This Is Why

We are gearing up for our sixth Walk to Cure Diabetes.

Six years.

In some ways it feels like our first walk just last week.  And in others it feels like diabetes has been a part of our lives forever.

Each year it gets harder to get people involved.
Each year it gets harder to raise money.
Each year our numbers dwindle.

The "novelty" has worn off.  People are tired of us asking for money.  People are tired of hearing about type 1 diabetes.  Sweets is no longer the cute little toddler she once was.

And you know what?

I'm tired.  Doing fundraisers and organizing a walk team takes a lot of effort and energy.  Time and energy I don't have.

And you REALLY wanna know what?

Blogging takes a lot of time and energy, too.  So does volunteering for JDRF.

But we are still walking.  We have a team.  We are raising money.  We have a REALLY cool fundraiser planned for this weekend.

I'm still blogging.  I'm still volunteering.

And this is why...

An 8 month old baby girl passed away recently from undiagnosed T1D.

I get so upset when I hear about this.  NO ONE should die from undiagnosed Type 1 diabetes.  It is SUCH an easy test.  In my opinion, it should be a regular part of well child visits.  Pediatricians should know more about this disease - this epidemic - and keep it in mind when they hear symptoms that sound familiar.

I was the one who asked Sweetpea's pediatrician about type 1.  He said it was the flu.  If I had not mentioned it... If I had only told him the symptoms with out saying "diabetes"... the increased urination, thirst, exhaustion, lethargy, irritability and vomiting... We would have gone home.  She was in DKA.  She could have died.  She could have easily been a victim of undiagnosed T1D.

This is why...

An 8 year old local boy passed away from complications of type 1 diabetes.

I don't know the details.  I'm not sure I really want to know the details.  I believe is a hypoglycemic episode over night.  But I'm not sure.  And I'm not sure, for me, the gritty details matter.

What matters is that an 8 year old child died from this disease.

Type 1 Diabetes kills.

It kills now.  It kills even though.  It kills in spite of.  It kills because.

You don't have to be old.
You don't have to have lived with the disease for years.
You don't have to have poor control.

It doesn't matter if you check religiously.
It doesn't matter if you are active and healthy.
It doesn't matter if you do everything right.

In spite of good control...
In spite good health...
In spite of meters and pumps and cgms...

Diabetes kills because it can.
Diabetes kills because that's what it does.

That's why.

Even though people aren't as interested...
In spite of the fact that people are tired of us asking for money...
Even though our walk team is a third the size it was the first year...
In spite of how tired I am...

WE ARE WALKING.

and

WE ARE RAISING MONEY.

Because people are dying.

Every day.

People like Sweets.

And I may not be able to control diabetes... But I am going to do everything in my power to help us find a cure.

I'm not naive enough anymore to think that it couldn't happen to us.  That it won't happen to us.

It can.

And my choices are to ignore that reality.  To put my head in the sand.  To pretend this disease is no big deal.

I can live my life in fear.  I can let my fear keep her from living.

Or...

I can refuse to let our lives be ruled by fear.
I can get involved.
I can talk about T1D anyway.
I can ask for money anyway.
I can walk anyway.
I can volunteer anyway.
I can advocate anyway.

Because I don't have the luxury of pretending it's nothing.
Because I don't have time to mess around.
Because I can't let myself get distracted.

Because people DO care.
Because every little bit helps.
Because no donation is too small.
Because no team is too small.

Because it matters.

Because people are dying.

Because it's time for cure.

This is why.

** This was originally posted last year around walk time.  I just happened on it today and it felt as true today as did then.  So I thought I'd share it again!**

Expanding Our Horizons

Last week Sweets got a spacer - or palette expander - at the Orthodontist. 

In case you don't know what that is, I'll show you.  It's a little gross but we all live with Diabetes and blood and sites and stuff so I think you can handle it.

 

There it is... that little contraption is hard wired into her mouth for next 6 months.  The good part is that unlike previous designs, this one does not need to be tightened.  It works on it's own and the tightest it ever is on the first day.  

 

She got to pick the design.  She chose rainbow sparkles.  Is anyone surprised?!?

What I WAS surprised about was how much it affected her blood sugars.  

She said that it didn't hurt... it just felt weird.  She sounded funny and her speech was really slushy for the first few days.

The good part is that she wasn't at all embarrassed about this.  She was happy to show everyone her new "thing".  I guess diabetes makes you pretty used to stuff like that.

BUT... because it felt weird, she wouldn't eat. 

The first night she went low... no pm snack and very small and early dinner before her appointment. 

She's not allowed to eat most chewy candy - like Starburst or Laffy Taffy.... you know, what we mostly use to treat lows.  She was refusing to chew.  So juice was our only option. 

