Wednesday, October 27, 2010

Naked Pancreas

Reyna over at Beta Buddies had a great post that revealed - oh my! - her son Joe's rates and settings and such. Such daring Reyna!!! I LOVE IT, so how could I not join in? I have enjoyed reading all of your posts out there about your kiddos settings and the like. So, without further ado, here is Grace's Naked Pancreas...

***Disclaimer: I'm not a doctor. I don't play one on TV. I don't even play one at home. I'm a mom trying to be a pancreas. Your child is different than mine. This is not medical advice folks. 

1. What kind of insulin management mode do you use?
Grace uses the OmniPod insulin pump. 24/7/365.

2. How often do you inject/change pump sites?
Every 3 days, like clockwork. With Unisolve.

3. What type of insulin do you use?

4. What are your basal settings?
Ok folks, I like basal rates and I use a lot of them. I tweak. And then I tweak some more. Then I get a good run of great, fabulous basal rates and I hold steady for a good long time. Then comes time for tweaking some more. I have both weekday and weekend rates and I switch them on Friday and Sunday nights. Then she can sleep in for an hour or so more on Saturdays and Sundays. Yes, I am that tight on her basal rates. 

I should let you all know, Grace uses A LOT of insulin. So, don't be freaked by her basal rates. The girl uses a lot, as in an average of 26 to 28 units a day. I guess this means she has the 'betes real bad, huh? I thought you would get a kick out of that statement :0)

Weekday basal rates:
12a - 1a    .50
1a - 3a     .55
3a - 7a     .45
7a - 2p     .50
2p-9p      .45
9p - 12a   .50

Weekend basal rates:
12a - 1a    .50
1a - 3a     .55
3a - 8a     .40
8a - 2p    .50
2p - 9p    .45
9p - 12a  .50

5. What are your correction factors?

12a - 8a   1:90
8a - 8p    1:70
8p - 12a   1:90

6. What are your meal ratios?

These I correct after I get a wonderful basal rate that's proven through basal testing. So, my rule is that the basal rate should pass the 'Yom Kippur' test - in other words, can you not eat and maintain a stable blood sugar? If Grace's basal rates pass that test, then I tweak the carb ratios when I get crazy numbers and I already know her basal rates are good.

12a - 6:30a   1:25
6:30a - 11a  1:14
11a - 12a     1:21

7. What do you do for activity or PE?
Swimming I do a -30% temp basal rate for the duration of swimming, then also cut -30% for 4-6 hours after swimming, as she tends to tank after she is done.
PE class - I cut her basal by -40 % for one hour

8. How do you manage pizza, macaroni and cheese, or any other 'difficult to manage' foods?
OK gals, I learned from trial and error and also from the uber-fabulous Gary Scheiner, who is our CDE. The man ROCKS on things like this - he knows when to temp basal and when to extend a bolus. He knows for how long. He knows why. He tells me why and how and how to fix it. And frankly, when I follow what he does with Grace, she has stellar numbers. The man is good. And here is what I do...

Pizza - Bolus about 35 a slice (depends on size) and then +50% temp basal for 3-4 hours
McD's (Yes, we go. She gets a Happy Meal cheeseburger and fries and milk. Yes, I know. Get over it.)
Bolus 70 for the meal and then +50% temp basal for 4 hours
Popcorn - Bolus for 15g of carbs for 3 cups, then +40% for 3 hours
Mac and cheese - Alas, the girl does not eat it 
Pasta - Bolus for amount of carbs, them I give 30% of that bolus now and extend 70% over 2 hours
Over 70g of carbs at once - I give 50% bolus amount now, then I extend 50% over 4 hours
Slow digestable foods  (low GI foods like berries, peanuts, beans) - 30% now and then 70% extend 2-3 hours

Ok, does that exhaust you or what? And yes, I have a cheat 'index card' in her OmniPod case that details all this so I can easily look it up. There are more foods that I do a temp basal or extended bolus amount for, but I thought that was enough to put in the blog post. Can you tell I like temp basal and extended boluses? They allow her to eat anything and I truly mean it, everything. 

9. How do you prefer to manage your logs/data?
Oh I wish Insulet would get their act together and make their PDM software compatible with Mac!!! We are a Mac family, we own no PC. The PDM is downloadable to a PC. It produces wonderful data spreadsheets. Gary does the downloading for me and prints them for me. I see him every 3 months. So, instead of downloading, I use log books. Little ole spiral notebooks that fit into my purse and I dutifully record everything we do regarding the D. Then I circle the highs and the lows that fall out of range. And I go back at the end of each week and re-examine what is happening. 

