Friday, September 24, 2010

2 am talk

I went to check Grace's blood sugar at 2 am last night and this is our conversation -

Click click click. The darn clicker clicks, but it won't draw blood.
I cannot see as I don't have my glasses on, so maybe the setting is wrong.

I click on her pinky finger, always a 2 am finger. Usually first try gets it for me.

Click click click. Nothing.
Click click click. Nothing.

Here is where I curse. Under my breath. Quietly ;0)

A tiny little thumb appears from under the covers.
A tiny little smile creeps across her face while her eyes are closed.

"Mom, here's my thumb. It's a tremendous bleeder."

Wednesday, September 15, 2010

Laying Claim to her Body

It sounds so 'uppity' or 'new-age.'
I don't know what it is, all I know is that it is what is real.

Diagnosis D

Grace HATED getting shots in the beginning. Though, all of us know, that it wasn't just my child hating getting shots, it was ALL of our kids hating the shots. Don't tell me you haven't been there and your child just absolutely loved getting shots, cause I see your lips moving and I know you are lying. Ok then.

So, our way around this, in this family, what worked for us (you see where I am going with this - oh yeah, it's a 'this works for me, I don't know what works for you and your diabetic regimen, I'm just trying to do my own thing' statement) is that when Grace needed a shot, we would wait for her to be ready to get the shot. And let me tell you, we sometimes waited. The most we ever waited was 11 minutes. We told her there was a rule - Mommy and Daddy would never give you a shot unless she was ready. Being ready meant she was calm. That's all she had to do in the whole thing - stay calm. When she was ready, she gave the go-ahead and we gave the shot. Eventually the waiting decreased and decreased, til she was ready immediately to get the shot. I based it on the fact that I was never going to chase this child to give her shot, I wasn't going to wrestle her, I had respect for her and her body.

I kept telling Grace 'It's your body, you get a say as to when and where.' I even let her choose her shot sites from two that I would pick.  I do truly believe that with all the loss of control in getting diagnosed with Type 1, this enabled Grace to gain some control. She controlled when she got the shot. She controlled where she got the shot. Now I know some of you out there say 'I could never wait!!!' I thought so to, until I tried it. Grace was going to get her shot and we would wait. Simple as that, but ever so complex as that. I believe it empowered her to have some control over her body.

I would repeat this mantra to my little girl of 6 and 7 and now 8. 'YOUR body. You have a say. You have control over YOUR body.' I think of it not only an empowerment, but what I have to teach her. This body is your vessel to get through this life. Treat it well. Care for it. It is yours.

The pump

We were 16 months after diagnosis when Gracie would finally talk about a pump. Before that time, it was always 'No way!' and 'I don't want one.' Again, we waited (are you sensing a theme here???) and sure enough, my gal came around after seeing the OmniPod. I know how my Grace works - there is no convincing her. It has to be her decision on her terms. And it was. We were ready for the pump before she was. But once she was ready, she was onboard. Totally. Again, she was the one who was wearing it. I could have forced it on her. I was in for a big fight if I did and I knew that. Who wants to fight about the pump every day? Not me sister, so I didn't even try. I waited. It was her body and she would tell me when she was ready. She did.


Here is where we are now. Our endo would like us to try a CGM on Grace. Just a trial. He pops out his DexCom and shows her. She smiles politely. She asks if this would be another insertion and he shows her the sensor. She says 'That's great!' and then immediately says 'I don't want one.' and walks into the other room. Our CDE says we could have one on a loaner basis and it would just be for a trial, to see if we like it and all. I look at him and say 'Well, I'm for it, but I'm not the one wearing it.'

Here's where it gets sticky. He says we should just tell her that we are deciding to do it and it's just for a week or two. That's it. Our decision. Cause, you know, we are 'the PARENTS' and all. Case closed.

I tell him how I roll. I tell him how I parent. This is not what I do, I say. I have told her time and time again that it's HER body and HER choice on some things and how do I just fold that all back in and ask her to turn around while she cries and I slap a sensor on her? 

I understand parenting. I make a million decisions that are totally out of my kid's hands 24/7. I don't give choices in a lot of life. But I do when it comes to diabetes and my 8 year old girl. I believe what I say, it is HER body and she most definitely can make choices when she is 8 and VERY aware of everything. It can be her choice. I don't think I am compromising her health by not having her hooked to a CGM. Yes, it would make life easier, yes I would see rolling numbers and numbers and numbers, but at what price to my child's emotional and mental health? It's not that I am saying NEVER and neither is Grace. She is saying not now, I know what it is and what it can do and no thank you, right now.

