Outback Carb Game

Eating out is always a challenge. How many carbs? How many do you think would-even-be-close-if-we-had-to-guess carbs? Well, we played last night. Went to Outback Steakhouse with a giftcard we received at Christmas. Here is our game. Care to play?

First, the menu. Always good to give the little gal choices. Hoping she shies away from the Spotted Dog Sundae but I say nothing. She picks the ‘Grilled Cheese-A-Roo’ and Aussie fries to go with it. No fresh seasoned veggies here. I mentally make a note to take away some of her fries after they touch the plate down and hand them over to her big sister.

Before eating blood sugar. It looks almost like the ads for meters in magazines and on TV, doesn’t it? Which are consistently at 105, always. Don’t you want to see one of those ads read a whopping 375 one day? I do. Sorry, digression from the Outback game.

Oh, before dinner they gotta roll out some bread. Grace has a little slice. Remember this later, cause I forgot to add this in. Maybe if I forgot, then it doesn't count? Yeah, right. It comes back to bite us in the you-know-what later. 

Ahhhhhh, dinner is here. Do those look like normal slices of bread which are 12 grams of carb each? They look a little gi-normous to be 12. The fries have already been dealt a blow by none other than me, Mommy, who skirted some away while she was in the potty. Anyone who says they have never done such a thing ain't a momma to 3 kids.

Right away I am thinking 54. Why? Bread – 24. Fries – 30. That’s my guess. Drink was a Diet Coke (a treat for her) which we both tested by tasting it before she drank it. Who needs a night in the ER when you can just taste the soda to make sure it’s actually diet, right? Just my rule of thumb. Not saying it ever happened to us. No. Never :0)

Her dinner ratio is 25 grams of carbs for 1 unit of Novolog. Breakfast is 12 g:1 u and Lunch is 15g: 1 u. (No one ever said that diabetes was not a games of mathematics, did they?) 

So everyone, play along.

54/15 = 3.5 units Novolog

And that's what we gave her.

Except, remember the bread? That lousy one piece of bread that I didn't factor in to her grams of carbs eaten? Yep, that was the one, that 2 hours after dinner, caused a 275. Lousy bread!

Outback Carb Game, sometimes, I just don't wanna play. 

You too?

“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one”

C.S. Lewis

It’s amazing this Diabetic Online Community – the DOC.

The people you can find, who say to you –

You mean you do that too?

You have that too?

Your child does that?

You got diagnosed that way?

You reacted that way?

You felt that way?

There is such joy in that, finding someone who gets it.

When Grace was first diagnosed, I wasn’t sure who to reach out to, who I would ever connect with, who would understand this new normal we are now in. Honestly, I thought I was alone. I was the only one in the entire world who had a 6 year old daughter who was just diagnosed Type 1.

In the WHOLE. WIDE. WORLD.

Ok, turns out that’s not true at all. But I believed it as if it was.

That was really hard. REALLY.

Now I find moms, dads, people with Type 1 – all over this community.

Now I don’t feel so alone.

That is really good. REALLY.

Pump Talk

Gracie is on daily shots. When she was first diagnosed a year ago, this was all we knew. Then, through looking around at others with Type 1, lots of research on the internet, our endocrinologist’s knowledge and meeting a 9 year old girl named Zoe who had a pump, we learned about possible pumping options.

Here is how a typical discussion about insulin pumps would go, since her diagnosis:

“So G, did you see that pump on Zoe. What do you think?’

“I don’t want a pump. I don’t like it.”

“Hey, look at this, a pump! Wanna see the ad?”

“I don’t want a pump. I don’t like it. It’s gonna suck it outta me!!!”

“See Zoe’s pump and her cute cheetah waistbag for it?”

“No, I don’t want a pump. No thanks Mom.”

You get the picture???? I didn’t push it at all, I would mention it and the response would be immediate. No thanks Mom. And insisting that despite all I would show her and explain to her, that the insert will be sucking the life out of her. It’s just gonna suck, suck, suck, til she blows away (ok, she didn’t actually say that, but that’s the emphasis she put on it in every discussion we would have).

Until she was sick this week. We had LOTS of time to spend together.

