Wednesday, April 16, 2014

Information overload

At our quarterly endo appointment, Grace's endo decided to download her Dexcom CGM data for the previous two weeks. No problem, or so I thought. About 30 minutes later she appears - because she couldn't get the software to download the data (that's a whole other story about how cumbersome it is to download your OWN numbers and information - don't even get me started that nothing Grace wears/has/uses is Mac compatible - it's like being in the Dark Ages - end of rant).

She is smart as a whip, our endo. Extremely engaged, knowledgable about diabetes, the body, insulin, Type 1, you name it, she knows of it. I feel Grace is in very competent hands with her. She always has something to think about, to add or to just talk about with Grace. She gets Grace and understands her. I love her.

Here comes the BUT part. She lays out the sheets of data from the past two weeks and starts to talk.

'Why this high here?'
'I noticed a couple of lows the last two weeks.'
'Hmmm, do you think her I:C ratio is correct and working, she doesn't seem to be coming down quick enough after a meal.'
'How many carbs does Grace eat a day?' 
'What's her basal rates during the morning hours?'
'Why did you do a temp basal here?'
'This seems low right here during the day, twice, what can we do about that?'

Question after question after question. My head starts to spin. I look at the sheets, but all I feel and see is information overload. Seriously, it's like the computer in my head is full and cannot take one more bit of information. It's like seeing the blue screen of death or the spinning rainbow umbrella of doom on a Mac. I do not compute.

I start to talk, but I talk in basics. Grace just sits there and chimes in from time to time. Here are her rates, I say. I talk about how I use a lot of Gary Scheiner's work that looks at basal rate patterns to help me adjust and modify the pattern she should be in. It's masterful stuff, much of what Gary Scheiner has published and produced. I know her I:C ratios are good, she comes down within range about 2.5 hours after she eats. I use the 1800 rule to figure out sensitivity factors. They are right too. I do things by the book, and some not by the book. Sometimes I throw the book out the window and do whatever feels right. I continue talking, but I'm not making much sense.

Cause this is what I wanted Grace's endo to know, and this is why I stopped talking, looked straight at her and said:

These are the past two weeks of Grace's life. Do you know she was in her Middle School's musical production of 'Guys and Dolls' these past two weeks? She had school all day, then practice after school from 3-7:30 PM, and on Saturdays from 10 AM - 6 PM. She ate Wawa hoagies most days for dinner, ate pizza twice courtesy of her teachers, and she did it all herself. She was wonderful in the show, and diabetes didn't interfere with one blessed thing. She did it all herself, every single minute these past two weeks.

Her endo just looks at me. And I look at her, with a straight face that says I am done. Literally.

The fact that we are pulling two weeks out of the past three months always leaves me cold. It always leaves me nervous about the two weeks prior to the endo appt. No highs. No lows. Be careful, it's what the endo will see. Well, I have had enough of that crap. It's time we look at the grand picture, at a life with diabetes and not a two week morsel that is but a blip on the screen of life.

I turn to her OmniPod PDM meter and scroll through to get Trends for 30 days, 60 days and 90 days. Grace is in range 55% of the time. I should get a medal and Grace should get a flipping trophy for that. She spends 20% of her time low, and 25% high. Her range continues to be 80-150.

Now, let's talk. Let's look at some numbers here and see. I see her endo's eyes change. She comes down from the ledge of information and into her life.

Well, she's doing great. There's not one thing I would recommend we change right now. The fact that she is participating in what she wants to, on her own, is fabulous, and that she's caring for herself is even better. Keep on doing what you are doing.

I relax. I take it in. Grace should feel great about this. She does, after hearing this from her endo.
I give her a high five as we leave.
Grace comments 'And THAT'S how you do it.'

Monday, March 24, 2014

One giant tab of fate

My oldest daughter and I are at a tournament of hers, out of town. (My oldest doesn't have diabetes, she has autism. I know, how did I win 'all the things' in the 'this family doesn't have enough to deal with' game of life?)

We sit down to eat lunch, and two young girls come along with their mom. 

'Sure, you can sit with us.' 

As mom goes to get lunch she hands her youngest her test kit. This little girl about 7 whips it out and tests. I wait. I mean, really, what. are. the. chances?