I then write down plain English sentences to myself in another 3 ring notebook that keeps all of her current rates in it. I write 'high at 10:30 am in school 3 times this week' or 'low before bedtime once this week' and I go back and try to find the answers. Then I might make changes. Or do a basal test. Or tweak a carb ratio.  Is it time-consuming? Yeah, I guess it is. Does it show that I am a data-hound? Sure does. I like data, I like what it tells me, I like that it tells me where to go and what to do. So, time-consuming, but worth every minute in the end.

And that's Grace's Naked Pancreas!

Sunday, October 24, 2010

Gracie's Gang - JDRF Walk

We walked on Sunday. For Grace, for little kids we don't know, for adults with Type 1 - we walked. And it was glorious! Kelly from the uber-fabulous Diabetesaliciousness joined us for the walk -  and I cannot think of a better traveling companion. She walked for Eilish, she walked for her sister Debbie who she lost to Type 1, she walked for herself, she walked. I am so very proud of her.

Ready for the walk to begin!

Lookie who we found! The one and only Kelly!

8,000 walkers this year!

Ok, sponsors - we LOVED the giant cow you brought!!! 
Oh and we wished the gallon of ice cream was actually that size!!!

Where we stepped off from - The Philadelphia Museum of Art!
And yes, of course my kids did the Rocky run up the stairs!!!

People have great sayings on their t-shirts!!!

It was a gorgeous day for a walk. This is Boathouse Row across the river.
We saw men and woman rowing during our walk.

I love my city.

And I love these two too.

Walking for all of us.
All of you in the DOC, all of you who are my blog-friends, we walked for you too.

And of course Nick was there!!! We all wondered where his OmniPod was placed!

And why does the flippin' meter always read a perfect 93?
I wanted to scratch it out and put a 2 in front of it
293. There. That's reality some days, Nick.

A great day.

Thursday, October 21, 2010

Keep Me In Your Heart for Awhile

I've read about the passing of Eilish and the many, many eloquent blog posts about our children. About our collective sadness and shock. I think it jars us in such a way that our world just tilts slightly. I am so filled with grief and anger and 'knowing' that it's even hard to write about it. I know my thoughts are with her family. I know she is at peace. I know that everyone wishes she were still here, with us, on Earth.

 I thought of one specific song these past few days, by one of my favorite musicians in this world, Warren Zevon. He passed away in 2003 and before he died of mesothelioma (a form of cancer associated with exposure to asbestos) he produced an extraordinary album, The Wind. He refused treatments that he thought might incapacitate him. If you never saw his performance on the David Letterman Show in 2002, in which he was the only guest for an hour, you missed something incredibly moving and intense.

I thought I would share this with you. The pictures are of Warren, recording his album and this song. The words remind me of the heartbreak we are all experiencing now.

Wednesday, October 20, 2010


Praise the bridge that carried you over. 
~George Colman

Gratitude. How do I begin to say thank you for the support I have felt since Grace Let It All Go? There are comments that left me speechless. There is Kelly's post about Grace, telling her she is not alone and she understands. There are all of you out there, supporting and caring and telling me so.

I thought when I started blogging that it would be a way to help me understand my daughter, and in the process, begin to share this journey. What I didn't know is how much it would cause me to change as a person. How much healing it has led me to. How much growth there is to be had along the way.

Thank you for helping me grow.
Thank you for caring about a little girl.
Thank you for always understanding.
Thank you for always standing by and letting it be exactly what it is.
Thank you.

Monday, October 18, 2010

Letting It All Go

Honesty is the first chapter of the book of wisdom. 
~Thomas Jefferson

8:30 pm Last night

I was about to tuck Grace into bed. The following is our conversation, in summary. I think it was about time. And she let her rip.

Goodnight honey, have a good sleep.... What's wrong? You look like you are gonna cry...

(The tears begin....) It's just that... it's that... I hate diabetes. I hate having to checking my blood sugar and I hate that I can't eat candy like other kids when I want all the time and I hate that I am different. You know why I loved camp Mom? You know it's because I wasn't the one who was different and I was there with all the kids and I wasn't different... I hate that I go to my friend's house and I can't eat what I want and I have to call you and get checked. And I don't like that it hurts sometimes and I just don't like it.

I am so sorry honey. I want to tell you I understand, but I'm not the one who has diabetes. So I can tell you that I am sorry you have diabetes and I will always help you. How can I help you? I am so sorry that you have this Type 1 diabetes. Mommy and Daddy really are sorry about it.

