Ornapods and Care Packages: Bringing Hope, Courage, and Strength to the Holiday Season

Wednesday, December 17, 2014

With stomach bugs and flu running rampant just a few days before Christmas, many of us D Rents are living in fear that our kids will get sick and we will end up spending the holidays in the hospital. 

That would really bring out my inner Grinch!

But you know what would be worse?  Being diagnosed over the holidays. 

That was something that I was thinking about last year at this time when I had the idea to make care packages for our local hospital.  I just couldn't stop thinking about how overwhelming that would be.  I mean, it's overwhelming and terrifying any time of year.  Add being inpatient during the holidays... too much.

I wanted to do SOMETHING to make it a little bit better.  So we put together a little bag of goodies and a note of encouragement that will hopefully bring a smile during a very difficult time. 

We enjoyed doing that so much last year that we decided to do it again!


This year we put in notes of encouragement from Sweets and myself.  We added a JDRF bracelet and candy cane (blue, of course) with carb count attached! 


And we made Ornapods!

What are Ornapods, you ask?

Ornapods are ornaments made out of Sweet's insulin pump, the Omnipod. 


Want to make some yourself?  It's super easy... here's how!

1.  Pull the adhesive backing off of the used pod. 

2.  Remove the unused insulin from the pod.  You can use the syringe that you use to fill the pods or you can use just a regular syringe.  Insert the syringe into the same place that you use to fill the pod.  You can tilt it downward to get the maximum amount of insulin out. 

3.  Clean the pods with an alcohol wipe.

4.  Paint the pods.  I chose the cheapest paint I could find!  You might want to look for one with a matte finish or one with shine.  That's up to you!  It may take a few coats of paint to get them to the desired color.


5.  Seal the paint with Mod Podge.  I picked out a sparkle kind this time.  Who doesn't love glitter?!?  This is optional.  I just like the shiny look!

6.  Use stickers to decorate the ornaments.

7.  Use ribbon as a ornament hanger.  Cut to the desired length and hot glue onto the back of the pod. 

8.  We used a silver paint pen to write the date on the back. 

Sweets really enjoyed making these!  She was able to help and do a lot of the work herself - although the painting can get a little messy!  She enjoyed picking out the stickers and the paint colors and the ribbon!

We use these as gifts for teachers, family members.... and our school nurse! 

It may seem a little odd to use your medical trash and turn it into an ornament... and hang it on your Christmas tree...

Sweets even said, "It's kinda funny this was on my tush and now it's on our tree!"

But when you really think about what it IS...

It's what kept my child alive for three days.  It's what gave her the life sustaining medicine she needs. 

That makes it a pretty powerful statement of HOPE and COURAGE and STRENGTH. 

And I can't think of a better ornament...
Or a better way to show a newly diagnosed family that although living with T1 is a difficult, strange, new world... it's not all bad. 

When You Walk The Walk: An Open Letter of Thanks

Wednesday, December 10, 2014

Dear Friends and Family,

As you know, in October we participated in our sixth JDRF Walk to Cure diabetes.  It's hard to believe we've done this six times!

We know that you may be really tired of getting a letter from us each year!  Please know that we are honored by your generous donations.  We know that there are numerous organizations where you could donate your money and we are honored that you chose JDRF.

It's hard for us to ask year after year for you to support JDRF and our families efforts.  But as much as we hate asking for money, what we hate more is watching our daughter fight this disease 24 hours a day for over half of her life.  It's hard to watch her battle this disease day in and day out and know that there is nothing we can do to take it away. 

So we do whatever we can to work towards a cure. 

The best way we know how is by raising money for JDRF. 

This year our team raised a record breaking amount of money!  With your help, we raised over $21, 700!

ARE YOU KIDDING ME?!?

This is the most we have ever raised...  And to do that in year six when we know that each year raising funds gets harder and harder... It's incredible. 