Somehow we got on the topic of pumps. I had ordered a sample OmniPod a while back, just to have as a sample to show her. When we got it, she opened it, looked at it and plopped it on the table with a stern “No thanks.” OK dear, got it, nuff said. I filed the sample Pod away. I came across it as I cleaned out a diabetes-stuff box.

“So, you know, a pump might make your life and eating easier for you G.”

“ You mean no more shots, shots, shots, shots, shots?”

“Yep, that’s what I mean. You would get your insulin through the insert under your skin. I would give you your bolus dose through the PDM, or on the pump itself, it would have buttons honey.”

“No more syringes???No more Lantus at night?”

“Nope, no more Lantus.”

“I want the OmniPod.” (At this point, the heavens opened and the angels started singing)

“Ok, let’s talk with Dr. Z at our appt in March. Sounds good?”

“Good Ma. Yep.”

Then I went to the bathroom and did a happy dance, all by myself. Not because I want her on the pump, but because she had an open discussion with me about it and realized, herself, that it might be an option for her.

One of the reasons I have not pushed it with her is the idea that it is HER diabetes and not mine. I don’t want her to resent having the pump cause Mom and Dad wanted her to have the pump. She’s 7. She knows life before the big D. She knows her decisions, she is a smart chick. It is SHE who has to wear the pump, live with it, own it. What if I took that control away from her? She’s has given up so much control to this lousy Type 1, I feel like it would be one more thing that she would have no say in. I gotta give this girl some say in her diabetes. That’s how she will take care of herself, when she owns it, through her own decisions.

I don’t know if I made the right decision, not forcing her to get the pump sooner. What if I had forced it on her, then the daily battles begins about it, with a giant bucketful of resentment towards me.  I know all the facts about the pumps - she would have better control, better A1C,  more freedom, more ability to be on her own. Maybe I didn’t have to wait this long.

But maybe there is a flip side to all this. Maybe through my waiting and working through my impatience, til I finally was patient and let it become about HER decisions and not what I wanted, I gave her the ability to have control. To see herself as in charge. And that may be the greatest gift I can give a little girl who has already given up so much.

HI there

Does anyone else hate the fact that their child’s meter states ‘HI’ when it hits a full –blown high blood sugar? So friendly, so sweet, so leading me into a panic that is beyond measure. It seems the makers of the meter have a snarky side, saying ‘HI’ to me as if it just wants to let me know that it finds me charming and would like to stay a while.

The 500 range you say? Who me? My child? Yeah, we got there today, thanks to a cold and sniffles and a fever.

I can think of other four letter words that the meter should read when your child’s blood sugar approaches the 500 range.

ARGH

HELP

WHAT

OHNO

OOPS

CRAP

GO!

RUN!

I left out the un-family-friendly ones I cannot use on my blog. Don’t think I didn’t think of them though.

Leave me to program a meter, I’ll make sure it doesn’t say HI, but instead, tells you how you really feel.

Stand in Another Place

You know, I thought my plate was full when my firstborn child, my Maddie, was diagnosed with autism at age 2 1/2. She's 13 now and it's been quite a ride. Challenging, joyful, painful, amazing, discouraging, wonderous and sad. All at one time.

Cruising along in life. Three girls now. My youngest, Gracie, and her diagnosis at age 6 with Type 1.

Another kind of ride. Remarkably similar, yet very different. Challenging, joyful, painful, amazing, discouraging, wonderous and sad. All at one time.

Learning to be here, in the moment. Truly and fully in my life. Appreciating the now. Learning the lessons I need to learn from all this.

Watch this video. Remember the 360. Trying hard to do this with my life since the big D.
Worth every second. Watch til the end. The best 5:55 minutes you will spend today, I promise.

'Thank you' doesn't seem big enough

 If the only prayer you ever say in your entire life is thank you, it will be enough.

-- Meister Eckhardt

In the D-blogosphere lately there have been two postings that have made me think of being thankful for diabetes. Well, thankful that someone, a while back, decided that people did not have to die from having diabetes that is. Kelly  and Natural Born Cyborg both have eloquent posts about Drs. Banting and Best, the developers of insulin. Before their time in 1922, people were diagnosed with the ‘sugars’ and eventually dies of starvation – sometimes within 6 months, sometimes by the lengthy sum of 1 year. In any terms, it was a death sentence until Banting and Best discovered insulin. You can read about the doctors here.

