A Sweet Grace

Superstitions and the 2 AM check

2012-01-26T12:40:00.000-05:00

Grace has an overnight BG check, courtesy of me. It's always at 2 AM.

She checks when she goes to bed at 8 PM (or at least when she heads upstairs), then I check again at 10 PM, then I basically let her ride (pending of course, HI or LO blood sugars) until 2 AM. Then I check her when I wake up at 5:30 AM, and when she wakes at 7 AM.

Lately, my internal clock has been waking, every single night, at 1:38 AM. And, can I tell you something, I don't get up and check her. I know, I am AWAKE at 1:38 AM and I don't get up to check her. I lay there and wait until 2 AM. That's some sick stuff there, a therapist's dream!

Why don't I?

Cause there are certain things I will not do when it comes to diabetes care. And they have nothing to do with standards of care, or what my CDE or Endo says. They are totally discriminatory and random. They are called superstitions and I do not mess with them. Ever.

Here are my D superstitions:

1. I check her at precisely 2 AM when all is going well. Not at 1:38 AM, not at 1:54 AM, not at 2:07 AM. Yep, right at 2 AM. Gary Scheiner, our CDE, gets a kick out of this apparently, because when he downloads our data from her OmniPod PDM, he says 'You really stick with that 2 AM, don't you?!' with a smirk on his face. Because literally, the blood sugar data is all one big glob of dots, precisely all at 2 AM. And think, I'm not even OCD!

2. I only change her lancet once a day, in the morning. (Comments suggesting I am a bad mother for only changing once a day will be deleted. I don't wanna hear it.) But, if she has a string of really in-range blood sugars, I won't change it. I think I am jinxing the D-goddesses. If she has a really bad string of out-of-range blood sugars, I change it more often. I am completely convinced that it's the lancet's fault.

3. I won't write in her log book when her next Pod change is. Nope. That jinxes it so that her Pod will alarm. I KNOW this, as it's happened and happened and happened. I learned my lesson. No predicting when I will change the Pod. Got it world, got the message. Change the Pod when the PDM alerts me to, whenever that may be.

4. I close my eyes when I check ketones. Because we all know that's the way you get the ketone meter to read 0.0. Don't you do this? What, you don't? I suggest you try it, cause when I close my eyes and wish really hard, most of the time we get 0.0. I do remember once at Grace's school when I kept my eyes wide open and even counted down with the ketone meter, and we got 0.3. See, I should have closed my eyes.

I know you have them, D Mamas, D Papas and my fellow readers with D.

What are YOUR superstitions when it comes to D care???

Basal Dance - From Complex to Simple

2012-01-13T12:32:00.002-05:00

I am a basal hound. I fix. I ponder. I test. I set up basal patterns and name them 'Test One' in her PDM. And I sometimes let them ride. But mostly, my life as a Mama to a kiddo with diabetes is focused on the basals. Cause you know that phrase 'If Mama ain't happy, ain't nobody happy?!' then, for me, it's true that 'If the basals ain't happy, ain't nobody happy.' Basal settings account for the foundation of the building. It's on the basals that every other setting rests.

I don't change carb ratios until I know the basals are set correctly. I don't mess with correction factors until they are set correctly. I always come back to basals.

And some times, they surprise me, how much they change as Grace is growing. When she hits these pre-puberty growth spurts, watch out! She needs boatloads of insulin overnight. And less in the wee morning hours. It's quite a thing to witness, these 2-3-4 weeks of growth. They group themselves into periods of time, then they fade. And I wait for them to come back.

I find myself wondering how high of an hourly unit she will need each time. Our last go-round resulted in an overnight basal rate of 1.25 units. Yeah, uh, she's 9 and weighs 77 pounds.

Two days ago I basal tested, because she was dropping low at night. And I found we have stepped out of this high growth period, to a lighter state of basals.

Here is a peek into Grace's basal setting during her last period of growth. Those hormones love insulin.

12a - 2a 1.25 u/hr
2a - 4a .80 u/hr
4a - 7a .40 u/hr
7a - 2p .45 u/hr
2p - 9p .55 u/hr
9p - 11p .90 u/hr
11p - 12a 1.00 u/hr

And here we are now. Just set two days ago. Notice the change. And the simplicity of it all.
The simplicity is what strikes me. I never have just four settings of basal rates.
I always seem to have 6 or 7.
But, it is what it is.
Girl went to bed at 145, 2am check was 130 and woke up at 7am at 120. Boo - ya.

12a - 3a .50
3a - 8a .35
8a - 10p .40
10p - 12a .50

All I do know, about my daughter, is that when the BGs start to turn high, I go back to basals. And growth hormones. And LOTS of insulin.

I may be getting the hang of this!
(And now I have totally jinxed myself, you do know that don't you?)

Year Three

2012-01-09T05:55:00.000-05:00

Happy Diaversary Grace!

Its been three years since Grace was diagnosed.

You can read about her diagnosis here. And year ones's Diaversary here. And year two's Diaversary is here.

And here we are, three years into this game. And we are in a different place. Each year brings about something new. Year one was the shock and awe phase, and the introduction to the DOC. Year two was the year of the pump, the year of acceptance and learning that diabetes comes along for the ride, everywhere.

Year three, I would categorize it as a year of stretching for us both. For Grace, it was about celebrating, yes, celebrating her diabetes-ness through diabetes camp, d-friends and d-meetups. It was a year of moving forward for her, embracing new challenges in school and growing up. And a year of literally g-r-o-w-i-n-g as she grew 3 inches this year. And learning to take on more responsibility of her care. And being OK with it all.

For me, year three brings about ideas of personal growth, of accepting that this is the new normal we live with, the idea that I am not a perfect pancreas and God I should stop trying to be one! and ideas that I can't possibly do this without the support of my friends in the diabetes online community.

Three is a turning point. One is learning. Two is rounding the bend. Three means you're stuck with it for life. Three reminds me that we are not newbies anymore. Three reminds me that we survived the worst and are here to tell the tale. Three years reminds we that we are survivors. Three years reminds me how fast time goes. And how much it changes a person to have to walk through the fire.

Year three is also reminding me that one year it will be year thirteen, then twenty three, then thirty, then thirty three. May there be many more threes in her life.

Year three is the trifecta... the perfect alignment of the sun, moon and stars... the triangle, the trinity...it's one more than a golden double...good things happen in threes.

Three.
Three down and many more to go.
God willing.

Happy Third Diaversary my sweet Grace!

You are all that, and a bag of chips.

(which you CAN eat, by the way!)

Marching on

2012-01-05T11:44:00.000-05:00

There are days that diabetes doesn't dominate my thinking. I KNOW! I KNOW! I can hardly believe it myself. I just plod along, plugging in this number and that number, treating the high, treating the low. And on we march.

It's strange to even write this. That it has become such a part of our life that sometimes there is nothing to write about. No strange occurrence with blood sugars. No situation that left me without something I needed. No panic days. Just days.

And that's good. Sometimes it is very good, getting off the rollercoaster that is diabetes (OK, it's still a rollercoaster, but it's more of a mild, kiddie coaster than something like Kingda Ka, OK?)

This is Kingda Ka.
And no, I will NOT go on it. (As DMamas and DPapas, we already know what it's like.) I do enjoy the Spanish speaking person yelling in the video though.
Now take a minute and enjoy it.

OK, enough thrills for one post.

What this post is about I suppose, is that after a while, diabetes just is.
It's just a part of our lives.
It's just something we need to do as we do other things, namely life.

And that is such a good thing.

The New Year

2012-01-02T13:03:00.000-05:00

Happy 2012 my friends!!!!

We made it through the holidays unscathed. We ate, bolused and prayed :0) and had some great times. Now it's back to the reality of going back to school and the march through the doldrums of winter here in PA. Can someone send a blizzard? Cause those are really fun.

Until I start blogging about all that went down this past month or so...

We are all well.
We are all healthy.
We are about to celebrate (damn right) three years of having diabetes.
We have enough diabetes supplies.
We have enough insulin.
We have the support, the friendship, the love and the laughter that is the DOC.

We are blessed.

Where have I been?

2011-12-27T18:54:00.000-05:00

The holidays - they overtook me!

I'll be back in the next few days!

T1Parents, Read this at Bennet's YDMV

2011-12-04T13:18:00.000-05:00

If you are a parent of a kiddo with Type 1, read this piece over at Bennet Dunlap's YDMV blog.

Bennet is the parent of two T1 kids and a thoughtful writer. And an incredible voice in the DOC.

'Of the ER, the Web and Perfection'

It's insightful, wonderful and spot on. (And has some wonderful football analogies.)

It started with the rice

2011-11-25T13:34:00.000-05:00

Hope everyone had a wonderful Thanksgiving!

I am so very sleep deprived that it's not even funny. In fact, it IS funny, cause I will uncontrollably laugh at anything, precisely because I am sleep deprived!

Grace has had some wacky overnights this past week. Lows after dinner, then treated, only to rebound sky high. Wakes up perfectly in range. The diabetes Goddesses are seriously messing with me.

Here is a rendition of Tuesday night. In all it's glory. Ever have one of these nights?

5 pm - 127 BG - 68 g carbs - 3.10 units (2.00 now, 1.05 over 2.5 hours)
Dinner time. Perfect in range number. We have chicken and white rice. I know white rice is a challenge for her. It's one of her favorite foods, and we eat it about once a month.

5:20 pm - 43 g carbs - 2.40 units - temp basal +20% for 3 hours
She wants more rice. I up the insulin and add in a temp basal for good measure.

7:00 pm - 37 BG - Suspend insulin - 1 15g juice, 2 glucose tabs, 1 15 g snack (all uncovered)
Grace comes out of the shower and says she feels a wee bit low. I test her. Thirty flippin seven. She replies that she feels more like a 65. Which I find funny, that she is in touch with what number BG she may be feeling. I think I dosed too much for the rice.

7:20 pm - 69 BG - Still suspended insulin - 1 15g snack (uncovered)
Still trying to climb out of the foxhole.

8:00 pm - 43 BG - Still suspended insulin - 1 15g juice, 1 17g granola bar (all uncovered)
OK, really, forty flippin three? I thought we were climbing out, not heading back down the foxhole!

8:30 pm - 61 BG - Still suspended insulin - 1 about 17 g banana (uncovered)
Here we go again. I think we heard this tune before, didn't we? Up, down, up, down.
Grace goes to bed. I assure here 'I got this honey, you just go to bed.'

9:00 pm - 106 BG - Still suspended insulin (for good measure)
I see the light at the end of the tunnel. Little did I know that was the freight train headed my way.

9:20 pm - 262 BG - Turn insulin basal rate back on - Bolus .70 units for high BG
OK, didn't see that coming. All of this food and suspended insulin is starting to build up. But I'm too scared to set a large temp basal for fear of plummeting again.
The house starts to go to bed. It's just me. Awake on the iPad in the hallway.

10:00 pm - 259 BG - (.65 IOB) - Temp basal of +20% for .5 hour
Isn't that the same number? This is where I loved Apidra. Man, that insulin attacked highs and sent them down baby. Novolog takes its sweet ole time. Ticks me off. I can take lows, it's the highs that do me in.

10:30 pm - 305 BG - Bolus .35 - Temp basal of +30% for .5 hour
Here's where I cursed, cause I finally catch on how this night is gonna roll. We are climbing. The snacks are digesting, the lack of insulin from suspending it, all coming to bite me in the bottom. I am sleepy and I just wanna cry.

11:00 pm - 342 BG - Bolus .35 - Temp basal of +50% for .5 hour
I believe I cursed a lot here. A whole string of obscenities, but I used no voice, just mouthing filthy word after filthy word. It felt good. I throw caution to the wind and I plug in a +50% temp basal. Who's your Mama now, D, huh?!!

11:30 pm - 309 BG - (.95 IOB) - Temp basal of +20% for 1 hour
A lower number! You know how our thinking is so twisted that I am excited to actually see a 309. That's sick, somehow. But she is coming down. I think I kissed the PDM.

I sat back down in the hall with my iPad. I leaned my head back and fell asleep. This is not like me.
I awoke with a start. It was 1:00 am. Craptacular.

1:00 am - 343 BG - Bolus .65 - Temp basal of +50 % for 1 hour
Mother of God - she's up again! What the heck happened? Now I am REALLY awake.

1:30 am - 294 BG - Bolus .05 - Temp basal is still running
Yeah, lower!!!! Do you feel like you are on the rollercoaster with me? Only this rollercoaster stinks.

2:00 am - 281 BG - Bolus .10 - Temp basal of +20% for 1 hour
Now I'm mad. Now, D, you have totally ticked me off. You will not win.

2:30 am - 204 BG - No bolus - Temp basal is still running
I am winning! I am winning! I am winning! I also feel punch drunk.

I try and lay my head down for a few hours.

6:00 am - 110 BG - No IOB
Hee hee hee. I think I might have won :0)

That was my night. Does any of this sound familiar to you? Cause I know there were Mamas sitting in hallways just like me, waiting for lows to rise and highs to come down.

Grace wakes up at 7 am.
'Mom, how was my night?' - Something she always has asked me, meaning 'how were her blood sugars overnight?'

'Oh honey, you were fine all night. I made sure of it.'

Thankful

2011-11-22T10:59:00.001-05:00

Happy Thanksgiving everyone!

Thank YOU, DOC for all the support you give me and Grace throughout the year.

Thankful for the roof over our heads, the warm food on our table and the gift of family.

Thankful for medicine and technology, which keeps my daughter alive every day.

Thankful for doctors, guiding me in the care of my daughter.

Thankful for teachers and staff who care for my gal during the school day.

Thankful for a job to do and the hands to do it with.

Thankful.

It's a Wonderful World folks. Here's a little Louis Armstrong to remind you.

The Book of Better

2011-11-16T12:56:00.001-05:00

Addition 11/21/11 - Kim over at the uber-fabulous blog Texting My Pancreas also reviewed The Book of Better. She gives some great thoughts about it. Go over and read her review here.

Wanna read something that will motivate you to make your 'diabetic life' BETTER?!
I found it, in The Book of Better: Life with Diabetes Can't Be Perfect, Make it Better by Chuck Eichten

The publisher of the book, Three Rivers Press, sent me a copy to read and preview. I read it in one sitting, the day after getting it. It's that good. And funny. And insightful. Oh and it's straightforward and honest. Chuck makes you laugh, makes you think, makes you think some more and then makes you question how you can do it all better.

Chuck has been diabetic since age 13. He grew up in the Midwest. Works for Nike, first as an apparel designer, then in Nike Brand Design, and now as the Design Director for the Department of Nike Archives (DNA). You can read his biography here. Fascinating career.

The whole premise of the book is that, as Chuck says, we can't be perfect, but we can always, always, always, be BETTER. Better at everything, including diabetes. We can always make better decisions about what to eat. We can always make better decisions about exercise and insulin intake. We can always do better with our A1Cs. We can always do better in accessing and using technology to take care of ourselves and our diabetes. Always. DO. BETTER.

And isn't that a wonderful way to look at all this care? That we can't be perfect and we should stop trying to be. But if we adopt the mantra of doing BETTER, well, that's DO-ABLE. In my mind, it's perfect sense. Stop the perfect Penny. Stop trying to achieve the perfect diabetic care. Do BETTER Penny. Work with what you have and what you can access and do it BETTER than you have done it before. It won't be perfect, but it sure will be BETTER. Physically, emotionally, mentally. Better.

A couple quotes stood out for me while reading:

'The highest gift a patient with diabetes can ever receive is a way to make diabetes itself the road, to find meaning in living with diabetes.' - Dr. Victor Montori, Div. of Endocrinology, Manyo Clinic (foreward)

In his chapter about 'Talk About Diabetes' Chuck has some profound thinking to share. In a most straightforward way...

'Diabetes is a scary monster. Diabetes is just about everything you've heard.

Thoughtless, inconsiderate, selfish, sloppy. Shows up early, goes home late. Reckless and bullying. Prone to sneak attacks. And unlike many of our other personal scary monsters, diabetes isn't just made up in our head.

Scary monsters, real and imagined, are part of life. They don't go away when we run from them. They don't go away when we give in to them. They don't go away when we ignore them.

Truly, the most effective scary monster deterrent is understanding.

The second-most effective scary monster weapon comes FREE with understanding: COURAGE.'

- pp. 36-37, The Book of Better

And something that really struck me, in his chapter about 'Future Better:'

So what do kids with diabetes need from the grown-ups?

Kids needs information - Learn everything and then share with your child what they need to KNOW - not what you hope, or wish or guess - but what they NEED TO KNOW about diabetes and moving and eating and insulin.

Kids need positivity - They don't need pity or sadness. Diabetes is not a cause for sadness. Sadness gets your kid with diabetes EXACTLY NOTHING. Kids will feel bad for you, the parent, because you are so sad. And it's not about you. And it's not about sad.

Kids need you to believe - Diabetes is CHALLENGING, not DEVASTATING.

Kids need you to show them - If we want our kids to believe what we say, WE HAVE TO DO WHAT WE SAY.

pp. 262-263, The Book of Better

And there are tons more. His chapters include:

'The Bottom 10 Bad Things About Diabetes'

'The Top 3 Good Things About Diabetes. I An Not Kidding.'

'People with Diabetes and the People Who Love Them

'Insulin; A Wish Come True'

'The Best Available is Better'

'Ups and Downs of Highs and Lows'

and that's not even all of them!

I cannot recommend this book enough, whether you are a parent of a Type 1 child or a Type 1 adult. I found it refreshingly honest, cut-to-the-chase about diabetes book, that lifted me up and gave me a feeling that I can DO better with diabetes. That I indeed, cannot be perfect, but I can always DO better by Grace.