In our six short years, we have raised over $90,000 for JDRF

UNBELIEVABLE

How can we even begin to tell you how much this means to us?  To tell you how much this means to Sweets and her future?

I'll start with walk day...

Walk day to Sweets is almost like a birthday without presents.  She looks forward to this day all year long.  She loves helping design the t-shirts.  She loves thinking up a new team name when the old one seems too babyish.  She loves seeing her friends and family show up wearing her shirt to support her on walk day.

Did you know she eagerly looks forward to seeing each person there?  You may not think she notices.. but she does.  Her eyes light up with excitement each time she sees a new face arrive to walk with us.  Your support means so much.



This year she was thrilled to be able to walk with her friends and enjoy a beautiful fall day.


She was SO EXCITED to find out she won the t-shirt contest! 


She loved dancing and being silly celebrating... even with our canine team members!


Walk day isn't about the money.  Walk day is celebrating our little warrior who fights this disease on a daily basis with no end in sight.

It's after the walk that our focus turns from celebration to motivation and progress. 

We believe in JDRF.  We believe that the research JDRF is funding is going to change the future for Sweets and her life with diabetes. 

And not just one day.  It's changing her life NOW. 

The technology that is rapidly coming on to the market is making living with diabetes safer.  I used to worry about how Sweets would ever be a normal kid and go away to college.  Now... I'm so excited by things like the bionic pancreas and encapsulation that I know I have NO IDEA what life with diabetes is going to be like in ten years. 

We truly believe the each dollar is making a difference.  And so we thank you...

We thank you for making our girl feel so special.
We thank you for celebrating all her.
We thank you for honoring her and all she deals with.
We thank you for giving her the chance to live a long, healthy life.
We thank you for having hope that one day she can live WITHOUT type one.
We thank you for helping not just Sweets but ALL people with diabetes.


These words seem so inadequate. 

Just know that from the bottom of our hearts, we are grateful for your generosity. You may feel like it's just a small amount or just a donation... but it's not.  It's so much more than that. 

It's love. 
It's hope.
It's a brighter future for this girl we love so much. 








Not Too Late: A Video Message From Sweets

Sunday, November 30, 2014

It's not too late! 

Today is the last day to apply for 2015 JDRF Children's Congress! 


JDRF Children's Congress

The 2015 Children's Congress will take place July 13-15 in Washington D.C.  Over 150 children living with type 1 diabetes will gather to meet face-to-face with some of the top decision-makers in the U.S. government. 

Children’s Congress T1D advocacy program that was inspired by a boy from Massachusetts named Tommy Solo. One day, at age nine, he asked his mother, “Why can’t kids go to Washington and tell their Representatives about what it is like to have type 1 diabetes and let them know that we want scientists to find a cure?” His mom and other JDRF volunteers agreed and, in 1999, the first-ever JDRF Children’s Congress took place in Washington, D.C. (taken from the CC website)

This is a once in a lifetime experience. 

Avery was selected as a delegate for the 2013 Children's Congress.  And trust me - if we could do it again, we would in a heartbeat.  It was an incredible and amazing opportunity that neither of us will ever forget! 

She was asked to make a short video about her experience at Children's Congress.  Here's what she had to say...

video

You can also read about our experiences at CC13 HERE.

It's not too late!  The deadline is tonight. 

I'll let you in on a secret... We filled out our application the night before.  She wanted to try for it badly... J and I were worried she might be a little young.  But she wasn't.  She was right! (Don't tell her I said that!)  And I'm so glad we did it!

Seriously - go for it!  Click HERE to get all the info and apply now. 

Don't pass up this opportunity!

Good Luck!

A Blast From The Past

Friday, October 31, 2014

HAPPY HALLOWEEN!

I was going back through old posts yesterday looking for pics of Sweets when she was little and found this little gem!  This was in 2010.  It was our second Halloween after her diagnosis.  I can not believe how little she was!  Her personality, however, is exactly the same!




We hope you have a wonderful Halloween and that you get lots of great stuff to treat lows!

