Her Story, Our Story, Your Story: It's Time to Change the Ending

Saturday, July 18, 2015

What is it about some people that just grab our hearts and don't let go?

There are just some people and some stories that have that way about them.  

For me, and for many others, Kycie's story is one of those.  

I'm not sure why exactly.  But I think it's because when I look at her, I see my own daughter.  The bright, blue eyes.  The infectious smile and giggle.  The curly blond hair.  The innocence.  

And because it's not just Kycie's story.  It's our story, too.  And probably yours.  

I think that's why I've put off writing this.  Because in order for me to write this, I have to go there.  I have to really go to that place where I know that our stories are really not so different.  And that but for a whisper, I could be the parent grieving the loss of my little girl to Type One Diabetes. 

            Kycie - Age 5                       Avery - Age 4                   

Kycie Terry passed away on Saturday, July 11, 2015.  Hers was a life that ended much too soon.  Taken from this world by complications brought on by undiagnosed T1D. 

You can read the first post I wrote about Kycie here.  And you can follow her story and see darling photos and video of this beautiful little girl here

We have been living with this disease for over six years.  In that time, we have gotten further and further from those panicked first few days and months.  The shock has worn off.  The fear has subsided.  Diabetes has slowly seeped into all aspects of our life and become just another part of what we do. 

Her diagnosis no longer feels like it was yesterday.  It feels like it was a lifetime ago.  The days before are foggy and faded.  I can no longer remember a life that didn't include counting carbs and changing sites and needles and blood and millions of test strips.

Until...

Until last Sunday when I read that sweet Kycie had passed away.

And my stomach dropped to my toes.  Tears filled my eyes.  And I was immediately transported back to that April day six years ago when our lives changed forever. 

I knew.  I knew what it was that morning when we walked to the pediatrician's office.  I didn't want to know - but I did. 

He thought it was flu.  After all, her symptoms could have easily been the flu.  And we had just been there weeks earlier for her three year old well check. 

If I hadn't said that I was worried it was diabetes....

We would have gone home.  And she would have gotten sicker. 

She was throwing up.  She was losing weight.  She was drinking and going to the bathroom a ton.  She was so lethargic that she could hardly walk or stay awake.  Her breathing was labored. 

She didn't have another week to wait and see.  She didn't have a couple of days. 

Had we gone home... 

You know what would have happened.

And so do I.

And although on most days it sits at the back of my memories, hidden behind the passing of time and pressing events of now, it's always there.  That knowledge that drops like a rock to the pit of my stomach.  That knowledge that we could have easily lost her that day.  That knowledge that we were so very close to a different outcome to our story and yet, at the time, we had no idea.

It's humbling.  It's sobering.  And it's infuriating.

How did I know?  How did I know to tell the pediatrician that I was afraid she had diabetes? 

I don't know.  I just did.  Somehow I knew the symptoms.  And it saved her life. 

Please understand, I'm not angry at her pediatrician.  He did nothing wrong.  In fact, he listened to me.  She presented like she had the flu.  But he listened to what I had to say.  He listened to my concerns.

And he tested her. 

He didn't say to wait and see.  He didn't say I was over reacting.  He listened. 

And it saved her life.

No, I'm not angry at him.

I'm angry that any child dies from undiagnosed type one diabetes. 

There is no reason for it.  There is no excuse for it. 

All it takes is one drop.  One drop.  To save a life. 

(Or really, a simple urine test would do the trick!  Had Avery had a urine test at her well visit, it would have showed elevated glucose levels 4-6 weeks before her diagnosis.  Before she was in DKA.  Before she was so very sick.)

Today was not the best diabetes day.  But as I was driving Avery and a friend to the pool, listening to their giggles and chatter about braces and water slides and who they had seen from their class over the summer, I felt so thankful. 

I don't know why Avery's diabetes was caught in time and Kycie's wasn't.  I don't know why we got her to the doctor in time.  Or why I knew the symptoms.  Or why I expressed it to the doctor who listened to me. 

All I know is that I am grateful.  The kind of grateful that makes you fall to your knees and sob. 

And the kind of grateful that says enough is enough. 

No more children should die from this disease.  No more. 

It's as easy as testing one single drop. 

I don't know why Avery survived and Kycie did not.  But I do know that I owe it to that sweet little girl and her incredible parents and family to take that gratitude and turn it into action. 

Let's share the symptoms.  Share our stories. 
Check out Test One Drop.  Read their mission and see how you can get involved.




Do it for my child.  Do it for yours.  Do it for Kycie.
But most importantly, do it for the names we don't know.  The kids who have yet to be diagnosed.  Let's change their stories before they even start. 

