was soooo excited.

"Even old New York was once New Amersterdam... Why they changed it I couldn't say... People just liked it better that way..."

Now it's going to be in my head ALL the rest of the day.

God I remember treks to Joslin, and I remember the big spikes that went along with growth spurts. Blech.

I never heard from your friend re: Symlin. And - I owe you all an update. My diabetes life has been turned completely upside down.