Cara's 6th Birthday, Happy Thanksgiving and A Retest

We got the phone call ... the one that I really thought would came but not for the kid they called about.  My bet was on Cody (is that weird?) but it was Connor who tested positive for 1 autoanitbody at our TrialNet screening.


Autoantibodies are proteins made by the immune system.  Autoantibodies are a sign that your immune system may be attacking the insulin- producing cells in your pancreas. Having these autoantibodies places you at greater risk for developing diabetes.


To do this screening test, a small sample of blood is drawn from your arm at a TrialNet clinic or you can ask us to send you a test kit that you can take to a local lab or your own doctor to have your blood drawn. Then the blood sample is sent to the TrialNet central laboratory for analysis. Taken from TrialNet website


So what is our next step? 

We need to confirm the positive, so Connor needs to do the blood draw again.  I have the test kit sitting in my kitchen, just waiting.  We are waiting for this flu to clear the house before we retest.  Today is Connor's first day back to school in a week, he started with a really bad cough and then the flu hit the house. 

So next Monday we are planning on taking him to the lab.  I have not told him what it was for, I told him we just want to make sure his cold/flu is gone and that he is feeling better.  I don't feel like I need to worry this kid because OMGosh this kid worries about EVERYTHING...and this would make him go crazy!!

ALSO TODAY IS A VERY SPECIAL DAY...

TODAY IS CARA' 6TH BIRTHDAY

and she will celebrate it just like every other kid, cupcakes for her class during afternoon snack, presents and a birthday cake tonight.  She is so excited, she has even more skip in her step today, she HAD to wear a dress to school and paired it with a beautiful little necklace...very cute!!  

Happy birthday to my sweet Cara, I hope her day is as special as she is :)

and of course a shout out to all my American Family & Friends, 

Happy Thanksgiving Everyone.  

I'm so THANKFUL to have you all in our lives.

L.O.W.S and a thought on the artificial pancreas

I have no idea what has happened...

Everything was beautiful....

After a whole day of fighting lows, extreme lows one after the next, I gave up and called the clinic.

We made changes...

A lot of changes, I don't think we left one thing the same...

OK, maybe one little basal rate...

My husband and I fought over the changes...

"Great now she is going to be sky high all weekend" he said.

"Dr. M is going to be pissed that we are changing all of this" he said.


I told him I don't care, I have no idea what the hell is going on with her blood sugar, I'm sick and tired of chasing these lows and I'm making the changes.  If she is running extremely high we can change it back.

He was mad, he just spent countless appointments getting us to this point.  He spent countless hours telling me that "it's O.K. Nic, we will get there, we will get her A1C down".


So I wrote down all of our old basal, bolus, sensitivity rates so if we needed to we could go back.

Because only a few days ago our numbers were beautiful.  I mean amazingly beautiful for 3 days...

Before all this...

So I made the changes.

So I was up 5 times in the middle of the night, 3 of which force feeding food to a sleeping little girl who wanted nothing to do with it.

Finally by 6am a 13mmols.  Amazing to see after a whole day and night with numbers under 5mmols.

Then an 17mmols at breakfast and a look from the hubys... the "I told you so" look...WHATEVER!!

But wait, a 14.8mmols then a 6.4mmols and then...

A 2.9mmols...

54 carbs later and now we wait to see what way diabetes wants to go with this.

I'm just lost and tried and frustrated and sad.  I hate having to call the clinic, I hate catching lows, extreme lows that Cara is not even feeling, I hate second guessing what I think I know...

I HATE DIABETES

This experience does shine some light on something...

The artificial pancreas, amazing technology, life saving technology BUT if you can't afford it WHAT GOOD IS IT?  

Do you want your hard earn fundraising donated money going to a technology you can't touch?

Case in point, we have the amazing Veo, ya the one with low suspend, the one that can predict and stop lows before they happen.  

So why all the lows, why the whole day and night of lows?

We don't have health coverage.  All of Cara's costs comes out of our pocket.  Everything except our amazing Veo pump which is covered by our provincial health coverage.  However CGM's are not covered within this program.

So no CGM right now and the Veo means we still have lows.

What good is the amazing talents of the Veo if you can afford the most important part...

The CGM!!

I'm just wonder how affordable this amazing technology the artificial pancreas will be?