And isn't that something, to hear that? It is for me.

Buy the book. DO BETTER.

Disclosure: Three Rivers Press sent me the book for free. They did not ask me to write a review. All opinions are truly and totally my own. But you really should buy this book. Get it on Amazon for $10.20. That, my friends, is a well spent $10.20 so that you too, can do and feel better.

This should make you chuckle

2011-11-10T11:22:00.001-05:00

When I schedule Grace's follow up endo appointments now, I can log onto our hospital's new portal and see the appointment, along with test results.

So, I logged on to see our next appointment.

Ummm, they may want to think about how they abbreviate their Follow Up 'Visit Type.'

Diabetes FU indeed.

Endo Visit & Diabetes Candy Exchange

2011-11-03T09:20:00.000-04:00

We just had our 3 month endo visit on Tuesday. Grace's A1C remained at 7.1. Yes, I am fully and well aware that that is a 'good' A1C, but I am used to 6.6, 6.8 and even 6.4's. And I so wanted to 'do better' this time around, as her A1C 6 months ago was also 7.1. Then again, I know that I should be thrilled with 7.1. Her growth hormones are beginning, we are starting early puberty and had some uber-highs, from the hormones and from our knock-down-drag-out battle with Apidra. That's chronicled here.

I chalked it up to 'It's good, but we can do better.' And just to put it out there, that is HARD for me. Usually when I do and try my best, I get my best. And maybe this IS our best. Frankly, maybe this is rock-your-socks-off-no-one-else-could-that best, but it doesn't FEEL like MY best, if that makes any sense at all from my twisted mind.

A1C does freakin things to your mind. It's not a grade, yet it IS a grade.
Hell with it.
We will do our best and see how we fare in 3 months.
That's all I can do.

We attempted the Bayer A1C test. What a bust that was. Apparently, we did not have enough blood to do the test. We filled the 'blood filling device' to its brim, but the A1C device gave out a code after 5 minutes that there was not enough blood. Big disappointment. I am saving the other test in the kit for our 3 month endo appt in February.

Look - here's us following the darn directions!
And waiting 5 minutes for the test to end.

The code that says 'not enough blood.'

It was a completely diabetic day on Tuesday, as we had our annual Diabetic Candy Exchange at our local hospital. You can read about last year's 2010 Candy Exchange. Once again, it was fabulous!

Grace brought her bag of candy that she did not like to the exchange. She kept 'the good stuff' as she puts it. She forked over the rest. They carted away tons and tons and tons of candy that the kids brought in. Literally, wagons of candy. I, of course, scooped out the fun size little bags of Skittles - what diabetic throws them away? They bring you up from a low baby! I put my hand right in that giant bag and scooped them out. Grace was embarassed. I wasn't. Any one of you D-Mamas would have done the same thing!

They had pizza, of course. Grace and I chose the hospital cafeteria food instead. They had booths, a pumpkin carving man, raffles for the kids to enter, and of course, face painting.

Grace needed the swirls on her face.

And they rocked my gal's favorite thing - CRAFTS!!!!

And girl, did she ever go to town on the letter bracelets and necklaces.

They totally cracked me up.

Here is Grace's:

Here is the one she made me:

Here is the one she made our OmniPod rep, who had a table there:

Walmart D-Supplies & Bayer A1C Test

2011-10-30T15:58:00.000-04:00

Our town just got a new Walmart. We've only ever had Targets. Opened my eyes to a whole new shopping experience, I tell ya! We just got the Walmart ad in our Sunday newspaper and lo and behold, there was a whole section devoted to diabetes! I showed Grace and she said 'It's like it was meant to be!' - you would have thought I showed her the Toys R Us toy catalogue or something!

Walmart ad booklet

Good to know Walmart has Humalin for $24.88!!!
Glucose tabs - $1.23 - Grace chose the watermelon and fruit punch flavors

Our 3 month endo visit is on Tuesday. I have always wondered if the Bayer A1C kits are near what our office A1C is. So, I bought one and will try it out on Tuesday when we go.

I opened the kit and well, it looks a little more involved than I thought. Good thing I am a reader-of-directions before I attempt anything. Unlike others in my family who-shall-not-be-named but they are also the -I'll-be-damned-if-I-will-ask-for-directions kind of person. Wink wink.

$22.48 for two A1C test kits in one package

Ahhhh, the elusive 6.3. One can hope, right?!

Lots of packaging. Codes much match. Do not open until ready to use.

Each kit has two cartridges that are inserted into the black base.
Then each has a blood collector and 'shaker' that is pressed into the front of the base.

First you take the blood sample and insert it into the blood collector.
Shake it and snap on the cap and then stand it upright.

Then you connect the cartridge to the base, wait for the prompts and remove the cap
off the blood collector. Then you press the tip of the blood collector into the front.
5 minutes later, voila! An A1C!

So, I will let you all know how this goes on Tuesday.

JDRF Walk 2011

2011-10-25T13:51:00.001-04:00

Our JDRF Walk was this past Sunday. We participate in the JDRF Philadelphia Walk, which takes place at the Art Museum circle in Philly. It is a grand place to hold a walk. Everyone dutifully runs up the steps, aka Rocky. There are masses of people. The actual walk takes place on the drive around Boathouse Row and the Schuylkill River (we say 'Skoolkil')

We are Gracie's Gang for our walk. It's just our little ole family who does it, but it makes us feel united. It makes us feel we are in this together. It makes Grace feels so supported, from the people who matter the most.

Most walks are hundreds of people. Some are thousands. Our walk this year had more than 10,000 people walking in support of Type 1 diabetes. There were hundreds of teams. The largest team, The Cohn Sisters, alone, raised more than $1.75 million over the past 4 years. The Walk raised $2 million this year.

Here's a short news segment video of the Walk. Yes, we are in the crowd and we waved at the camera. We are in the light blue shirts, right side of the screen, in the large crowd video. Don't be disappointed you can't see us, we appear for like 6 seconds.

The greatest part of the walk this year was seeing Haley speak. Haley of the great blog Naturally Sweett. She spoke so clearly, and so much from the heart, about diabetes. And she mentioned the DOC!!! I cheered. You can find what she said and see the video of her saying it, here on her blog. I am so very, very proud of her. She brought tears to my eyes.

And Grace and I finally got to meet Haley in real life! (She's beautiful, by the way!)

Haley and Grace

Other people on our 'team', so to speak, showed up too.

Our first CDE at our endo's practice!

Our endo, the fabulous Dr. B. showed up too!!!

Our OmniPod rep!

The one thing I want to tell all of you is how utterly breathtaking it is to walk with so many people, focused on one thing, all at once. The crowd is massive. You can hardly take three steps, then you take four, then you start to walk, with everyone else, side by side. And people are laughing, and talking. And there are t-shirts and banners and kids in strollers, and pumps and tubing and backpack and mommies and daddies, all walking. For the same thing.

Halloween Tips on A Sweet Life

2011-10-21T09:49:00.001-04:00

I was asked to guest post, along with some other D Mamas and D Papas,

over at Jessica Apple's blog,

A Sweet Life.

She asked us to reflect on Halloween and if we had any tips for managing Type 1 and the holiday.

So, head on over and check out what we had to say.

I kept mine short and sweet.

Halloween, it's coming, get those carb count lists ready!

You will find some great ones here and here.

JDRF carb count list for candy

ADA 'Planet D' carb count list

Insulin Pumpers carb count list

Now, get out there, trick-or-treat and bolus!!!

CWD Technology Conference in Philly!

2011-10-17T13:11:00.000-04:00

The Children with Diabetes Focus on Technology Conference

is coming to Philadelphia in February 2012!

If you are even remotely close to Philly, I urge you to come!

Not only for the learning, but for me to meet you, o' faithful reader!

You can read about the conference here.

You can register for it here.

Come!

Hayride!

2011-10-12T11:26:00.000-04:00

The kids say the floating white dots are 'orbs' - like The Sixth Sense.
I say my camera lens is dirty.
Cause if they are orbs, that FREAKS ME OUT.
And that means there are a LOT of dead people at our farm.

Hayride! On a huge wagon, in the pitch black night.
We took a ride to 'Witch's House.'

There it is - Witch's House!
She's a friendly witch who gives out cookies and tells jokes.
Cause if it had been a SCARY witch, Mama would not have been on the ride!!!!

The Witch herself!
She gave out giant sugar cookies. I grasped at 35g carbs for it.
We ended the night at 89.
High five me!

The night ended with a bonfire, roasting marshmallows and apple cider.
SWAGged a 6g on each marshmallow and a 15g for a 6 oz cup of cider.

This should look familiar, doing it all one-handed.
And bolusing while she runs and grabs another marshmallow.
I'm surprised I can't juggle.

Miracles Every Day

2011-10-06T20:20:00.003-04:00

This is the post that has nothing to do with you-know-what.
It has everything to do with miracles though.
And something as simple as going to the dentist.

Hope is a form of planning. -Gloria Steinam

My oldest child, Maddie, has autism. She's 14 now and was diagnosed when she was 2 1/2 years old. This was back in 1998. There wasn't the knowledge, the awareness and the multitude of children with autism that there are now. It was very lonely having a child with autism in the late 1990's. It was very, very, very lonely having a girl diagnosed with autism, as the majority of those diagnosed were boys.

Of all the challenges Maddie faces, one of the largest for my daughter has always been oral sensitivity. Whether it be to hold or cold foods, taste or texture, Maddie was, and is, very sensitive to what went or around her mouth. She also had a sensitive gag reflex, meaning that as soon as something did go in her mouth, it stimulated her to gag, which in turn, became throwing up. As you can well imagine, that presented problems in trying to go to the dentist.

I first tried going when she was almost 3 years old. Maddie ended up kicking and screaming, assaulting me and almost assaulting the dentist and almost being restrained in the dental chair. She did not understand what we were trying to do, so she fought. We were asked to leave our first dental office and not come back. So, at age 3, no teeth cleaned by the dentist.

We tried again when Maddie was almost 4. Again, the same situation. This dentist, like the others, demanded that Maddie sit in the reclining dental chair, with a bib, and she was not allowed to touch anything. All of those things did not work. When she would sit in the dentist chair, her gag reflex was stimulated and she would throw up. It took us one time in the dental chair and lots of vomit to figure out that this would not work for her.

Yep, asked to leave the second dentist too.
Okay then.

I found the Special Needs Dental Clinic at our local hospital through our developmental pediatrician we were seeing there at the time. Our developmental pediatrician, at our yearly visit, and after hearing our horror stories at the other two dentists, looked at me and said, you know, there is a dentist upstairs, one who treats kids with special needs, he will see her.

I practically ran up the stairs to introduce myself and Maddie. I made an appointment right then and there and began to spew forth our history and ended with 'Do you think you could just clean her teeth? Do you think you could just check them?'

You know what the dentist said to me 'She's a beautiful child. She's just lovely Mom. We can clean her teeth. It might take us a while, but I promise to never hurt her. I promise to move at her pace. And I promise that when she leaves my office every 6 months, she will have clean teeth.'

And as he said it to me, I started to cry. No one up until this point ever pointed out that my child was beautiful, that they saw the beauty in her. No one ever told me they would clean her teeth. No one promised me that they would not hurt her. And boy did I cry. And I hugged him and thanked him.

And we have gone back, faithfully, every 6 months, since 2001.

We started with Maddie sitting in a regular child's chair, hygienist facing her, Maddie wearing surgical gloves that she requested, holding every tool. Slowly opening her mouth, never asked to use 'Mr. Vacuum' or whatever they call the thing that sucks up the saliva. She was allowed to spit. She threw up - many, many, many times. And you know what they did? All those dental hygienists and I cleaned up the throw up and they continued to clean her teeth. We changed clothes after every visit, we were less-than-spot-clean. We once cleaned her teeth while she lay on the floor. We let her hold books and toys and lovies and chew tubes. We sang songs that she loved. We once cleaned her teeth while giving her a break to walk around every 4 minutes. She cried throughout one visit. She screamed throughout another. They kept cleaning her teeth and smiling.

It has been 10 years since that day that the dentist told me he would clean her teeth. And he kept every promise he ever made to me. He cleaned her teeth. He, to this day, never has hurt her. He moves at her pace. And each and every time he sees her, he takes her hands in his and tells her, straight up, that she is beautiful and lovely and my, isn't she growing up just great.

When Maddie was 4 and just getting started with him, he looked at me in the eyes after a visit and said, 'Penny, I know you won't believe me, but one day she will walk into this office and come back without you. She will trust us. She will sit in the dental chair. She will wear the bib. She will let us clean with all the tools. I know it. I have faith that we will get there.'

And I smiled, because that day, 10 years ago, seemed so very far off.

And yet, here I am.
10 years later.

And guess what Maddie did today?
She went back by herself.
She sat in the dental chair.
She wore the bib.
She let them use all the tools.
And she got her teeth cleaned.

Miracles every day.

Thank you Steve Jobs

2011-10-06T06:17:00.000-04:00

Thank you Steve Jobs,

from every parent of a child with special needs

who you opened doors for -

communication-wise, socially and emotionally.

Thank yous from special needs parents:

Love That Max - A thank you to Mr. Jobs

A Diary of a Mom - A Ding in the Universe

Badass D-Mamas

2011-10-03T09:50:00.002-04:00

A couple months ago, someone wrote a blog post about dealing with Type 1 kids at a diabetes camp in the summer. The post went on to lament that some kids are 'pusses' (their words, not mine, and oh, it later got changed to 'wusses' - there, doesn't that make you feel better about your child??!!) because they may need EMLA cream when changing insulin pump sites, or that they may need hand holding, or they may need to lay down to change their site. The point of the post was to tell all of us D parents to buckle up, stop coddling the damn kids, stop creating these pusses and for Gods sake, it's not that bad, doesn't hurt and whoever the hell told you kids need special treatment???

Buckle up, ride the rodeo, stop whining, don't be a puss. Or a wuss.

Whew.

It got to me, that post. I think of it every now and then. And I think that the person who wrote it doesn't have an inkling of what it means to be a badass.

Yep, a BADASS.

I know some badasses. Specifically, some badass D-Mamas.
What makes a D-Mama a badass?
I will tell you.

If you raise more than one child with Type 1 in your family, you are a badass.

If you shoot skittles and other uppers into your hockey playing son and sit through practices, monitoring blood sugars like a honey badger, you are a badass.

If you tell it like it is, and ask others to create videos to help your son realize how great he is, you are a badass.

If you live thousands of miles away, but feel the same same, you are a European badass.

If you have kids with other conditions, and one with D, and you you rock it, you are a badass.

If you have your Type 1 son make videos, so he can help other Type 1 kids, you are a badass.

If your child changes his own insulin pump site, at his own pace, with support, you are a badass.

If you walk for diabetes and form a team, and 119 people show up for that team, you are a badass.

If you remind us all what we need to remember and know about being a DMama, you are a badass.

If you illustrate your life as a D Mama through gorgeous photos that show all parts of your sons life with D, you are a badass.

If you have one child with diabetes, then survive the diagnosis of another child, and maintain your sanity, you are a badass.

If your T1 daughter has a sleepover, and you go with her to let her have fun and feel like everyone else, you are a badass.

If you vlog about your daughters A1C with honesty and emotion, for all to see and to feel same same, you are a badass.

If you check your own blood sugar, to show teachers how to test blood sugar, you are a badass.

If your child has Type 1 and celiac, and you make sure they attend birthday parties, you are a badass.

If your child accepts their diabetes and wants to tell the world that it's OK, you are a badass.

If you share with others recipes that help your Type 1 child, you are a badass.

If you write gorgeous prose and write eloquently and honestly about having a Type 1 daughter, you are a badass D-Papa.

If you rock the shoes and a wicked sense of humor while caring for a Type 1 son, you are a badass.

If you parent a child who speaks up and says "I CAN have that!", you are a badass.

If you manage diabetes and have an 'off' day like everyone else, and everyone who reads it says 'same-same', you are a badass.

If you have sat in 504 meetings and worried about your son or daughter's care at school, you are a badass.

If you have pondered over which insulin pump to get and spent time researching them, you are a badass.

If your kitchen counter looks like all of our kitchen counters at days end, you are a badass.

If you yourself are Type 1, and you are raising a Type 1, you are such a badass.

If you have cried tears about your child's Type 1 diagnosis, and then dried them and moved on, you are a badass.

If you have ever been awake in the middle of the night, checking blood sugars, and decided to blog, you are a badass.

If you use EMLA cream on your child because that is what they need, you are a badass.

If your child lays down to change their pump site, because that is what they need, you are a badass.

If every day, you fight for what your child needs, their diabetic care and do what needs to be done, you are a badass.

If your child relies on you to change their pump site, because that is where they are at, you are a badass.

If your child needs to hold your hand, or hug you, or cry during their pump site change, and you recognize that, understand and provide a hand, a body or a shoulder on which to do so, you are such a badass.

If you encourage your child to do it themselves, when they are ready, in their good ole time, knowing, (much like the old they-won't-wear-diapers-to-college-saying), that they will not attend college with you changing their sites, you are a badass.

If you, every day, wake up, to do it all again, you are a badass.

I know there are tons more of you out there. Badass D-Mamas.
Tell me some more that you know. Provide the link in the comment section with your comment.

We should celebrate that WE are the badasses.

Diabetic Party Mix

2011-09-30T10:27:00.001-04:00

And for your entertainment on a Friday...

Grace moving and dancing to "Twist My Hips'

(There are only 47 more movies like this one on my Photo Booth. Dear Lord.)

Happy Friday everyone!

Apidra: The Smackdown

2011-09-27T10:29:00.000-04:00

Oh Apidra, how I love and loathe thee.