So, I wanted to chime in. I wanted to say thank you, publicly, for insulin. Thank you for seeing that there was a way to keep people who had diabetes alive, for a very long time. I don’t think there is a D-Momma blogger out there who hasn’t at some point in the care of their child thought ‘Whoever invented and discovered this ‘liquid gold’ – I could just kiss him?’ OK, so none of you thought about the kiss?? Call me crazy, I did.

Maybe I’ll go even further. I’ll even thank the diabetes for coming into our lives.

Can someone give me a ‘What-What???’

THANK the diabetes????

OK, before people get their skirts and neckties all flustered and up in the air, I know I might not be in the majority, but hear me out on this one. I hear again and again on so many blogs and posts about the big D about how I should hate it, really hate it, in fact, pour my hate into it, day after livelong day.

Sorry guys, I can’t do it.

For me, what works for ME (read that part again cause it’s a disclaimer to how YOU might feel oh commenters of doom) is claiming the diabetes, accepting it and thanking it for being part of our lives now. It is part of my daughter now, one year into it. I cannot separate the diabetes anymore from her than I can her bright brilliant blue eyes. They are who she is. Diabetes is a part of her. It’s a part I am thankful for in her life.

I have met so many people on this journey so far. So many D-Mommas who hook me up with compassion, empathy, humor of all kinds, perseverance, and gettin' on with the gettin' on. I am thankful for all you guys and gals out there who make me and our family not feel so alone. I would not have met all of you moms, dads, PWDs in all your fabulosity. A big 'thank you' to you all - you know who you are ;0)

I might be mistaken here that if I am thankful for it, I somehow don’t wish she didn’t have it. I don’t know about you, but that whole ‘woulda, coulda, shoulda’ doesn’t work in my life. I’m real, I’m honest. I get on with it. Wishing for something that didn’t happen -  that she didn’t develop Type 1, I can’t spend my time in that land. It seems dreamy. I cannot convey to her that we are in despair because it DID happen. It was real. I walked through the fire. We all did. My feet are burned. There is no way to think about un-burning them. I am not in despair. WE are not in despair. I can regret all of what she didn’t have, but that seems so wasteful with the time I have here on earth.  I don’t have time to waste.

If I claim the diabetes and thank the diabetes, I can move on to realistically deal with it. My thankfulness gets me through it. My thankfulness for it can conquer it. My love for it loves her, completely, utterly, unconditionally. I cannot bring my self to hate it, to separate and tease it out from her. It’s where I am right now with it all. Wrapping my head around it. Will it be where I am later in her life, when she has had it for 20-30-40 years, God willing? I don’t know, can’t predict the future and don’t wanna try.

I know that I am good, here, right now, thankful that she has diabetes and she has insulin. 

Her is good with my diabetes

Gracie loves herself some notes. She writes all the time. There are poems, notes to herself, a kicker about how to find a boy (I'll have to post that one, it's a doozy), lists, jokes and stories. This is one she decided to do from the word 'MOTHER' - note how it reads on the start of each line, down the left.

I love the line 'Her is good with my diabetes.'

Awww, sweetie, I really try.

YOU are the one who is really good with it.

I'm just the CEO and the Primary Care Team :0)

Who ordered an artificial pancreas? Comin' right up!

JDRF Forms Partnership With Animas to Develop First-Generation Automated System for Managing Type 1 Diabetes

Partnership to develop automated system to better control diabetes represents first step on path to artificial pancreas --

NEW YORK, Jan. 13 /PRNewswire-USNewswire/ -- The Juvenile Diabetes Research Foundation today announced an innovative partnership with Animas Corporation to develop an automated system to help people with type 1 diabetes better control their disease -- the first step on the path to what would be among the most revolutionary advancements in treating type 1 diabetes: the development of an artificial pancreas, a fully automated system to dispense insulin to patients based on real-time changes in blood sugar levels.

Animas, a Johnson & Johnson company, is a leading manufacturer and distributor of insulin delivery and glucose management systems. JDRF is a global leader in research leading to better treatments and cures for type 1 diabetes.