She yells '38!!! I'm 38! That's REALLY low!' to no one in particular.

I chuckle, cause that's probably what Grace would have done at her age.

I look for the mom but she's in a long line, waiting to get food. It's across the high school cafeteria. 

I send the older sister to tell her mom. Tell your mom your sister is 38. Tell her that. 

I crack open my glucose tabs from my purse and hand her two. I don't even have my Type 1 daughter with me, far from home, but I carry them still. Now I know why I do.

'I know, honey, it's gonna be OK' I say. 

Mom rushes back to the table.

I say 'I'm sorry, but she was 38 and I gave her some tabs.' 

Mom just looks shocked. 

I say, I have one of those too. With a smile.

And don't tell me there's no such thing as fate.

Saturday, February 8, 2014

Blue Mountain

Invited to go 'tubing' with a group of girlfriends today at Blue Mountain in PA. It involved sitting in just that, a giant rubber tube, and riding it down the snowy hills of the ski slope. Again and again and again.

Grace asked me about going a few days ago. A friend's father was going to drive them there, a father I had yet to meet. I told her I would need to chat with the dad before I let her go. And sure enough, he called me. I spoke with him about 5-10 minutes and it was one of those phone calls where I know it's gonna be OK.

'Whatever she needs.' 'I'll leave the diabetes kit in the first aid office at the end of the slope and tell the EMTs there all about it.' 'If she needs something she can just tell me.' 'I can wear/hold some food for her if she wants.'

Yeah, that. The kind of conversation that leaves you with a smile. And I believe, just for a while, that diabetes is no big deal. Cause maybe it isn't.

She can go do big things, without me talking to whoever the adult is about glucagon and how many carbs she needs, and how to count carbs and how her pump works and what to do if Dex beeps. It will be OK. Diabetes can take a back seat.

I know how I am supposed to respond. I am supposed to be a nervous wreck. I am supposed to not let her go with a single soul who doesn't know what to do in every kind of emergency related to diabetes. I am supposed to educate everyone she comes in contact with about how to care for her, what to do, how to do it and when.

She just wants to go tubing.
And I had a 5 minute conversation that summed up where we are with diabetes.
And it will be OK.

I packed her snow pants with glucose tabs, granola bars and quick sugar, should she be on the mountain and need it. Her diabetes kit, full of everything she would need for care and a pump change, will be with the EMTs. The dad has my cell phone number should anything happen.

Grace is going tubing.
Have fun, sweetie.

Thursday, January 9, 2014

5 years

Today is Grace's 5th year with diabetes. Her 5th 'diaversary' with it. She was diagnosed on January 9, 2009. You can read about her diagnosis story here. You can read about year one, year two, year three and year four too. 5th is the traditional anniversary year of giving wood to someone. Who the heck does that - give something wood-ish to someone? I'm not even gonna think of something to relate wood to in diabetes. You're welcome.

Year 5 takes the turn. It takes it right into 'here we are and we keep on ticking.' It's sort of the eventuality of it. Year 5 is commitment to it. Year 5 is when you decide that the things your sweetheart did that you first found endearing are now as annoying as hell. It's the time that things get real. You are either in or you are out.

Grace is now 11, and she will have had diabetes for half her life when she rolls into 12 in July. There ya go for some straight up nonsense. Imagine that, half her life. Cause when you acquire the D at age 6,  it's gonna be a long time that D stays. (God willing, huh). That's something that still stops me in my tracks. She's not gonna remember the times before diabetes. Crap. It's gonna just fade. And I remember those times, but she won't carry the memory. D sometimes just sucks the life out of the party, don't it?

Today though, on 5 years in, I think about commitment to keep on going. D has revealed itself to be a wily little character, always throwing something our way to keep us on our toes. It has not endeared itself to me yet. I don't get the warm and fuzzies about it. I don't think I ever fell in love with it, but here it is. The commitment is what keeps us going. Not so much the commitment to the lousy and ever-present D, but to the health of my daughter to live a strong and healthy life. Damn straight I will commit to that.