And you know what? When I am at the nurse's office, some kids peek at me checking my blood sugar and they gotta LOOK LOOK LOOK at what I am doing and they peek around the corner and I have NO privacy in there. It really bugs me. I mean they are looking at me do it and I don't like it. And I have to go to the nurse's office, that's another thing. I have to go and sometimes I am out of class and I don't like it. I don't like it that I have to go.

Maybe we can talk with Mrs. B and make a solution. Can you check around the corner of the desk or on the other side? Can you turn your back on the kids who are looking? What about the other table? I know you don't want people to look. I think they are looking cause they are curious, not cause they want to bother you. You can always ask them not to look and you can tell Mrs. B. to tell them not to look. I'm sorry you feel you don't have privacy sweetie.

But this stinks Mom. I mean I don't like it. I really don't like it.

Can I tell you something? Something I don't think I have told you lately? That I love you and your diabetes?

You LOVE diabetes? I don't think you can LOVE diabetes Mom!!!!! You love me cause you HAVE TO, you are my Mom!!!!

Well I do sweetie. Diabetes is a part of you, like your blue eyes and your brown hair and your funny personality and the way you dance around the house. It joined you late, at age 6, but it's just one part of you now. I love it cause it's part of you. It doesn't mean that I don't like how it makes you feel and what it does to your body and all the stuff we have to do because of it. But I love it cause I accept it as part of my love for you. You know your sister and her autism? I love the autism, cause it's part of her. It just is. I love her jokes, the way she loves things so intensely, the way she shares her joy, her love of all things Veggie Tales and her smile. And her autism. And your other sister, I love how she always gets the joke, her glasses and her hair and her braces and her love of all things beauty-related. You are all so different, but you all have pieces that I love. You happen to have diabetes. I love it cause it's part of you. That's just how I feel about it. You don't have to love it, it's ok. I just want you to know that I love all of you and it will be OK.

I'm not sure I love it Mom. OK, so I don't actually hate it. I mean I don't like it - the checking and the calling you and the carb counting, those things...I mean, B has a feeding tube in my classroom and he's different and he goes to the nurse all the time and my friend C has asthma and she can't go on the hayride at the orchard and they can't have a cat. I got a lot of different friends Mom. I just am sad. I'm sad about having diabetes tonight. I don't want to have it. 

You want to call someone? You want to talk to L from camp? I have her phone number? Then you and her could chat about camp and what fun you had and then you could talk about how the D is bringing you down lately. You could call Kelly - she could talk with you. I mean, I know she's a grown up and all, but she has had D since she's been little like you. She would talk with you. I could call her and you could chat...

I could write to Kelly and tell her. I'm not sure I wanna talk with her, I think I am gonna cry and I don't want to talk with her and cry. I think I am tired Mom. I am really tired.

You want me to read some of your story to you?

Yeah, that would be good. I'll go to sleep and you read. Then I can fall asleep. And Mom, you know what? Thanks for taking care of my diabetes. I mean, I know I don't like it, but I 'm glad that you love it cause you love me.

Thursday, October 14, 2010

AWOL from the D

Hey gang out there! Where have I been? Blogged down with a million things to do, ending with a huge conference my autism support group is putting on this October 21st. I am the Treasurer and I'm doing all Treasurer-y kinds of things. Up to my eyeballs in it. Mired they would say.

And working.
Oh and the three kids.
Oh and the D.

I never thought that the D would take a backseat, but it has these past few weeks as Mommy is mired knee-deep in conference. And you know what? It has all been OK. In fact, it's been refreshing to NOT be weighed down with this number and that number and OH-MY-what-should-I-DO number. The numbers have rolled like water off of a duck's back.

And it's been good.
Hell, it's been great.

I bolus for the 250 and it comes down. I don't have time to sit and wait and watch like a hawk and worry. But you know what - it comes down and I never even watched it once!!!!

I carb-guess and frankly, I didn't do half bad in the crap shoot that it sometimes is. I didn't guilt myself into thinking I did a bad job, when I did a mighty fine job.

I pack her up and off we go - to this meeting, this event, this get together with the committee so I can work. And she does just fine. She manages. I manage. We snack and we graze-bolus and not once do I worry that she is eating or not eating. Flippin' refreshing.

Sometimes it's good to be mired in something else and realize the one thing that I have tried to tell myself since this journey began.

That it's going to be OK.

Monday, October 11, 2010

Sugar Bolus Baby!

So many giveaways on these blogs nowadays! Here is a great one from Jen over at I Am Your Pancreas.

You can win a Spibelt and a package of local Seattle made coffee goodies.

So what are you waiting for?

Head on over and enter!

Thursday, October 7, 2010

No D Day! It's all about quilts baby!