I have to listen to her. I just have to.
I know my Grace. I know I have to wait.
Others will have to wait too, cause this is how I roll.

Sunday, September 12, 2010

Community in my Community

It happened about two months ago and I just remembered it today. I wanted to tell you all about it.

We were in Joann's Craft Store, Grace and I, just shopping. She was down the aisle that has the American Doll-like clothes. There was a mother there with her two pre-teen kids too. As we perused the aisle, I could feel the two girls staring at Grace's arm. She was wearing her Pod on the back of her arm. Nothing new, the stares. I am starting to get used to it. Grace normally doesn't even notice.

We get ready to check-out and there she is again, this mother and her kids. She is behind us in line. Only now the two girls are smiling at Grace. Grace smiles back.

The mother leans in close to Grace and says -
"Guess what?"
And she pulls out a pink MiniMed from inside her bra.

Grace beams and she looks as if the woman just pulled a rubber chicken from inside her bra, she is that surprised by the whole thing.

Grace shows her arm and tells her she wears the OmniPod.  She tells the woman that she was diagnosed when she was 6.

The woman's eyes fill with tears at the edges. I see it, but Grace doesn't, not really. She's too excited that someone else is wearing the pump, right here in the store. The woman says she was diagnosed when she was 22 years old. Then she says -
"I have two kids, I'm married, I have a great job and I just happen to have diabetes."

Grace tells her she would like to be married when she grows up, and have kids (a boy and a girl to be exact) and she thinks she might work as a teacher.

We check out and go to say goodbye.

The woman leans down to Grace and says one last thing -
"Wear it proud sister, wear it proud."

Thank you,
dear woman,
for a moment of clarity,
for being so real,
for being kind and telling her that it is ok,
that you will be just fine sister,
that people grow up and have Type 1,
that there are people who see you and care about you.
Thank you.

Thursday, September 9, 2010

Diabetes Meme and Tag! You're It!

Well, well, well, what have we here. It seems Miss Kerri over at Six Until Me, one of the fabulous DOC members who's blog is a must read, posted a Diabetes Meme and since I am in the mood to 'meme', it's only fitting that I complete one.
But there is a catch.
What you say?
Yep, a catch.
You see, I have tagged one of you faithful readers of the DOC! 
Read til the end, find out if it's you, and then complete your own, post it to your blog and tag someone else.
I'll complete the meme for Grace...

What type of diabetes do you have: She has the good ole' Type 1 variety

When were you diagnosed: Miss G was granted the title on January 9, 2009

What's your current blood sugar: She just went to bed at a grand 118

What kind of meter do you use: She uses her PDM of her OmniPod. It takes Freestyle strips. She uses the 'pricker' (her words, not mine) of the FreeStyle Lite.

How many times a day do you test your blood sugar:  She averages 11-12. Ouch.

What's a "high" number for you:  Anything above 170 mg/dl is high to me. If you ask her, she feels highs above 200+ mg/dl.

What's do you consider "low":   60 mg/dl 

What's your favorite low blood sugar reaction treater:  Juicy Juice (nectar of the gods), glucose tabs, pudding, icing and Skittles. Together that all sounds disgusting.

Describe your dream endo:  We have one! Smart as Einstein, funny as all get-out, kind, compassionate, caring, on-it like white on rice, understands kiddos, smart (did I mention that - like kick-ass smart), responsive and a great joke-teller. Oh and she gets how hard it is to be a D-Mom, that too.

What's your biggest diabetes achievement:  For me, it's achieving good control so that Gracie can put the D on the back burner sometimes and get on with being an 8 year old girl. That and surviving the diagnosis and the aftermath that came with it. For Grace, I think she would say that getting the pump is her biggest achievement. That and going to diabetes camp.

What's your biggest diabetes-related fear:  For me, as Grace's mom, it's the whole 'not wake up in the morning' thing. That strikes the fear of God into me. That's why I check at 10 pm, 2 am and 5 am and nothing can stop me, if it keeps her alive til the next day. I can sleep when I am dead.
For Grace, she has often told me that she fears the lows. The 35s. And the loss of words when she is there.

Who's on your support team:  Hubby, kids, endo, CDE, and you people - the DOC! You gals and guys keep me sane and grounded and you make me feel so not alone in this journey. Have I thanked you all lately? Thank you.

Do you think there will be a cure in your lifetime: In my lifetime, sadly, I have to be honest and say that, no, I don't think so. In Grace's lifetime, I think she might see an artificial pancreas come to fruition.

