Let Them Eat Candy: Type 1 and Halloween

Wednesday, October 29, 2014

Halloween is Friday!

This makes me happy because I love Halloween! 

This was 3 years ago... look how little she was!

However, I know that there are some parents our there who do not share in my love for this holiday.  And I know that for some, it's because of diabetes. 

Many of the events of the day that Sweets was diagnosed are a blur.  But I clearly remember being in the car as we drove toward Children's Hospital... to be admitted with a diagnosis of type 1 diabetes... thinking to myself "HOW are we going to handle trick or treating?  Is she even going to be able to go?"

We had no idea what we were in for.  We knew little to nothing about diabetes. 

Why I was worrying about Halloween... in April... at a time like that.... I don't know. 

But I'm happy to report that Sweets has never missed a Halloween Trick or Treat!

Because you know what?  Kids with Type 1 CAN GO TRICK OR TREATING!!!

There is absolutely no reason why diabetes should keep them from this fun, childhood experience.

I know all the candy can be overwhelming... and maybe even a little scary... So here's how we have handled it...

When she was three and four, she didn't even care about the candy.  She just loved getting dressed up and going door to door.  When we got home, we dumped our her loot (which honestly was not a ton) and divided it into piles.  We made a pile of things we could use to treat lows.  Her favorites were Smarties!  Then we made a pile of things she really liked.  Her favorites were Hershey bars.  She hadn't really tried much before that point so stuck with the pure chocolate.  Then she made a pile of the rest of the candy for the "Switch Witch".  The Switch Witch would bring her a small something - a book or a Barbie or something and take the candy!  She LOVED that!

Once she was a little older... she didn't really want to give up all her candy!  And that's fine!  Here's what we've done for the past few years...

This day is still about dressing up and having fun for her.  Last year it was drizzling and windy and we went to maybe 8 houses before she decided it was NOT worth it and went home.  That was fine by me because I wasn't having fun getting wet either!

We still divide her candy into piles.  We still make a pile of things to treat lows.  This is kind of awesome because sometimes we get enough stuff to stock our low cabinet for quite a while!  She still likes Smarties but has now branched out into (red) Starburst and Laffy Taffy. 

She makes a pile of things she wants to keep.  We let her eat a piece for dessert and sometimes send a piece in her lunch as a treat.  She likes this and usually plans out what she's going to eat when!  But we still usually throw out some of that candy she's lost interest in around Christmas. 

She also makes a pile to "sell".  Her dentist does a buy back where she can take her candy and sell it to them!  They donate it to the troops!  They weight the candy and pay based on weight.  A dollar a pound.  And they get their money in the form of gift certificates to Toys R Us.  She LOVES this!  It's a neat little party they have at the office and she absolutely loves getting a gift card! 

I think going Trick or Treating and participating in this holiday is really important for our kids.  And here's why...

We tell our kids all the time that diabetes does not have to hold them back.  It does not have to keep them from doing anything.  They can still play sports or cheer or act or hang out friends. 

We tell them that moderation is the key. 

We tell OTHER people that "YES, THEY CAN EAT THAT!"  We even get annoyed that other people tell our kids they CAN'T have something because they have diabetes. 


So what message does it send to say no to Trick or Treat because of diabetes? 

You can go trick or treating and have a successful Halloween with Type 1 along for the ride.

Does Sweets want to sit down and eat all of her candy?  Sure.  What kid doesn't?  But we tell her that we wouldn't let ANY kid do that.  It's not healthy.  It will make you sick.  It has nothing to do with diabetes. 

This made me laugh...

Is counting carbs for those little things without nutritional information a pain?  YES!  But... I found an awesome link to a list of candy and their carb counts!  JDRF put together a great list... Click HERE for the list!

This is what it looks like...

I worry that by saying NO, we would be setting ourselves up for failure.  For rebellion.  For food sneaking.  For resentment. 

Could all those things happen anyway?  Of course. 

It's just always been my goal... since that day in the car on the way to the hospital... that we would find a way to let her be a regular kid. 

The interesting thing, to me, is that this year Sweet's has a LONG list of things that she CAN NOT EAT... because of her spacer.  The orthodontist said no chips, no popcorn, nothing chewy, and nothing too sticky.  She is NOT happy about this.  But it has NOTHING to do with diabetes. 

So, if you're worried about Trick or Treat or you've never let your T1 experience this, I urge you to think about it. 

