Camp Pros (and oh yeah, cons too)

Grace leaves for diabetes camp in 9 days, but who's counting, really? She will be gone for 6 days - overnight. Did I mention that she just turned 8? Yep, thought I did. What was I thinking signing my just-8-year-old up for 6 days of sleepaway camp? Oh the fact that she begged and pleaded to go, that might have done the trick. Now, of course, I have my doubts and they are pick, pick, picking at my brain. So, like any rational human being (I didn't say I actually WAS one, I'm just saying I know what they would do...) would do, I compiled a list of PROS and CONS to this diabetes camp adventure.


PROS:
+ Grace will have great diabetic care while she is away. On site doctors and CDEs, round the clock care.
+ She will meet other T1s her age and form friendships and communions that I hope for her.
+ She will meet and be surrounded by older T1s all week. In her mind, that's nirvana.
+ A camp experience for her! Swimming and kayaking and campfires!!!
+ It will be nice to take a break from D for the week around here. And now I feel guilty for even saying this as a 'PRO' on the list.
+ She'll learn that she is not alone in this journey.
+ She will learn more independence in her care. Though after the camp staff meet her and get to know her, I can imagine them using her to guide others in independent care, and for Grace, this would be great, to be the role model to someone else -  the teacher, instead of always, always, always, the learner.
+ She can take a break from us for a week. No Mommy nags, no sister fights, no house rules - and who doesn't need a break from all this every once in a while?
+ Other people on the OmniPod! She has yet to meet another kiddo who is on the Pod, face-to-face.
+ Learning tips and tricks and insider info, from other T1s and how they care for themselves. She might come back with some great ideas!
+ They will keep her busy and occupied with new and exciting adventures. The girl is all about adventures and trying new stuff. It will open worlds for her.


CONS:
- 6 days. 6 days overnight. She has never spent more than one night away from home. I went to Denver for 3 days and she cried and cried when I returned about how much she missed me. I worry that the days will seems endless to her and she really might want to come home. I cannot call or talk to her for the 6 days, only send her a one-way email which they will give her every afternoon. This is more my worry than hers. She has not expressed one iota of one thought of possibly even missing me. That reassures me, but it does nothing to quell my Mommy-worry.
- She is just 8! She had to be 8 to get into camp and begged me that she truly would be 8 exactly 3 weeks before camp started. But I know that she will be among the youngest at the camp. The other kids seems so much older than her - the camp ages are 8-13. Will they always remember that she is just 8? I hope so.


Ok, so I only have two cons about the whole camp experience. They are outweighed by the pros heavily. But they itch at my brain, not knowing if I did the right thing in letting her go...

Happy Birthday Lucy!

Happy 12th to an amazing daughter and sister! She is awesome in every way, a total fashion freak, loves to blog (you can find her here at LucyPlease) and is funny beyond belief. We are blessed to have her as ours.

Happy 12th Birthday Lucinda Rose!

Nuggets

There are so many of us now out there, all blogging about life with the D. I think it's wonderful and I cannot tell you how much I learn from all of you. Each and every one of you who is writing about your life with D itself, your child with D or just the presence of D in your life. There is something to be gleaned from each and every one of you. I have been thinking how much I take in in one day and what I do with all the reading of the blogs and I think I found out what I do:

I get little nuggets of wisdom from each of you.
There are parts that touch me, relate to me, relate to Grace and where we are in our journey.

Here are the latest nuggets of wisdom that I have received from you gals and guys out there:

Meri of Our Diabetic Life about changing basal rates with her sons:

Well I have something to say to you…if I change them back; like any LOGICAL person would…well…I’ll be dialing them back up next week. In my experience if you get too strong on the basals, give it time, VERY soon they’ll be right on... Sometimes it just takes a little riding out before things settle.