About five weeks ago I switched Grace over from Novolog to Apidra in her OmniPod insulin pump. And things went swimmingly. Highs were coming down faster, we were not seeing a high postprandial spike, and it really seemed to work faster for Grace. I liked it. I saw less insulin being used more productively for her. I changed basals, I:C ratios and correction factors, and all was well. Honestly, all was well for about 3-4 weeks.

Until this happened.

And yesterday happened.

Quick synopsis - I realized that Grace may need to change her Pod every 48 hours, because of this issue with Apidra. It was literally conking out at 48 hours in the Pod. Not consistently and not every time, but it's like waiting for the floor to drop out from underneath you. It's like playing Tower of Terror with the pump. Honest, that's what it feels like to me!

This was not sitting well with Grace. She wanted the full three days out of her pump sites and who can blame her? The damn thing hurts when it goes in! I wanted that too, as we got a full three days, and sometimes a few bonus hrs, out of each Pod with Novolog. I told her of my new plan, that we would keep our eyes peeled at the 48 hour mark, and when the numbers started to skyrocket after 48 hours, we would change it. Maybe we would get three days out of a Pod, it had happened before with Apidra. That was our game plan, but really, why is watching your child like a hawk for every hour after the two day mark any kind of rational diabetes management, for anyone frankly?!

Sorry for the little sidetrack...

Which brings us to yesterday.

Grace woke up at a beautiful 125. The magic 48 hour mark was at 12:30 pm.
10:30 am classroom check - 210/190. Hmmmm, little high, suspicion begins.
11:45 am lunch check - 205. OK, well she should not have gone UP since the correction for the 190 happened an hour ago and she's had no food since breakfast
3:30 pm - 410. Crap. Recheck of 388. Double crap. Ketones of .3

I look into the logbook and it hits me. The bewitching hour of 48 hours is past, 3 hours past. That bewitching hour would have been at 12:30 pm today.

It's almost like the Apidra turns to water in her pump after 48 hours.

We change her pump site, and I use the newly opened Apidra, the same vial that I filled this pump with. I attempt a valiant correction of 2 units through her pump, based on the 388 reading. I give her a shot of 1 unit in her arm, from the vial of Apidra, frankly, to prove the point and see if this is really how it goes.

I check 15 minutes later and she is 407. Four frickin oh seven. That is UP!
It's like trying to stop the freight train by sticking your foot out the train door and dragging it on the ground, oh, while wearing flip flops. Nothing good is going to come of it.

I pull Chuck in from outside and say, we need to convene the team here. What's our game plan?
We agree, check in over the next hour and if she has not lowered by at least 30 points, we pull the plug on this pump. We change her site, and we do it with Novolog.

Did I mention this was all happening at dinner time and Grace is starving. I will not let her eat. I give her a mozzarella cheesestick to hold her over. and a piece of chicken. Oh and two slices of ham. And Grace is crying. Cause it sucks to be 388 and climbing. I can SEE it in her, she is not herself.

The next reading? 429.
My friends, that is NOT 30 points lower.

The next reading? 402

The next reading? 399
This is one hour after the correction through the pump AND the arm dose.

Plan goes into action.

One Pod filled with Novolog. Dose of 1.0 unit through the new site. One dose of 1.0 unit given by injection in her arm.

Go to work Novolog, go to work.

30 minutes later... 293
1 hour later... 168
2 hours later... 74
3 hours later... 59
Suspend for 30 minutes and a juice and 2 tabs later... 101

So, now the question is - did some of the Apidra bring her down at all or is this all the Novolog? All I do know is that for close to 3 hours, Apidra did not budge her, at all. It's like it wasn't even being dosed to her. A few thoughts - was she climbing so high that I was just slowing down the high by the dose through the arm, but clearly it wasn't enough to move her down? Did the pump conk out and only the 1.0 unit of Apidra through injection work? Is heat affecting Apidra - her tummy site is a warm place for it. Or was this coming down from the high the work of the new pump filled with Novolog and the 1.0 unit of Novolog through her shot?

I have talked with others about Apidra in their OmniPod. Some are doing great, no problems at all. Some are experiencing the same issue as us - the 48 hour mark spells doom for Apidra in the Pod.

For now, I am out of the ring in the match with Apidra. It's back to Novolog for us for a little bit, until I have the courage to try Apidra again.

Oh Blog, how I have neglected thee!

2011-09-23T10:52:00.000-04:00

This is how I feel, except I don't even hardly Twitter!

I have been ultra-busy lately.

I am behind on blog reading, commenting and obviously writing.

Hoping to change that this weekend.

Some upcoming posts...

...scars

...being a badass (hee hee hee)

...logging numbers and this damn logbook

Happy Friday everyone!

Penny & Grace's 30 - Invisible Illness Week

2011-09-17T15:17:00.005-04:00

Invisible Illness Week - 30 Things Meme

There have been such great ones out there - Kerri, Abby, Jonah, Meri and Reyna for starters. It only felt right to join in. I hope others do too.

1. The illness I live with is: Type 1 Diabetes (ok, I live with it, but Grace LIVES WITH it)

2. I was diagnosed with it in the year: 1999. January 9, 2009 to be exact, at about 2 am in the morning.

3. But I had symptoms since: About two weeks before Grace's diagnosis - lots of water drinking, hunger like you wouldn't even believe and her size 5 jeans still fit her just before Christmas, something I was surprised at, but pushed to the back of my mind as a growth spurt.

4. The biggest adjustment I've had to make is: For me, it's the constancy of it, the constant thought in the back of my mind of thinking about it 24/7/365. I often tell people this tale - You know with autism, and my oldest daughter, I could take a day off from the therapies, the interventions, the never-ending of it all. I could plop her in front of the TV when she was 3 and literally take the day off. And I admit it, I did that a few times, cause I needed my sanity and I would have lost it otherwise. She was still gonna be autistic whether she watched a day of TV or not. I could take off. With diabetes, I cannot. There is no day off from it.

For Grace, I would say the biggest adjustment is not being so carefree, as much as I promote it with her. Being able to just go with friends to the park, walk to the store, be invited to the pool - they all take advance warning most of the time and planning on both our parts. Some of the spontaneity is gone and if there is one thing my girl loves is spontaneity. I feel bad about that on many occasions.

5. Most people assume: That diabetes can be 'controlled' and that all I do is program insulin into her pump and voila! we have 'control.' Oh, if only it were that easy, right?!

6. The hardest part about mornings is: Not asking her to test the first thing in the morning. I stopped about a year ago, knowing that it shouldn't be the first thought in the morning. Ever since, I ask her about school, the day ahead, and our conversation doesn't revolve around diabetes.

7. My favorite medical TV show is: Oh gosh, I don't watch that much TV at all, I can't even name a medical TV show! But I tell ya, put on an episode of Hoarders and I am all over it like white on rice. Makes me feel my house is clean and that I am organized.

8. A gadget I couldn't live without is: Her OmniPod, cause it's her pump and her meter. If the thing cleaned up after itself, I might have to marry it.

9. The hardest parts about nights are: Gee, let me think, this one is easy. It's the worry. The worry that she will have an nighttime low that I will not catch. The worry that she will not wake up. The 2 AM check each night reminds me of the constancy of this disease. And often, when I lay my head back down, I cannot go back to sleep. My mind starts working and worrying and listing and thinking of things to do.

10. Each day I take 1 pills and 0 vitamins: OK, is it weird that I don't take any medicines at all, I hate to even take Advil if I have a headache? I think the body heals itself, I really do. So, no meds for me. And Grace doesn't take any vitamins or pills. Insulin is her drug of choice.

11. Regarding alternative treatments: None for Grace so far, in terms of 'treatment' for the D, other than a constant flow of insulin. I am a believer that healing and treatments come in all forms. I like to think I am open to other ways of helping her should she need it, and the help ay not always come through a medical professional. I learned this through my oldest, who was GFCF (gluten and casein free) for 5 years when she was diagnosed with autism at age 2. The medical professionals looked down on it, but I knew it worked. My girl stopped screaming and flapping and stimming and didn't have red cheeks for the first time in her life. Alternative treatments like the GFCF diet I believe saved her from a progressive slide down into severe autism. So, yes, I am a believer in help in all forms.

12. If I had to choose between an invisible illness or visible I would choose: Well, we have both here in this family - autism and diabetes - so I don't have to choose, so there!

13. Regarding work and career: I left my wonderful teaching job, a position I held for 21 years, when Grace was diagnosed in January 2009. It was hard, emotionally, mentally and financially to leave it. I knew we didn't have anyone else to care for her. I did what I had to do and I don't regret it. I do go through times where I am extremely sad I am not using all my skills in this world, but they are shortlived and they pass. Grace needs me here and now and that is what is important. But I tell ya ladies, I was one hell of a good teacher. Some day, I will head back.

14. People would be surprised to know: That I consider our lives and our family very normal. And that, I admit it, I have a food scale, but I don't use it. Now I have 'outted' myself. Crap.

15. The hardest thing to accept about my new reality has been: That Grace may have a shortened life because of diabetes. That she may have complications, as hard as we work at keeping her numbers in range, they may still come. I look at her and want her to be 'a healthy grandmother' is what I always tell her, but the reality is, she may be an older person with complications that diabetes bring, no matter what we do. That is pretty hard to accept when I think about it.

16. Something I never thought I could so with my illness that I did was: Go to DisneyWorld with a newly (2 months in) diagnosed child with Type 1 diabetes and a child with autism. We did, we had a grand time, memories were made and it made us stronger as a family. My husband and I looked at each other on the plane ride home and said 'We can do anything now.'

17. The commercials about my illness: Just once I want to see a BG meter on TV read '374' or '42.' The numbers on the meters - the elusive 104, always just make me a little ticked off.

18. Something I really miss doing since I was diagnosed: Being able to just pick up my purse and head out the door with the kids, without the 10 lb bag of supplies that need to accompany us. Sometimes I feel like a pack mule.

19. It was really hard to have to give up: Sleep. Definitely 8-10 hours of sleep tonight, compared to a 4 hour chunk, then a 2 hour chunk.

20. A new hobby I have taken up since my diagnosis is: Blogging and the DOC baby!

21. If I could have one day of feeling normal again I would: Go to the beach, all day, with no supplies other than a chair and a boogie board and not worry about what time we will eat or what time we will come back. Grace says she would eat anything she wanted to, all day long and not once tell me about it.

22. My illness has taught me: That Grace is the most resilient kid I know. Besides all of your kids, they are also the most resilient kids I know too. It has taught me once again, that each day we have on this wonderful earth is a blessed one. That I should never take it all for granted. It has taught me how much we are loved.

23. Want to know a secret? One thing people say that gets under my skin is: When other people ask me if I have the diabetes 'under control.' It's like trying to control the ocean, or trying to herd cats. No, frankly, I attempt 'control' but often, the diabetes runs me over.

24. But I love when people: Connect with Grace about her diabetes. When she meets other Type 1s and they flash pumps or compare meters, or just talk the D talk. Grace feels a connection and so do I. I think 'These are my people!'

25. My favorite motto, scripture, quote that gets me through tough times:

"Tell me, what is it you plan to do with your one wild and precious life?"

~Mary Oliver

One go round on this sweet planet. One chance to raise these kids. One chance to do this diabetes right. One chance to go here, do this, do that. Spend it in despair or glory, time is gonna pass anyway. Choose joy and happiness each time. Choose to do something glorious with your life. When times get tough, I think of the choices I have and it always comes back to the choice to be happy.

26. When someone is diagnosed I'd like to tell them: That it will be alright, you will find your 'new normal' and believe it or not, you will laugh again, have good times with your kids and you will find support for caring for a child with diabetes. I wish someone had said these things to me while I was in the hospital.

27. Something that has surprised me about living with an illness is: How many doctor appointments we go to and how, when someone truly understands your path, how joyous that can be. Whether it's a doctor who shows compassion and not judgement, to a nurse who takes the time to talk to Grace about something other than diabetes, I am always heartened that people understand we are more than our illness. I am grateful each and every time we meet a kindred soul who understands our journey may be hard.

28. The nicest thing someone did for me when I wasn't feeling well was: Grace would say that it was her friends who came to the hospital and brought her presents of arts and crafts to do. And that they came, but were too young to come up to her floor, so instead, their parents brought them to the parking lot, and there they stood, waving to Grace while she looked at the window of her floor. They came to see her, and see her they did. It brought tears to my eyes it was so very kind.

29. I'm involved with Invisible Illness Week because: We are here to learn from each other - whether it be about diabetes or life. I want to learn more about how people cope, so I can help Grace cope. I want to let others know we are out here, doing our best and living our lives.

30. The fact that you read this list makes me feel: Honored. Thank you for taking the time to learn something about Grace and I.

Saying I'm Sorry

2011-09-12T09:12:00.000-04:00

This is the story I began to write last night, at 2 am, sitting in my daughter's bedroom as she slept.
I completed it this morning.

I think I just want to cry. It would feel better, to cry about this, than to sit in my daughter's bedroom and check her blood sugar every fifteen flipping minutes and see numbers that all start with two.

Since 8 pm last night, here's the numbers roundup:
8 pm 244
9 pm 260
10 pm 252
10:30 pm 282 Pod change to arm
11 pm 272
11:30 pm 276
12 am 285
12:30 am 277 Pod change with NEW Apidra
1 am 291
1:30 am 265
1:45 am 272
2:30 am 242

THOSE ALL LOOK LIKE THE SAME NUMBER!!!!!!!!!!
I mean, you know what DMamas, I know meter accuracy, 282 is the same as 275!

Despite boluses ranging from .05 to .30 AND temp basal increases of +30% for hours.
WHAT THE HECK???

And Grace doesn't hang in the 200s. When she is that high, I correct and she comes down.

OK, so I changed her Pod to her arm at 10 pm. No problem. From the same just-a-bit-left Apidra bottle. Mistake, I think that was. I should have cracked open a new spanking new bottle of Apidra and roundly said 'Cheers my friends!'

It is finally at 1:30 am that I realize this is what I should have done. Why did it take me over 5 hours and readings that did not change, despite bolus after bolus, to actually DO the one thing I knew would help her. Sleep deprivation? I don't know, but last night I felt so very lost. I was so very tired.

And Grace was awake until about 11 pm through it all. I sat at the edge of her bed, my iPad in hand, desperately trying to stay awake and asking Grace to try and sleep, that I would take care of it, her job was to rest.

And I said some angry things last night. I cursed the damn insulin. I cursed the Pod changes.
Not cursed like sailor-cursed, but cursed them through saying -
'This is ridiculous...What the hell is wrong with this?...I cannot believe this... I will never get to sleep... I am so very tired..."

And Grace heard me saying it.

And I profoundly regret it. It's even hard to write that I said those things in a semi-awake 9 year old's bedroom, one who didn't ask for diabetes.
One who just wanted their Mom there, to make it all better.

Right around 11:45 pm, Grace whispers to me at the edge of the bed. She is about to fall asleep.
"Thank you for helping me Mom."

And I start to cry. I tell her that "No, no, Mommy is always here to help you through, no matter what. I will stay awake for days if that is what it takes. I don't mind Grace, it's just that I am so very tired and when Mommy is tired she says things she feels inside, instead of just keeping it to herself. But Grace, you are so very welcome. Mommy is so very sorry I said those things. I love you honey."

And I went to bed, finally, at 3 am, with a 179 BG and a +20% temp basal set for the next 2.5 hours.

And I went to bed with a heavy heart.

Diabetes Art Day - YOU are Our Sun

2011-09-01T11:03:00.000-04:00

Diabetes Art Day 2011!

Thank you Lee Ann!

Diabetes affects people all over the world.
There isn't a continent that doesn't have a Type 1 person on it.
So, next time you feel alone, remember, you, by far, are not.

Diabetes can also bring gifts to this life. Unexpected gifts.

Things you didn't see before, you see now.

Diabetes can color your world.

It brings both sun and rain.

I know one thing that has brightened our world - the DOC.

You, all of you, change the way I think about each day.

DOC - this is for you. I hold you up, like all of you hold Grace and I up each and every day.

Have I said thank you lately?

Thank you.

As I made this, each time I inserted a used night-time test strip into the styrofoam ball, I started to say all of your names - all the people I know through the cyber-space DOC. I blessed each and every one of you - Kelly, Kerri, BSparl, Scott, George, Reyna, Joe, Hallie, SweetPea, Wendy, Sugar, Tracy, Steve, Lia, Conor, Delaney, Lily, Heather, Meri + 3 boys, Lorraine, Caleb, Lexi, Justice, Lee Ann, Karen, Wil, Hannah, Laura, Nate, Haley, Scott, Arden, Leighann, Q, Pam, Grace, Joanne, Elise, Jen, Addison, Nicole, Cara, Amy. Kim, Mike, Denise, Bean, Tracy, Matthew, Jules, Frank, Cherise....I could go on and on, and I did, through each push of the tiny test strip into the ball.

And it hurt my fingers. And I kept going, cause my gal Grace keeps going every day. Grace created the 'flower' ball in the pictures above and as she did, she said her fingers hurt too. I reminded of what I tell her when things get rough 'Just do it.' And we did, together.

Diabetes Art Day tomorrow!

2011-08-31T09:39:00.000-04:00

Hey everybody - tomorrow is Diabetes Art Day!

This is the brainchild of the uber-fabulous Lee Ann Thill.

She also writes at her blog The Butter Compartment - check that out too!

Here is what we created last year

Stay tuned - we are creating for this year.....

1st day of school

2011-08-30T10:21:00.011-04:00

Back to school! Yep, we started before Labor Day around here. And I sent the troops off. I have one in High School this year, one in Middle School and one in Elementary. Three different schools. If that won't drive me to drink by the end of the year, I don't know what will. I have schedules that rival NATO in their complexity.