And just in case you need it, here's the link to the JDRF Candy Carb List!

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!**

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!)

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

Monday, September 15, 2014

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

Sunday, September 7, 2014

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

Tuesday, September 2, 2014

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! 

Waving Goodbye: Thoughts from the Bottom of the Beanstalk

Saturday, August 23, 2014

Thoughts at the Bottom of a Beanstalk


Once upon a time there was a little boy named Jack who was about to climb his very first beanstalk. He had a fresh haircut and a brand-new book bag. Even though his friends in the neighborhood had climbed this same beanstalk almost every day last year, this was Jack's first day and he was a little nervous. So was his mother.


Early in the morning she brought him to the foot of the beanstalk. She talked encouragingly to Jack about all the fun he would have that day and how nice his giant would be. She reassured him that she would be back to pick him up at the end of day. For a moment they stood together, silently holding hands, gazing up at the beanstalk. To Jack it seemed much bigger than it had when his mother had pointed it out on the way to the store last week. His mother thought it looked big, too. She swallowed. Maybe she should have held Jack out a year...


Jack's mother straightened his shirt one last time, patted his shoulder and smiled down at him. She promised to stay and wave while he started climbing. Jack didn't say a word. He walked forward, grabbed a low-growing stem, and slowly pulled himself up to the first leaf. He balanced there for a moment and then climbed more eagerly to the second leaf, then to the third and soon he had vanished into a high tangle of leaves and stems with never a backward glance at his mother. She stood alone at the bottom of the beanstalk, gazing up at the spot where Jack had disappeared. There was no rustle, no movement, no sound to indicate that he was anywhere inside. "Sometimes," she thought, "it's harder to be the one who waves good-bye than it is to be the one who climbs the beanstalk."


She wondered how Jack would do. Would he miss her? How would he behave? Did his giant understand that little boys sometimes acted silly when they felt unsure? She fought down an urge to spring up the stalk after Jack and maybe duck behind a bean to take a peek at how he was doing. "I'd better not. What if he saw me?" She knew that Jack was really old enough to handle this on his own. She reminded herself that after all, this was thought to be an excellent beanstalk and that everyone said his giant was not only kind but had outstanding qualifications. "It's not so much that I'm worried about him," she thought, rubbing the back of her neck. "It's just that he's growing up and I'm going to miss him." Jack's mother turned to leave. "Jack's going to have lots of bigger beanstalks to climb in his life" she told herself. "Today's the day he starts practicing for them... And today's the day I start practicing something too: Cheering him on and waving good-bye."

--Author Unknown


This is a little story that I send home with my students on the first day of school. I think that it's so true and so appropriate. And as I read it, I realized how true it is on an entirely different level.


As parents of children with diabetes, we feel the same worries as other parents. We worry about our children's safety and how they will acclimate to school. We wonder if they will behave and if they will miss us.

But we have other things to worry about, too.


Scarier things.


We worry about mealtimes, insulin doses, if anyone knows how to treat diabetes, if our children will alert when they feel low... or high... and if anyone will listen. We worry about hypoglycemic reactions. We worry that the pump will quit working. We worry that the finger stick was not accurate due to dirty fingers. We worry about birthday treats. We wonder if our children will be left out. We wonder if they feel different. We worry that they will be sent to the nurse on their own. We worry that they will start to crash and no one will recognize the symptoms. We worry that they will go low on the bus. We worry that no one knows how to use glucagon.  We worry that diabetes will affect their learning.  We worry that no one really knows what to do to keep them safe and healthy. 


We worry that no one but us takes diabetes seriously.


Yes, our worries are different.


But there still comes a time, whether it's school or diabetes management, where we will have to step back and watch as they climb the beanstalk on their own.


I often think that, at least now, it IS harder to be the one who waves goodbye than the one who climbs.