The objectives of the partnership, a major industry initiative within the JDRF Artificial Pancreas Project, are to develop an automated system to manage diabetes, conduct extensive clinical trials for safety and efficacy, and submit the product to the U.S. Food and Drug Administration for approval.

"If successful, the development of this first-generation system would begin the process of automating how people with diabetes manage their blood sugar," said Alan Lewis, PhD, President and Chief Executive Officer of JDRF. "Ultimately, an artificial pancreas will deliver insulin as needed, minute-by-minute, throughout the day to maintain blood sugars within a target range. But even this early system could bring dramatic changes in the quality of life for the 3 million people in the U.S. with type 1 diabetes, beginning to free kids and adults from testing, calculating and treating themselves throughout the day."

Dr. Lewis noted that "JDRF will provide $8 million in funding over the next three years for this project, with a target of having a first-generation system ready for regulatory review within the next four or so years."

The first-generation system would be partially automated, utilizing an insulin pump connected wirelessly with a continuous glucose monitor (CGM). The CGM continuously reads glucose levels through a sensor with a hair-thin sensor wire inserted just below the skin, typically on the abdomen. The sensor would transmit those readings to the insulin pump, which delivers insulin through a small tube or patch on the body. The pump would house a sophisticated computer program that will address safety concerns during the day and night, by helping prevent hypoglycemia and extreme hyperglycemia. It would slow or stop insulin delivery if it detected blood sugar was going too low and would increase insulin delivery if blood sugar was too high. For example, the system would automatically discontinue insulin delivery to help prevent hypoglycemia, and then automatically resume insulin delivery based on a specific time interval (i.e., 2 hours) and/or glucose concentration. It will also automatically increase insulin delivery to reduce the amount of time spent in the hyperglycemic range and return to a pre-set basal rate once glucose concentrations have returned to acceptable levels.

In this early version of an automated diabetes management system, the patient would still need to manually instruct the pump to deliver insulin at times, (i.e. around meals). But this "hypoglycemia-hyperglycemia minimizer" system would represent a significant step forward in diabetes management, and could provide immediate benefits in terms of blood sugar control, by minimizing dangerous highs and lows.

DexCom, Inc., a leading manufacturer of CGM devices, will supply the CGM technology for the system to be developed by JDRF and Animas.

Tell me how much this would rock, on so many levels. In Gracie's lifetime, an artificial pancreas? Almost takes my breath away, cause I have been wanting to order one of these for about a year now.

The control she would have, the freedom she would have, the length of her life would increase, her complications would decrease with greater control, the nasty lows, the unspeakable highs, all rolled into one.

When people always mention 'cure' to me after they find out Gracie has Type 1, I am always a little hesitant to put all my eggs in that basket. There are people who are senior citizens with Type 1, who have been reassured for decades that a cure is right around the corner. I can imagine, well, no, I cannot even imagine, waiting 50+ years for a cure. This press release and the notion that they are actually funding and working on an artificial pancreas, now that speaks 'cure' to me. I'll jump in that basket, holding all my eggs, any time.

On the Low Down

7:30 pm - Bedtime check - 149

Check, right in range 80-150

8.0 units Lantus

Check, normal dose at night

8:35 pm - Let's tune in and see what's happening in the land of Grace

"MOM - I am DIZZY!"

(She is walking down our stairs as she says this. Not the best plan of attack sweetie.

Remind me later to tell her stairs and a diabetic low do not mix.)

"Let's check!"

That's me talking. Only I pretend to talk in a calm voice, oh-so-soothing voice, so not-to-worry -dear-we'll-solve-that voice. Some day I will tape myself and you can all listen and see if I fool you too.

44

?????

44

Junior Juice rescued from the frig.

15 g of heaven in a box.

I wanna kiss the makers of Junior Juice. Or at least send them a really cute picture of them rescuing my daughter from a nightmare low. Or some money.

8:50 pm - Let's see what number appears on 'Diabetes Roulette'

Spin that wheel Bob, let's see where it lands.

89

:0)

89

Was a sweeter number ever seen?

Now let me take this Superwoman cape off and go collapse in a corner.