You see, I was thinking about Grace when I read it. She had been running HIGH all of two weeks and I thought and thought about changing her basals. I was afraid though - of lows. This spurred me to action. I thought, I know Meri knows something about this :0) and I have to give it faith that I know, in my gut, that basal changes would work. The first two days were like walking on ice - we had some 60's and 70's, but nothing lower, and her words 'sometimes it takes a little riding out before things settle' got me through it. Her numbers rock now. Now I know Meri doesn't give medical advice, but it was the sentiment behind it that spoke to me - trust your gut and hang on, cause it may be a little rough, but after the turbulence settles, it's a pretty smooth ride. Wisdom noted.


Steve of Without Envy about his daughter's diabetes and impact on his life:

It is the experience of our hands that we learn from, which fingers to prick, which dark holes to avoid. We are being taught to take it one day at a time, one shoreline after another, celebrating the rewards of everyone’s hard work and  mulling over the things that went wrong. But such discovery has a hard-edged strangeness about it, an awareness that leaves us weary. Yes, with it comes empowerment, but there is always the troubling forethought of what might linger in the unknown. For tomorrow is another day and fear too can be motivating. Parents of children with chronic sickness know this maybe better than most. As Franca put it to me as we were driving away from the doctor’s office with our good news: Every time I leave there, I can’t help but feel like crying.


Steve is an exquisite writer and new to the world of the D with his daughter. I find such strength and beauty in his writing, expressing what I feel at times, much more eloquently than I ever could. He summed up how I feel leaving every endo appointment. Wanting to cry tears oh happiness about the 6.8 A1C and crying tears of sadness because we are here for an appointment in the first place. Such mix of emotions that we deal with every day. And there is the trudging on through it. Day after day. And there is the knowing that others are doing it beside me, and with me, which in a very big sense, keeps me going as well as anything else. 


There are more nuggets. I'll be posting about them.
What nuggets have you gleaned lately?

2 am

Look familiar anyone?

This is our last night.
Just in case anyone was wondering what that 2 AM check looked like:

Better than donuts I suppose....

I got my Walk 2010 packet today from JDRF and I wish I were mistaken about what they included with my packet, but I am not.

Yep, that would be two free Rita's water ice coupons. Water. Ice.

As in the ingredients are:
Water
Sugar
Food dye

I understand that Rita's may be in part sponsoring the Walk. Rita's is a popular water ice chain here in and around Philly. They do have sugar free water ice. We just don't go because well, it's a lot of sugar, even the 'sugar-free' ones.

As I said, at least it's a tad better than including Dunkin' Donuts coupons.
A tad, but not by much.

JDRF Re-do

I received an email the other day about the annual JDRF Walk in our area. We have a team. We walk. I like JDRF and what they do. I try and support them by walking and being there and raising some money.

It was the bottom of the email that bothered me for some reason. This is what it said:

About JDRF:

JDRF is the worldwide leader for research to cure type 1 diabetes. It sets the global agenda for diabetes research, and is the largest charitable funder and advocate of diabetes science worldwide.

The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Type 1 diabetes is an autoimmune disease that strikes children and adults suddenly, and can be fatal. Until a cure is found, people with type 1 diabetes have to test their blood sugar and give themselves insulin injections multiple times or use a pump each day, every day of their lives. And even with that intensive care, insulin is not a cure for diabetes, nor does it prevent its eventual and devastating complications, which may include kidney failure, blindness, heart disease, stroke, and amputation.

Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.4 billion to diabetes research, including $101 million in FY2009. In FY2009, JDRF funded research projects in 22 countries throughout the world, including more than 40 human clinical trials.

© 2010 Juvenile Diabetes Research Foundation. All rights reserved.

Okey-dokey. I get it, they are serious. They want everyone to know this is a bad one, this Type 1. It causes lots of complications, even sometimes when a kiddo has great A1Cs and great numbers. It just seems so harsh in print. It seems so, well.... WOW is all I said to myself after I read it. It brought me down. I suppose that is how it's supposed to affect a person who reads it. But isn't it also misleading a bit? Yes, it's chronic, but yes, it's doable. Yes, it's lifelong, but there are measures our kiddos and people with T1 take to avoid the complications later on down the road. Is shock supposed to be it's purpose? To shock those who don't know about Type 1 into realizing how deadly it can/could be? To remind us all how it all goes down??? It just left me expecting more from JDRF. 

