National World Diabetes Awareness Month

Before you use diabetes as a joke or a punchline, think about Elise, and the millions of children and adults like her who struggle everyday with the burden of diabetes.

She did not cause this.

She won't outgrow it.

There is no cure.

It is 24/7/365.

And if you can eat something, then so can she.

I want my $1!

In light of what's been going on around here with diabetes, I decided to try and have some fun with it.  We try to avoid using words like good/bad when it comes to blood sugars, but I've heard of some people doing this and thought it was worth a shot.

For every 100 that pops up on the meter, Elise gets $1.  It's not for having  a "good" number, it's just for fun.

Some people have told me that it's bad to mix BG numbers and rewards, but I've told Elise this is not a reward, but a fun game we can play.  So far, she's enjoying it.  And that's all that matters.

Sometimes...

Things have been rough lately.  Diabetes has been a big, stupid jerkface, and Elise is collapsing under the burden of it all.

The other day we had a meltdown of epic proportions. My heard was breaking because I couldn't fix it.  She's hurting down to the depths of her soul and I can't do anything about it. It was haunting to listen to.

She's right... Diabetes is awful.  And horrible.  And not fair.  She's right to ask, "why me?"

But what, as parents, can we do about it?  We can hold their hands. ease the burden in any way possible, validate that their feelings about diabetes are okay (though I've had some argue with me about this.  That's another post for another day), and love them as best we can.

But there is no tangible way to help.  And that's the kicker.

I went to bed that night with a shadow resting over my heart.  I replayed her sobs in my head, feeling like an utter failure.

It's my fault she has this.

My fault her numbers have been erratic lately.

My fault because nothing I do fixes them.

My fault because by now, I should know what to do.

The next morning I awoke with a renewed determination.  First and foremost I wanted Elise to know how proud I am of her.  And how she constantly amazes me with her strength.  And even though diabetes is hard, she is bigger and better than it, and it won't beat her.

So I wrote it down in a note and tucked it into her lunch bag.  Usually I write her jokes, but that day she needed more than a laugh.

There were quite a few calls from the nurse that day (because of the erratic numbers), and I could always hear her in the background; she sounded in good spirits. Usually multiple nurse visits cause major grumpiness.

When she got home, she bounced off the bus to meet me and gave me a big hug when we got in the house.  Then she said this:

"You know that note you wrote me?  Thank you.  It made me smile.  I also read it to M (other girl n her grade with d), and it made her smile and happy too.  And then we talked about how hard diabetes is.  Can I keep the note forever and look at it when I need to?"

With that, she showed me exactly why I wrote the note.  Because it's true.  All of it; she's amazing, and brave.  Strong and a fighter. There are days when diabetes will get her... but she'll prevail in the end.  I know it.

And sometimes... even though I feel like a failure when it comes to diabetes, it's nice to know that I can get it right.

Feeling low?

What do you do when you find boxes and boxes of Jelly Beans in the clearance bin at your grocery store?

You buy as many as possible.

And then text your fellow D-Moms in the area to alert them to the booty of low treasure that awaits them for just 45 cents a box.

It's the small things people...

I guess it's really over...

Almost two months after FFL was over, my last piece of the conference I was trying to hold onto fell off.

And now I'm sad.  Again.

(This post was written a few weeks ago, but never published. I still felt the need to share)

Tap Tap... is this blog still on?

Hello.

I'm still here. Well, sort of. 

Somebody really needs to build an app so my post ideas will go directly from my brain to the blog.  Scratch that... I might start to sound as crazy as I actually am.

Every year, the end of August and beginning on September around here cause me to temporarily lose my mind.  Mostly because, in the span of two weeks, we experience the following:

• Setting up our 504 plan
• Meet the Teacher
• Home visits from the boys' teachers
• Back-to-school for Elise
• My birthday
• Elise's birthday
• Elise's diaversary
• Mattias's birthday
• A birthday party for Elise and Mattias
• Back-to-school for the boys.

This year we added selling a house, our wonderful dog Seven passing away, and the death of a fellow D-mom.

I had more cake and did more crying during those two weeks than I care to admit.

I have lots to share... even if you're not particularly interested. But not right now.  

Right now I think now it's time for some cuteness, however random it may be:

Birthday pinata

Cheering on our team

Fun at the park while trying not to melt in the heat

She's 8!  How did that happen???

I love to snuggle this guy... even when it's 105 degrees out

These 3... they exude awesomeness 

The Trifecta

Her pump wasn't working, her sensor fell off and her BG was 409.  Time for a pump change, sensor change and a shot.

Around here, that's what is known as "The Trifecta".  Thankfully it doesn't come along very often.

What lies beneath

It was reward for a season well-played.  Elise's soccer coach promised that if the girls won all three of their playoff games that day, next week he would treat them to ice cream after the game. So win they did.

Cue 7 year old girls squealing.

Cue inward groans from one mom.

Don't get me wrong... I'd be crazy to be against ice cream.  It's just...

The game was around dinner  time... we'd have to do ice cream first, then dinner.

Trying to make sure her BG stays pretty good during the game is hard enough, now I have to make sure she's at a decent enough number to have a treat after the game?