Traveling With Diabetes: Planes, Cars and Disney Monorails

Tuesday, July 7, 2015

Traveling with diabetes is never exactly easy!  I think diabetes should count as another person because of all the supplies that you obsessively over pack need for your trip!  

We are, by no means, travel experts.  We do, however, travel somewhat frequently.  So I thought I would share what we do and how we pack it all! 

Most of our travel is done by air.  We travel by car a couple times a year.  These trips are about 5 hours in length - so really not all that far considering.  We travel by air at least 3-4 times a year.  We've used smaller, more regional airports and we've used large airports like Reagan, Orlando, Atlanta, and Tampa. 

As always, this is what we do and what works for us.  I'm fond of the saying, "Whatever floats your boat".  But I heard a good one the other day - "Whatever makes your dress fly up!"  So, you know, if this works for you, too - cool.  If not... cool. 

Packing for the trip can be pretty stressful. 

We've got it down to a science now and we know exactly what we need.  But at first, when diabetes was still so new... it was scary.  I was so afraid that I would forget something vital at home. 

Here's the thing I've learned - we never travel to the back country of Africa or anything like that.  We are always close to a Walgreens or some other pharmacy.  We get our supplies (most of them) from Walgreens.  They are so awesome (They are so awesome!  They even sent us a Christmas card this year!  Which means between A's diabetes meds and J's heart meds and my allergy meds - we are there waaaayyy too often.  We don't even have to tell them our names.  In fact, last time she told us we needed our own bin for all our stuff.  Yikes.  But seriously - it's kind of comforting that they "know" us...).  I know they can order or call the doctor for anything we would need.  I also know I can call our endo clinic and they will hook us up.  And I know for things I can't get like that - there's the amazing DOC.  Put out a cry for help and someone will be able to hook you up.  That's pretty comforting, too!

Here are some pics of what we pack and how we pack it:



Our diabetes supply bag for traveling is the picnic thermal from Thirty One.  There are a couple of reasons why I love this bag for this purpose. 
1.  It's not too big and not too small.
2.  It has a nice strap that makes lugging it through the airport easier. 
3.  We can smush it into another carry on for the plane if needed.  Or leave it out. 
4.  It's a thermal bag.  So when we get where we are going, we can use it as a thermal if needed. 
5.  It's cute!

We are usually gone anywhere from 7-14 days and this bag fits aaaalllll of our stuff.  And I pack a ton.  I want to make sure I have enough!  So I always pack way more than I need. 


I pack boxes of strips (again - way more than I need), a back up meter and strips, and an extra lancing device.  I leave all the stuff she uses each day in her regular supply kit.  Sometimes I put it on top of this bag and sometimes I throw it in my purse.  Just depends. 


I pack Dexcom sensors - again, way more than I need.  I also pack the Opsite Flexifix we use to tape down Dex (that's the stuff in the baggie that almost looks like a roll of graph paper - LOVE it.), a tube of numbing cream (because we still use it - even though she doesn't NEED it, she likes to have it.  It's all mental.  But if it makes her feel better, I'm down with that.  That's not to say we leave it on the 30 minutes or whatever it says... Just having it on is all she needs.), and extra glucagon and a mini thermal pouch.  The mini thermal is also from Thirty One and that's where we put our insulin with a freezer pack. 


This is just a little wallet thing that I used to use.  It's the perfect size for the alcohol wipes and adhesive remover wipes. 


 This is another of my many bags.  This one is Vera Bradley.  I put the Teagaderm adhesive in there (we use the Tag to cover the numbing cream.)  Also in this pouch are extra batteries for the meters and for the Omnipod PDM, syringes - just in case, and extra low treats. 

Not pictured are the boxes of Omnipods.  I leave them in the box (I sometimes grab a whole box of Dex sensors, too - depending on the length of our trip.).  One nice thing about Omnipod is that it's all in one!  But if you're using different pump, then you need all tubing and reservoirs and stuff.  When we were using a tubed pump, I just grabbed another bag for that stuff. 

And then there is always this:



This sits out on the kitchen counter with the bag so we don't forget the insulin!!! 

So that's WHAT we pack and what we pack it all IN!

Here's some other things that I've learned or that we do when traveling...

* Juice Boxes - We used to add those to our supply bag when flying.  This caused the most problem out of ANYTHING.  Some places didn't care when we said it was part of her medical supplies.  Some places acted like it was poison and patted us down.  We finally decided it wasn't worth the hassle.  If she really needs juice we can get it once we get through security.  But honestly, she's fine with the other stuff for a flight. 

Speaking of air travel....

* We have a note from our endo saying that she needs all these supplies, yada, yada, yada.  We keep it in that exterior pocket.  We used to get one each time we went somewhere.  But not once in six and half years has anyone, in any sized airport, ever asked to see it.  We just carry around an old one in case. 