Is there a better wording? I'm no writer and I'm no editor, but here is my take on the whole coda to the email that they send out. Here is what I might write:

About JDRF:

JDRF is the worldwide leader in research towards curing Type 1 diabetes. It's primary role is research into curing Type 1 diabetes and is the largest charitable funder and advocate of diabetes sciences worldwide. Since it's founding in 1970 by parents of children with Type 1 diabetes, JDRF has awarded more than $1.4 billion to diabetes research. In 2009, JDRF awarded $101 million and funded research projects in 22 countries throughout the world, including more than 40 human clinical trials.

The mission of JDRF is to find a cure for diabetes and it's complications through the support of research into it's cause and beginnings. Type 1 diabetes is an autoimmune disorder that strikes children and adults suddenly. People who have Type 1 need to test their blood sugar and take insulin, whether it be through injections or an insulin pump, for the rest of their lives. Insulin, however, is not a cure for diabetes. There are numerous complications that can surface for people who have Type 1. JDRF is committed to helping those affected by Type 1 diabetes lead full, productive, healthy lives while researching a cure.


Any thoughts anyone? Would you leave the JDRF statement as is or change it? I'm interested in how everyone feels after they read it.

Happy 8th!

Happy 8th birthday Grace!

Making the decision to have a child is momentous.  

It is to decide forever to have your heart go walking around outside your body.  

~Elizabeth Stone

It's all so Diabetesaliciousness!

The ever-fabulous Kelly of Diabetesaliciousness talks about our vacation meet-up last week. She is an awesome gal and such an inspiration to other PWDs. I love that Grace made a connection and a friend. Check out Kelly's recap when you can.

Data Interpretation - that's it!

Hey, thanks for letting me get that off my chest yesterday. I honestly feel better getting it out there and developing a plan for myself and what to DO.

Gracie's basal night torture test - otherwise known as 'Mommy doesn't sleep night' went like this:

6 pm - 145 (dinner bolus)
8 pm - 174
10 pm - 187
12 am - 219
2 am - 223
4 am - 209
6 am - 182
8:30 am - 261 (woke up, corrected and eat breakfast)

So we got a little problem with the rise til about 2 am, then she starts to slide downward a little and then BAM - wake up with a big old 261. I'm going to try and figure this out, with the help of our team. My feeling is that I should adjust her basal rate starting about 8 pm, figuring that I should step back about 4 hours from when I see the huge jump. Then, it seems I should adjust again about 4 am, for the jump that happens somewhere between 6 am and 8:30 am.

 It also seems that pump companies and manufacturers have it on their minds too, how patients can USE the data we all have goldmines of, in useful and productive ways. This is exactly what I am looking for - how to use the data to make changes that result in more stable numbers. Just think if we can teach that to our kids - how to look for patterns and adjust! If you haven't caught up with Diabetes Mine's post today, please do. It's EXACTLY what I am talking about.

Wanna Be

If you're going to go through hell... I suggest you come back learning something.
Drew Barrymore 

Grace's numbers have been all kinds of wacky this past week. Ever since I jinxed myself and her with the perfect 87 after swimming for 4 hours. I only pretended to know what I was doing :0) I knew as soon as I put it out there in the universe - 'I shoulda never said that!' - that all kinds of numbers were going to happen. They did and here I sit amongst them all - the 245, the 309, the 41, the 273, the rare 110.

I feel like I have lost control. Did I ever have control to begin with??? Maybe that's all a myth, that we have some control over the D in our kids lives. I mean, we try our best with this basal, and that bolus, and this and that carb ratio, but frankly, doesn't the D do what it wants most of the time? Like a bad houseguest that overstays it's welcome. You want to tell it to pick the clothes up off the floor and get a job. But it just lays on the couch.

While I was on the beach I thought about where I was in it all. What did I need to learn to do to get out of this hole? And frankly, I thought of one thing - that I needed to learn. I needed to learn how to be as close to a really great CDE that I could get. Now, don't get me wrong, I don't want to become a CDE and have no intention of returning to any kind of class to become one. But I need the knowledge that the good ones have.