But she was having a terrible time drinking it!  Half of the first juice box came pouring out of her mouth.  I was not amused.  There were tears.  It was a wonderful night.  Not.  

She lived mostly on yogurt and soup for a few days.  And boy, did that mess with her bg. 

Obviously, our basal rates are off. 

Because she was low, low low. 

We pulled back all her basals.

And she was STILL 46 TWICE at school.

I thought maybe the expander had somehow triggered her pancreas to start working and turned off the autoimmune attack.  

No such luck.

It was a tough week.  She refused to eat anything with any substance.  She finally started eating mashed potatoes and very soft muffins. 

She had a small breakdown when she realized she was going to a birthday party and probably couldn't eat the cake. 

For the record, I think she COULD have eaten.  But she was afraid to push it... She did end up eating the icing off the cake and taking a few bites so she was happy. 

Anna and Elsa made it all better, anyway! 

(Pretty cool party, huh?!?)
 

The crazy thing is... I didn't even bolus for half of what she was eating.  And she was STILL LOW! 

At the party, talking with other parents, I had another one of those "alone in the middle of a crowd" moments.  

Some of them had been through the expander thing with their kids.  They were all sharing stories and talking about what their kids ate...

And although I could relate in one way, I couldn't relate totally.  

Because my kid can't just choose not to eat anything but ice cream for days and it be no big deal.  

Because my kids MUST eat or drink sometimes - no matter her mouth feels like.  

There's so much involved with counting carbs and eating meals that have protein and fat as well as carbs in order to help bg stay steady.  There is so much that is unique to each person and how food affects their bg.  

And disrupting that delicate balance can just throw you for days. 

The good news is that now she's eating normally. 

I had to laugh when one night she yelled out, "MOM!  I can CHEW!"

And her bg seems to be back to normal and we've changed her basals back to what they were pre-orthodontist. 

And I have just another example in an incredibly long list of ways that my little T1 is a heck of a lot tougher than she might look!  

 

On Her Own: First Steps Toward Freedom

Last weekend we had a big FIRST in terms of diabetes.

Last weekend Sweets went to a birthday party BY HERSELF.

No mom hanging out.  No adult there who knew how to count carbs and bolus. 

Just Sweets, her kit, and our Nightscout. 

This was big.  I mean BIG. 

Just last week I wrote about how Sweets was nervous to go to a party without me there.  But she's growing up...  And she's getting more and more comfortable and confident. 

It may not seem like a big deal to some.  In fact, an 8 year going to a birthday party alone for the first time probably seems downright odd.  But for those of us who "know"...  It's a big step.

It all started at gymnastics when she ran into a friend from her class last year.  Her friend invited her to the party.  And Sweets really wanted to go.  Which was a little surprising to me!  Not that she wouldn't want to go to the party - but that she was so willing to go on her own. 

I've met the mom before.  This little has been to our house for playdates and came to Sweet's party last year.  So we chatted about it and I just asked her, "So tell me, honestly, are you comfortable having her with her diabetes?"

"Of course!"  she said.  "Just tell me what to do!  You can even write out detailed instructions.  I don't mind!"

Well... ok!

I asked Sweets about it later.  Asked her if she wanted to go.  And if she wanted to go knowing that I would not be there. 

Her answer was an immediate YES!

I told her that we could have the Nightscout up and running so we could be keeping an eye on her.  And she could take one of our phones with her.  And call us or text us if she needed us or when it was time to eat. 

She was 100% on board with this.  In her very grown up way she said, "I think this would be a good first step for me."

I thought so, too! 

So, we made a plan.  She would keep her rig in a her purse that we had originally bought for her kit.  She would also keep one of our phones in the bag.  And she would wear her other Dexcom.  Her kit would be left with birthday girl's mom.

So... how did it go?

It went great! 

Were there issues?  Yes.  Was it perfect?  No. 

Was it worth it?  Without a doubt!

Even though we told her that she needed to be close to the rig the entire time, she ended up going out of range a few times.  We also realized that they live in a little valley where our phone signal wasn't the best.  So there was an issue with the phones and with the rig being able to get a signal.

But... it was still a success! 

Sweets sent us texts of what she was eating...

She was on the low side so that cookie came at a perfect time! 







And being able to monitor just by looking at my wrist was incredible! 

(To read about the Nightscout/CGM in the Cloud.... what that this on my wrist is, click here and here)

But by far, the best part was that she had a great time!  I think that's pretty obvious in this picture!

 

And felt so proud of herself that she was able to do it on her own! 

And we're pretty proud, too! 

(btw - she's already planning her next outing... without us!)