The post wouldn't be complete without the requisite first day of school photo, would it?
OK, here you go -

We wear uniforms in our district.
Solid color polo shirt and solid shorts/bottoms.
And my house is a mess.

This year Grace wanted more responsibility when it came to her diabetes care. I am all for that and I usually take her lead when she says she wants more responsibility. Last year, in 3rd grade, she would drop off her care supplies in the nurse's office, report for a 10:30AM BG check, report for lunch check and to get dosed and report there before she left to walk home, to do one last BG check and pick up her supply case. I have always left her PDM and her care kit in the nurse's office all day, it has not traveled with her.

I know, no one better even leave one comment about how AWFUL a mother I am for leaving her care kit in the nurse's office. OMG. Hey folks, she had complete other care kits in her classroom - extra meter, test strips, juices, snacks, etc. She also had random kits throughout the school. I was prepared, but I didn't do overkill, it's just not my style. Did I endanger her these past 3 years? Nah, don't think so. And if you think I did, don't even think of leaving a comment as such, cause you can just, well...

This year it looks different. Entering 4th grade and no one has morning snack at all in class. Grace also does not want to miss any class this year. So, plans change. I think they should evolve based on our kids.

Grace takes her care kit to her classroom every morning, not the nurse's office. It stays in class with her and Grace does her 10:30AM check on her own in the class. Now, the nurse still wants to know her BG at that time, so we asked Grace - would you like to text the nurse your BG number/dose, etc from your cell phone? Grace nixed that idea cause "CELL PHONES ARE NOT ALLOWED IN SCHOOL" - and she said it just like that to me, like, you big dummy Mommy. OK Grace, got it sister. So, we decided that Grace will, on a post-it, write her 10:30AM BG on a sheet, along with the dose - whether it be insulin or a juice/snack - and plop it on the teacher's desk. Guess what the teacher is gonna do with that? Glance at it, then there will be a classroom job each week - just like the other many jobs the students have, that rotates through the students, called 'runner' who's job it is is to run that paper to the nurse, one floor below them. Problem solved, everyone knows now and Grace doesn't have to leave class, or take the time to run it down.

At lunch, Grace takes her kit 3-4 minutes before the rest of the class and goes to the nurse's office to check and dose for lunch. She leaves her kit there throughout lunch and recess, which follows lunch. On the way back from recess, she picks it up and takes it back to class with her. (In class, she has a separate 'cubby' in the back of the room for her supplies) Before she leaves school for the day, she will do a BG check in the classroom to make sure she is OK to walk home. She's a walker, no busses here as we live a mile from school.

Grace's old stone school there, over 100 years old, isn't that cool?
She walks home from it each day, this is where I meet her.

Now, with all this checking in class, I know we need some ground rules. We need to know what to do with the number. So that everyone is on the same page, I crafted guidelines for numbers. Both the nurse and the teacher have them. Grace has one taped inside her kit, where she can see it as she tests. Hers states these guidelines as 'You' instead of referring to herself in the 3rd person, which would just be odd. Hers also says she is amazing and wonderful and that I love her at the end too.

Here it is:

Grace’s BG testing in the classroom

250 and above  Grace goes to the nurse with her diabetes kit

She is OK to walk there by herself.

80 ---- 249 Grace doses herself through her PDM pump remote.

61 ---- 79 Grace has a juice and rechecks her BG in 15 minutes.

60 and below  Grace has a juice immediately and sits down.

Nurse is called to come to the classroom.

She is NOT OK to walk to the nurse’s office.

So, now everyone knows what to do with the numbers. Grace's range is 80-150, with a target of 120. I let her dose herself up to 249 mark, because that is precisely what she would do in the nurse's office. Over 250, she will go down, get checked and see what's up.

I have given her leeway with her blood sugar numbers because she wants responsibility and I want to give it to her. This is how she is gonna be prepared for Middle School, where she will basically be on her own for her care. So, a little more responsibility now, a little more later in the year if Grace wants, a little more in 5th grade and we will get there.

What Some Would Call Lies - Go Now!

2011-08-25T18:55:00.000-04:00

The DOC.

No one says it better than Mike Lawson of the wonderfully fantastic blog What Some Would Call Lies.

He is everywhere. I mean it, the guy is everywhere.

And he is one of the awesome parts of the DOC.

He made a video about it and you should watch it now.

Seriously.

Go here and watch his video

This is the one that is about you

Overnight Basal Testing Joy

2011-08-22T10:20:00.001-04:00

We started using Apidra in Grace's OmniPod last week. I know some changes needed to happen, we were 'striking the spike' mightily, not getting high after eating, but we were also having some lows from overcorrecting the highs. But, as with all things, diabetic and otherwise, first things first. So, before I start adjusting things willy-nilly, I needed to get some basal testing in.

Overnight basal test last night. Trying to figure out what happens and why BGs shoot up around midnight - 2 am with this new Apidra. Something needs to be adjusted in her basals. So, I thought I would show you what I do to figure it all out.

She ate dinner and had her last bolus about 5 pm. That gave the go ahead for the overnight basal test to begin about 8 pm, and then be checked every 2 hours. I abide by Gary's rules for basal testing - stay within the 80-250 range and once she either dips low, below 80, or goes above 250, stop the test and treat. He has some great information about basal testing here and here. (Lots of info on it in his book Think Like A Pancreas too, which is coming out in a 2nd revised and updated edition in December 2011!)

Here's how it all went down last night:

8 pm - 106
10 pm - 95
12 am - 144
2 am - 213
9 am - woke up - 141

Got my information! She rose the greatest from 12 am - 2 am, but also had a rise from 10 pm - 12 am.
I write it all down and start my math to make sense of it.

8 pm to 10 pm = decrease of -11 (slight decrease, but I am looking for a 30 point jump up or down)
Keep the rate at this time the same

10 pm to 12 am = rise of +49 points (over the 30 point rise that is the parameter)
Raise her basal rate from 9 pm to 11 pm by .5

12 am to 2 am = rise of +69 points (whoa! way over the 30 point rise parameter)
Raise her basal rate from 11 pm to 1 am by .5 to begin with, then 1.0 if needed

So, then I go back to what her basal rates were when we conducted this test:

12 am - 2 am .50
2 am - 8 am .40
8 am - 10 pm .55
10 pm - 12 am .60

And I adjust accordingly:

12 am - 2 am increase to .55
2 am - 8 am keep at .40 (while the rising BG of 141 is above my liking, school will be starting next wk)
8 am - 11 pm keep at .55, but lengthen the time to 11 pm instead of 10 pm
11 pm - 12 am increase to .65

This is what it looks like in my log book. Hey, no judgements.

So, the real test is to try and test drive these new overnight basals. Then I will switch to a morning basal test, then a late afternoon/dinner one. Once I get these done, I will then look at I:C ratios once more and correction factors.

Just thought I would fill you in on how I do it. As always, I'm not a doctor, I don't play one on TV, I do know some doctors, but you should always consult yours or your kiddo's before you change anything.

Gary Scheiner's 'Diabetes Bites' newsletter

2011-08-18T19:07:00.002-04:00

Gary Scheiner is our CDE and he's just plain wonderful. His company, Integrated Diabetes Services, provides a whole host of services to people with diabetes, both Type 1 and Type 2. Gary himself has been a Type 1 diabetic for more than 25 years, he knows of what he speaks. He's also a pump guru, has worn every pump on the market (and some that never even got to the market or aren't yet on the market!) and speaks wisely about each one.

The greatest thing I have found about Gary is that he listens, problem solves and most of all, teaches. We all want, well, let me speak for myself here, I want a CDE who listens to where we are with diabetes - what we struggle with, what are the complications in our lives - and helps me solve it so that we can live better. And by better I mean healthier - physically and emotionally. Gary listens. He always asks great questions and by questioning he teaches. I always tell him, I want you to teach me, so that I, in turn, can teach Grace. That's where we are right now in our diabetes management. Our diabetes management will evolve over time, as Grace gets older. I envision a future where Grace may see Gary all by herself and when that day comes, that will be wonderful too.

There isn't a time when I am not with Gary that I don't learn something. It may be how to tweak a basal, how to bolus for rice, a trick about backing out of OmniPod screens and putting in numbers a different way, a new way of looking at numbers, a way of correcting a high and why it's high in the first place. He pours over numbers from Grace's OmniPod with me and as he does, he jots down numbers, draws graphs, looks at percents of highs and lows and suddenly, though it may take me some time at first, the light bulb goes on and I get a clearer picture of what we are doing. I start to understand how to change the rates, how to look at patterns, and how to adjust. And he waits for the light to come on, like a true teacher.

So, this blog post isn't only to rave about Gary, it's to share his monthly newsletter with all of you. I asked him first if that was OK and he gave the resounding 'Yes!' He also wanted me to tell all of you that if you would like to subscribe to his monthly newsletter, entitled 'Diabetes Bites,' that all you have to do is email Debbie at Integrated Diabetes at debbie@integrateddiabetes.com your email address.

Now, his newsletter comes in PDF format, but apparently Blogger doesn't host PDFs, so I had to convert to a Google Doc. (Do I sound like I know what I'm doing, cause I don't) When I converted, some of the formatting did not come through, but honest, the original newsletter is formatted wonderfully!

Here is the link to open the Google Doc of 'Diabetes Bites,' Gary's August 2011 newsletter.

https://docs.google.com/document/d/1MfKgAHhclQM-zRFvZ0ArBggeIVrPVfGwSGs-p35s9mI/edit?hl=en_US

Email debbie@integrateddiabetes.com your email address if you would like to receive Gary's monthly newsletter!

Guest Post at Diabetesaliciousness!

2011-08-16T08:57:00.000-04:00

It seems we are everywhere these days - gees!

I've guest posted today over at the uber-fabulous Kelly Kunik's Diabetesaliciousness blog.

Kelly is one super woman with Type 1, an amazing friend and such an inspiration in the DOC

(and in real life too!)

She has become a great friend to both Grace and I.

Head on over to her blog today. I guest posted while she is away in Canada.

And Grace guest posted too, some honest words from my gal.

The Land of Chronic

Grace's interview at Lauren's Hope Blog - Check her out!

2011-08-15T11:25:00.000-04:00

Grace is over at Lauren's Hope and their blog today.

She granted an interview to them about her diabetes.

They did a fabulous job putting her words to paper.

So, head on over and check out the interview! Click on the title below.

Thanks Lauren's Hope!

Juvenile Diabetes Through Grace's Eyes

Home from Camp!

2011-08-13T15:10:00.000-04:00

She's home. Picked her up on Friday and it was wonderful to see her sweet, punch-stained, grimy face along with her too-knotted-for-words hair. She looked tan and excited and well, like an improved Grace.

I have no words for how it changes her, diabetes camp. She sits among friends when I greet her. She falls back into place among them. And they are all like her, caring for, struggling with, living with diabetes.

It does a heart good to see your child among people who truly understand her.

We walked the same path as last year. I know why it gets to me, this walk up the path with 100+ other parents, when the camp director walks down to where the parents are gathered and announces "it's time to go hug your kids." All these parents, in the same damn boat as me, all feeling the same thing, all having taken a weeklong break from diabetes - but knowing their kids did not, of walking and coming to retrieve them, to bring them home and start the 24/7 care again.

We all do it. We all walk the path to get our kids. And we don't talk as we do, it's almost reverent.
All the parents just walk up the path. I have tears in my eyes as I do it each year.

This year was different, she was waiting in the dining hall with all the other campers. There was going to be an assembly and singing, then check-out. It was wonderful. The campers were joyous, hugging, singing and being silly, and responded en masse to songs and requests. They knew the inside joke. All ages - from the little littles of 8 to the biggest bigs of 13, counselors, CITs, directors, doctors, nutritionists.

And ok, I cried when they sang the song 'Waltzing with Bears.' You would have too! They were all hugging and swaying together, even the boys. And the sense of camaraderie, the sense of belonging, the sense of surviving-the-whole-week at camp together and living to tell the tale... it was palpable in the air I tell you. It gave me goosebumps and tears. I taped a little for you, to give you the same.

Grace tells me about yoga, the zipline, creek stomping, swimming, arts and crafts, campfires and s'mores and sing-a-longs. She tells tales of her new friends and bunking together in the cabin. She happens to mention 'Oh yeah Mom, I did my whole Pod site change myself on Tuesday!' and we high-five as if this is just a blip on the screen of growing up with diabetes. She tells me she helped another girl with being homesick and had a low one night after swimming and oh yes, did she tell me about boating and fishing for teeny-tiny fish in the lake?

You see, the diabetes just rolls on in there. It's just a part of everything else. But it's not the only thing all week at camp. And for that, I thank my blessings, that the experience of camp is not lost in the diabetes. That she remembers what it is to be a kid at camp and have diabetes along with her. I am grateful beyond measure for it, this gift of knowing my gal has this, this sense of herself, that she is one among many, that when it comes down to it, she stands among people in her community who understand her, in a way her family just cannot.

It lightens her, this week.
Some of the burden of being 'the only one' turns into being 'one among many.'

Grace's cabin mates, all Type 1, even the counselors

Diabetes Camp - Year #2

2011-08-09T18:05:00.000-04:00

Yes, it's that time of year again!
Drum roll please......

Diabetes Camp!

This is year number two for Grace. You can read about year numero uno here, and the pick up from camp here and her interview about camp here.

And it is now what it must be like from now on when we drive her to camp,
meeting up with old friends,
seeing the same counselors,
hugging those who you missed all year long,
remembering where things were and are in the camp.

This feeling must be wonderful for her. To be remembered. To be part of something larger than yourself. To finally feel like you are in your second home.

I see it on her face even as we walk up the path to check-in. Her feet are lighter. She is smiling and joyous.

We meet up with her DBFF (that's 'Diabetes Best Friend Forever' in case you were wondering) Lily. Yes, famous Lily from our meet-ups and JDRF Walk where we surprised her. Finally, a whole week with each other. It's heaven to both of them.

We check in. We hand over all her diabetes supplies. I complete forms about her basal rates, her I:C ratios, I tell them about -30% for swimming, I tell them that yes, she can carb count with the best of them.

I hand it all over.

And we get her settled into her bunk. And immediately she is at home.

The goodbyes this year are short and sweet. I tell her to have fun. I tell her to make new friends and remember to include all the new kids in your bunk, who may be here for the first time. I tell her to get the addresses and phone numbers of all the girls so she can write to them throughout the year.

And I kiss her and hug her and tell her, only once, how much I am going to miss her this week.

And I leave her to her second home.

Winner of a Lauren's Hope Bracelet is... Jessica!

2011-08-09T07:12:00.008-04:00

We have a winner!!!!

Commenter #3 as determined by www.random.org

(and I cannot seem to load the image from random.org, it keeps saying 'server rejected' - argh!)

Congratulations to Jessica of the blog
'Spunky Mandu' for being the 3rd commenter
and for winning a Lauren's Hope bracelet that you have chosen,
along with engraving, sizing and shipping!

Jessica chose the April showers for her daughter!

Jessica, please email me at starrashton@yahoo.com with your email address ASAP.

Thanks to everyone who entered!!!
Denise from My Sweet Bean and her Pod was the original winner, but declined to win this, as she just won a bracelet over at Karen's Bitter-Sweet blog! I think Denise should head to Vegas baby!
Thanks Denise, for sharing the wealth!

Now go check out what Lauren's Hope has to offer - wonderfully stylish and durable medical ID jewelry!

Lauren's Hope Medical ID Bracelet GIVEAWAY!

2011-08-03T08:12:00.001-04:00

It's a GIVEAWAY!

A spectacular Lauren's Hope bracelet giveaway!

Last day to enter is Monday - hurrry, hurry, hurry!!!!

My last post told you all about how wonderful I think Lauren's Hope medical ID jewelry is. And now, they were gracious enough to offer one of their medical ID bracelets for a giveaway to my readers!

And now,, here are some words from Lauren's Hope, about their medical ID jewelry:

When you or your child was diagnosed with diabetes, your life instantly changed forever. As your doctor explained medical procedures, medications, and other lifestyle adjustments, you may have been overwhelmed thinking about all the things that would have to change. One thing that your condition shouldn't affect, though, is your individualized sense of style! In the past, medical bracelets have been big, bulky, impersonal and unattractive - which meant a lot of people would opt not to wear them.

That’s why Lauren’s Hope was founded - to create medical alert jewelry that people would actually want to wear. This inspiration for the business came from a family friend of the company’s founders. As a teenager with diabetes, Lauren refused to wear medical ID jewelry because it was “ugly” and could “draw attention” to her illness. Lauren’s mother asked for a fashionable medical ID to keep her daughter safe, and the rest is history.

Today, Lauren’s Hope is still dedicated to making beautiful medical ID jewelry for people of all ages, with any condition, and with any sense of style! Whether you have a style-savvy teenager with diabetes or you feel self-conscious wearing your own chunky diabetes ID to a dinner party, we can help you find a fashionable alternative that will keep you safe. People with diabetes, severe food, drug, and insect allergies, heart conditions, asthma, autism, a visual or hearing impairment, epilepsy, or any chronic illness need to wear medical alert jewelry with that information engraved, as well as people who are on certain medications or are gastric bypass, lap band or organ transplant patients.

In the event of an emergency, your medical ID will do more than just make you look good - it can also save your life. Your medical ID bracelet should be custom engraved with a few important details so medical personnel will know how to treat you best. They will need to know your name, your medical condition(s), any allergies and important medications that you have, and emergency contact numbers.