I need to know how to truly do good basal tests.
I need to know how to change basal rates and then know they are stable.
I need to know when to go back and do basal testing when things go awry.
I need to know how to do the basal rates first, then tackle the boluses and carb ratios.
I need to know how to begin a carb ratio amount and recognize when it needs a fixin'.
I need to know how to look at the data and see what needs changing.
I need to know when I have enough data to makes those changes.
I need to know how to look at patterns and see solutions.

Seems like a long list of needs to me. Doesn't make me feel real good. To be needy, or even recognize that I need so much. But there it is. That's what I need to do this job. It's sort of like, for me, taking stock of getting a new position in a company and then looking around and realizing I might not know how to do it. What do I need to do in order to do it well? That's how I feel about parenting a child with the D. It's a new position and I need to take stock, 18 months in, of what I need now, to do it well. I want to do it well. I don't care if I am the best, but wouldn't it just be a shock to the system if I acquired the skills to do it well, and that, in turn, would lessen the stress I feel when everything is out of control? That would be heavenly to me - less stress, more knowledge and a feeling of semi-control.

So, tonight, I am emailing Grace's D-care team and asking them to help me gain the knowledge. I am beginning a night time basal test.  I am asking her team to teach me to do all of the abiove. Not just faxing them numbers and asking for them to solve it. Not just calling in the information and waiting for a call back. I want them to teach me. I need to know.

Just a thought...

Saw this on vacation. Too expensive to buy, so I took a picture of it (shhhhhh!!!!!) and here it is...
Just food for thought.
I have others I 'picture-stole' too. Postings to come dear folks.

Meet-up

While we are on vacation I gave Kelly a call to see if we could get together and finally meet face to face. I wanted to actually meet her and I really wanted Grace to meet her. Kelly was all for it and hopped in her car and drove on over to meet us. I cannot tell you how delighted I was.

Can I tell you how fabulous Kelly is? She is smart, funny, warm, genuine, cut-the-crap honest and a hoot to boot. Grace fell in some serious 'like' with her. They chatted,  laughed, they teased each other and underneath it all, they found a connection that two T1s can have, no matter what the age difference.

When Grace was first diagnosed, I went online and tried to find information. You know, the Google-race to see how much one can digest before one wants to literally throw up on the computer, then throw the computer out the window. That kind of information. I found tons about Type 1. Information that is.

Then I found Diabetesaliciousness. I read every blog she wrote. I laughed, I cried, I thought about my gal. I sent Kelly a one year Diaversary card, to thank her for helping me on this journey. She did, she just never knew how much. Maybe she still doesn't. It's hard to tell someone that they saved part of your life.

Here was a T1 woman who was strong, confident, healthy, taking it all in stride, humorous and was living her life with T1 and saying that if you were T1, you should too. It was all I wanted for Grace. I wanted to envision her grown, and strong, and confident and healthy and taking it all in stride and living her life. Kelly became part of my vision for Grace. The hell with the naysayers and the cure basket people and the ones who say she 'can't' and 'won't' - here she was. Literal proof that we could get there.

Kelly is all that.
Grace is, and can be, all that too.
I have proof.

'G' and 'D' at the Beach

Everyone needs a little medical ID on the beach.

I don't know if you can see that beautiful 87, but there it is!

4 hours in the ocean at -20% basal rate.

Thank the sweet Lord for completely waterproof Pods!

The girl loves to boogie board!

3 days. In the water 4+ hours straight.

SkinTac and waterproof insulin pumps ROCK!

35g a slice.

Extend 1/2 of the dose for an extra hour and we are home free!

Good to know should we ever want fried sweet potatoes.

Love how they post the carbs!

Don't you wish everything came with a carb count already on it?!

Fireworks on the beach.

Is there any sweeter sentence than that?!

Voila!

The cure

Oh you thought I was talking about the cure for T1? Oh silly gals, there's enough talk about that on the 'net and on blogs.


This is the cure I am talking about all week:

The cure for anything is salt water...  sweat, tears or the sea.

- Isak Denison