Friday, June 27, 2014

This Is A Test

A few days ago, my wife was reorganizing her crafting supplies (quite a job between her own hobbies and Cub Scout supplies) when she showed me this box of empty canisters. We've saved these for use with the Scouts as possibly a small neckerchief slide/first aid kit, but we're still figuring out how to make it work, since these are so small and difficult to attach to a PVC ring or other slide.

These were originally blood glucose test strip containers. Each container held 25 to 50 test strips (mostly 50), which Andrew uses to test his blood glucose level. He does this before each meal, whenever he's not feeling quite right (low or high BG levels, usually), before recess or exercising outside, at least 2-3 times during the night - basically, anywhere from 6 to 12 times a day, and more whenever he's sick - the first time he had the stomach flu, we tested him at least every hour, if not more.

In short, each container symbolizes 25 to 50 times that my son has had a finger pricked and blood drawn. And, yes, we have more containers than this.

After three years with diabetes, finger pricks and drawing blood have become a fact of life, and it's usually done with little thought about the process, except to remind Andrew, "Don't always use the same finger!" When a container of strips is empty, we give it to my wife, who removes the label and puts it in the box, then open a new one. Out of sight, out of mind.

I guess that's why this box made me stop for a moment and think about what Andrew and other Type 1 diabetics go through each day. It's easy to forget the bigger picture when something become routine, even when it involves the health of a loved one.

Monday, June 16, 2014

Camp Lessons

For those following lately, Andrew made it back home Saturday from camp where he had a BLAST, as he said - already begging to go next year, wanted to go another week RIGHT NOW (the camp is only a week anyway, so no chance of that) and full of stories of things they did, the fun they had, etc.

Oh, and what they learned about themselves and diabetes management - and what we learned too.

Nearly everyone at camp - all the kids, all the teen counselors and many adults - have some form of diabetes, mostly Type 1 (which used to be called "juvenile diabetes" because it usually occurred in children but can be diagnosed in people in their 20's and 30's). You tend to forget that when you see everyone running around, being kids and having a good time. It's easy to forget...sometimes.

So while they are there, between the fishing and hiking and ziplining and horseback riding and other activites, they learn how to start taking care of themselves, from nutrition to insulin pump management. Not by classes, but usually by example and by watching all the others who are in the same situation, along with practice.

We learned this firsthand Sunday, when Andrew's blood glucose numbers remained higher than normal all day. This usually means we need to do an infusion set change, which needs to be done at least every three days - about a 10 to 15 minute process of replacing the insulin, cartridge and tubing in the pump and injecting a new infusion site into Andrew, usually on the stomach or back of an arm. My wife and I have been getting very good at getting this done in about 10 minutes over the past year.

When we told Andrew it was time to change infusion sets, he said, "I can do it!" Really? Well, he HAD been giving himself injections a few months prior to getting his pump last year, and he said he'd done it in camp. Why not?

So we gave him the equipment and insulin and stepped back to watch.

He did it all himself - in UNDER 10 minutes. With confidence.

We're amazed at this eight-year-old, at the friends he's made over the past week, the confidence he's shown, the things he's learned.

He's going back next year. No question.

Thursday, June 12, 2014

Insulin Wrangling

While Andrew is at diabetes camp this week, I've been looking at my computer archives and found this picture of him, which was taken about a year prior to his diagnosis. He's not quite five years old in this picture.

We had gone to a local ranch for their annual BBQ/calf sale, and one of the events there was a "sheep riding" competition for the kids, with prizes for those who could ride the bucking bronco sheep the longest. Our older child went first and was immediately thrown ("it's like riding a soft cloud that's trying to kill you" was his description), then it was Andrew's turn.

The sheep stood for a moment after they released him, then (as this picture was taken) took off at full speed around the pen, my son hanging on for dear life. After a few seconds, the sheep finally ran out of our view around a corner, followed by a loud CRASH as the sheep bucked our son into the fence. I ran over to that part of the corral to find my son on the ground on his back, legs sticking out from under the fence, and an old cowboy standing over him.

"Well, you OK?" I heard the cowboy ask. A pause, then Andrew said loudly, "LET'S DO THAT AGAIN!"

"By God, he ate the fence and walked away! Now that's a COWBOY!" the old cowboy said as everyone around us laughed and I pulled Andrew from under the fence, both of us laughing too. He even got a trophy for 2nd place, having rode for just over seven seconds.

I've read that animal insulin, including insulin from sheep, used to be used in diabetics until the 1970's - maybe he was thinking ahead and trying to lay in a supply before his diagnosis (kidding, only kidding).

However, I can't help but wonder at this picture now, thinking about his struggles (past, present and future) with this disease and how it's been like trying to stay on the bucking sheep without getting thrown or eating any fences. So far, he's done well on his ride. We hope he'll continue to do so for a long time to come.

Monday, June 9, 2014

Well, At Least The Alarm Clocks Still Work

For those who have been wondering if we have found out how a full night's sleep feels, well...

