Sunday, February 20, 2011

A D-Meetup - 8 year old style!

A friend is one of the nicest things you can have, and one of the best things you can be.  ~Douglas Pagels
Friendship is born at that moment when one person says to another, "What, you too? I thought I was the only one!" -C.S. Lewis

Grace first met L at Camp Victory, her diabetes camp where she went for a week in August. L lives in the same state, but about 3 hours away from us. They each didn't know a soul at camp.  They became quick friends, slept side by side in bunks for 6 days straight, and survived their first overnight, away-from-home, diabetes camp experience together.

It bonds two girls, I tell ya.

They have been penpals since camp in August. They have sent each other Christmas presents and talked on the phone. And they have been missing each other since the day they said goodbye to each other in August.

L's mom called me about a week ago and said she'd like to bring L down, stay in a hotel just outside Philly, and let the girls hang out for a day or two. Grace was beyond excited. HER L coming to visit??!!!

Well, it happened. We just said goodbye to them at the hotel and they are headed home. Can I tell you what this visit with L meant for Grace? What it did for each of them? What it did for us as Mamas to two 8 year old girls with diabetes?

It made lifelong friends out of all of us.

They screamed when they saw each other again. Grace brought her camp photos and they pointed to each one - 'Remember this? remember that? who was this again? oh that was fun!'
They fell right back into place.
'You look the same! You got your hair cut! I like your earrings'

I bought the girls shirts that said 'Camp Friends Are the Best Friends.'
What are the chances, right?!
They wore them straight for two days.
They went to the local mall and each made a Build A Bear.
The same one of course, the peace and friendship bear.
Grace named hers L.
L named hers G.
Each bear has 2 hearts inside it, one from the 'mama' of the bear
and the other that was wished upon by her friend, then placed in the bear.
I honestly had a tear in my eye when they placed one heart in each other's bear.

They swam at the hotel pool.
They cannon-balled and played mermaid and were the life of the party.

We wrapped them like mummies and they laughed.

They jumped in together as girlfriends do.
Hand in hand.

They wrapped each other's hair in turbans.

They tested together in the mall.
One was high, one was low.

They rode the escalators, hand in hand.
You should know that L LOVES escalators.
Enough said.
We rode each one we saw.

They colored and doodled and chatted, long into the night.

Grace stayed overnight with L in the hotel, along with her mom.
Her mom, J, checked Grace at 2 am in the morning.
Grace was 27.
Yes, 27, the lowest number we have ever seen on her meter.
I want to publicly thank J for saving my little girl and stuffing her with juice and cookies.
She returned to 90 just 20 minutes later.
My friend J saved the day.
I owe you one J.

This was more than just a friend coming to visit Grace. This meant that two girls were coming to relive their whole rock-steady friendship, forged by a kinship in diabetes. This meant that they came to chat about diabetes and so not chat about diabetes. This meant that they each had a friend who had lived through the camp experience. They now know what it is to have been missed dearly by a friend. This meant so much more than I can ever express. Grace and L feel cared for by a friend. Is there no greater gift that I wish for my child?

As for J and I, I cannot tell you what good it does for my psyche to talk with other D-Mamas, ones who fight for their child, who understand and push on through, who soldier on despite missteps and challenges, and who see the good and the blessings within all of this. That was J. A great listener, a good laugh, chatting about the D and our lives. It does a soul good.

It was beyond the beyond.

Monday, February 14, 2011

Valentine Friend Love

Grace celebrated Valentine's Day with her 3rd grade class, with, of course, a classroom party. They made ice cream sundaes. I took a stab at 30 grams of carbs and actually did pretty well. She came home with a giant bag, filled with cards and carbs :0)

The best part, that part that made my heart melt, is when she showed me this:

Russell Stover Sugar-Free Marshmallow Heart
and a little bag with a 'Grace' sticker on it

One of her friends in class gave everyone in the class a Russell Stover Marshmallow Heart. But when she came to Grace, she handed Grace this heart bag, with a sticker with her name on it. Inside was a Russell Stover Sugar-Free Marshmallow Heart.

Grace smiled.
"C was thinking of me. She got this heart just for me. I mean, I can have the regular hearts Mom, right? But I mean, I think I like it better cause she was thinking of me and my diabetes when she bought it and wrapped it for me. That's why I like it better."

Yes Grace, you can have the regular marshmallow hearts, but somehow, this sugar-free one shows that your friends do care about you, think about you and love you Grace. It brought me to tears that you have good friends like this, even in 3rd grade.

What a lovely Valentine gift.