What is a "cure" to you: No BGL checks, not carb counting, freedom. A working pancreas or something as close to it as you could get.

The most annoying thing people say to you about your diabetes is:  If one more person tells me what Grace can or cannot eat, or tries to tell me she cannot have a cookie, I might slug them with my giant diabetes bag. Honestly. For Grace, she hates when people tell her stories about their great Aunt Ruth who lost a leg and went blind cause she had the 'sugars.' Me too, Grace, me too.

What is the most common misconception about diabetes: Please don't tell Grace or I that she should just exercise more or stop eating candy. It's not Type 2 folks. There is a difference. Just like there is a difference between they're, there and their. Which, by the way, drives me nuts when people don't use them correctly.
If you could say one thing to your pancreas, what would it be:  I would tell Grace's pancreas that the vacation is over, so stop being so lazy and start making some insulin!

Now for the game of Tag, You're IT!
Hey Reyna, Tag, You're IT!

Wednesday, September 8, 2010

Endo Visit - The essentials

Who: One little girl with Type 1. Code name - Grace

What: Grace's 3 month endo appt. Not much to talk about this time. I feel I really have a good understanding of her basal rates. I know how to find tune them after I see three days or more of out-of-range numbers. I learned a lot when Gary Scheiner and I had a long talk about basal rates - testing, checking, changing and how to adjust them one at a time. So, checking in with Grace's endo feels more confident to me.

How do I prevent the swimming lows that send her plummeting even after I do a -25% temp basal for her length of swim time? Grace seems to go low about an hour after she is done swimming. It's an odd thing I never knew how to address.

Answer: Let her basal come back to what it should be, then about an hour after she is done swimming, do another temp basal -25% for .5 hours.

Where: Endo's office in a gigantor hospital building

To do:

* Eye appt for Grace. It has been two years since her last one. I have no concerns, just checking in to see that nothing is happening so far.

* Blood draw to check for celiac and thyroid issues. Grace hates this once a year blood draw. Me too.

The best news yet:

Cause a picture is worth a thousand words, a thousand 2 am checks, a thousand basal rate changes and adjustments and a thousand realizations that for right now, we have a good handle on it all.

Monday, September 6, 2010

The Price of a Tummy

Since Grace has been on the OmniPod, she has refused to put it on her tummy. She never even had shots in her tummy when she was on shots. She would faithfully rotate the Pod from each arm, her bottom, each thigh and upper leg, but never, never, never the tummy. In fact, don't even mention the tummy cause it cause shrieking and running from the room. So, like anything else, I waited. Heck, I waited a good 9 months until my little Miss G was ready for the pump, I was ready to wait this one out too.

Then about a month ago, I mentioned the tummy site when she would change the Pod. Literally every time I would ask her. She would faithfully tell me 'NO!' and then explain that the tummy site would "REALLY HURT MOM!" I would ask her each time who told her this - was it someone else? was it me? She would respond that no one had told her that, it was just what was in her head. She was sticking with the idea that it hurt worse than anything and you know how once a thought gets into your head you cannot help believe it? That was the conundrum my gal was stuck in. I had Gary Scheiner talk with her, her CDE and endo talk with her - everyone told her the truth. That it hurt no more and no less than any other site she already did.

Finally I thought of something. Every one has their price in life. In other words, it was like Fear Factor. How much to eat the cow's eye? How much to sit in a tub with snakes? What's it worth to you? What I learned from that show is that everyone has a price to do anything. If a person won't do something, you just haven't hit that person's price point yet.

So, basically I played Fear Factor with Grace. And I am not even ashamed to say it.
(And to those of you who even think of leaving a comment about how I paid her off and bribed her. Well, you could put it that way. Yes, I did. And I'm not even a bribery kind of Mom!)

I placed $20.00 on the table and told her it was hers tonight if she put the Pod on her tummy. I knew money started talking to this gal in the last year. Allowances. Money to buy things. The girl knew money. The deal was $20.00 to try a tummy site. Just once. Then after she tried it and it was OK, it was part of the rotation of sites. $20.00 was a one time deal. And I guaranteed that in 4 hours, if it bothered her so much that she couldn't stand it, I would remove the Pod and we would place it somewhere else.

It was quite a deal. Worthy of MidEast peace negotiations.

Guess what Gracie's price point on a tummy insertion site is?

That would be $20.00.

Wednesday, September 1, 2010

Diabetes Art Day

Juice of the Gods

OmniPod Gal