The Warrior: Dexcom Style

Sunday, October 5, 2014

Are you a warrior?

I bet you are - even if you don't consider yourself one!  Or if you don't feel like one all the time!

I live with a little diabetes warrior.  But I bet you knew that!

Now, however, it's official!

Sweets is an official Dexcom Warrior! 

You can check out our story on their website by clicking here. There's also stories from other warriors like Ryan Reed, Kerri Sparling, and more awesome peeps!

 She got to get in on the warrior action when we were at FFL!  She loved the warrior hats!




And she was thrilled to see her name on their signage!


And she REALLY loved doing an interview with Dexcom! 


We have been happy to share our Dexcom story whenever asked!  You can read many of the posts about our Dexcom journey under the tab at the top of the blog. 

Our Dexcom G4 is probably my favorite piece of our diabetes technology.  I honestly don't know how I could ever life without it!  

I get emails all the time with people asking me about it and if we still use and like it.  So, I'm going to answer some of the most frequently asked questions I get about our Dexcom CGM.

How long have you been using the Dexcom?
Sweets has been using it for over 4 years.  She got it about a year after her diagnosis.  It took ONE day.  Ok, maybe one HOUR.  And I was hooked. 

Where does she wear her sensor?
We find that we get the best readings when the sensor is placed on the back of her arm.  Like this:

She has worn it on her tush as well.  But it seems to get pushed and stuff at night and doesn't always do great there.  At first she was hesitant to wear it on her arm with a short sleeve shirt but now she doesn't care.  Her endo has suggested we not use her belly or legs because she's still very petite and just has zero fat in those locations.  (I'm jealous.)


Check out THIS POST if you want to know what that is on her Dex. 

What do you use to hold it down?
We use something called Opstie Flexifix.  We get it from Amazon.  It comes in a roll and we're still using our FIRST roll. You don't use a ton of it and so it lasts.  We don't always have to use the extra tape but find it works great  - especially in the summer when she's swimming a lot!  We do find that it needs to sit on her skin awhile before getting wet.  Like overnight or a good chunk of hours.  If not, it just doesn't stick as well. 

Do you prepare the skin before insertion?
No.  We don't use anything to prep the skin.  She says it itches if I use an alcohol wipe.  So we use nothing. 

How long does she wear a sensor?
Well.... it says 7 days, right?!?  So of course we follow the rules! 

Ok, you know that's not true!  We can get a good 14 days out of a sensor.  We could go longer than that many times but we pull it at the 14 day point.  I don't want her skin to get infected or scarred.  Most of the time the wire comes out and you can't even tell where it was.

Where does she keep it during the day?
She wears it in a pouch around her waist when she's at school.  When she is at home, she takes it off and it sits in our kitchen or family room.  If we go out, I stick it in my purse. 

When she's at gymnastics, I keep it with me.  When she's at dance, she keeps it in her bag in her dance room.  She also keeps it in her bag for cheer practice.  I'm able to keep tabs through the cgm in the cloud (You can read more about that HERE.).

Where do you keep it at night?
We keep the receiver in our room overnight.  We are lucky and have no issues with it not picking her up in our house.  We keep it downstairs with us when she's in bed and we take it up with us when go to bed.  Our bedroom is right next to hers.  However, it really reads from anywhere in our house. 

How is the range?
We find the range to be great. Like I said, it picks her up in any room of our house.  And house is not small.  It can pick her up across the gym at gymnastics.  I don't know how big that is but it's far.  At least half a football field if not more. 

Do you use numbing cream?  Does the insertion hurt?
Yes we use numbing cream.  No, it doesn't hurt her.  Honestly, she does not need the cream.  It's all mental.  There are times when we're in a hurry and leave it on for less than 5 minutes and she still doesn't feel anything.  The G4 is even less painful that the old 7 Plus.  She honestly doesn't feel it most most of the time.  She used to get uptight about sensor changes and so we would try to do it when she was asleep.  But now it's so easy.  It's awesome. 

Is it easy to insert? 

YES!  We did not have a rep in our area when we first started.  We got a trial one and the lady I talked to just told me to watch the demo online.  So I did!  It's so easy!  A little nerve wracking at first but once you do it once - you got it!

Does SHE like it?
Yes.  She does.  It makes her feel safer.  She does not fuss about wearing it at all.  We do have issues from time to time with her ignoring the alarms or saying she's low when she's not... but that has, I believe, more to do with normal kid behavior than the actual device.  She gets burned out.  She just wants to be a kid.  But she knows she has more freedom with her Dexcom and it makes her feel safer so never says she doesn't want to wear it.  

How does her school and/or other caregivers feel?
They love it!  They all feel more comfortable knowing that she has something that will alarm if she's too high or low.  In fact, people are more willing to care for her knowing she has a Dexcom to keep watch!

Is it accurate?
Yes.  We find it to be quite accurate.  There are times when it's off a bit.  It's not 100% perfect all the time.  But it's close.  Most fingersticks are pretty close to what Dex is reading.  Especially after day one.  There are times when she may be falling or rising fast that it has a hard time keeping up.  It can be lag behind a bit until it can catch up. But overall, it's very accurate.  

Does it help you sleep at night?

YES!  I feel totally comfortable relying on it at night.  Because I trust the accuracy, I can sleep and know it will alarm if she's too high or too low.  I do sometimes still set an alarm.  Jason always sets an alarm to check Dex.  But it's so nice to just be able to look at it and go back to sleep!  I can't tell you the piece of mind it has given us.

Do you still do fingersticks?
Yes.  They tell you not to treat based on the Dex number but to confirm with a fingerstick.  Sometimes we do that and sometimes we don't.  It all depend on her number and trends.  If she's at a good number and we know she's steady and we don't need to correct, we don't always test.  We do still do fingersticks, though.  But we do way less than we would if we didn't have the Dexcom. 

Has it helped your control?
Yes.  Because Sweets was so young when she was dx'd, the hospital had us post bolusing her meals.  They never pushed prebolusing her.  She got her Dexcom about a year after her dx - age four.  It was still hard to prebolus.  Honestly, it's only recently gotten easier to prebolus because she knows how to say what she wants while understanding she has to eat it.  Anyway, when we first say that line... that post meal spike... WOW.  Sure, she was back in range after 3 hours.  But seeing how HIGH she went without a prebolus was huge.   We started spilling the bolus right then.  Now we do lots of prebolusing - especially for breakfast and it's really helped keep her in range.  We can watch that curve and now when to prebolus and how much depending on time of day and time of food.  It's really helped us tighten up her control. 

Would you recommend it?
YES!  I can't say that enough.  I can't imagine living without it!  It's saved her life - for real.   And we can't thank Dexcom enough.  Dexcom doesn't compensate us in any way for me posting this or for us telling our story.  I just honestly feel very passionate about this device and how it's changed not only our diabetes management but her life.  I can not recommend it enough! 

This Is Why

Tuesday, September 23, 2014

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

Sunday, September 21, 2014

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

Tuesday, September 16, 2014

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!)

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