On the left is Scooby, on the right is Wishbone. For the past three years, they have learned:

A) Mom and Dad usually get up twice a night to test the smaller child's blood glucose, which means...

2) They will probably let us out in the backyard to do our business and bark at neighbor's houses until summoned back inside with a treat to return to bed.

This is usually a good thing - if we don't get up by around 1 a.m. and 4 a.m., Scooby will typically try to get my attention and wake me up by whining. Loudly.

However, as hard as it is to train a dog, we've discovered it's even harder to explain to them that the smaller child is away for the week, and please don't bother Mom and Dad until at least noon.

Needless to say, it hasn't worked yet. And no, we can't put them in another room (barking) or lock them outside (more barking). My wife can usually sleep through it. I can't. And if it's after 3 a.m., I usually can't get back to sleep.

So the routine continues, as I try to unsuccessfully convince myself I'm building character by getting up at 3:30 a.m. Scooby and Wishbone do not seem they are asleep again.

Sunday, June 8, 2014

Backpack Separation Anxiety

It wasn't leaving our eight-year-old son at camp that was the worst for my wife and I (although that was bad enough itself). It wasn't getting the perfunctory hug telling us "Get going and let me have fun," instead of a great big bear hug to let us know he'd miss us almost as much as we'd miss him. Oh, no, it wasn't all that. What really got both of us yesterday afternoon after leaving Camp AZDA was THIS:

THIS is Andrew's "camo pack" as we call it, the small backpack he's taken EVERYWHERE with him for the past three years. This is his daily supply & emergency pack, which contains juice boxes and peanut butter crackers (protected in Altoids tins to keep from getting crushed) to treat low blood sugars, a few tubes of cake icing in case of a SERIOUS low, an emergency phone with instructions (since he's been riding the school bus), and his usual blood sugar tester with test strips, alcohol swabs and cotton balls he uses up to ten times a day. In short, this pack is his lifeline, whenever he's out of the house, no matter where he is.

So why do WE have it while he's at camp for a week?

Because we were told, when bringing Andrew to camp, to bring (besides clothing & other essentials needed at any camp) his medical records, supplies for his insulin pump infusion sets (the part that connects the pump to his body), and THAT'S ALL. Don't bring blood sugar testers or strips, don't bring finger prickers, don't bring insulin or Glucagon kits or glucose tabs or snacks or juice boxes or ANYTHING, as they would provide everything the campers will need for the week. We saw the tub full of all manner of supplies in the cabin ourselves for the eight boys living there - it was awesome and eased our the time...maybe a little.

Trust me, we appreciate the generosity of the drug companies, pharmacies and other businesses involved in supplying the camp. We know Andrew is surrounded by doctors and nurses and counselors who have all volunteered to make this camp a reality, and is probably safer there than anywhere else besides home and the hospital.

But it was still extremely disconcerting to see that backpack sitting in the van on the way home, and knowing we'd just left him somewhere without it for the first time in three years.

We'll get over it. Eventually. Really.

Saturday, June 7, 2014

Today's The Day

Almost since Andrew's diagnosis nearly three years ago, we've been hearing about Camp AZDA, the summer camp for kids with diabetes run by the Arizona chapter of the American Diabetes Association. We've been hearing the great things about the camp: about how it's a life-changer for the kids, how they learn so much while they're there while having a lot of fun, how they're monitored day and night to make sure they don't have a problem, and so on.

After waiting nearly three years, waiting for Andrew to reach the minimum age, today's the day he finally goes to summer camp...without us. He's been to Cub Scout camp a few times, but with either myself or both my wife and I with him. This is different. For the first time, he's going to be away from us, and not for a night at Grandma's (which he did a few times before he was diagnosed), but for a week.


He's excited. We're just a little nervous. But in the end, I think this will work out. I hope he'll have a positive experience, meet new friends, learn more about taking care of himself, and have a blast.

And maybe his parents will get a full night's sleep for the first time in three years. I wonder what that's like....

Wednesday, June 4, 2014

Blog Reboot

Did you miss us? Well, Life With One is back. A quick rundown of what has happened since last I wrote:

Andrew was diagnosed almost three years ago (August, 2011) and has actually been in good shape since. He's moved from taking injections to a pump (just over a year ago), and that has changed all our lives for the better. And now, the greatest thing of all: Andrew is less than a week away from his first summer diabetes camp, Camp AZDA in Prescott, Arizona. He's excited for the opportunity, and we can't be happier for him.

Andrew has otherwise been a happy, healthy eight-year-old, ready for summer vacation and (not really) looking forward to third grade in public school. And as time has passed, his parents have learned a few things as well, and grown used to having a T-1 child. We're also looking forward to next week's diabetes camp, with a burning question: what's it like to get a full night's sleep? Hopefully, we'll get an answer.

We've also learned quite a bit about diabetes advocacy, both giving and receiving, and we've met some incredible people along the way - not to mention quite a few incredible T-1 kids. That's what this and other blogs are about - advocacy, awareness and support of both T-1 kids and their parents and families. Together, we can all help our T-1 family members as they live with this disease.

Stay tuned!