Why It's a Big Deal: Miss America, Insulin Pumps, and T1D

I remember watching Miss America when I was little.  I always wanted Miss Ohio to win.  She never did. 

I haven't watched it in years.  Really had no interest at all. 

Until this year. 

You know why...

It's all because of Sierra Sandison, Miss Idaho.  And her insulin pump!

I was immediately captivated by her story.  How she was unsure about wearing an insulin pump on stage.  Unsure about putting her disease out there, front and center.  Unsure how people would react.  Unsure if it would make her less beautiful. 

But she wore it.  And she rocked it. 

And she has since encouraged others to #showmeyourpump. 

We had the opportunity to talk to Sierra shortly after her crowning as Miss Idaho.  You can read Sweet's interview with her here.  They talk about diabetes, fashion, and everything in between.  And it was then that we realized that Sierra is as nice and kind as she is beautiful. 

I love her platform that what makes you unique makes you beautiful.

So tonight, as I type this, I'm watching the Miss America pageant.  For the first time in years.  Because Sierra had the courage to show her pump. 

But me watching isn't the story here.  Not at all.

Because as cool as I think this is... there's someone who thinks it's even more spectacular. 

My little girl.

Tonight happened to be one of those nights when her pod change and Dexcom change fell on the same night.  She's been emotional all day.  It's probably because she's tired.  Because of all the lows.  Because she got her palette expander last week and her mouth is sore and she hasn't been able to eat much of anything.  Because her basal rates are obviously off. 

Anyway, she's been in tears.  And having two site changes just pushed her over the edge. 

Until she saw Sierra and her pump on the Miss America stage. 

And all that other stuff just fell away as she sat captivated. 

As I was inserting her Dexcom into her arm and inserting her Omnipod into her tush, it hit me again how important it is for her to see someone like her going for her dreams. 

Here is my little girl wearing an insulin pump on her body and a cgm on her arm.  Even with the improvements in modern technology and devices getting smaller and smaller, they're still there.  She's still wearing something that sets her apart and makes her different.  Something that still raises questions and elicits stares. 

That can be hard for anyone.  But especially a little girl.

A little girl who is not only trying to figure out this whole growing up thing but doing it with a disease that's never going away.  A disease that demands attention 24/7/365.  A disease that makes her different. 

So seeing an insulin pump attached to a swimsuit on the Miss America stage... that's big. 

It shows her that she doesn't have to be embarrassed.  She doesn't have to hide it.  She doesn't have to feel ashamed.  She doesn't have to feel alone. 

Because she's not.

Thank you, Sierra.  Thank you for speaking out for people with diabetes everywhere. For educating about type 1 diabetes.  For having the courage to #showmeyourpump.  For redefining typical beauty standards.

And for showing my little girl that she can do anything she sets her mind to.  And that she is beautiful no matter what. 

The Haves and Have Nots

Back in March, Sweets turned EIGHT!  Can you believe it?!? 

She wanted to celebrate with a mermaid inspired party at our house.  I wanted to go someplace else where someone other than me would do all the work.

Guess who got their way?

It was a fun afternoon filled with friends, food and fun! 

I kept the girls busy with projects.  We made a beach in a jar.

And we painted our own tshirts.

And, of course, there were snacks (precounted out for correct carb amounts)!

 

And CAKE!

 

Sweets had a wonderful day with her friends!  One of the best parts, however, was when it was time to eat.  I simply announced, "Who ever needs to check her blood sugar, do it now!"  And not just one but THREE little girls ran for their kits. 

 

If you look close, you can see all three are checking their bg!

I went a little crazy counting carbs for everyone and making sure she was bolused for the correct amount!  In fact, I texted Meri later and said... "Lady... mad props.  I don't know how you do it!"

But what an incredible experience!  We are so fortunate that Sweets has friends with diabetes.  And even more so that they are the same age and in the same class!  I love that she has that feeling of "same". 

A few weeks later, she went to another birthday party.  This was for a friend who she has known since birth.  They aren't super close anymore but are definitely still friends.  She knows this girl's mom well.  But the difference in the parties was stark. 

This party was at an art studio.  Sweets was SOOOOO excited!  Knowing this mom like I do, I knew I could leave her for a bit and she would be fine.  I thought I might give Sweets some space and sit in the car until they were ready to eat.  The mom could text me when they were ready. 

Sweets was having NONE of this.  She wanted me to go in with her.  She wanted me to stay. 

I had no problem doing this.  Like I said, the other mom is a friend and I had no problem hanging out and talking.  But it worried me.... Why isn't she comfortable with me leaving?