You see, what D doesn't quite get to take is the spirit of an 11 year old girl. She rolls with the punches, she gets back on the horse and she commits, damn it. Commits the hell out of it. Again and again and again, 24/7, 365 commitment. Hell with 5 years, it's more like 1,826 days of commitment. 2,628,000 minutes of commitment. Two million some minutes.

I salute you, Grace. For your commitment, your bravery beyond measure, your attitude that you don't take any crap, and your willingness to do what it takes to live this life, diabetes be damned.

Hell with wood, baby, you are steel.

Happy 5th Diaversary, Grace.

Monday, December 9, 2013


You read that right, What The Heck, BGS. And I mean it.

You would think I would have a handle on blood sugars by now. But that's a farce, isn't it. We really don't have a handle on anything when it comes to diabetes. It's all a giant crapshoot into the darkness. At least it's felt like that the past few days.

I think it's growth hormones, so I increase her basals all the way around. It works for a day or two, then it slams her to the ground with lows, lows, lows. So I change it back and I get highs. And by change I mean I bump it back up a notch, .05 units. Yeah, big time there.

Then Grace has a night of highs. Highs like you cannot get them down and they will stay there forever and ever, amen. Those kind of highs. I loathe those kind of highs cause you know what I want to say. 'OK, BG, I am done playing with you, you want to stay high, stay high. No, in fact, I am going to bolus and temp basal you, the likes of which have not been seen before.'

Then I come to my senses and realize once again, this lovely pump is connected to my live daughter, so I don't. I give .50 units when I want to give 1.50 units. I temp basal increase by +30% for 2 hours, when I want to shoot that high BG with a +95% for 3 hours and see how it likes that.

That's what I mean by WTH BGS.

And Dexcom buzzes and beeps and whirrs and flings itself off table tops and bureaus cause it's moving so much, creating those roller coaster effects on the graph. They are lovely, aren't they. Until you realize that's your child's blood sugar doing that, going up up up and then coming down, down, down.

I'll get a handle on it, I really will. Eventually. I mean, some day I will.
Until then, it's cursing the BGs without cursing the child.

Monday, November 11, 2013

Diabetes takes a back seat

As Grace gets older it's not on my mind as much. I know, can you imagine! The days roll on and we are so busy, well, living, that sometimes we just bolus, dose, extend and then roll. We have much bigger fish to fry most days.

There are always those days, however, when diabetes moves to the forefront. It takes center stage cause it misses the limelight I suppose. It wants all the attention. It must have been an only child growing up, you know that? Those days are fewer and fewer, but when it does get to the stage, the lights are on, the audience of Grace and I are standing at attention, until the light fades and it exits stage left.

There has been so much going on lately. Here's a recap:

JDRF Walk in Philly. 10,000 of your closest friends, walking for a cure.

Like a boss on top of the Art Museum steps. Yeah, she's Rocky.

Our favorite CDE, Gary Scheiner. Walking like a pro.

Halloween - she went as 'social media' with her girlfriend. And of course, Halloween activities!

Social Media!
Apple chunking' at our local orchard. We can sling them FAR!

And most of all, World Diabetes Day, coming on November 14th. It warms my heart when her whole team in 6th grade is gonna wear blue.

Monday, October 14, 2013

A1Cs tell a story

The A1Cs are just a piece of the puzzle, just one small piece. And sometimes, well, many times, we as parents put too much into one small piece. We fret over them, sigh when they are not what we want, cheer when we get what we want after so much hard work and learning, learning, learning.

The A1C does reveal things though - things you do to get a lower BG average over time, a trick you now know that you didn't know before, the jump from shots to a pump, the addition of a CGM - the A1Cs tell the story.

This is the story of a smaller pod, no Pod change highs and wearing every Pod for a full three days, and sometimes riding the last of the basal out on an 'expired' Pod.

Just had our endo appt since the three months Grace has been on the smaller Pod.
And that's our story.

10-14-13 6.2
5-30-13 6.7
2-26-13 6.5
11-29-12 6.4
8-21-12 6.4
5-29-12 6.6
2-28-12 6.6
11-1-11 7.1
7-28-11 7.1
3-10-11 6.4
12-14-10 6.6
9-7-10 6.6
6-24-10 6.8
3-16-10 7.3
12-15-09 7.7
11-23-09 7.9
8-27-09 7.6
5-7-09 7.3