Will Cara still be at risk of being one of the 1 in 20 even with the artificial pancreas available to the public...

Just something I have been thinking about.

TrialNet Results Are In

They are here the results to our TrialNet screening.  I was soooo happy when I saw so much mail in my mail box but as I counted I noticed something

1...2...3...4...5...6...

Wait just a minute

Mine, My husbands, Kailyn's Kirstin's, Kylie's, Cody's and....where the hell is Connor's?

We are now officially waiting for Connor's.  I have not yet gotten a phone call with a positive result and his letter with the negative results could still be in the mail...so we are waiting...UGH!!

I have been anxiously waiting for these results since September 15th when we all took the trip to get screened for autoanitbodies.  HERE'S A LINK to a video of our trip

So what is in our letters you ask "The result of BLANK's screening test was negative.  This means that no diabetes related autoantibodies are present at this time.  This is not a guarantee that BLANK will never develop diabetes.  It  does mean that BLANK is currently at a lower risk than if the test was positive."

When you test positive for autoanitbodies they tell you to expect a phone call.


AND of course I know just because someone test positive for the autoanitbodies it does not mean that they will for sure develop type 1 diabetes.  And I know that just because someone test negative for the autoanitbodies it does not mean that they will never, ever develop type 1 diabetes.

I know this but a negative test allows for a little breathing room.

I just hope that Connor's results are in the mail box tomorrow... fingers crossed!!

Please Stop The Screaming

We have been pumping since August and every 3 days since the very first day of pumping it's time for a site change.  Site change consists of removing 2 sticky band-aid like plastic pieces, one of which has a needle attached.  We use sure T infusion sets see below:

The needle goes into Cara's body and insulin is "pumped" into her body

 

Before pumping we were on MDI (multiple daily injections) which consisted of 5 shots a day with an insulin pen.

Add caption

Cara loves pumping, Cara seems happier pumping, Cara loves eating anything she wants whenever she wants, Cara loves her PINK pump, Cara loves the freedom. I love the control, I love the blood sugar numbers we see with pumping, I love not needing to physically get the pen ready, dial up and inject insulin every time she eats, I love that everything is done by the touch of a button, I LOVE not having to do the math at every meal.

BUT the screaming and fighting is going to trump my happiness of pumping and turn us back onto injections.

Cara hates site change, she HATES everything about site change.  She screams and kicks and fights the whole time we are doing it.  From start to finish...SCREAMING.  She is terrified but of what?

I can inject that kid 20 times and nothing, she does not even flinch but site change once every 3 days and she is flipping out.  The most frustrating thing is as soon as it is all done she looks at me like "OH THAT'S IT, THAT'S ALL"  Yes, Cara that is it we do this every 3 days!

It is almost enough to stop pumping...I said ALMOST!!

Our World Diabetes Day With Postcard

Today is World Diabetes Day and the DOC has been smothered in blue circles, unity, education and love since the start of November. 

Today the kids got dressed in there type 1 shirts and went to school, our blue lights were lit on our house and I made a few post on facebook about the amazing Banting and his wonderful life saving discovery insulin.

Happy Birthday BTW Dr. Banting and I thank you from the bottom of my heart. 

My husband and I tried to do something special for today.  We thought about driving to London to visit the Banting House for an event that was being held.  However I had read a few things on the internet that suggested that the event was canceled, I tried to call to confirm but no answer and that was that. 

I had nothing left in me to try and make this day exciting and special for Cara and our family.  World Diabetes Day seems to bring the worst out in me.  I really have no idea why? I really am excited and I really want people to understand, I really want to be part of the unity, education and love...but there is just something about this day.

Today, for me = ONE BIG FAIL

UNTIL

I opened up my mailbox and found something special from a very special Sophia. 

A little while ago I had signed Cara up for a World Diabetes Day Postcard Exchange  the brain child of Lee Ann at The Butter Compartment

And today the postcard arrived and saved my World Diabetes Day.  Thank you Sophia and Sophia's mom and dad for signing her up and making the most beautiful World Diabetes Day Postcard EVER.

Thanks to Lee Ann for organizing this event and giving Cara and my family something special on this very special day, even though their mom can't get her act together.