Of course, I wouldn't have it any other way. I'm glad that while Sweets happily skips and sings through life, I'm the one that's up at night. I'm the one worrying about diabetes and carbs and numbers. And I wish I could take on that burden forever. Because I know that someday, she will take over.


I'm glad, that at least for now, my Sweets is not climbing a very tall beanstalk. I'm glad that I have a little more time....


But even now, I know, my job is to begin practicing the cheering her on and the waving goodbye.


Because no matter how hard it is for us to do it (at the least the waving part), that's our goal. To get our children to the place where they are confident and capable. Whether it's going to school, taking care of diabetes, or handling anything else life throws their way.


And knowing the toughness and tenacity of our kids, I know they are going to be just fine.

And so are we. 

**This is something I post most years at this time.  It's always appropriate and I hope you enjoyed!**

How to #showmeyourpump: Vote for Sierra!

Tuesday, August 19, 2014

You all know that Sweets and I are BIG fans of Sierra Sandison - aka Miss Idaho!



If you didn't get the chance to check out our interview with her, just click here!

I am so impressed with how Sierra is using her platform to raise awareness for type 1 diabetes with her #showmeyourpump campaign and her message that what makes you unique also makes you beautiful! 

That's a powerful message.

And it's especially powerful to a young girl...
who also wears an insulin pump...
and a Dexcom cgm...

A girl who is tired of the questions and stares.  On Sunday, Sweets and her older cousin were at a playground.  A lady asked her cousin if she had a ketchup packet taped to her arm.  Luckily. they thought this was hilarious.  But really....

Seeing a confident, athletic, intelligent... and yes, beautiful woman wearing her pump is a pretty cool thing.  That helps her in a way that my words and reassurance can not.

Seeing that on the Miss America stage?  As one of the top 15 contestants? 

Wow.

So... let's make this happen! 

America gets to vote for one contestant to make the top 15 as the "People's Choice".



Each contestant made her own video introducing herself.  And, as you would expect, Sierra's is full of pumps, D peeps, and overall awesomeness! 

Help Sierra get into the top 15! 

Click HERE to watch her video and vote!

Thanks!!

Just Home Church Me: The Sunday Morning Fiasco

Monday, August 18, 2014

"I'm NOT going back!  You can just home church me!"

This was A's reaction to going back to church after the fiasco a few weeks ago. 

You may remember me mentioning this little incident in my post about our Nightscout/CGM in the Cloud experience.  But maybe I should start from the beginning...

A has always been a little nervous about going somewhere new or doing something without us... if it involves her being taken care of by people who don't know anything about diabetes.  While she's really doing a great job of learning and doing some of her own care, she's not yet able to be self sufficient and she's not confident in her abilities. 

She just feels safer when she knows that the people in charge know she has diabetes and understand what to do. 

That's understandable.

Church is not much different than school.  We have informed the folks in charge about her diabetes.  We created information sheets that explain type 1 and have specific instructions for what to do.  Those sheets stay in her classroom.  Samples of those information sheets can be found to the right under the "School and Other Caregiver Info" tab!

Our church is large but we have a great notification system for when we are needed. 

And we're needed a lot!  They know us at the main desk.  We don't get through too many services without her needing us for something.  I have no idea why... Maybe it's the dancing to the music or games they play or just the air... She can be perfect all day and go to church and need something. 

It has never been an issue.

And she's been in the same room for a whole year. 

Of course, I thought we had just gotten to the place where she felt comfortable.  She wasn't scared that she would need us and no one would listen to her or understand.  We had gone through these scenarios with her when she worried.  We had talked about how she should handle it.  But we had reassured her she would be fine.

*sigh*

We usually go to church on Saturday night.  But we decided to try Sundays because we've had so much going on.  The first Sunday was no problem.  The second Sunday was a disaster.

I don't go in with her to this room.  Unlike the younger rooms, parents drop the kids off at the door.  And I've stopped telling the people about her diabetes.  I hate making it a bigger deal than it needs to be.  I know that, even though she is sometimes nervous, she also doesn't want to be pointed out as different.  I've working on giving her Independence. 