The Rules:
1. Entries are one per person. Enter by leaving a comment on this post, with your first name and which bracelet you would like to win in your comment section. I know, I'm a simplistic kind of gal, but no extra entries for Tweeting, Facebooking or putting it up on your blog. That would be great to direct people over here to enter, but you, dear reader, are only getting one entry.
2. Enter until 12:00 AM EST on Monday, August 8th. That gives you all of Monday too!. Winners will be announced on Tuesday, August 9th, right here on this blog!
3. The winner will get their choice of ONE bracelet from Lauren's Hope. The bracelet includes the stainless steel tag, custom engraving and shipping! See, I told you they were nice at Lauren's Hope!

1. Item B90 - Mood Bead Medical ID Bracelet:

This is the Mood Bead medical ID bracelet. Don't like to keep your emotions all bottled up? Set them free with this psychedelic, color-changing mood bracelet! Featuring color changing mood beads surrounded by Swarovski crystals and sterling silver Bali beads, this medical ID bracelet will take you all the way back to the 70s. Attach your custom engraved medical ID tag to complete the look and show the world what you're feeling. The lobster clasps attach to your custom engraved medical ID tag. Slap on your medical ID bracelet and see what kind of mood you are in today!

2. Item C232 - Fiona Medical ID Bracelet:

This is the Fiona medical ID bracelet. Everyone loves stylish simplicity - especially when it comes to medical ID jewelry. If you want a style that is elegant-yet-modest, you can't go wrong with this triple strand medical ID bracelet. This sophisticated design features black tubing and gray Swarovski crystals to create a look that is subtly stunning. Simply attach your custom engraved medical ID tag with our signature lobster clasps for instant, trouble-free elegance.

3. Item S140 - April Showers Medical ID Bracelet:

This is our S140 April Showers Medical ID bracelet. They say April showers bring May flowers. Now you can have flowers anytime of the year. This darling medical ID bracelet features 3 clay flower shaped beads (colors may vary), surrounded by delicate, colorful beads in pinks, greens and blues with stainless steel lobster clasps. This design will make it feel like springtime all year long! Attach this sweet medical ID bracelet to your custom engraved medical ID tag and you'll be dancing in the rain!

4. Item A194 - Undercover Medical ID Bracelet:

This is the Undercover medical ID bracelet. If you are confident and strong, with a bit of an edge, this stainless steel medical ID bracelet is perfect for you. The unique crisscross pattern and durable stainless steel are things you might not want to keep under wraps! This stylish bracelet can hold up to 3 lines of your important medical information. Combine safety with style when you snap on this medical ID bracelet.

5. Item A148 - Into the Dark Medical ID Bracelet:

This is the Into the Dark medical ID bracelet. Are you a fan of glow in the dark beads? This unique medical ID bracelet features 2 lime green glowing beads. The sides of the bracelet feature black tubing and you can attach this medical ID bracelet to your custom engraved medical ID tag with lobster clasps.

Good luck everyone!

Enter now by commenting. One entry per person.

State which bracelet you would like to win.

Tell your friends!

Giveaway ends midnight on Monday, August 8th.

Winner announced here on Tuesday, August 9th!

Welcome ~ Lauren's Hope!

2011-07-30T18:43:00.003-04:00

Hi everyone! As you all may know, Grace wears a medical ID bracelet at all times. I mean all times. I truly believe that all our Type 1 children should have one thing they wear that identifies them as diabetic. It could save their life.

When Grace was first diagnosed in January 2009, I searched, from the hospital room, for a medical ID bracelet that looked like her. I thought, if it's not pretty and girly and has some pizzazz, she is not going to want to wear it. And then, what's the point, to fight about wearing it? No thanks. I wanted something she would look at and actually want to wear, and that it happened to be her medical ID too was just a bonus.

Well, back in 2009, there wasn't much online. I came upon medical ID bracelets that were all, well, they were stainless steel medical bracelets that looked every bit the man that they were made for. Until I stumbled, through an internet search that led me to Lauren's Hope. Immediately my eye was drawn to pink bangles, silver balls on light chains, rainbow colors and beads that sparkled. I knew I had found something that Grace would wear.

I wrote about our story of how we found Lauren's Hope here. It won their contest back in March of 2010. We are truly fans of what they make and what they do. Their owner, Denise, is one of the sweetest women you will meet, who truly cares about what she makes. Their bracelets and necklaces are sturdy, bright, beautiful and meet our kids needs. I cannot say enough about them.

You might not know that Lauren's Hope was named for a girl named Lauren who is a Type 1 diabetic! Read about the company and her story here.

Jenna, who works at Lauren's Hope, is my guest blogger today. Here is her take on medical IDs and their importance. Thanks for guest blogging Jenna!

There is nothing your kids can’t do. If he wants to be an astronaut, there’s not a doubt in your mind that he can become an astronaut. If she wants to be a princess, as far as you’re concerned, she already is one. And if he or she is fighting diabetes, you know for a fact your child has what it takes to overcome the condition with strength, bravery, and grace, and be an astronaut or a princess or whatever he or she wants to be.

  You’ve taught your kids that diabetes is nothing to be ashamed of, that they should wear their diabetes proudly, with poise - maybe in the form of a pump, a meter, a team t-shirt at an awareness walk. But as much as you’ve taught them to accept their condition, it’s still not acceptable to give up personal freedom and sense of style. It’s never easy to succumb to the necessity of one of those bold, chunky, ugly medical alert bracelets - a generic label on your child’s wrist that defines him or her as a disease rather than an individual. Let’s face it: the best, most effective way to convey their important diabetes information to medical personnel in an emergency is through medical identification jewelry.

But who says medical ID jewelry has to be so...medical? Your kids are brave. Bold. Fierce. They are individuals with personalities that are not easily suppressed - and they’ve proved it. You’ve taught them to never let diabetes determine what they can and cannot do - so why let it determine what they can and cannot wear?  

We are Lauren’s Hope , and we believe firmly in self-expression and that “I will beat this” attitude. We believe that that is what your kids’ medical ID jewelry should say. Not, “I have diabetes,” but “I am a strong, brave, remarkable kid and I will never let my diabetes stop me.”  

Lauren’s Hope has created a wide variety of kid-friendly medical alert bracelets and dog tag necklaces perfect for any child with any sense of individualized style. Options range from waterproof adjustable bands for active kids and trips to the pool to stylishly beaded bracelet strands that attach to your custom engraved medical ID tag.   

Whatever your kid’s sense of style, protect them and your peace of mind by arming them with a medical ID bracelet - you never know when your little astronaut or your little princess might need it.

  Medical identification is the quickest, most effective way to communicate important medical information to first responders in an emergency situation. It is essential that medical personnel are aware of your child’s diabetes, medications, allergies, and any other medical conditions even when your child is unable to speak for his or herself. Lauren’s Hope medical ID jewelry can speak for your child in a situation like this, allowing medical personnel to treat your child quickly and effectively.

Consult your doctor on what information they recommend you have engraved on your child’s diabetes ID. You may wish to engrave your child’s medical ID tag in the following format:  

Example Engraving:
FIRST AND LAST NAME
DIABETES TYPE I
INSULIN DEPENDENT
MOM 555-455-5566
DAD 555-455-5567

Thanks Jenna! This is good stuff folks. What Jenna stated above for the engraving is exactly what Grace has engraved on her bracelet. And just to make it even better, the kind folks at Lauren's Hope have provided me a bracelet to giveaway on this blog!

Stay tuned, in a couple days, a giveaway,

of a Lauren's Hope medical ID bracelet!

A1C Haunts

2011-07-28T20:25:00.000-04:00

7.1
That's Grace's latest A1C. As in today's endo appointment.
Her last A1C, in March of this year, a mere 4 months ago?
Was 6.4

What the hell happened and why do I feel like crap about it?
I know, I know, let me start the D Mama mantra of the following phrases...
It's not a grade!
You and Grace should be proud of that A1C!
It shouldn't be a reflection of self-worth or make you feel bad!
It just tells you what you need to do, it's just a guide and one piece of the puzzle.
You should see my son/daughters A1C, I would take 7.1 in a heartbeat!
A1Cs are just glimpses into what's going on with diabetes and your daughter.

I KNOW all of these things in my head, honest I do. I just don't feel them. Hell, I say those things to other D Mamas and Papas when they are disappointed in an A1C. Truthfully, it was like a kick in the gut. I wasn't even sure I could blog about it, how's that? I wasn't even sure I could list it in the sidebar of my blog, where I list all Grace's A1Cs since being diagnosed. I am super hard on myself. I see a goal and I am there. I see 7.0 and I say that I will get it below 7.0, just to make sure. Is anyone else feeling this? I work damn hard at this diabetes game. I'm a player - or should I be cool and say I'm - a - playa (now that statement makes me laugh out loud)
I learn, I do, I react, I change, I adjust.
Damn it, 7.1?

But I DO know why it's 7.1.
I was trying so hard to avoid lows, like the 29. Yeah, that appeared about a month ago, overzealously bolusing for pizza.

And Grace grew. Like a weed.
1 1/2 inches in the last three months and 4 3/4 inches in the last year alone. Yikes.

Growth spurt hormones leave Grace reeling with high blood sugars. I think the pre hormone game has begun around here and no matter if I bolus, adjusted basals and created temp basal increases, we had two good stretches of three weeks at a time of highs that I could not get down. Then like the wind that blew them into our diabetic life (nod to Meri for those words). The wind blew them out and we were back to stable BGs. Happened during two periods of time in the last 4 months.

So, the only way out of this is up, but not really, the only way out, for me, is to go back and revisit basals and come up with a solid plan for periods of growth in Grace's life. I need to know what to do when the highs hit from puberty and growth hormones and not-just-cause-we-SWAGed-that-meal-wrong and then won't go away.

I need to know what to do in the storm that it feels like to me. The highs when they hit Grace's BGs feel like a storm to me, I cannot even imagine what it feels like for her. I want to get out of the hormone storm and know how to get out. I want to be able to teach her how to get out too, safely and calmly. I'm not sure I know the secret to getting out, but you'll be hearing more from me when I learn what to do.

I know where I will start.
Basal test.
Meet and plan with Gary.
Log like hell.
Note when the high BG storms start to hit.
Cross my fingers.
And get on with it.
Oh, and stop feeling so damn bad about it.

Of Falling and Freedom

2011-07-22T14:20:00.000-04:00

Rrrrrrinnnnngggg, rrrriiiiinnnggg (that's my phone at home, isn't it cute?)

Hello?
Hi, is Grace there?
G, phone for you!
Oh hi M, uh, yeah, let me ask my Mom. Mom, can I go to a Splash Party tonight with M at her swim club? It's from 7-10 pm.

Uh, sure, yeah you can. I can pack your bag and all.
What I thought: M's mom is pretty savvy, had G for playdates, I can give her the cheat sheet for Grace for swimming, all should be ok with this...

Oh and she said it's a drop off splash party. M's mom is dropping her off and then picking her up about 9:30 PM.
Can I talk with her Mom?
Hey there J, yeah, tell me about it... (lots of adult supervision by the swim club, half her school belongs to this local club, there is a DJ, food, games and prizes, the Mom used to go to them when she was a little girl)
What I thought: GULP. Grace all alone to care for herself and her D? But surrounded by her friends who know her. Adults who don't know D at all. She will be devastated if she can't go and the only reason I give is that she can't because she has diabetes. That would suck. I can't tell her that. Cause thats just not true. But can I really let her go to this???

And before I give it one more second to suck the joy from the moment, I answer:
Absolutely, she can go.
Where the hell did that answer come from so fast I think. Then, you know what, I surrender to it. Of course she can go. I would have let my other kids go. She's responsible. She's ready.

Grace jumps. For joy that is. And hugs my legs.

We start to plan. Decrease your basal for swimming by how much Grace?
-30% Mom, for an hour at a time
What are you going to do if you feel the slightest bit low?
Get out of the pool. Tell a friend and an adult. Test and drink one juice if I am 50 or above, and drink two juices if I am below 50. Wait 15 minutes and recheck.
What if your Pod falls off?
Call you on my cell phone and you will come down and help me change it. Disconnect that Pod and wait for you.
You are right, I am only 10 minutes away, I will come and help you.
And Grace, you have to call me every hour, with your number, ok? It means you will call me at 8 pm and 9 pm. OK?
Ok, I can do that. Can we make it 8-8:15 and 9-9:15?
Ok, I'm willing to do that.

8 PM phone call
Hi Mom! I'm 88. I forgot to decrease my basal when I started swimming, so I just did that now.
Ok hon, why don't you have a juice too, before you jump back in the pool?
Ok. I went off the diving board!
Cool, what else you doing?
Hanging out with my friends, half of the school is here. I swam in the deep end. They are playing a game right now and kids are out of the pool, but I didn't feel like playing the game.
Ok hon, have fun.
Bye Mom, talk to you at 9!

9:10 PM phone call
Hi, is this Grace's mom? Yeah, Grace fell at the pool just now. She's pretty scraped up, but doing ok. She's really crying though and would like you to come and pick her up. We've cleaned the scrapes the best we could, but she wants to come home.
Hubby races in the car to the pool, about 8 minutes away.

Grace pulls up at home, sobbing. Out hobbles a little girl who looks like she was running the bases and slid into home - on her toe, right knee, right side of her tummy and right elbow. 'Tore up' isn't even the words to describe it. You know when concrete/cement walkways around a pool meet skin? Yeah, that.

We sit her on the kitchen counter and amidst the sobs, hear her story of how she started to run and then remembered she wasn't supposed to run around the pool and went to slow down, only to trip and fall on the cement. The lifeguards quickly helped her. The concession stand woman helped her. Her friends surrounded her and helped her.

And my little girl says 'It was all going so well until this happened.'

And I start to ramble about 'you should see how many times Mom and Dad have fallen around pools and on cement and it could happen to anyone, everyone has scars on their legs of times they have fallen, it could have happened anywhere and aren't you lucky it happened at close to 9 PM and not close to 7 PM when you first arrived' and she starts to calm down, among the cleaning and the Neosporin-ing of her 5 scrapes.

And then, as the night closes in and when we are sitting on her bed together, re-hashing it all, sitting in the cool air conditioning, in a Mommy-fashioned nightshirt and underwear that lets all the scrapes breath and be free, she leans close to me and says..

'Thanks for letting me go tonight Mom. It was great freedom.'

Bag Of My Dreams

2011-07-20T19:41:00.002-04:00

It really is the simple things that can give us D-Mamas the greatest pleasures, isn't it? I mean, one great D bag and you want to shout it from the rooftops that you have found something that holds everything you need. Well, I found it.

Grace pumps with the OmniPod and you can read about my adverse reactions to carrying the OmniPod case around. I found a new case that I love. Grace actually said to me, after we got it in the mail, 'I really want to take my kit around everywhere now!' and she knows of what she speaks, cause she came to really dislike that black bag of doom that was the OmniPod carrying case. It wasn't her. And frankly, when a little girl has Type 1 diabetes, we are looking for any bling we can get or any sort of happy we can get out of a kit.

I said it in yesterday's post about the black case and I'll say it again:

Here's where the incredible Laura of Houston We Have A Problem blog came in. She posted a video response to 'Submit Your Kit' vlog and I saw a bag that held everything in her video! You can see her video here. Laura even lost her precious diabetes bag and got it back! (You can read about that experience here.) She posted later about her bag, it was a cosmetic case from Murval. I wanted to weep. It had pockets! And bags that zippered! And more than one area to contain things! And it looked like the PDM fit into the pocket with it's gel skin on.

Voila! Here it is, our new OmniPod carrying case, a Murval cosmetic bag:

Look at that - something girly!!!

Look! Places for d-supplies!
And it's like a 3 ring notebook with it's two attached pouches!

Yep, its fits everything. Everything we need for complete site changes. Everything for emergencies. Everything. Including glucagon and I can zip it all closed! It has pouches, pockets and two incredibly large zippered pouches which attach to the center bar, just like a 3-ring notebook. And it's easily cleanable (is that a word? it is now) on the outside, with it's slick, waterproof cover. Girl, it's actually COOL.

It fits the OmniPod PDM on the inner pockets, along with her lancing device, a bottle of insulin and her strips. Just like that. And it's fits them all easily, no squeezing in clear plastic bands, no velcro straps. And we actually have two more pockets for extra vials of strips!

OMG. It fits. It's accessible.
And extra pockets too!

The two attached pouches, which each zipper closed and are easily removable if you don't want them in there, or just need one pouch, hold all sorts of everything. As I said before, Grace needs to be able to have everything she needs for a site change at all times. She has it now.

The zippered shiny sided pouch contains a new Pod, SkinTac, TacAway, HypoFix and alcohol pads. It also contains two extra batteries for her PDM. It all fits in and there is room to spare! She now knows the shiny can't-see-through-it-pouch contains all that she needs for a complete site change. It brings tears to my eyes. It's NOT in my purse any more!

Everything for a complete site change.

The other, mesh see-through pouch contains things she might need in an emergency, things that she needs to know she has at all times. Glucose tabs, needles, extra lancets and an extra lancing device, should she ever lose or drop or need another one. Easy peasy, see right there what we have.

Mesh pouch with glucose tabs, needles, lancets and extra lancing device.

Oh and here's a side pouch that fits a giant glucagon case in it. Totally hidden, but right there.

Pocket under the word 'Murval' holds a glucagon case.

Close the entire case and here it is. Zips close like a breeze, no squeezing it shut, no trying to cram it all in. And it's fits into my purse or into her backpack. I've attached one of those little pill cases from CVS, that's for our used test strips. It comes in handy as I hate to leave used test strips anywhere we go and I can never find a trash can. Voila, problem solved, into the red screw lid pill case they go. I empty it every once in a while :0)

I can thank Laura for the recommendation. I also found that the eBay seller that I bought this from also has some for sale for $8.99. You can go here and link up to her site. She has more than 10 available as of this blog posting.