Year One

It has been exactly one year, this Saturday January 9^th, since Gracie’s diagnosis with Type 1. That’s 365 days. That’s 525,600 minutes.

I think I spent about 500,000 of them worrying.

I took Grace to the hospital for some symptoms that were classic Type 1 – thirst, frequent urination, weight loss. We ended up spending 5 days in the hospital. When they admitted her, at 3 am in the morning, her blood sugar was in the 600 range.

I think of how close we came to losing her to Type 1. My heart starts to break when I think about it too long. I can’t go there, I just have to think they we were lucky, we noticed, we caught it in time. We did. I should stand and applaud us for noticing and taking action. I twist my brain into thinking these thoughts when the diabetic coma she could have been in slips in there.

The 5 days are a blur to me now. Countless IVs, tests, doctors, nurses – oh the nurses!, bottles of Novolog, bottles of Lantus, those damn hospital beds that are not comfortable, giving her a bath and cleaning her in a hospital tub, waiting, waiting, waiting, the playroom across the room from our room – which was our saving grace during our entire visit, nutritionists, carb counts, whiteboards filled with mathematical calculations that stretched my brain in throbbing, headache-inducing ways, our kindly endo who came in and first words to me were ‘I am so sorry she has Type 1.’ I broke down and sobbed as I sat in the rocking chair, rocking, rocking, endless rocking, as he spoke of genetic history, care, books, education, a long life, complications…

When Grace was first seen that night we drove to the ER, she screamed. You see, her grandmother – her heart, her soul, her dear grandmother – had passed away almost one year ago. She saw countless hospitals and ERs in her 5 years with Mom-mom, enough to know that hospitals are good, and in her mind, very, very, very bad. Bad in that they let people die. That’s the workings of a 6 year old brain. That was why she was screaming that first night.

Do you know what she screamed? Over and over and over.

“DON’T LET ME DIE! I DON’T WANNA DIE!’

And as I held her, they inserted IVs, tested and looked at me like I was crazy. Bringing this child who screams about death into their ER. I will never forget their faces. They knew no backstory. They must have thought she was crazy. I was thinking, God, she is screaming something that I want to scream – “Don’t let her die, please dear Lord, don’t let her die.”

You see, for me, as it always has been in my life, I have to go down, way down, to the depths of the low, even below the depths of the low, before I can rise up. I had to have those experiences to bring me here, to this moment, the about-face of that one.

I have accepted Grace’s diabetes. I can teach her what she needs to know about diabetes. I can show her what good care is. I can connect her to others who have Type 1, so that she can not feel alone. I can endure the lows, the highs and it all. I am strong.

She is strong. She is resilient. She can face her diabetes.

It took me about 500,000 minutes to get to this place.

So, while I sat there one year ago in that hospital room and thought Grace’s life, my life, and my family’s life had come to an end, I needed a reminder that life is a circle. It was the beginning. The beginning of this journey with Type 1. Of a new family, one that is stronger, more capable, more connected, more funny and more focused than before.

I decided to acknowledge this past year and those who have helped us by supporting us, their friendship, their love and their positive thoughts. Grace and I designed cards. I mailed them to people in our life who see that we can go on, with diabetes.

This diagnosis and life is not a death sentence. We walk with people beside us who have been there, who are still there, who are showing the way to live with this disease. There is love from our families. There is support on-line and in-person. There is friendship beyond measure. For all these people in our lives, I thank them all, from the bottom of my heart, for showing us the way and lighting the path on which we travel.

Test. Shot. All by herself. Rock on.

Testing, testing, is this thing on???

Gotta get some gauze, my fingers are a little bleedy.

Oh no! 277. That was the cookie. Oh well, a girl's gotta do what a girl's gotta do...

Shot. All by herself. 7 years old. Is she a rockstar or what?

1st shot by herself

“The key to everything is patience. You get the chicken by hatching the egg, not by smashing it.”
-Arnold Glasgow

Today, January 4, 2010, Gracie, age 7, gave herself her first shot in her arm.
She had done it at school before, but not at home, in front of us.
She calmly got the loaded-with-Novolog syringe and put it in her upper left arm and voila!

Her comment about it:
'Really, it's no big deal Mom.'

It almost made me cry.