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The Countdown to Summer Begins

Only 3 more days until summer break.  This year has flown by.

This was our first school year since my little guy’s diagnosis and it went WAY better than I initially expected.

He was diagnosed in July and school began only one month later in August.   I was so incredibly freaked out.

How in the world could I let him out of my sight for 8 hours during the school day.  We weren’t on the pump when the school year started.  We were still brand new to the world of 24 hour diabetes care for a child.

How could we possibly trust another person to care for him when I didn’t even feel confident in my own abilities?  I considered homeschooling him, but that would mean quitting my job.

When I called the school to discuss his care, I had a long conversation with the nurse.

“He has one of the few conditions the school board considers to be life threatening”, she said to me on the phone.

My heart stopped.  I knew this already.  Hearing it out loud made me want to throw up.

But, we took it one day at a time.  One phone call at a time, three times each day…and we survived.

This is a major milestone for us.  I think now we can look forward to the next school year without a feeling of dread….and I’m thanking goodness for kind people who are willing to take such careful care of a child who isn’t their own.

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Hunter’s my Hero! – Diabetes Blog Week Day 7

Well, Diabetes Blog Week is coming to an end.  Goodness it was fun.  I saw so many new blogs and truly enjoyed reading the comments on my own.  (Holy Cow!  Someone’s actually reading this!!)

On this last day, we were instructed to tell about our diabetes hero and of course, that’s my boy Hunter!

He was my hero, even before diabetes came along.  He’s kind, sweet, cool, brave and takes on diabetes like Superman!  Overall, one awesome kid!

I love this boy…..

Wild Card – Diabetes Blog Week Day 6

Diabetes Blog Week Day 6 – Wild Card

Today we were instructed to post diabetes related pictures.  Instead, I’m going to use the wild card option and do my own thing 🙂

Nick Jonas is one example of a celebrity with Type 1 diabetes.  My little guy is really into music and while the Jonas Brothers might not be on the top of a little boy’s idol list, there is no questioning that he demonstrates you can “do anything” with diabetes.

So today, I’m sharing a video of a song Nick wrote about life with Type 1.

If you’ve never heard it before, I hope you enjoy…

(note:  This is a fan-made video from you tube.  I do not own a bit of it…clips, music or lyrics)

What They Should Know – Diabetes Blog Week Day 5

Diabetes Blog Week – Day 5

Our instructions:  “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

Oh boy.  This topic immediately caused a nasty rant in my brain.  So much so that I had to put it aside and come back to it later, which means I didn’t get it posted yesterday on Day 5 of Diabetes Blog Week.

I don’t think the misinformation about Type 1 diabetes bothered me quite as much when it was just my husband.  After all, he’s an adult.  He can defend himself.  He can tell people to go climb a tree when they direct a ridiculous comment towards him.  But now, there’s a child involved.  And let me tell you, I can feel the steam coming out of my ears when someone says something stupid to him.  (i.e., random lady in store who says “maybe if he eats more healthy, diabetes will go away…”)

I know.  I shouldn’t expect every person to perfectly understand diabetes.  But that’s the thing, I don’t.  I just kindly wish people would keep their mouths shut when they don’t know what they are talking about.

I’m good if you want to ask questions.  That’s cool.  That means you want more information.  That means you care to learn.

I’m not good with inaccuracies stated as facts.

I guess if I had to choose one thing for people to understand, it would be that high and low blood sugar numbers are normal.  They can’t completely be avoided.  Their presence doesn’t mean mismanagement or poor care.

There are many factors that impact blood sugar.  Exercise may bring it down, but in some cases could bring it up.  Stress can bring it up.  Wrong carb count on restaurant website can lead to a major low.  Even if you perfectly count carbs and manage insulin intake, the resulting blood sugar may not be perfect.

I consider diabetes to be a “do the best you can” disease.  It will never go exactly as planned, but hopefully over time, there will be mostly good results and less of the bad stuff.

How Many Sets Can A Wood Chuck Change if a Wood Chuck Could Change Sets?

I was thinking today about insulin pump set changes.

We have to change infusion sets every 2-3 days.  ( “we” really means “I”…..hehe).

As fate would have it, both my guys started on one aligned schedule, but that only lasted a couple of weeks.  A kinked cannula or unexplained high blood sugars means an immediate set change, completely screwing up my carefully mapped out plan.

One day, I decided to calculate how this all adds up.

10 set changes per month for each super handsome guy = 20 insulin pump set changes per month.

That’s insane!

Now add the CGM sensor change for my little guy on 5 of those 20 days.  (Extra big needle so we push the limit and he wears each sensor for 6 days instead of 3).

Good thing I have this stuff mastered.  The insulin pump has nothing on us.

P.S.:

This week, I’ll be participating in the 3rd annual Diabetes Blog Week.  That means diabetes bloggers around the world will be blogging on a set topic each day of the week.  More information can be found here:  http://www.bittersweetdiabetes.com/2012/05/third-annual-diabetes-blog-week.html

Happy Reading!

It Gets Better

My son was diagnosed with Type 1 last July, while we were on vacation in Florida.  After reading the stories of others, I consider ourselves lucky.  No DKA and  we only spent two nights in the hospital.

When he was discharged, I remember driving away from the hospital with an overwhelming sense of panic.    I felt so helpless.   Only two days spent learning how to keep him alive.  It didn’t seem like enough time.  All of the information was spinning around in my head.  I could only think to myself  “How are we going to do this?” Of course, I didn’t say that out loud.  I didn’t want to scare him.  I didn’t want him to feel the fear I was feeling.

It didn’t even matter that my husband of 9 years had Type 1.  I felt like I knew nothing.

He was starving.  He begged for something besides hospital food, but I wouldn’t even consider fast food drive through because I didn’t know the exact carb counts of the food.  (duh, you can look them up)

He fell asleep on the hour drive to my mother-in-law’s house and instant alarms went off in my head….Is he high?  Is he low?  Should I climb into the back seat of the rental car and check his sugar?  I felt so out of control.

On the radio, a song played and she was singing my thoughts…

“Can we pretend that airplanes in the night sky are like shooting stars?  I could really use a wish right now, a wish right now.”

I would have given anything at that moment for one wish….

It’s been nearly 10 months since his diagnosis.  Now, things seem normal.  We are calm.  We know what to do and when to do it.

Today, he had his quarterly endo appointment.  The hour drive in bumper to bumper traffic stunk, but the 6.4 A1C result was worth it.  When I heard the number, I smiled.

A lot of days I feel like a failure.  I fault myself for the highs and lows.   I blame myself for miscounting carbs or underestimating the impact of exercise.

But today……today was good…..I’m still smiling!

Trash

I cannot believe the amount of trash that comes from one pump set and sensor change.  It amazes me every time.  When we go to the Barbara Davis Center in Denver, they always have artwork made out of test strip bottles and pump parts, etc.  I wish we could make something cool of all this junk, but alas, into the trash it goes.