So this week we dropped her off and went into the big room for our service. 

As I was sitting there, I started thinking that she really should take her kit with her now.  She carried it during FFL and it wasn't a problem.  And I could even make a little laminated card to attach to the three rings inside that is a little cheat sheet.  A "If you are this number.... eat this..." kind of thing. 

Our service was over and we went to pick her up.

Jason even commented that he was surprised we had made it through without being needed!

I got to her room and Sweets was standing there waiting for me.  She's usually playing so I knew something was up.

"MOM.  I'm low.  I beeped low and no one would listen to me."

I looked at her Dexcom.

49

FORTY NINE

What in the world....

So I gave her some smarties and asked her what happened.

"I beeped low.  I told the teacher and she said I was fine.  I said I needed you and that I was beeping and they said that my parents could change my battery later.  I went to another teacher and they wouldn't listen either."

So.... you can imagine, right?  The steam rising?  The anger building?  Mama bear mode...

But.... at the same time, I knew we were at a different service than usual and they didn't know her as well.  I knew that they didn't do it on purpose.  I knew they just didn't know better. 

EVEN THOUGH... there's no reason for them NOT to know because the paperwork was there.  EVEN THOUGH... they could have killed her.

I had Sweets point out the lady who she had told and we went over to have a little chat.

Don't worry - I was very nice and kind.  But I did make it clear in no uncertain terms that this could NEVER happen again, that she could have DIED, and the paper work is in the room and needs to be read. 

She was very nice.  She felt bad.  She didn't do it on purpose.  She's just a volunteer.

Which is great and all.... but she still put my child's health in danger. 

I'm trying to be understanding.

I also went to the main desk to talk to the person in charge of the children's ministry.  She, gladly, knew right away that what happened was unacceptable.  She immediately went to the room to talk to the volunteers.  And promised that it would not happen again.  I appreciated her support. 

So, I think the situation has been resolved.  I think the paperwork has been pointed out again and there's been a little education. 

I'm not mad. 

I'm more... tired.  Exasperated.  Frustrated.  Sad. 

Because this is just another reminder that we can never really let our guard down. 

Not even for an hour at church. 

But what is worse than that... is that Sweets doesn't feel safe.

Her fears were realized. 

She did everything she was supposed to do... and no one listened. 

And she is NOT happy about going back. 

But, we think that with having her take her bag and new little cheat sheet... AND with us watching her bg the entire thanks to the Nightscout, she's willing to give it a try. 

Not that she really had a choice, but...

This is just another lesson in this crazy life with T1D...
that mistakes happen.
that people don't listen and do what they are supposed to do.
that you've got to be responsible for yourself.
and that no matter what, you've got to pick yourself up, dust yourself off, swallow your fear and try again.

Even if you are only eight.

Winner Winner Chicken Dinner

Sunday, August 17, 2014

Just wanted to take a minute out of this busy weekend to announce the winner of the Lauren's Hope $50 gift certificate!!

A big THANK YOU to Lauren's Hope for celebrating the blog's "new do" and my Blogaversary with me!  If you didn't win, click over to right side on their logo and you can still shop for a beautiful (or manly) piece of jewelry!  The quality is fantastic and I know you won't be disappointed!

Thanks to everyone who entered and without further ado, our winner is.... 

JESSICA PARK!  

Thanks again, everyone!  Have a great Sunday! 

Our CGM in the Cloud Experience: #wearenotwaiting

Thursday, August 14, 2014

So I drank the Kool-Aid.

You knew I would.  When have I ever NOT jumped into new technology with both feet?!?

I can't help it!  I love gadgets.  I love trying out new things. 

Soooo.... I recently set us up with the Nightscout/CGM in the Cloud.

I'll admit... at first I didn't think we needed it.