Yeah - a bag that works for us! This D-Mama is one happy Mama.

OmniPod Case review (oh and it's not a good one)

2011-07-20T11:07:00.000-04:00

Grace is on the OmniPod insulin pump. For us, for her, it's wonderful. She loves the fact that its tubeless, loves the auto-insertion and loves that she can rotate it all over her body - arms, thighs, belly and bottom. I cannot say enough good things about it. Love the pump, got it?

Hate the carrying case that comes with it. Absolutely, positively, cannot stand it.

Here, let me count the ways:

1. It's black. Totally pitch black. Really good for keeping that insulin cool, right? Yeah, cause there wouldn't even be a place for an ice pack if I would need one. Black says yuck to me. It says "We couldn't think of a color palette to give people a choice of, so everyone gets black."

For little girls who are diabetic, I'll bet not one of them would choose black as their color. Grace doesn't. She has never once chosen black in anything. She wants bright, glitter, pizzazz, and some sparkles. Or at least a rockin' pink or purple. But black, no thanks.

Give us a choice OmniPod! Make a range of color cases. I'll gladly rock the OmniPod logo on the front of a bag that kicks color and is well, more functional, as you will see in the following points...

2. It's too small! It doesn't fit everything a person with diabetes needs to carry! Sure, little battery holder straps are cute, but the one tiny zippered pocket only fits a little tube of glucose tabs, some lancets, a strip or two of HypaFix tape, some SkinTac and TacAway, and a needle or two. And that's me jamming them into the mesh pocket.

There is no room for extra glucose tabs, or some liquid glucose, medical bracelet, extra test strips, extra batteries, extra lancing devices, more tape, more alcohol pads, more SkinTac or TacAway. I have to be limited as to what it can hold and be decisive about what goes into this pocket.

The back of the case has another mesh pocket. It's supposed to hold an extra Pod. Good luck on that folks. I can cram the extra Pod into the pocket and I can close the velcro tab, but it takes some doing, because everything gets caught in the mesh. Then, the case becomes so bulky and unwieldy, with an extra Pod attached to it's back, that it's hard to hold in my hand. I tend to carry the extra Pod separate from the case in my purse, but that's not so handy when Dad takes Grace somewhere is it? Then the extra Pod gets forgotten and we are screwed.

PDM fits into clear strap band with no gel skin on.

PDM with gel skin on it does NOT fit into the clear strap band.

3. The PDM with the gel skin on does NOT fit into the clear see-through tab pocket! Did anyone test this case out before they manufactured it? I think not, because someone would need to TRY to fit the PDM (remote controller to the Pod) into the clear strap and see that it DOESN'T FIT. Not even a little bit. So, when I open her case, I have to be careful to open it so the PDM doesn't fall crashing to the ground. Here's where the gel skin saves its life. It is such poor design on so many levels when it comes to this. Here's a great gel-skin that pretties up and protects the PDM, but no, don't try to actually fit it into the case. It's one of the giant errors in design.

So, OmniPod bag that I have carried since her pumping start in April 2010, I have to say goodbye. It's been fun, but not fun enough that I can continue to put up with all this nonsense. Now that Grace can change her pump site herself, she needs to carry everything with her should the need arise for her to do just that. She needs a bag that holds everything and then some, just for emergency and frankly, any day, any hour of the week, can be an emergency.

Here's where the incredible Laura of Houston We Have A Problem blog came in. She posted a video response to 'Submit Your Kit' vlog and I saw a bag that held everything in her video! You can see her video here. Laura even lost her precious diabetes bag and got it back! (You can read about that experience here.) She posted later about her bag, it was a cosmetic case from Murval. I wanted to weep. It had pockets! And bags that zippered! And more than one area to contain things! And it looked like the PDM fit into the pocket with it's gel skin on.

And so I got one. On eBay. For $6.99.
And that will be my next blog post. A diabetes supply bag that works for us!
Stay tuned...

Happy 9th Grace!

2011-07-15T07:14:00.000-04:00

Happy 9th Birthday Grace!

You are an amazing kid.

You are strong, resilient, funny and kind.

You amaze me daily with your bravery and your fortitude.

You make us laugh and put a smile on our faces, just because you are you.

Happy Birthday sweet girl!

I hear 9 years old is the best age to be!

D Meet-up and FFL

2011-07-11T19:52:00.000-04:00

While we were on vacation, I called the fabulous Kelly of Diabetesaliciousness fame, to see if she wanted to hop on over a town or two and meet up with us. Of course she said yes, cause she is totally fabulous like that!

We met in our traditional spot in town. We walked the shops. Grace had her nails painted. She showed us American Girl doll accessories she wants. We watched a magician perform as it was 'Family Thursday' on the Avenue. It was HOT. Like surface-of-the-sun hot.

We got hungry. Well, Grace got hungry and we followed suit. Found a great A/C lunch place. Menus were fussed over, choices about breakfast-for-lunch were made and we had a grand old time catching up face to face, as opposed to the emails and text messages we send each other.

Kelly helps Grace in so many ways.
She lets her see a woman who is living her life with diabetes.
And there are conversations between them that I cannot help with, that they have with each other.

I can tell Grace that she will be fine, that she will grown into a strong woman, a strong mother and grandmother, but it's Kelly who brings it home to her.

It's Kelly pulling out her pump and testing and telling Grace she's a little high today and Grace nodding in agreement and telling her that whew, she had a few high days this past week too.

It's Grace telling Kelly that she hates this diabetes and Kelly nods, and Kelly tells her that it's not the falling down that's the problem, it's the staying down.

It's Grace telling Kelly that Momma has a saying of 'Just Do It' when things get bad and when she doesn't think she can do it one more day. And Kelly says she has 'Just Do It' days too.

It's Grace telling Kelly that she told her Momma just last week that diabetes was a good thing in some ways, that she would have never met her, never gone to diabetes camp and never met her D friends, if she didn't have diabetes. And Kelly smiling at that.

It's a million of these things that happen when we are together, that I cannot replicate as a non-PWD, that make me love Kelly. She gives me strength, she gives Grace strength and she lets Grace feel communion with another soul who truly does 'get it.'

I knew that Kelly was missing Friends for Life, the Children with Diabetes conference in Orlando, Florida this week. I knew she missed the communion that she gets by going there. I know she missed her friends.

I also know that when PWDs attend Friends for Life, they wear green wristbands to identify themselves as people with diabetes. It's a badge of honor among them and a show of solidarity. I hear people keep them on long after the conference is done.

So I bought a little treat for both Kelly and Grace, to show that they are one, and indeed, friends for life.

Scenes from a vacation

2011-07-10T20:17:00.000-04:00

Ahhh, vacation at the beach. Simply 90 minutes from our house, but a world away.

Here are some glimpses into our week. It was glorious.

Fireworks on the beach on the 4th of July!

Boogie boarding. That Pod on her left leg survived 5 hours in the ocean.
It was a good Pod, I wanted to have it bronzed.

Sunset dolphin watching cruise around Cape May, NJ.
We spotted lots of dolphins and one beautiful sunset.

Bike riding on the Boardwalk every morning.
It's tradition.

One killer wave and BAM the Pod came loose.
So, Pod change on the beach. We made a lot of trash.

All week long, this guy in the light blue trunks was at our beach.
Grace swore he looked EXACTLY like Nick Jonas!
I had her pose in front of him so I could get her picture with the pretend Nick.

Hot chocolate treat for our breakfast out.
I SWAG-ed that baby at 30 grams.

Sand with your sisters.
Good times.

A D-meetup with our favorite gal, Kelly.
More on this to come....

What would a vacation be without some rides to make you scream?

The beach restores our souls.
Somehow, you realize how little you really are.

The Spirit of 76!

2011-07-04T16:11:00.000-04:00

Happy 4th of July everyone!

It seems that even blood sugars are in the spirit today!

Thankful.

2011-07-03T08:09:00.000-04:00

Grace went to be at 88. All was well. Decreased basals a wee bit through a temp basal for a few hours and she should sail steady until the 2 am check.
It's the first day of vacation and there has been A LOT of walking and rides and well, activity.
I should know better, really.
And something in the back of brain DID know better and came to the forefront to save her.

I got to bed myself about 11 pm.
And I woke like a shot at 12:30 AM.
Like a shot I tell you.
From sound asleep to wide awake eyes.
And my brain told me to go check her. I could HEAR it in my head, is that odd?

I walked down the longer than normal hallway, and checked her at 12:30 AM.

48

Two juices and a decreased basal later, now I was wide awake.
And thankful for the little protective voice, that knew, somehow it just KNEW to wake me.
I don't depend on it.
I don't ask for it.
It's only ever happened once before to me.
But I sure am glad, that somehow, it's there, in my head.
And that it saved my child.

Gourmet Dinner for Diabetes and We're All Invited!!!

2011-06-27T16:14:00.000-04:00

This appeared in The Philadelphia Inquirer yesterday and today. It definitely caught my eye.

You will get a gourmet dinner ( I wonder if they will give a carb count?!!!!!)
Then you can listen to dear old Dr. Rooks (hey, rhymes with Crooks!) talk about how you too can know the secrets behind how to literally reverse your diabetes, reduce your needs and of course, your dependence (kind of a cutting and little demeaning, imagine having to DEPEND on something!) and realize your true potential of becoming a non-diabetic. All the possibilities in one little seminar!

Dr. Rooks is at the Path Integrative Health Center. She is the sole doctor there. She labels herself the 'Senior Clinic Director' but with no other doctor staff working with you, I guess you can label yourself anything you want. Hey, I'm President! How about them apples!

I am a fan of integrative medicine, I believe it all works together, mind, body and spirit. I also believe there are natural ways of healing various and sundry illnesses. I also believe in science.

It seems Dr. Heather Rooks, D.C. (Doctor of Chiropractic) wants to reverse diabetes in only the Type 2s. Darn it! I'm a little more than put off by her declarations that somehow, Type 2s who do use medications are failures, for lack of a better word. She does want all the Type 2s to 'overcome their condition naturally!' Must be the hidden secrets she plans to reveal at the dinner.

Check out her opinions of the difference between Type 1 diabetes and Type 2 diabetes. She has a video segment on her website.

I disagree with her use of the word 'congenital' and just to make sure I really understood the word, I looked it up. Here it is:

–adjective

of or pertaining to a condition present at birth, whether inherited or caused by the environment, especially the uterine environment.

I understand that Grace was pre-destined to acquire Type 1. There was something in her genetics that led us to age 6, being diagnosed with Type 1. There was something that triggered it into action. Something that literally tipped us into Type 1. Or broke the camel's back, if you like that saying more. But was she born with Type 1? No. Some children are. She was born with the predisposition to it, but congenital? Hmmm... I do disagree with the use of the word 'congenital' when talking about the difference between Type 1 and Type 2. I have never heard anyone, including doctors of all kinds, define the difference using that word. It's striking, her use of that word. Almost like, those Type 1s, they were born with it, nothing they could do about it, whereas you, you Type 2s, you can OVERCOME your condition and achieve being non-diabetic. The whole language of it doesn't sit well with me.

My favorite video she has on her website, however, is the one where she explains 'What is Diabetes?' and you have to watch her expression, cause I think she's a bit unsure of herself as she comes to the end, when she states the person is not 'modulating the hormone, insulin, correctly.' It's about :59 to 1:01 on the video. You almost see the thought bubble of 'What did I just say? Am I sure?' It gave me a chuckle.

Anyway, friends, looks like we are invited to a gourmet dinner, but alas, I think I shall sit this one out.

Virtual 5K - We Did It!

2011-06-25T14:49:00.000-04:00

We did it!

Grace and I walked (ok, she ran a little bit, but I definitely did not run) the Virtual 5K!

We started out with a little message to everyone...

It's for all of YOU - the Type 1s out there.

We walked/ran for you.

Here is a short, condensed video version of our walk/run.

The beginning, middle and end.

Thank you Tara and Reyna for a wonderful idea!

Here's hoping you raised a lot of money for JDRF!

You Can Do This Project

2011-06-17T21:16:00.000-04:00

What a wonderful idea that Kim Vlasnik over at the blog Texting My Pancreas had!
The You Can Do This Project.
Letting others know what diabetes is really like and letting them also know that they have the strength to do this.
There are so many great videos out there. Check out her blog, where she has them all listed.

And here's my contribution. Me, in all my glory. Oh dear Lord...

I also thought that the Deaf community might need some inspiration, so I recorded a 'You Can Do This' for any Deaf people who use ASL (American Sign Language) in the DOC.

No subtitles folks, you gotta know ASL to see what I say:

D-Mom here!

2011-06-06T11:23:00.000-04:00

I'm honored to be the featured D-Mom over at Leighann's DMom Blog.
Thanks Leighann!

Click on over and hear some of our story.

Virtual 5K - Let's GO!

2011-06-05T08:04:00.001-04:00

Reyna's sister, Tara Tosta, is a runner. No, make that she is a RUNNER. Man, she is serious about this running business. And she had a great idea about a virtual 5K to raise money for JDRF!

A virtual 5K!!!! Like I could walk the 5K and it would still count? No one would be around to see me run, that would be OK? Oh, I am SO in.

I am not a runner. No, make that PENNY is NOT a RUNNER. I am not at all serious about running.
Please do not make me run.

I can walk though. I am a walker! I am going to virtually kick ass on walking this 5K!
Grace and I just registered.
Maybe she will even sing a song for you as we walk our way to the 5K - you never know!

So, now what are you waiting for? Go and register NOW!

Here is the information from Mommysarunner blog (Reyna's sister, Tara):

Race to Cure Diabetes (Virtual 5K, 3.1 miles = 5K)

To enter go to this JDRF page and donate $10. All entry fees are $10. If you donate a chunk of money and it is for multiple folks all you need to do is let me know who is registered under your donation. I will keep an updated log of all registrants posted on my blog. If you do not show up, let me know and I will get it fixed. If Blogger gives you issues with commenting just email me at: mommysarunner@hotmail.com.

Basics
1. Donate $10 you are registered for the race
2. The race is from June 24-June27th (all finishers need to report finish/time by midnight on the 27th to be entered into the raffles). Any time during that period you can get out there and run or walk your 5k. Once you are finished, post your name and time (time not required) and if you send me a picture you get one extra entry into the raffle. Pictures will be on the blog so if you are not ok with me posting it then don't send it.
3. Beginning on Saturday June 25th there will be a raffle once a day for all finishers of the 5K, so the earlier you get your 5k done the more chances you have to win one of our awesome prizes (and yes more companies have stepped up)
4. I will try and get all prizes raffled off by the 30th but, we may have to go a few extra days depending on the number of entrants and number of prizes.

Once the 5K begins there will be a list posted each day of all of the finishers with a number next to your name. That number is simply your number for the raffle. It doesn't mean anything else.

The list of companies and folks who have donated continues to grow: Liz Day is making an awesome necklace, Cindy Roering is making scarf, Felt Creations is making a Felt Creation, Fuzzy Feet is donating, RoadID is donating, Head Sweats has sent a hat and visor, Sweatybands has sent a head band, RazzyRoo is sending headbands, Injinji is sending a pair of socks, and Tallygear is making multiple Sport Belts for the Race. I have emails out to multiple other companies but would love more ideas so, let me know if you have thoughts on who might donate so we can make the raffle so big people can't resist.

Lets show Type 1 Diabetes who is boss. There has to be some answers out there for why this disease happens and how to cure it. There just has to be a better way so, lets get the 10 lb heads the money they need to do the research and find a cure/solution.

Grace SingAlong Vlog

2011-06-02T06:12:00.001-04:00

So, Grace asked me for a Diet Coke (a treat around here) and said she was gonna do a 'project' and asked if could she use my computer in the basement. (And yes, the basement is a mess, it's like Toys R Us has a branch location here, and they exploded in my basement, oh and the books, yes, we love to read.)

"Sure" I said, I'm all for 'projects.'

This is what I found on Photo Booth on my Mac two days ago. It is the very essence of her.
Subtitles courtesy of me.
I couldn't resist.

And so, without further adieu, here's Grace's 'project.'
Hope this puts a smile on your face today.

Starlight in the City

2011-05-28T15:51:00.010-04:00

Starlight Children's Foundation...

Starlight MidAtlantic helps seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities.

We belong to the MidAtlantic Chapter of the Starlight Foundation and so far we have attended the circus when it came to town in February. We had a blast.

They just hosted an event today at Franklin Square in the city (Philadelphia). It was wonderful. You see, in the almost-the-same-temperature-as-hell city during the summer, Franklin Square is an oasis of greenery and frankly, peace. Yes, it sits next to the Ben Franklin Bridge and everyone heading to NJ (and getting lost around the circle that ends the bridge, with the big lightning bolt and key statue), but it's a little piece of quiet amidst the grind of the city.

I dearly love my city. Everything about it. Every single time I come home from NJ across the bridge, or up I-95 from DE or someplace that I have been, seeing my city from the driver's seat of a car or from the window of an airplane, my heart skips a beat. Honest it does. I love it.

We started with mini-golf, among little replicas of Philadelphia all around. My kids loved walking among all their favorite things, brought down to their size.

Little ole Independence Hall and the Liberty Bell.

Philadelphia Museum of Art. They all think they are Rocky.

Boathouse Row, where our annual Philly JDRF Walk is.
I laughed at the little rowers in their boats.

We rode the carousel. Grace was on an eagle.

She was transformed into a princess.

And of course, you know what they had to eat at the Starlight event, don't you? Pizza of course.

That's a 40g slice with a +30% temp basal increase you are looking at.
Started at 97, ended at 114. Take that pizza!