She had a great time!  She, of course, knew the birthday girl as well as a girl from her class last year and one from her cheer squad.  But she seemed nervous when it was time to eat.  They had Peeps... something that is a rare treat for her.  Her eyes got big as she looked at me - silently asking if she could have one.  I said yes... it's a party.  Go for it!  She had that and Doritos and a hot pink cupcake!  Party food at it's finest!  She loved the painting.  But seemed a little uncomfortable the whole time.

I asked her about it later. 

"Why didn't you want me to leave, A?  You would be fine on your own for an hour or so." I said.

"I know.  I just wanted you there.  They don't know about diabetes."

"You'd be ok for an hour.  And I'd be right outside.  Birthday Girl's mom knows a little and can always text me.  And you know what you're doing.  You'd be fine!"

"Yeah.  It's just different if it's H's mom or K's mom." (Those are other T1 girls.)

It just made me aware of how different things can be.

Even seemingly little things like parties and play dates.  Which actually aren't that little when you're eight.

The Haves and the Have Nots. 

These are the things that we don't always think about.  Being the only one at a party with T1.  Having to test in front of people who don't know.  Figure out carbs.  And what if you go low?  It's stressful.  I can see how she would feel more comfortable with me there.

We are working on this.  I want to give her a little space.  I want her to feel comfortable. 

Baby steps. 

We will get there.

We're already well on our way... 

She just asked me, "Mom!  When can I go play at M's house?  Like by myself.  Without YOU there?!?" 

CGM in the Cloud: An Update

As you may know, we recently hooked our Dexcom up to the "cloud" and started monitoring Sweet's blood sugar from our phones and wrists in real time.  You can read about our original set up here. 

Since then, we've had some new experiences so I thought I'd share and give you an update!

Sweets went back to school last week.  We decided that we would just leave the rig in her bookbag during the day.  We knew that it would not work when she was at lunch, recess or specials but decided that was ok.  Then we found out that the third graders would be switching classes!  So she's spending half of her day in the classroom next door.  We didn't think there was any way it would pick her up through the cinder block walls!

Still, we decided to stick to our original plan.  For us, it works.  We trust our school nurse and the plan we've had in place has been working well.  We decided it was just easier to leave it in her bag.  She has less to carry around, less to worry about, and less to possibly lose!  And guess what?!?  It DOES pick her up when she's in the classroom next door!  So we can still get her bg most of the day and we know that even when we can't, she's in great hands and our plan works well!

I wish you could have seen our school nurse's face when we showed it to her!  She also has access to the website.  I'm not sure how much she's used it yet... but I can see it coming in handy when she's wanting to make sure she's come up from a low, during testing, or just for a quick check in during the day. 

I have to say, it's pretty amazing to be able to see her blood sugar while I'm at work.  Instead of wondering about what is going on or if she's spiked from breakfast or if she's ok after recess and PE, I can just look at my wrist and I know! 


Having used it for awhile now, we have also been able to see it work in other situations like when she's with my parents or during gymnastics class.  Again - awesome!  I think it gives everyone more piece of mind.  I can really see it being wonderful for play dates and during dance class when I'm not there or not in the room! 

We did have one little problem. 

Ok, it was a big problem. 

The port on our Dexcom broke!

I don't know what happened.  I had heard that they were fragile.  I don't know if one case was too tight and put too much pressure on the cords or if the other case was too loose and it moved around too much or what.  But it broke.  And then it died. 

To say that I was sad would be an understatement.

I had gotten used to seeing her bg no matter where I was.  And seeing it on my wrist.  Which is way convenient.  I missed it immediately.

Luckily, we were able to take advantage of the one time replacement offer and get a new Dexcom. 

But I knew that I had to find a way to make it more stable. 

So here's what we decided and have been using since then...

We used Sweet's old DS case.  She never plays with the DS anyway, so using the case wasn't a problem!  It's fairly hard on the outside to keep the pieces more protected.  And it has two different kind of pockets to hold the pieces in place. 

This is the outside of the case:

 

And this is the inside of the case:

If you notice, I've also added something new.  That white stuff on the Dexcom is called Sugru.  It's a kind of clay like substance that hardens into a plastic when it is exposed to the air.  I heard about it from the CGM in the Cloud group on Facebook!  I put it around the cord that goes into the Dexcom.  So it holds the cord in place and it isn't able to wiggle around as much.  The pockets also really keep it safer.  The Dexcom hardly moves around at all.  We never take it out of the case.  It's easy enough to switch out the phone when it needs charged without moving anything else. 

So, after a week of school, this has been working quite well!

I can't wait to see it in action once her fall schedule of activities really kicks into gear!  It's not perfect.  There are definitely things that could be tweaked.  BUT... it's an incredible piece of technology to add to our arsenal of tricks!  I'm so grateful to all the super smart people who worked hard to make this technology a reality!