Cara super excited to open her postcard

Cara LOVES her postcard, she is bringing it to school tomorrow

NOW I JUST HOPE THAT OUR POSTCARD MADE IT ON TIME TO SOPHIA?

Cara's postcard we sent to Sophia

Patient 13

A part of blogging is sharing information.  Recently I have been asked to share a little information about finding a cure and a doc film.

I click the link from the email and from the very start to the end of this short I was in tears.




Here is a little information about what Lisa and Scott King are up to.


Lisa has had Type 1 diabetes for over 20 years. She's also been a successful filmmaker for over 17 years. But this new project - Patient 13 - is her most personal work to date.

The film is a feature documentary about the race to cure Type 1 diabetes. They are following Scott King – scientist, entrepreneur and Type 1 diabetic – at the climax of his 30-year quest to cure the disease.


They have started a Kickstarter campaign to help launch this film.

There you will find more information about the film as well as a quick and easy way for people to participate.  They believe this documentary has the potential to help this invisible illness gain the level of awareness and visibility that it demands.


Click the link for more information on this project.


www.voxpopfilms.tv/kickstarter

And of course on this 11day on the 11th month I take time to thank the ones who have fought for mine and my families freedom.
 
In Flanders Fields By: Lieutenant Colonel John McCrae, MD (1872-1918) Canadian Army

In Flanders Fields the poppies blow
Between the crosses row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw The torch; be yours to hold it high.
If ye break faith with us who die We shall not sleep, though poppies grow In Flanders fields.

D-Blog Day...The Diabetes Online Community

Today is D-Blog Day and this years topic is : Why you feel the Diabetes Online Community is so important? especially to you personally? Give examples of other diabetes involvement may you have, on or offline, how it helped you etc… How do you think “we” as an online community can band together to reach broader audiences to help even more people living with or affected by diabetes.

I recently wrote a blog What You Don't Know, What I Wish I Did about the signs and symptoms of type 1 diabetes.  In this post I used a side by side comparison of a picture of Cara 1.5 months before her T1 diagnoses and a picture of Cara 1.5 months after her T1 diagnoses.  The difference is staggering, as you can see...

The before picture has long haunted me.  How can a mother allow her daughter to look like this and not know what was wrong with her.  We knew something was wrong, we went to many doctors, they gave us antibiotics, they told us to let the virus run it's course, they sent us on our way with a sucker.

The before picture brought me nothing but feeling of sorrow and failure every time I looked at it, so it was hidden away and not to be seen.

One day I was thinking of some way to bring awareness to type 1.  I was thinking of posting a cute, happy, adorable picture of Cara with some sort of saying "This is the face of type 1 diabetes" or something like that.  As I was looking through my photo album, trying to find the cutest picture, I opened up a photo of Christmas morning back in 08, 1.5 months before we knew anything about diabetes.

Looking at that picture I was disgusted in myself, but I thought this is the true picture of diabetes.  This is what diabetes does to our bodies, this is what happens when we do not produce insulin anymore.  I wanted to educate people, that is what the DOC and diabetes awareness month is all about.

I wanted people to know the difference between living with type 1 diabetes and the disease type 1 diabetes.  As far as I'm concerned this has been a major confusion with the general public. 

I want people to know this is the face of hard work, sleepless night, amazing technology, scientific advancements, education and hope living with type 1 diabetes.

and this is the face of a child with undiagnosed type 1 diabetes.  This is what diabetes looks like.    

So I made the before & after picture and posted it on facebook with the signs and symptoms of type 1 diabetes.  I wrote a post about the picture and shared the signs and symptoms of type 1 diabetes on facebook and twitter.

I won't lie, I was nervous of the reaction the photo would get, is it too much? it is too dramatic? will I receive negative comments about my ability to care for my children? will people question my mothering skills?  But instead of what I feared I got acceptance, I got love, I got understanding and belonging and that is why the DOC is so important to me.

And I also got this comment on my blog post:

Maryam said...

thank you for sharing this information, actually a friend of a friend was just talking about how her daughter is losing weight drastically, so this actually made me tell her to go to the ER, i hope they find out what is wrong with her, but i think it is diabetes. You probably saved her life. More people need to be informed. I new about the being thirsty and excessive urination, but actually did not know about the weight loss. Thanks again. Maryam =) 

and then I got this update on facebook:

A friend of a friend shared a post What You Don't Know, What I Wish I Did  on her fb page and now there is an 8-year old child at Children's Dallas that is now 1 of today's 24 diagnosed with T1D.