* We usually get all our stuff on the conveyor to go through x-ray and then say to one of the workers standing there - "This bag has medical supplies in it."  That's it.  They've never searched it.  Never even paused over it.  Unless there were juice boxes inside! 

* The picnic thermal and all those supplies I was talking about is a carry on bag.  We do not check ANY of our diabetes stuff.  As I mentioned, we can put that bag inside of a larger carry on if needed.  I know this may not be possible if you have more than one person with diabetes in your family.  My suggestion would be to pack as much as you can in a carry on bag and then maybe put your extras in a checked bag for "just in case".  

* We always go through the metal detector and not the full body scanner.  They just send us there - probably because A is a child.  And I always go right behind her.  Sometimes J has to go through the whole body thing and sometimes he doesn't. 

* I never mention that she is wearing an insulin pump.  Or a cgm.  It never beeps.  She just goes through and that's that.  Another awesome feature of the Omnipod!

* Back when she had a tubed pump we sometimes took it off and sometimes didn't.  Sometimes they would swab it or her hands or both.  Sometimes I had to get swabbed and patted down, too.  Which was ridiculous when she was only 3... but then people are ridiculous about doing horrible things and I'd rather the security take precautions.  I will say that everyone we ever encountered was super nice to A.  It would make her nervous and they would go out of their way to make it as easy as possible.  I know some people will ask to pass the tubed pump around the metal detector.  That's up to you...  It's been so long since we did that I'm out of practice there! 

* Sometimes she wears her Dex receiver through the metal detector and sometimes it's in my purse.  Again, we never mention it. 

* Confession - although you are probably technically supposed to turn Dex off during flight (and that probably goes for the Animas remote and the Omnipod PDM) - we do not.  We leave it on.  Same for the PDM. 

* I will often set a temp basal increase for travel.  Especially when traveling in the car - but we also find when flying, she needs some extra basal because in everyday life she does not ever sit still for two hours - let alone five. 

* Some folks have encountered post flight lows.  You can read more about that from my friend Melissa here.  She did some awesome research!  For us, this does not happen.  Maybe it's because she uses the Omnipod.... I don't know.  But I can tell you that for whatever reason, she's not low after a flight.  She's usually on the high side.  Could be her pump.  Could be excitement.  Could be the lack of movement for an extended period.  Could just be a weird thing that is just her.  But - you should read Melissa's blog just in case!

* We don't over share.  I've mentioned this before - and, of course, this is totally up to your comfort level.  But we don't tell the nice people at security and elsewhere that she has diabetes or is wearing devices and things like that.  I imagine it's easier for a child to pass through without a second glance.  But we used to tell them she had on a pump or cgm before she went through the metal detector or explain what was in the supply bag, etc.  And then we realized that they didn't care.  This has been pretty consistent whether in was a huge airport in Washington DC or a small, regional airport in Sarasota.  (Although, for the record, Sarasota has been the pickiest of all - especially with those darn juice boxes!)  Now we don't say it's diabetes supplies, we don't tell them who has diabetes and we don't point out any of the devices on her body.  Nothing beeps.  No one asks us.  And we're on our way.  

* In case you are interested - here are the names and prices of the Thirty One bags I use:
Mini Thermal Zipper Pouch - $15
Picnic Thermal - $35

* Random learning:  We recently went to Disney.  It was HOT.  98 degrees with 98% humidity.  The day we checked out we left our diabetes supply bag with the concierge while we went to the park.  We thought this was better than putting it in a hot car all day.  When we got our stuff, it had not been in the air conditioning as we had thought.  You could feel the heat radiating from the bags.  We were not headed home - just to the beach for another week.  I was worried about our supplies.  Especially the pods.  But everything was fine.  While I don't recommend doing this, the heat didn't seem to bother any of the supplies.  So if it happens, don't freak out!  It may not be a disaster!
*** If you want to know about how we handled Disney in the extreme heat, just leave me a comment and ask!***


* THIS IS WHAT WORKS FOR US!  THIS SHOULD IN NO WAY BE TAKEN AS MEDICAL ADVICE!!!  Sorry, didn't mean to shout.  I just want to make sure you get that just because we do it this way does NOT mean that you should do it this way.  You've got to go with your gut and use your head because no one knows your body or your child's body like you!  I simply wanted to share what we pack and what I've learned in case someone might be interested!  But you know... whatever butters your biscuit!

I used to get pretty uptight when we traveled wondering if diabetes was going to cause all kinds of issues with security and traveling.  But now, we honestly don't even think twice about it.  In our experience, it has always been pretty easy! 

Don't let diabetes hold you back from anything - especially traveling!! 
Go wherever you want to go - and just take diabetes along for the ride!

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