And we honestly, we don't.  NEED it.  A's Dexcom receiver can sit on our bedside table and pick her up in her room at night.  It will pick her up anywhere in our house.  She doesn't go on lots of playdates or (ever) with a sitter other than my parents (who text us her numbers and questions all the time anyway).  We are blessed with a great school nurse who takes wonderful care of her at school. 

Jason didn't think we needed it, either.  But I WANTED it.  Just because I wanted to try it out.  And for the times - few and far between (I THOUGHT) that we would use it.  So we discussed....

And then we went to church.  Sweets has always been nervous about church... about them not knowing what to do for her or calling us when she needs us.  Long story short (I'll write more later - Promise!)... Her Dexcom beeped low.  She told her teacher.  She told MANY teachers.  They all ignored her.  And when I picked her up, she was 49 and VERY upset.

That was all it took.

I went out and bought what I needed to set up the system. 

If you want to find out more about HOW this works and exactly WHAT you need... click here for info and search for the CGM in the Cloud group on Facebook.  Those folks are wonderful!  They are full of information and advice.  24/7.  (Seriously, I asked a question the other night close to 1am and got a ton of answers and advice!)  I'm no expert... FAR from it  So go to them for all your serious inquiries!

But, just in case you don't know what I'm talking about (that happens to me a lot!), here's the deal. 

Some very smart people created this system where you can hook up your Dexcom (only Dexcom right now) CGM to an Android phone.  And it will... somehow that I don't totally understand because I'm not that techy... send the info from the Dexcom to a website that you can access from anywhere.  ANYWHERE. 

Let's just pause for a second here. 

You can see your child's (or spouse or friend or whoever's) CGM graph from ANYWHERE IN THE WORLD.  As long as you have Internet access.  So your person can be across the planet and you can still know if she's low. 

BAM! WHAT?!?

And get this... you can get a Pebble watch... and it will put their info ON YOUR WRIST.  All day... Just glance down and get real time blood sugar. 

MIND.  BLOWN.



This is our experience so far....

I.  LOVE.  THIS.

How did we not do this sooner?  This has been amazing in so many ways that I never could have expected or imagined before we started! 

This is what our system looks like...



That is our Dexcom hooked up to a Moto G phone.  I got the phone at Target for $59.  I got the cables on Amazon for about $15 for both.  We were not going to do a phone plan, but I couldn't connect to our home wifi so I went with Ting which is supposedly the cheapest way to go.  We're thinking around $10-$20 a month depending on if I can get wifi working or not!

There is lots of talk about the port on the Dexcom being fragile and the need to keep it secured and in a case that will protect it. 

I can't say that ours seems too fragile... BUT... I'm using the old Dexcom for the "rig" that I accidentally put in the washing machine.  We were out of warranty so we were able to get a new one (Thank Goodness!  That was the last time I was allowed to wash anything... so it kind of worked out nicely for me!)  Honestly, I would have been a lot more nervous about it if we didn't have our "regular" Dexcom as well.  Also, because this is not our "regular" Dex, I have yet to unhook that purple cord you see on Dex.  I think the constant plugging and unplugging can cause issues.  So it's nice to be able to leave it plugged in all the time.  (The Dex gets charged from the phone so charging the Dex itself is not necessary.)

This is how we carry it around...

The first thing I did was put it in A's DS case.  That worked well.  It's nice because it's hard.  But it's kind of big and bulky.  For right now - when I am still the one with the "rig" in my purse most of the time, I wanted something smaller. 

This was our first attempt...

I got this wallet at Target for about $14.  It fits in there snugly and it's smaller than the DS case.  It's leather and I liked the wrist strap.  A liked the purple and the butterfly!  I also like the compartments for each piece inside.  Some people use a smaller cable than the purple one we have - and that can help not take up as much room.  This worked really well for us.  I didn't feel like it was too delicate!

But what I REALLY wanted was a Vera Bradley case.  Because... I just like Vera.  I found one that had a shoulder strap but the cables would be outside and I didn't like that. 

Then I went to a Vera outlet (holy cow) and found this wallet!