A gyroscope metal play thing on the playground. Left her dizzy but oh it was fun to spin!

This would make me puke. Her, not so much.

A great event, and you know why? It's all about coming together and realizing that among all this medical talk and medical visits and thrashing around in the world of diabetes, that there are others out there with children who are sick too. And they all don't have diabetes. And none of us is 'worse off' than the other. We all have our challenges. And we smile at each other, and we ride the carousel together, and we wink and we nod and generally, we are understood. There is beauty in that.

And there is also love. Thank you Starlight.

JDRF Walk - Road Trip and DMeet-Up!

2011-05-23T06:19:00.000-04:00

The countdown whiteboard that I looked at for the last 3 weeks:

Why? Because we just engineered the biggest secret between her and her friend from diabetes camp!

You see, Lily lives about 3 hours away in our state. She came to visit us in February and the girls had a blast together. They had missed each other from camp and it was delightful to see them together again. So, about a month ago, when I learned that Lily's JDRF Walk was this past Saturday, well, it got me thinking that 3 hours certainly wasn't that far away and maybe we could SURPRISE Lily by coming to her Walk!

We did it! We drove up early Saturday morning and surprised Lily, who had NO CLUE that Grace was coming. You should have seen her face!

The JDRF Walk was a great event, with teams walking and money raised. Lily's mom was on the committee that did a fantastic job arranging raffles, silent auctions, teams, shirts, entertainment for the kids, lunch and generally making it a wonderful event.

It was at a baseball stadium, which was even cooler cause we got to walk

around the inner track of the field!

We walked, all of us, for a cure.

'Lily and Friends' Team

Hand in hand.

The girls caught up with each other's lives, ate, gabbed and compared Pod sites. Yes they did.

The visit would not be complete without a swim in the hotel pool, and pretending they are mermaids with their fake tail (see Grace's legs, yep, a tail) which is now tradition.

They were awed when a little girl in the pool spotted them and yelled 'Mermaids!!!!'

And a night spent at your friend's house, complete with bonfire and marshmallows

and s'mores (which was SWAG-ed at 30 g carbs each),

mopeds and a hammock in which to lay together.

A night at the hotel, sleeping together in the same bed,

with the same bears (who are each named for your BFF)

Of course, a night time check at 2 am for each, laid out in advance.

Thank goodness for different colored covers for Pod PDM's!

Breakfast together. Bacon lovers unite!

Sad faces when it's time to leave each other.

Which then, of course, totally cracks them up.

Until August and until Camp again, a hug and a goodbye.

There is nothing like the love of a true friend.

Someone who knows you and loves you, well, for being YOU.

Nothing at all.

Thank you Lily and Grace.

Road trip!

2011-05-20T06:14:00.000-04:00

You got that right - we re outta here on a road trip!

We got pumps, insulin, juices, clothes, swimsuits (somehow it always involves swimsuits) packed.

It might involve a surprise.

It might involve a certain little girl who went to Diabetes Camp with Grace.

It might involve a JDRF Walk.

Details on Monday!

Enjoy your weekend everyone!

What I've learned - DBlog Week

2011-05-15T07:02:00.000-04:00

According to Vedanta, there are only two symptoms of enlightenment, just two indications that a transformation is taking place within you toward a higher consciousness. The first symptom is that you stop worrying. Things don’t bother you anymore. You become light hearted and full of joy. The second symptom is that you encounter more and more meaningful coincidences in your life, more and more synchronicities. And this accelerates to the point where you actually experience the miraculous.
~Deepak Chopra

What I've learned during this Diabetes Blog Week...

* We are quite a bunch of PWDs, CWDs, caretakers, mamas, papas and others, all touched by diabetes and all doing it differently. But we are all here, doing the D day after day. I am amazed and awed by all of you.

* When I am feeling down about Grace having diabetes, I think of all of you out there, standing in hallways in the middle of the night waiting for a low to rise, changing pump sites, bolusing highs with no end in sight, and counting and measuring food. And believe it or not, it gets me through. Time after time.

* We have the best kids on the planet. D kids are the cutest and the most courageous, hands down.

* We all having funny moments that leave me laughing and give humor to such a dark disease at times.

* We have the best support network on this www. Honest, we do.

* We are each different in our care of our kiddos, but it doesn't mean that one does it 'better' than the other. I have something to learn from each of you out there about how I can do it better, for myself and for Grace. Thank you for that.

* We collectively, could move mountains. We ought to try some day.

* We have a wonderful voice together. I'll bet if we all got together in a choir we would rock.

* We honestly love and like each other. I do DOC, I love you. I like you too, I really really like you.

* We will all get through this, together.

In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.

Albert Schweitzer

Life with D in pictures - DBlog Week

2011-05-14T10:24:00.000-04:00

Life with diabetes, is just, well, life.

Happy Saturday everyone!

Awesomest Thing with D - DBlog Week

2011-05-13T16:49:00.000-04:00

The most awesome thing Grace has done since being diagnosed with diabetes?

That's easy....

She went to diabetes camp.

For a whole week.

Overnight.

And she was 8!

I wrote about our experience with Camp Victory, run by Setebaid Services, here in PA. I wrote about the pros and cons of Grace going to Camp. You can read about our drop off here. And then the grand finale, the pick up from camp, that's here.

You can read Grace's own thoughts about her week at camp here.

Camp has stayed with Grace since she went last summer. There isn't one week that goes by in this house that diabetes camp is not somehow mentioned or thought about. It's amazing the impact the week had on her. She loved every stinkin' minute of it. There was not one 'con' in her eyes. Even when she had to sit out of swimming for 15 minutes because of a low, not one regret. You know why? Cause on other days, she saw her friends sit out while they were low. And she knew it. She felt a giant sense of community and for once, she was not different. Not in the least. I think that's enlightening on so many levels.

She has great friends from camp too. Some we have met-up with since camp, the bond is that strong, even at 8 years old. I wrote about one of her friends, Lily and their meet up a few months back. It was lovely for so many reasons.

The pictures from camp are posted on her bedroom door. I found her once, a few weeks, ago, touching the picture and pointing to all her bunkmates. She knew each of their names. She knew if they had pumps or shots. She knew what they liked to eat and what they liked to play. She told me about lows and highs and swimming and campfires and funky Olympic games and arts and crafts and well, all of it. Just like that. One picture and it all came flooding back to her.

I knew sending her to camp would be good. I didn't know if she would miss me and our family. She did and that was normal. She survived a week in other people's care and that was both wonderful for her and for us. I slept for a full week. I regrouped. I didn't think about diabetes much for that week. If I am being honest, it felt really good. I missed her, but the week 'off duty' did wonders for my psyche, my body and my soul.

What camp did for Grace was profound, and it's effects linger on to this day and beyond. It gave her community. It gave her a sense that she is not alone in this world. It gave her confidence to try new things and to become more self-reliant. It gave her a sense of her future as a young woman with diabetes. It saved her from the aloneness that the D brings with it.

And that, my friend, is totally awesome.

D-blooper - DBlog Week

2011-05-11T06:18:00.000-04:00

This is a re-post from May 2010, it was too good to pass up.
Oh and all you guys and the gals in the DOC are making it hard to write - there are TOO many great Dblogs to read!!! It might take me weeks to catch up! Great stuff out there folks - loving it!

Beeeeeeeeeeeeeeeeeeeeeeep!
Beeeeeeeeeeeeeeeeeeeeeeep!
Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep!

"Grace, do you hear that?"

"What Mom, oh that, yeah, I hear that. It's some kind of high sound, like squealing."

"WHERE is it coming from?"

I walk around the kitchen. Grace walks around the kitchen. We enlist her sisters to help walk around the kitchen. I unplug the toaster. I peek inside the microwave. I unplug the kitchen clock. Nothing. The beeeeeeeep continues. The sound gets louder in some areas and softer in some areas. I cannot for the life of me figure out where this high pitched squeal is coming from. I check the obvious places - the oven, the refrigerator, my watch. I look at her old meters on the shelf, pulling my ear in close. Nothing. The sound comes and goes as we both walk around the kitchen.

Grace leaves to sit on the couch in the living room.

"G, the sound is gone from the kitchen now."

"It's out here Mom, the sound is out here now. I still hear it."

"What do you mean G?"

I go out to look. I get closer to her. I lean into her and the Pod on her upper right thigh.
It is squealing.

"MOM, it's ME!!!!"

Letter to Grace - DBlog Week

2011-05-10T06:03:00.001-04:00

Dear Grace,

Hello sweetie, it's Mommy. As I write this letter, you are 8 years old. You have had diabetes for a little over two years. Does it seem longer to you? It seems like forever to me, if I am being honest. It feels like you being six was a long, long, long time ago. I want you to know that I hold your memories of being a baby, a toddler, a preschooler and a kindergartener, before diabetes. You might not remember your life before diabetes entered it, but I do and I will, always.

I am writing this letter to you now, as you are 8, but I don't expect you to read it until you are much older. There are parts in here that you may not understand yet, but I want you to know that I thought them while you were young.

I want to tell you how ultimately brave you are, having diabetes at such a young age. I don't think I would have been nearly as courageous and honest and brave as you. I admire you so deeply for continuing to be who you are, throughout all of this. You face challenges with humor that leaves me rolling. You are honest beyond belief and I so love that about you. If I ever want to know how you feel or think, all I have to do is simply ask you. Please don't ever change that in your life. So many people you will meet wouldn't know an honest feeling if it hit them in their face, and yet, there you are at age 6, age 7, age 8, being brutally honest with me. Thank you for that, if I might not have told you yet. It will serve you well in life.

We are so lucky that you chose to come into our family and that you chose me as your mother. I am honored that you are in our lives, diabetes and all. I wouldn't change a thing about it, and now look at who's being honest, Mommy. I honestly wouldn't. I always tell you, 'it is what it is', right. Well, here I go again, honey, it is what it is. Acceptance and move through it, to enjoy your life and do all that you want to do. Yes, if there was a cure for Type 1 tomorrow, I would stand in line all night to make sure you are at the head of the line. But right now, thats's an elusive idea. I hope there is a cure in your lifetime. When that day comes, and if I am not around, please raise a glass in my name and yours, and say a thank you to the good Lord who let you live so long to see it and then say a blessing on those we have already lost to this disease, that they did not see the day.

I want to tell you something that you should know. It's hard to think about and even harder to write. I don't expect you to read this letter until you are older, older to understand more of Type 1. If something should ever happen to you, a low that you don't wake up from, a high for days, weeks, months, I want you to know something. This disease is hard. This disease can take it's toll. I want you to know that I have enjoyed every minute as your mother. Every single minute, even when I was being strict with you. I have loved you from the depths of my soul. I have lived in the moment since you were diagnosed, taking in every smile, every laugh, memorizing every good time, because in the back of my mind, no matter how much great care I give you and all that you learn to do to take care of yourself, it could happen. I don't say this to scare you, I say this because it is the reality. It is what it is. I want you to know how very loved you are. I want to tell you that I will see you again, in a place where we are all well and we have no worries. I want you to know how very much I loved being your mother.

I know you are going to grow up and do great things. I know you will do them with diabetes. Some people will know that about you and some will not. Prove every person who says 'you can't' wrong. If you take risks in life, if you play and work with all your heart, you will do fantastic things. Don't forget about your knees, a little time on them - working, praying, thanking - would be good for you every day too. There are always people in this world who have it worse than you. There is always someone who could use your help. So, whenever you get down, whether it be about life, love or diabetes, my advice to you is to get up and outside and look for ways to help others. Get your mind off yourself. The sun did not rise cause you got up this morning. Best to remember that.

I love you. No matter what. You are a fantastic child. You bring joy to our lives in so many ways. You are smart, capable and can do whatever you want in life. You have so many memories of your childhood - look back on them and realize that we all did the best we knew how for you. When you are older, you will do the best you can too, no more and no less. You will be a wonderful woman and mother when you grow up. You will do great things and I hope you do them with love.

Love,
Mommy

DOC and AOD (Admiring Our Differences)-DBlog Week!

2011-05-09T06:06:00.000-04:00

I know there is strength in the differences between us. I know there is comfort where we overlap.
Ani DiFranco

In the DOC, there is always the chance to learn. Sometimes it's what to do. Sometimes, it's what not to do. From every person in the DOC, there is something. And it's never too late to learn.

I thought about all of you out there and here is what I have learned, from each of you:

From Kelly, humor, laughter, friendship and bitch-switch flipping when the time is necessary.
From Kerri, that mommyhood is possible and my own little '6-until-me' can grow up strong and healthy.
From Meri, that we are strong, strong mothers and that if she can do it, so can I.
From Reyna, laughter about the situations D places us in, and same-same.
From Joanne, that mommyhood, with T1 along for the ride, is a journey we can all relate to.

From Hallie, that every day is sacred.
From Leighann, that information is a great thing in the DOC.
From Bennet, that each of us has our own story to tell and yes, your diabetes may vary.
From Laura, strength to carry on and the courage to reach out for help when I need it.
From Lexi, a sense of my bad-ass D-Mama self and that we as a group, truly do rock.

From Lee Ann, honesty, reflection and of course, art as a means of expression on this journey.
From Lorraine, that food is important, that change is ok and our kids can do this.
From Pam, that grace is something else :0) and connections hold us together.
From Scott, that PWDs always have something to teach us.
From Betty, that 52 years with the D is something I want my daughter to say one day.

From Jen, that pictures about D are worth a thousand words
From Wendy, the life of a child, of all our children, is priceless and gluten free can be done well.
From Jules, that thousand of miles of distance does not disconnect us from other D-Mamas.
From George, that struggles can be overcome and there is a little ninjabetic inside all of us.
From Karen, that blogs are places of support for us all.

From Nicole, that there is so much still to be done looking for a cure for our children.
From Lora, that we indeed kick-arse as DMamas.
From Donna, that our kids are kids, foremost and they take T1 along for the ride.

From Wil, honesty is helpful and curse words are sometimes the best expressions.
From Tracy, that princesses do indeed have T1.
From Haley, that my gal will be a teen one day and I can only hope she's this cool.
From Heather, that at the drop of a hat, it can all change again, and that the DOC will be there for you when it does.

We each approach parenting a child with diabetes from a different angle. We listen to the PWDs in our lives, who have so much to tell us about having been a child with T1. We each love our children fiercely. We each, at the drop of a hat, will rush to support each other. We each have diabetes in our lives and are living strong with it, rolling through the struggles and enjoying the triumphs.

I feel strongly that I need to say it on this blog - We push each other to be our best. We support each other to rise up again tomorrow and do it all over again. We encourage, we provide shoulders to learn on, we praise and we listen. That's what this DOC means to me. We have chosen not to be a forum of parents who condescend, judge and admonish. We all belong here. We all fit in. We are hard enough on ourselves. This DOC, these gals and guys who I choose to listen to, and share this journey with, are exactly that. I refuse to be caught up in more waves of guilt, more waves of 'I'm not doing it right!' and more waves of us-against-them.
I refuse to.

Thank you, each of you, for being you.

I admire our differences.

If I left you out and I truly follow your blog, my apologies... I'll be adding those I might have forgotten to the end of each blog post this week.

Rowing the boat

2011-05-05T19:24:00.000-04:00

When I think of the DOC I think of all of us rowing a boat together.
Weird, I know. Bear with me here.
We are on a journey together, each of us placed here for a common goal, to support one another.
To say to each other 'You are not alone on this journey, I am with you."
To lift each other up, no judgments and no blame, no criticism that stings and no harsh words that wound.
That's why I came to the DOC and why I stay, because I'm in the darn boat and I need help.

So, we are all in the same boat.
PWDs, CWDs, T1s, T2s, caregivers, relatives.
One boat.
And that boat fits all of us. Every single one of us. Amazing, isn't it?
There is always more room in the boat. Always.
We welcome new members aboard, although it's a boat they never wished to travel on.

The water is smooth sometimes.
Its sunny some days and cloudy the next.
And sometimes the ocean is choppy and rocks the boat.
Sometimes it's so rough that it almost tips us over.
The funny thing is, it never does.

You see, we are all rowing the boat.
But, we are all not rowing at the same time you see.
Sometimes, people need rest from rowing. It's tiring to row all the time.
People grow tired, people get upset, people are done with this boat and this ocean and all these other people on this damn boat. And they wish to get off, to just stop rowing.

That is the time that the others on the boat say to that person -
"Let me row for a while. I have the strength now. You take a rest. Clear your mind. Look at the ocean. Chat with others. I'll do the hard work and keep us afloat and steady on the course. Let me row for a while."

And we all take turns rowing.
We know that it could be us soon enough, needing a break.
We know that we have the strength to lift the oars when others are tired.
We are in the boat and it is what is saving us.

Cheap LowKillers and Blue Circle Pins

2011-05-02T14:37:00.000-04:00

Hows that for a title? I feel like Reyna, who always comes up with creative and fantastic titles for her blogposts!

Found these super-cheap, on the clearance rack. Lowkillers. 25 cents. Not bad for Skittles in an egg.
Now it's FUN to bring up a low :0)

I am a flea market junkie. There, I said it. I'm not a buyer so much as I am a looker. I love stuff people put out to sell. And no, I am not a hoarder, though I love the show Hoarders, it makes me feel good about the state of my house.

I have begun a little collection. You know how people are always selling their costume jewelry? Well, surprisingly, lots of little old ladies once wore blue crystal circle pins! Guess what they look exactly like? You guessed it! The diabetes blue circle.

My weekend's latest additions:

Yeah, I'll be sporting those to my next diabetes conference.

One Year Pump-aversary!

2011-04-25T15:35:00.002-04:00

I have been AWOL from the blog and AWOL from the DOC this past week. Why you ask?