George over at Ninjabetic had a great idea - a No D Day! where we all blog and Facebook and Tweet about our other lives, where no D is mentioned or even hinted about. I hope you all participate today as I want to know more about each of you. So, here goes, a whole blog post with nary a D in sight. Enjoy.

It's all about the quilts baby!

I am a quilter. I love quilts of all kinds. I love to sew and I love to create. I don't have nearly enough time to quilt these days and I truly miss it.

You have a new baby? I am right there with a new quilt for the cutie.
You getting married? Voila! A quilt for your bed.
You need to feel loved? A quilt is on its way.

I love the whole process - choosing the fabrics, planning the pattern, sewing the pieces together into blocks, sitting at my machine in the dining room, hand quilting it night after blessed night. It's very cathartic for me.

Here is some of my work over the years:

A quilt for my 2nd born child...

A wall hanging quilt I created that hangs in our upstairs landing.
Three angel-girls on the beach, sporting their wings. 
It reminds me of my three girls at the beach. Oh and it makes me laugh every time I see it.

Can you tell our favorite place to hang is at the beach? The saying reads: 'I'm at my best on the beach in the sun' and it contains photos of my first two girls hanging out and playing there. 
I created it before the 3rd one came along and threw me for a loop :0)

Grace's baby quilt. She still sleeps under it.

My most ambitious quilt yet. It entitled '100 Houses' and that's exactly what it is - 100 houses, composed of varying fabrics. It took me over a year from start to finish to complete it. 
It hangs over our bed in our bedroom.

Here is a detailed view of four of the houses. Can you tell I love color in my quilts?

There you go readers, a glimpse into my non-D life. 

Tuesday, October 5, 2010

Where the heck have I been???


That's what has kept me so busy. I am trying desperately to keep up with everyone's postings and wow, you mamas are some busy writers these days! Great posts everyone is 'pumping out' (get it?)

Here is the latest and greatest:

D Meet-up

Kerri of sixuntilme was in town for an ePharma summit conference, along with Manny of TuDiabetes. She put together a get-together at a watering hole downtown. Of course I went! And she asked if I brought Grace along. Well, no, I don't bring her to bars, but she would have come if I had let her! Bennet from YDMV was there, as well as Lee Ann from The Butter Compartment, along with other T1s that I met. It was a great night of schmoozing and laughing and you know what I really wished the whole night?

That my Grace have something like this when she is a young woman with T1. God willing, she will.

(That's me in the way back on the left side)

Craptacular Day

It sure as heck was on Sunday. Let the numbers speak for themselves:

2 am - 386 (where did that come from???)
5:30 am - 120 (whew, much better!)
8 am - 52 (whoa, this sucks)
10 am - 432 - recheck 393 (big big rebound, crap)
11 am - 137
11:45 am - LO (are you friggin' kidding me???? really? G shows no symptoms - AT ALL)
12:30 pm - 174
1:30 pm - 287 (here we go again!)
3 pm - 263 (oh no, it's hanging around, that's not good)
4:30 pm - 184 (ahhh, good BG, ok, I can live with that)
6 pm - 179
8 pm - 325 (crap on a stick now!)
9 pm - 170

See, totally craptacular in every way.
And the next day, Monday, was a perfect BG day all around, right back on track. Didn't change a thing.
I think the Diabetes Gods and Goddessess are messing with her. Seriously.

Crap-Apple-tacular Day #2

The new Apple store opened downtown. It rocks. I took the girls on Sunday downtown to well, look around and play with all their gadgets and feel like we were in heaven. Yes, we covetted a lot of their items. 

Well, Grace took her iPod Touch into the store. And well, Grace is 8. She laid it down to play on an iPad and a computer and you know what happened. Yep. Someone took it. Took an 8 year old Type 1 diabetic's iPod Touch (there, that oughta get a lot of sympathy votes from someone out there!). I had to say it, cause I wanted to shout it in the store. 


But, alas, I did not yell it. We searched the store, we looked up and down the street, we asked the Apple workers, the Apple manager - nothing. Now, you should know, we live in an urban city. It was GONE. I mean, like it was probably reset and sold within minutes of walking out the store. It was a HOT item and I don't mean temperature.

I was so very sad for Grace, to learn about something like this. To experience it firsthand. We talked about people in the city and how not everyone is honest and she wondered why anyone would want HER iPod Touch with all her camp pictures on it and her girlfriends pictures and her cupcake maker application and SkeeBall - Mom , they have the SkeeBall game!' - Yes honey I know.

Hard lesson. Crap-Apple-tacular Day #2.

See, I told you, Life.