It's a little bigger than the purple one in length but smaller in width.  The pieces are not held as tightly... which could make it more fragile... but also keeps it from overheating.  Not that overheating has been an issue but it can get a little warm.   I don't feel like it's fragile.  I also like the wrist strap.  And it matches A's bookbag.  Bonus.

Of course, there are a ton of options here and it's all personal preference.  There are some cool looking hard cases out there!

We thought we might use it off and on...

HAHAHAHA

We have used it non stop since I hooked it up. 

Even when she's in the same room or house, it's nice to just look at the phone or the computer and see her number instead of pushing the buttons on Dex.  (That seems lazy... but it's true!)

Here's what it looks like on my phone...


See that blue line?  That's what is predicted... How cool is that?  We have found it to be quite accurate.  

 Of course, it didn't take but a day before I decided I needed the watch!  So I bought a Pebble!


With just a glance at my wrist, I can see what is going on!  

I thought it might be too much information... but I haven't found it to be that way.  It's nice to look and see... Right now as I'm writing this, Sweets is asleep upstairs and I am keeping track with just a glance at my watch.  As with anything, it's only too much if you let it be. 

The other nice thing about the Pebble is that it will not just alert you to highs and lows but also alert you if it's not getting data for some reason.  Or she's out of range.  And it seems like that happens faster than normal with the regular system.  And let me tell you... when it alerts to a below 55 low - the thing goes insane.  No way you'd miss that.  It about vibrates the rings off my fingers!

Here's some other ways it's come in handy...

We took a little road trip and it was nice to be able to either look at my wrist or at the phone to see what her bg was doing.  Especially because we had upped the basal to fight the inactivity of the car and we wanted to make sure we didn't over do it.  


Today we went horseback riding.  We were going to be out on the trails for an hour.  She's been going low... and breakfast insulin would be peaking... Here's what we did.  We had her wear her "regular" Dexie in her pouch with a few tabs - just in case.  I wore the "rig".  And monitored her the entire time just by looking at my watch.  Amazeballs.


This is me wearing the "rig".  It's all in the Vera case.  I undid the wrist strap and put it through my belt loops and then attached it to the ring on the other side.  It hung nicely at my side - working and keeping her safe throughout the ride! 

Sweets is NOT wanting to go back to church.  She's always been nervous that exactly what happened would happen.  That she would be low and no one would listen.  BUT... because she knows that we will be watching her bg the entire time... she feels safe enough to go back. 

I know that we feel a lot more comfortable with her going to playdates and parties on her own because we can watch.  I don't have to sit in the room during dance or cheer practice.  She is able to have a lot more freedom and we can still make sure that safe. 

We were not going to send it to school originally... but now we are planning on it.  For us, our plan is to have her keep the "rig" in her bookbag all day.  It won't pick her up when she's at lunch or recess or specials.  But that's ok with us.  Like I said, we have been blessed with a great nurse.  We plan on giving her the website so she can see A's bg.  I can see this coming in handy if she's been low or high and she wants to make sure she's responding properly without having to call her out of class.  I can also see this being useful during testing.  And I'm sure that it will be useful at other times that I haven't even thought of yet! 

Of course, the possibilities are endless!  This could be amazing for a situation where there is no nurse... or the person in charge is not doing their job very well.  This could help aid kids to do their own management with the safety net of someone else watching, too.  It can make wearing a cgm a little more discreet. Because you can get texts on the Pebble, it could allow parents to text what to do to their child's wrist.  Seriously... endless possibilities and situations where this would be useful!

This technology is amazing.  Even J, who was very skeptical, thinks that it's definitely been worth doing.

We just feel... safer.  More in control. 

Two things that are priceless when dealing with type 1 diabetes.

We both highly recommend it! 

And we aren't the only ones!  Go on over to Houston, We Have a Problem and check out Laura's vlog about her Nightscout system!  

To read my update on our cloud experience click here!

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