Wednesday, February 9, 2011

Philly PWD Focus group

I was invited to a Philadelphia focus group about diabetes. I can't say more than that, cause it was super-duper-top-secret-if-I-tell-you-then-I-have-to-kill-you kind of stuff. Only without the whole killing part, cause I doubt they would make me do that. Anyhow, it was top-secret and I signed a non-disclosure part about it, so don't even ask, ok?

The whole point was that I got to spend 4+ hours with PWDs - 7 of them, with a combined 180+ years of diabetes care under their belt. I was, by far, the newbie of the group. By light years. I was also the lone parent of a child with diabetes representative in the group and DMamas and DDads, I tried to make you proud. I thought of all of you as I spoke throughout the night, commenting "I really think parents of kids with Type 1 would..." and speaking as one parent, among many.

When I got to the group downtown, it was a blustery, cold, night. I was freezing. Walking just three blocks from the parking garage downtown to the office building left me numb. I rounded the corner to the waiting area and lo and behold, there sits...

Scott Johnson!!!!!

Yes, the Scott Johnson, of Scott's Diabetes, a blog I regularly read. I kept thinking - I know he lives REALLY FAR from Philly - what is he doing here in my city??? I couldn't get over it!!! I have seen countless pictures of him with Kerri, with Kelly, at CWD, at Roche summits, all over the D-asphere, and here he sits, in MY city, in the waiting room. His blog is honest, forthright, makes me laugh and makes me think - just the things I want in this blogworld. He is as nice as he seems to be through his posts.  I introduced myself and he smiled and that's all it took. Off we went to the races - talking and chatting. We ended up sitting next to one another at the roundtable throughout the night. We laughed, we thought, we spoke from our heart, we listened.

He just blogged about our night in the focus group. Go and read it here. You might even spot a picture of us together there!

One of the sweetest gals all night was a woman named Betty. 52 years living with Type 1. Just think of that, 52 years. She was enlightening, funny, endearing and most of all, elicited a round of applause upon us all learning that she has spent 52 years doing this, longer than some of us have been here on this planet. You name it, she has seen it. And she boasts, rightly so, an A1C of 6.1. That elicited another round of applause. Betty, you inspire me, you are courageous, a light in the sometimes dark world of the D and you might not realize it, but you give me tremendous hope. That some day, pending a cure that may or may not happen, my gal Grace will sit at a table and say that she has had Type 1 diabetes for 52 years and is here to tell the tale. Blessings sweet Betty.

A wonderful night. Unforgettable in so many ways. Laughter, honesty, camaraderie and kinship all rolled into one.

I was warm all the way home.

Sunday, February 6, 2011

Where I win mother of the year & Wii saves my a$$

It was 1:00 pm and Grace's Pod expired at 2:05 pm. I knew that. We had checked. An odd time for her to have a pod change, as we save pod changes for nights, not to interfere with school days and such. Maybe that's what threw me.

We returned from errands and she called her neighbor girlfriend to play. "Sure, come on up" is what they said. A quick blood sugar check, a quick alignment from a slight high and off she trotted, two doors away. She doesn't take her PDM, but slips a juice into the front pocket of her hoodie.

"Back at 3:00 Mom!"
You would have thought that would have jarred something in my little brain.
It didn't.

I caught up on housework, cleaned up, you know, caught up on life.
Finally it was 3:05 pm.
I sat down on the couch and started to read the newspaper...
You see where this is headed, don't you?

My diabetes-man (make that the diabetes-woman) in my head alerted me.
It's 3-flippin-05-pm!!!
I shot like a cannon off the couch and dialed up the neighbor.
She answered their phone. Ahhhhhhh, gotta love caller ID.
"Hey mom, I was just gonna have my juice, I was feeling a little low."


"What? I didn't even hear it. We've been dancing to Wii 'Just Dance' all this time. Ok, I'll have my juice and walk home."
Calm gal. And I am freaking OUT.

She walks home. Walks. Not even a one-minute hurried walk.
I am shaking.

"Hey, I didn't even hear it. Honest mom."
The pod is bleeping at her every 10 minutes. She has no insulin going into her system, for about an hour now.
I fully expect a 350, a 400, or the lovely HIGH.

Grace smiles. "I was dancing mom, all this time I was dancing."

We change the pod.
I am such a darn f-up.  
And Wii saved my proverbial a$$.

Thursday, February 3, 2011

A life of action

A life of reaction is a life of slavery, intellectually and spiritually. One must fight for a life of action, not reaction.
- Rita Mae Brown

Tired of the in-fighting of all the relatives out there? It's like one of those family reunions you HAVE to go to, but you end up wishing you could split as soon as they served dinner. You want out, so you can go and do fun things with people you love. 

That's how I feel about the JDRF interview (I actually liked it a lot) and the DOC, well mainly the CWD forum-on-fire thread that left us all feeling, well, is splintered a good word? I felt shellshocked and ashamed of it and separated from the DOC whom I love so much.