Let's not forget how crazy her BG can run after games.  Adding ice cream just doubles the fun!

Of course, no matter what, Elise was going to be included.  Even if her BG was 400, she would get her ice cream.  The hard part is that nobody (but you guys) gets what a crazy, mind-crushing, hold-your-breath-and-hope-the-stars-align freaking tightrope we as parents walk in that situation.

Two hours before game: BG is 220.  You want to correct, but not too much so she isn't low at game time.

Check her BG before game: 170.  Hold your breath as you hope the exercise plus IOB doesn't crash her.  

Watch during the game as the dex meanders a line between 190 and 210.  You want it to go lower.  Hope it doesn't go higher.

See her check her pod on her leg after she makes a save in goal and kicks the ball away. Make a mental note to ask what that was about later.

Game is over. Finger poke shows 203.  Bolus for 20g and head to the ice cream shop with the team.

All these decisions we must make, the internal dialogue... nobody gets it (again, present company excluded). It's exhausting.

So off we went to the ice cream shop.  Elise's cone was at least double what I had bolused for.  So I bolused some more.  One of the moms watching commented about the PDM, "Cool!  It's like a remote!"

After the ice cream was consumed, we left to find dinner.  We stopped at a restaurant, but due to behavioral issues, we decided to leave.  

But honestly, it was the 360 double arrows up that was the real reason. Elise's BG was skyrocketing and we didn't know why.  We found out soon enough.

Remember Elise checking her pod during the game?  Something had hit her leg and jostled the pod, resulting in the cannula coming out.  By the time we got home, almost three hours had elapsed, Elise had eaten about 50g of carbs and received no insulin.

What's the point of this post?  It's what people see vs. what they don't see.  They see me check Elise, give insulin, give carbs and we all live happily ever after. Simple... like using a remote.

What they didn't see was the 509 on the meter.  The ketones. The stomach pain.  The crying. The shot. The pod change. The bacon and yellow pepper she ate for dinner at 9:30 because her BG was still so high. The worried discussion on just how much insulin to give her. After all, it was bedtime.

It. Is. Exhausting.

Why do I wish others could see what lies beneath?  I don't know.  I don't.  I just wish they could get what freaking rock stars our children are.

All my rants are belong to you

I'm feeling sort of ranty.  And a little bit stabby. And like playing hide and seek with my kids... Me as the hider, tucked away somewhere they can't find me with a bottle of wine. And some chocolate.

It's hot here people and cabin fever is setting in.  Did you know it's going to be 108 next Monday?

Hence the stabby.

Anyway... something making me particularly crazy lately is diabetes for many reasons.  So here is my list of D-things making my butt itch today:

1. Why the freaking hell does our supply company cover up the expiration dates on Elise's test strips with their prescription label?  Don't they know I have this weird need to organize our supply cupboard by date?  The only way I can figure out the date is to RIP OPEN EACH AND EVERY BOX.  Kill Me.  Kill me now.
 

2. Elise's pump settings are broken.  And I don't know how to fix them.  Everything I do makes it worse.  We did some basal testing yesterday and it showed me her basals are too high.  We tried to test some more today, but multiple corrections haven't gotten her back into range to start the testing.  It's almost dinner time and the poor girl still hasn't eaten lunch.

3. Our last two dex sensors have been waaaaaaay off. Like, 100 points at times off. A call into dex had the guy lecturing me that the dex is not FDA approved for the arm... blah, blah, blah.  Never mind the fact that it's the ONLY place we put her sensors and has been for the last three years. And just now the problem arises...

4. Elise just came and showed me this.

So instead of finishing my rant, I'm off to change her pod.  After which, all my other rants will have disappeared into the vast recesses of my brain; never to be remembered again.

So I'm dropping the mic and walking off the stage.  

make animated gifs

BOOM.

*in case the title of this post makes you think I've gone crazy, read this.  The title really has no meaning.  It just made me giggle.

Team Elise Time!

It's hard to believe, but in just a few months Team Elise will be participating it its 8th JDRF walk here in Dallas.  I can still remembering almost falling apart when I took Elise to the walk only two weeks after she had been diagnosed.

The first Team Elise walk... she was so little!

Fast forward to seven years later and Team Elise has participated in 20 walks in 5 cities across 4 countries and 3 continents. How cool is that?

Team Elise Toronto 2015

This year the shirt colour is purple (picked by Elise because it is my favourite colour - how sweet!), and if you live in the metroplex, we would love it if you would join us on September 26... and get a super cute shirt for free!

And if you just so happen to be in Lisbon, Portugal on that day, you can join our friend Tiago.  If you click here, you will be taken to our Team Elise website. You can then click "join" and that will give you all the details on how to join our team.

That time we went to Portugal and walked with over 200 people... all of whom were there for Elise

If you don't live in the area but would like to support us, there are two different ways: 

1. You can donate to the Bionic Pancreas by going to: www.bu.edu/alumni-forms/forms/eng/damiano/ (please enter "Team Elise" in the Comments/Questions section).
2.  Or you can donate to the JDRF by going to www2.jdrf.org/goto/teamelise (click on Donate).

We are so thankful for all the support we've received throughout the years. Thank you to everyone who is helping us turn Type 1 into Type None.