So why is the DOC so important to me?  It's my family, it's my understanding, it's my courage and my hope.


Why is the DOC important to others? Because we can make a difference through sharing our stories and educating.


And with this experience I have realized the power in the truth.  Things don't need to be sugar coated, you don't need "cute" for people to pay attention all you need is the truth and the raw hard facts, people will listen.

Thank you Maryam for reading, and seeing the truth in the picture.  My heart and thoughts goes out to your friend, their family and of course that extra sweet child.  May they find a support system as wonderful as I have in the DOC.

 

Artificial Pancreas Project Education, Time & Dates For Canadians

Listed below is information that I was asked to share with all my Canadian T1 peeps.

There are numerous FREE events going on throughout Canada during Diabetes Awareness Month this month talking about the Artificial Pancreas project with the Juvenile Diabetes Research Foundation (JDRF).

Below is a list of events through out Canada that are free to attend.

The events will include an update on the Artificial Pancreas Project by Medical Director, Dr. Henry Anhalt, DO. He will be discussing the evolution of diabetes management technology, updates on technologies involved in the project, and the development roadmap – where are we now, and what comes next.

+ Tuesday, November 8th - 6:30pm – 8:30pm – Calgary, AB, Calgary Zoo - ENMAX Conservatory / 1300 Zoo Road NW Parking at Zoo Administration on South Side

+ Wednesday, November 9th - 6:30pm – 8:30pm – Barrie, ON, South shore Community Centre / 205 Lakeshore Drive

+ Thursday, November 10th - 6:30pm – 8:30pm – St. John’s NL - The Johnson Geo Centre / Celestial Gallery; 175 Signal Hill Rd – kid activities will be provided too

+ Friday, November 11th - 2:00pm – 5:00pm – Halifax, NS - The Discovery Centre / 1583 Barrington St, (Metered parking and MetroPark Parkade nearby) - kid activities will be provided too

+ Wednesday, November 30th - 7:00pm – 9:00pm – Ottawa, ON - Hampton Inn and Conference Centre / Room 106 D100 Coventry Road

All events will include light refreshments.

You can RSVP to Animas Canada Customer Care at 1-877-464-0074 or email at CustomerCare@Animas.ca. You will need to provide your full name, event date and location, contact phone number and any additional guest information.

AN UPDATE: a new event has been added for,

Tuesday, November 29

Toronto, ON

5:30pm – 7:30pm

Oro Restaurant

Humidor Room

45 Elm Street, Toronto, ON

Dinner will be provided

RSVP to Robin Dales by Friday, November 25, at 905-464-4939 or email at rdales@its.jnj.com

So go ahead pick an event and get educated because diabetes awareness month is not just about educating the general public about diabetes; knowledge is power and you need all the power you can get to fight diabetes! 

HAPPY BLUE FRIDAY!

Blue hair and all :)

MY Million Dollar Answer

A while ago I posted a would you rather.  NO, NO not a who would you rather...MAN is diabetes and sex all you people think about??

I posted a question If you had the choice would you rather win 10 million dollars OR have the cure for type 1 diabetes discovered?

Thank you to everyone who commented!!

I told you I would post my answer soon...well, this is as soon as a mother of 6 works... OK!!

And now for my answer:  I would say CURE

WHY?

You might think as a parent with 6 children I might say SHOW ME THE MONEY!

I could do a lot for ALL of my children with 10 million dollars and with the cure I can only help 1 of my children.

Myself and my husband went back and forth about this one night.

He's point was with 10 million dollars you can make sure everyone in the family has a wonderful life, the best of the best!

With 10 million dollars we could get Cara the best doctors, a 24 hour in home nurse, the best technologies and she would have a wonderful life as a 5 year old millionaire.

But in the end for me, there was always one fact that stopped me living happily with my 10 million dollars in my beautiful house, with my beautiful cars, wearing my beautiful shoes, sporting the most beautiful fashions, having my house cleaned by the best maids, meals cooked by the best chiefs and each kid having the best in nanny care...The fact is type 1 diabetes KILLS!