If I could, I would stand on a busy corner, hat in hand, and beg people to throw me all their wasted hours.  ~Bernard Berenson

I don't have time to waste, and neither my friend do you. Every hour is a gift, every day is a present (get it, that's why they call it the present, cause it's a present - hee hee hee) What a waste to spend our time fighting, when that energy can be put out into the universe in much more constructive ways. Cure - yes. Technology - yes. PWDs in the JDRF - yes, yes and yes. Let's have it all folks.

If you ask me what I came into this life to do, I will tell you: I came to live out loud.
Emile Zola 

I came to see my child with diabetes thrive. I came to make connections. I came to feel not so alone. I came to find others who can row the boat for me when I am so very tired. I came to help others row when they got tired. I came to find out how to live with diabetes in the family and not have it be the center of the universe. I came to live this one wild and precious life.

The only way to make sense out of change is to plunge into it, move with it, and join the dance.
Alan Watts 

Change is hard for us all, but it's OK. Jump in the pool. Join the revolution. Make the best of out of the situation cause we only get one go around on this big blue marble. Join the dance baby. Change is a comin' and let's get onboard.

Wednesday, February 2, 2011

Insulin sensitivity

Oh insulin sensitivity you confound me. Seriously. Grace's have been puzzling me lately. Basal rates are good, they hold steady when she doesn't eat and they held her steady when she caught the stomach bug. Her I:C ratios work, they bring her within range after eating a specific carb count meal. It is her insulin sensitivity ratio that puzzles me, it just doesn't compute.

So, insulin sensitivity, otherwise known as the correction factor. In plain and simple terms, it's how much one unit of insulin brings blood sugar down. So it's a ratio. 1:100, 1:60, 1:300 - whatever works for your child and brings their high blood sugar down. It's also based on a calculation from one's TDD (Total Daily Dose) of insulin. So it has a basis, proven by the reduction of a blood sugar from a high. When she was first diagnosed, Grace's correction factor was 1:180, then 1:150 for a very long time. It's still in my head, 1:150, it was that number for so very long.

For the last year almost, they have been 1:80 during the day from 8am - 8 pm, then 1:90 from 8 pm to 8 am. One unit affected her less at night than during the day. She needed less insulin at night to bring her down than during the day. Within the last 3-4 months, things have changed and I have worked my tail off to figure them out correctly.

Grace would sometimes run a high at her bedtime check at 8pm, often from a carb guess from homemade dinner. There would be no insulin in board from eating, and none from a correction. I would bolus to correct the high, but 2 hours later, find that I had overcorrected, thus bringing about a low that needed to be corrected the other way. So she would be at a perfect night-time BGL, but there would be IOB that I know would cause her to crash. There is nothing I dislike more than ping-ponging between highs and lows. So I do my best to avoid it at all costs. And I must say, it's something Grace rarely does lately - EXCEPT for this darn correction factor! The correction factor of 1:90 was giving her too much insulin. I could feel it. So I raised it to 1:100 at night.

Only that was also giving her too much! So I then changed to 1:110 just three weeks ago.
Still too much. Still leaving IOB that causes crashes.

Then two week go, I changed it again to 1:130.
Another high at night after dinner, a correction and dang it all, another come within range within one hour, then a .30 IOB with a BGL of 130, which will result in a low at night, when she's sleeping.

So, I've done two things, lowered her I:C ratio at dinner so she gets more bolus for her dinner, thus not giving us this problem in the first place. And I've upp'ed her correction factor again!

She is currently at 1:160 at night......... Ok, four weeks ago she was 1:90.
Growth hormones? Increased activity levels?

We haven't had a high at night since last Thursday to correct, so I wait.

So you would think I have it figured out now huh?! I don't!
You wanna know why???
It's John Walsh's fault!
THIS sits in the back of mind. THIS haunts me day and night, taunting me, saying, something is wrong, other than her correction factor.
Her TDD averages 28 - 30 units per day. We use a 60/40 split on bolus/basal.
Her correction factor should be nearer 1:69 or 1:60!!!!!

So I did a little test... I programmed that correction factor ratio into her PDM of her OmniPod.
What would a correction factor of 1:60 give her in units of insulin as compared to 1:160?

Grace's range is 80-150 with a target of 120.

And here's what it said to me:
High of 250 BGL at correction factor of 1:160 = .80 units  
High of 250 BGL at correction factor of 1:60 = 2.25 units

What a difference in dosing!

So, for now, we are 1:100 during the day and 1:160 at night.

Why is Grace defying some standard conventions of diabetes management?
Oh yeah, that's right, she has Type 1.