- Two older children came down with ear infections. 14 and 12 years old and ear infections??? They each hadn't had one in 8-10 years. Tell me that doesn't make for some fun times.

- Grace came down with the stomach flu. Requiring one all-nighter keeping her numbers stable, ketones of 1.2 at one time, one midnight call to our pediatric endocrinologist on call, one primary doctor visit and bottle of regular ginger ale, doled out in teaspoon amounts. We made it through without going to the ER. My whole goal was NOT to go to the hospital, and we did it! But frankly, this past week has been one of the longest since she was diagnosed.

- HIGHs from the stomach bug. I would temp basal +30% for an hour at a time. Then I brought out the big guns and drove it up to 50% for 2 hours at a stretch. I whacked that sucker down. Scared the crap out of me, but I did it. Call me the high-killer.

- Three kids, Spring Break. Nothing more needs to be said how that is a time-sucking event like no other.

- Our roof was damaged by hail in June (yes, last June) I am STILL arguing with the insurance company about replacing it. Still. I finally hired a public adjuster, cause I am tired of getting screwed. Call me the bullshit-killer too.

So, as you can see, good times around here.
But I see the light at the end of the tunnel, the sun coming up over the horizon and finally, some healthy kids and some relief.

Today, April 26th is Grace's one year OmniPod anniversary!
One year ago today we stuck that pod on her, filled with insulin and have never looked back since.
A1Cs went from 7.3 to 6.4 in the year she has been on the OmniPod.
She loves the Pod, we love the Pod, love the remote (PDM), the tubeless-ness of it all and the auto-insertion.
For us, it works.
Here's to a smaller Pod in the future and an improved PDM.
Until then, Happy 1 year pumping Grace!
Have I told you lately that you absolutely, fantastically, rock?
You do.

It may or may not have happened

2011-04-13T09:02:00.000-04:00

It may or may not have happened
that Grace was invited to test a newer insulin pump

It may or may not have happened
that if I share anything about it, they will come and find me...
what they will do to me I don't know... but who needs that nonsense, right?

It may or may not have happened
that Grace earned some money from the alleged happening that she could buy herself a new bike

It may or may not have happened
that her Mom squealed with delight about some things about the new may-or-may-not-have-been an insulin pump and its new features

It may or may not have happened
that Grace and her Mom got to see and touch and play with the alleged new may-or-may-not-have-been insulin pump

It may or may not have happened.

WHY her insurance sucks

2011-04-03T18:36:00.000-04:00

I've told all your blog-readers before about my trials and tribulations with Grace's Medicaid insurance, Keystone Mercy (provider in PA). The denial of Novolog and my ensuing battle about it.

Surprisingly, they still suck.

Here is the latest.

This weekend Grace got a letter in the mail from Keystone Mercy, addressed to HER.
Can I remind everyone that she is 8 years old. 8.
Born in 2002, not in 1902 as the folks at Keystone Mercy seem to think.
I have always thought, and this just reaffirmed for me, that Keystone Mercy and ALL the people who work for the company, are convinced that she is a little girl with Type 2 diabetes.
This just seals the deal.

Inside the envelope:

Lists of complications from diabetes
Two sheets.
Oh and both sides of each sheet

Here are all the eye complications.

And here are all the foot complications.

Lovely, huh?!
Grace took one look at it and said, in true Grace-fashion "What the heck are they mailing them to me for?"

I know she can have complications. I know them by freaking heart.
We talk about them with her, on her 8 year old level.

Do I really need her no-nothing insurance company to send her information like this via the mail?
Does Keystone Mercy even think that Type 2s are going to change because they got two sheets of paper about complications in the mail?????

No intro letter, no 'Dear Grace...' nothing.
No personal relationship.
No knowledge that she has Type 1.
No knowledge that they are mailing pages of complications to an 8 year old.

And that's why her insurance sucks.

Introducing Lucy...

2011-03-27T16:18:00.000-04:00

Lucy is my middle daughter. 12 years old, smart as a whip, gentle, kind, funny as all get-out, smiley faced, cheerful, sarcastic, dancer in the kitchen and singer of Broadway show tunes at any given time. That about sums it up. She is also the younger sister of Maddie, who has autism and the older sister of Grace, who has Type 1. I asked her a few weeks ago to just let me know what that was like for her, being the middle of the 'sandwich' so to speak. I asked her to speak whatever was in her heart and whatever she felt. Here are her thoughts. If you care to check her out, she also blogs, at the uber-fabulous www.lucyplease.blogspot.com

And so, here's Lucy...

So hi there! My name is Lucy and you might have heard about me before, you might have not. If you don’t know who I am, I am the sister of Grace and Maddie. As all of you know, Gracie has Type 1, while Maddie has autism. And me? I am a typical teen that you could find anywhere. I like to read, draw, sew, hang out with friends and my parents (not very normal, but I love them too much!), and blog. I have a blog named LucyPlease which talks about fashion, and you can check it out here. But I am not just here to talk about me, I am here just to talk about my sisters. First, let’s start off with the one and only, Grace.

Grace is a amazing person, inside and out. She will talk to you about everything and anything and is a smart as me! But sometimes her diabetes can be frustrating for me and the family. It can be hard for me sometimes because when we are out in places, people stare and think that we are giving her some kind of ‘bad’ thing in her body. And sometimes I can’t deal with stares. They just don’t know how it is and what it is like for a little girl to have diabetes and manage it around the clock, 24/7. I recently was in health class and we were talking about diseases and diabetes came up in the midst. So, like the outgoing person I am, I decided to say something about her. I told everyone that my little sister had Type 1 Diabetes and that she on the OmniPod. And what did I get from the group? Blank stares. They looked at me if I was someone they had never met. They thought it was the weirdest thing ever that someone I knew had diabetes. Also, just having a sister with diabetes. It breaks me sometimes to see her struggle and cry about how she doesn’t want diabetes to exist and how so hard it is. I don’t have this, but I know how it feels. It limits you from so many things in life. Like going swimming, playing outside, eating, drinking certain liquids, and doing all of the fun things we all experienced as a child. She has to come in and check herself before she goes somewhere and has to dose herself for certain foods. Sometimes, I wanna just give her a long hug and tell her that everything will be okay and her diabetes will get better. I wish she didn’t have to deal with it every day after one another. Gracie is one of the most outgoing kids with her diabetes that I have ever met. She is not afraid to tell people about it and share what she really thinks about diabetes.

And Maddie on the other hand, is so funny and smart, I don’t even know where to start. Autism can be hard on everyone sometimes, but it always sometimes can comes out good in the end. Maddie loves Broadway musicals, acting, singing, dancing, watching and collecting videos, and Cheez-its! Yummy! But, it isn’t always ‘happy happy, joy joy’ in here. People stare at her, make fun of her, and just laugh at her sometimes if she says something in school. Me? I have told them to stop staring and laughing, but being the immature teens they are, they won’t. Maddie doesn’t notice who stares at her, but I do. Well of course I do, I am her sister for crying out loud! It’s very hard for me sometimes because people don’t know her, and they just judge her on how she looks and acts, which hurts me. People don’t get autism. They just think it is something to make fun of and say she is so weird, when really, it’s just Maddie being Maddie in life. But my friends respect Maddie for who she is, says hi to her in the hallways, and always talk to her when she is feeling down. They are really true friends. It’s also hard for me because when she has a tantrum or gets nervous, everyone always has to whisper to their friends or tell people about it and stare. It’s always about the staring with autism, because people think they are weird and not normal. So, I just have to help, because that is really the best thing you can do in this kid of situation. Overall, Maddie is by far the best older sister anyone can have, even if I can’t talk to her about boys, fashion, or anything else you can talk to your older sisters about.

And now you can meet me! My name is Lucy and I am a regular and normal teen,who enjoys many things. Some of my hobbies include baking, reading, drawing, sewing, writing, blogging (oh yeah, because it is awesome), and Glee! If any of you watch Glee out there, it is by far the best show ever. I also love acting and singing in front of people and at places. Right now I am in concert choir, chorus, orchestra, the play, and many other things. So you could say that I am juggling a lot of things, but I like when I juggle things, because I know I am involved somehow! Some of my favorite singers include The Beatles, Adele, Florence and the Machine, Lea Michele and Cory Monteith (their voices together are like angels singing in the day), and The Killers. my attitude is always positive and people at school say I should be a cheerleader because I have so much pep in my step! Haha. I love fashion and drawing, so that is what my blog is about. Right now, I have about 65 followers, but there is always room for one more! And make sure you follow this blog, because it is amazing. Well, that is all for me now. Hopefully I made someone smile, cry, laugh, or do all of them while reading this post. So, I will talk to you guys later! BYE!

Lucy :)

She makes me mighty proud. Thanks for your post today Lucy!

SELF Magazine

2011-03-24T08:43:00.001-04:00

The ever fabulous Kelly Kunik over at Diabetesaliciousness was featured in the April SELF Magazine under the 'Be SELFless' section they have. SELF magazine wrote about how she empowers others with diabetes and her uber-fabulous blog and the DOC (shout out to all of you!)

I know Kelly has major concerns about what SELF did with the quotes and information she supplied to them and questions that she answered for them, and what SELF magazine staffers did with what she wrote. They chopped up her quotes. This little itty bitty section was more than 3 pages of back and forth emails between SELF and Kelly.

You can find Kelly's take on it here, in her blogpost 'SELFless.'

She asked me a while back for the picture of her and Grace at the 2010 JDRF Walk in Philly. It's a great photo of Kelly and Grace on the Art Museum steps in Philadelphia. 8,000 walkers. It was quite a sight. Kelly, Grace, Grace's sister Lucy and myself walked around the river and the Art Museum, with other people affected by diabetes. We laughed, strolled and waited in long lines for the potty. Talk about community!

On page 23, in the bottom left hand corner, you can find Kelly and what she is doing to empower other people with diabetes. She fights diabetes myths, advocates for others with Type 1, shares her story as a person living with Type 1 for over 30 years and flips her bitch-switch when needed! All of that, and also a dear, dear beloved friend who is such a support to Grace and to me.

Kelly makes a difference in our DOC every day - through her blog, her Twitter messages and her comments left on posts throughout the DOC.

It's an honor Kelly that you chose Grace for your picture for this wonderful message.
You truly DO empower others with diabetes.

Go check out SELF magazine. April issue. Page 23.

Oh, and then go and tell Kelly how much you LOVE Kim Kardashian on the cover (NOT), cause Kelly's got a serious case of the 'I don't get it's.'
It was God, having a sense of humor with Kelly in this issue of SELF, seriously.

Watch this. Wait for it, at the end.
That, my friends, is why I love her so.

24/7 with K2 from thebetes now on Vimeo.

Getting Lost, then Getting Found

2011-03-21T19:58:00.000-04:00

I needed a life preserver, honest.
I was so very lost in the land of basals and correction factors and carb ratios.
Ever get lost within it all?
To where, if you look at one more number and try to figure out where it all went bust, you think you are gonna bust.
That's where I was after The Perfect Storm and for the last week.
Great endo appointment. Amazing on many levels for self-realization.
But not so much for getting those basal rates corrected and figuring out Grace's correction factor.
Not able to figure it out.
Not for lack of trying. It was just that trying, you see, was getting me nowhere.
Nowhere, as in mixed up crazy numbers, high then low and not seeing the forest for the trees.

So, off I went to see Gary.
And I literally looked at him and said,
"I need help, I am really lost. I don't understand what's going on and I really would like to understand."
And he helped me understand.

He printed out a month of numbers and we looked at them.
He printed out the graph of her patterns and we analyzed them.
He drew me a line of how basal patterns run in kids her age.
It didn't look like my 'two-peak-like-an-M' line that I had for her, not at all.
He gave me percentages of lows, highs and in-range for each segment of her day.
We said 'Yes!' to some things and 'Wow!' and 'Whoa!' to others.
We fixed, we changed, we altered the schema of basals.
We figured out true correction factors from subtracting ending BGLs from the original high and the correction bolus given.
We changed correction factors, cause really, that wasn't the problem after all.
The basals were tanking her at times, then shooting her high at other times.
We changed I:C ratios based on after meal numbers.

It looked like this when we were done:

Graph of BGLs, with %s of lows, highs and in-range numbers.
New basals underneath and basal tests to do.

Notebook with my simplified notes.
Line graph is a typical 24 hour basal pattern for kids her age.

Ever get lost when you are driving, then all of a sudden you ask someone for directions and instead of just verbally giving them to you, they motion to you and say "Follow me," jump into their car and they lead you out and onto your way again?

It felt like that.

The Perfect Storm

2011-03-19T09:13:00.000-04:00

I created one this week. And it happened while Grace was at school.

You see, it's testing week this week at school, our state test - the PSSAs. Reading, Writing, Math, you name it, we test it. And they are long. And kids sit for 2 hours at a stretch. And they are stressful, even though I plead with my kids to just 'try their very best and let the chips fall where they may' - they don't quite understand that last part, so I just stick with 'try your best, that's all I ask.'
And Grace is in 3rd grade, so she gets to start the tests this year.
Can I get a Yeah!??? from the crowd?
Didn't think so.

Every day the class would have their snack at 10 am. Grace was SO responsible, she kept her OmniPod PDM with her in class (it usually resides at the nurse's office throughout the day and she stops by to check and dose with some limited supervision). She checked when we asked her to, before snack, and would dose herself for her snack. Normally a 100 calorie pack of something. She was thrilled to do it all by herself and we praised her and applauded such responsibility. She beamed with pride.

Monday comes and we see this:
107 - wake up
220 - 10 am check
95 - lunch time

Tuesday comes and we see this:
118 - wake up
247 - 10 am check
110 - lunch time

You see the pattern? Yep, me too. Stress inward much? Cool as a cucumber on the outside and sweating on the inside. Stress drives up her numbers. Gary would tell me about it and how he would raise basals by close to 100% for situations that were stressful. But really, my 8 year old didn't stress about anything, so in one ear, out the other. I did lodge it in the back of my mind, along with a zillion other things, but things in the back of my mind rarely come forward to join the working crew of brain in the front.

Here it was, stress related BG skyrocket of numbers.
So, being the gal that I am, I raised her basal by 50% for 8:30 - 11 am.
I thought all was well and was gonna see how W, Th and F played out.

I made a crucial tactical error.

We changed her Pod from her bottom, to her tummy on Tuesday night.
Can anyone tell me what that means? Anyone?
I'll give you a minute..

Minute's up.

It means better absorption rates, for my girl.
The Pod on her bottom is a slower rate of absorption than her tummy. Her tummy sites are notorious for rocking her numbers. So are her arms. As we move sites around her body, her thighs and bottom are slower and often I need to adjust basal rates based on them.

Do you think I thought of this on Tuesday night?
Nope, I made the basal change and changed the site.

Wednesday morning brought her Pod on tummy and a new basal rate to combat the stress and hit that 10 am high hard.

The Perfect Storm.
Wanna see and cry along with me?

Wednesday
89 - wake up (Hey Penny, get a clue!)
29 - 10 am check (Grace reports that she would like to sleep, in class, to her teacher)

Juice is given. Two juices. Along with glucose tabs and a snack. The teachers and nurse shove 45 grams of carbs down her. It takes about 40 minutes, but we see a 89, 109 and whew! we made it out of the storm.

The hell with the stress high. One week of 240's at 10 am, I will take it, in a heartbeat.

A Sweet Grace

Superstitions and the 2 AM check

Basal Dance - From Complex to Simple

Year Three

Marching on

The New Year

Where have I been?

T1Parents, Read this at Bennet's YDMV

It started with the rice

Thankful

The Book of Better

This should make you chuckle

Endo Visit & Diabetes Candy Exchange

Walmart D-Supplies & Bayer A1C Test

JDRF Walk 2011

Halloween Tips on A Sweet Life

CWD Technology Conference in Philly!

Hayride!

Miracles Every Day

Thank you Steve Jobs

Badass D-Mamas

Diabetic Party Mix

Apidra: The Smackdown

Oh Blog, how I have neglected thee!

Penny & Grace's 30 - Invisible Illness Week

Saying I'm Sorry

Diabetes Art Day - YOU are Our Sun

Diabetes Art Day tomorrow!

1st day of school

What Some Would Call Lies - Go Now!

Overnight Basal Testing Joy

Gary Scheiner's 'Diabetes Bites' newsletter

Guest Post at Diabetesaliciousness!

Grace's interview at Lauren's Hope Blog - Check her out!

Home from Camp!

Diabetes Camp - Year #2

Winner of a Lauren's Hope Bracelet is... Jessica!

Lauren's Hope Medical ID Bracelet GIVEAWAY!

Welcome ~ Lauren's Hope!

A1C Haunts

Of Falling and Freedom

Bag Of My Dreams

OmniPod Case review (oh and it's not a good one)

Happy 9th Grace!

D Meet-up and FFL

Scenes from a vacation

The Spirit of 76!

Thankful.

Gourmet Dinner for Diabetes and We're All Invited!!!

con·gen·i·tal

Virtual 5K - We Did It!

You Can Do This Project

D-Mom here!

Virtual 5K - Let's GO!

Grace SingAlong Vlog

Starlight in the City

JDRF Walk - Road Trip and DMeet-Up!

Road trip!

What I've learned - DBlog Week

Life with D in pictures - DBlog Week

Awesomest Thing with D - DBlog Week

D-blooper - DBlog Week

Letter to Grace - DBlog Week

DOC and AOD (Admiring Our Differences)-DBlog Week!

Rowing the boat

Cheap LowKillers and Blue Circle Pins

One Year Pump-aversary!

It may or may not have happened

WHY her insurance sucks

Introducing Lucy...

SELF Magazine

Getting Lost, then Getting Found

The Perfect Storm