There's nothing Type 1's can't do...
So Let Them Eat Candy!

** This is my opinion.  This is what works for my family and my child.  So take it with a grain of salt drop of insulin and do what works for you! **

Nothing to Fear

Monday, October 27, 2014

It's that time of year where spider webs cover bushes, pumpkins sit on door steps and ghosts swing from tree branches.

HALLOWEEN

I love Halloween.  I love getting dressed up and watching Charlie Brown and going trick or treating.  I love the spooky shows on television and even some (mildly) spooky movies.  The original Halloween is my favorite. 

Last year we were at Disney World for the Not So Scary Halloween party.  That was PERFECT!  Mildly spooky.  Mickey and Minnie.  Tons of super cute decorations. 

Just the right amount of fear for me! 

Which is not much.  I like spooky (We even have a black cat named Spooky!) but not scary.  I won't go to a haunted house.  I'm not into FEAR. 

Maybe because I live with enough it without adding more in. 

Do you live with fear?

I sure do. 

I'd love to blame it all on diabetes but I can't.  Truth is, I've always been a worrier. 

But FEAR... that's something different. 

FEAR definitely entered my life with Sweet's diagnosis. 

In that one moment, as much as needles and test strips and insulin and carb counts became our new normal.... So did fear. 

What is wrong with her?
Is she going to die?
What if I do something wrong?
Will she go blind?
Will she lose a limb?
Will she have a heart attack or stroke?
Will she have a long, full life?
Will complications come?
When will they come?
What if I can't get her blood sugar down?
What if I can't get her blood sugar up?
What if she has a seizure?
What if she has another seizure?
What if the seizures affected her brain?
What if the low blood sugar has affected her growing brain?
What would she have been like without diabetes?
What if she rebels?
What if she sneaks food?
What if she uses withholding insulin to lose weight?
What if she drinks and doesn't realize how dangerous that is for a type 1?
What if she wants to live alone?
What if wants to go away to college?
What if she doesn't want to go away to college or is scared to live alone?
What if I don't hear Dex alarm?
What if I miss a low?
What if she's low and no one knows how to take care of her?
What if she wants to go to a sleepover? 
What if no one invites her to a sleepover?
What if diabetes affects her school work or her learning?
What if I don't wake up at night to check on her?
What if SHE doesn't wake up?

These are just some of the fears I've had over the past few years.  

All of these fears swirling around in my overly full brain of numbers and carb ratios and basal rates. 

It can be too much. 

It IS too much. 

I don't know how to make it stop. 

I used to think that once we'd been at this awhile, the fears would go away. 

But now I know that they don't.  I don't think they will ever go away.  They just change and morph into new beings.  New fears that come with a new stage of this journey of raising a child with type 1 diabetes. 

While I don't know how to make them go away...

I have learned how to live with them. 

And how to not let the fear rule our life. 


Honestly, if  you asked Sweets, she would probably have no idea that I have fears about diabetes.  Or at least not as many as I actually have!  I hide them well. 

I remember shortly after her diagnosis, another D Mama gave me this advice.  "If you would have done it before T1, you should do it after.  Don't let it be a reason to say No."

That's hard, of course.  For many reasons.  One being that with only one child - I don't know what I would have been ok with if diabetes wasn't in our lives.  But that's a blog for another day. 

Still... it's good advice. 

And my mantra has always been that we will make it work.  It may be harder.  It may take more planning and preparation.  It may push me (way) out of my comfort zone.  But if it's something she wants to do... we make it happen. 

Diabetes will not limit her. 

And that's the only way I know of to win the battle with fear. 

One day at a time.  One decision at a time. 

Refusing to let it rule our lives. 

So, this Halloween, I urge you....

If you battle with fear like I do....  don't let it win. 

Let her have the treat.
Let her go to the party.
Let her sleep over at a friend's house.
Let her eat the pizza.  And ice cream.  
Let her handle her care as much as she can and wants.
Let her join the team.
Let her stay after school.
Let her be crazy active even though you know it's going to be a nightmare to manage.
Let her try that new pump she's interested in.
Let others handle her care.
Ask for help.  And accept it. 
Push the worries and fears and what ifs about the future and complications and such far, far from your head. 

That's how we win this battle. 
Day by day.
Minute by minute.
Bg check by Bg check.
Decision by decision. 

Be Brave. 


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!**

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