END OF STORY, END OF QUESTION and there is your answer!!

For my husband it may be a different story with a different answer :) but in my mind a CURE wins every time.

And this ad put out by the JDRF has me once again feeling secure in my answer of a cure.  BTW I fully support the JDRF in sharing this very true and very scary FACT with the general public and FDA:

One in twenty people will die from low blood sugar.  In fact, kids and adults are dying every day from low blood sugar or complications caused by type 1 diabetes. Taken from THE JDRF AD BELOW CLICK HERE to view larger.

What You Don't Know, What I Wish I Did

It's amazing what a little hormone called insulin can do...

These 2 pictures were taken only 4 months apart.

The one on the left was from Christmas morning (December) and the picture on the right was taken at our very first JDRF Community Kick Off (April).

Cara was diagnosed with type 1 diabetes smack-dab in the middle of both pictures in February.

I hate to think what would have happened to our extra sweet Cara if we had not brought her to the ER that day in February.  You see, we knew that she was sick, we just did not know with what,

NO ONE KNEW! 

We had brought her to 3 clinics and 1 appointment with her pediatrician and NO ONE knew the symptoms.


We saw the symptoms, we explained the symptoms BUT NO ONE, not even 4 different doctors put 2 and 2 together until the ER visit and thank GOD they did because if they did not Cara may not be here today.

Cara was so sick in February that we later learned that one of our wonderful diabetes clinic nurses who has worked with many, many diabetic clients had to leave the room after taking one look at Cara.  She was in disbelieve, she immediately turned to the doctor and told her to run more test because diabetes does NOT look like this she said, diabetes does not do this to kids she said, there has to be something else wrong with this little girl.

And guess what... DIABETES does do this, diabetes did that to Cara.

There is not a day that goes by that I wish I KNEW and UNDERSTOOD the SIGNS & SYMPTOMS of type 1 diabetes.  So I really would love for you all to read these signs, read these symptoms and know what type 1 diabetes looks like.

Warning signs of type 1 diabetes (these may occur suddenly):

• Extreme thirst
• Frequent urination
• Sudden vision changes
• Sugar in urine
• Fruity, sweet, or wine-like odor on breath
• Increased appetite
• Sudden weight loss
• Drowsiness, lethargy
• Heavy, labored breathing
• Stupor, unconsciousness

If your child exhibits one or more of these symptoms, call a doctor immediately. Facts taken from HERE

Going Blue is Making me BLUE

It is here...NOVEMBER

A very important and really, truly a FUN time within the diabetes community and the DOC.

This is our chance to TRY to help people understand the truth about type 1 diabetes.

It's a very positive time.

It's a time when everyone comes together and you don't feel so alone and misunderstood.

Cara loves NOVEMBER  not only because it is her birthday month but she loves diabetes month and so does the rest of our Clan.  They have a wonderful time helping people understand diabetes.  They love going BLUE.  They love being involved in the diabetes community because it makes them feel like they are helping Cara in a round about way and I love watching that interaction take place.

BUT this NOVEMBER it is taking it's toll on me already, it's not because of  November but the reality of this damn disease.

I'm having trouble with the fact that there is no cure for type 1 diabetes, I'm having trouble with the fact that my daughter must be hooked up to a tiny machine that infuses insulin into her body to keep her alive, I'm having trouble that in the middle of the night I stand completely still and pause before checking Cara's blood sugar to make sure her chest is still rising.  I'm having trouble with the fact that NO MATTER HOW MANY TIMES we say type 1 diabetes is not caused by eating too much sugar, that people with type 1 diabetes will not grow out of this horrible disease, that diabetes is a very serious and life treating disease, that YES Cara can eat that people will still not get it and all the misleading and false statements will follow my daughter and all others with T1D for their whole lives.  I'm having trouble with the fact that as hard as I try she will not have a "normal" life.  There will be fights, there will be losses, there will be breakdowns and there will be pain.  I'm having trouble that most people that are not affected by type 1 diabetes will not give a damn.

I fell like I'm continuously preaching to the choir.  

I'm kinda stuck in a BLUE negative mood and I need to break free or everyone in my family is going to miss out on all the FUN.

And there is A LOT going on this month...

Here is something that made me smile today "MEET MEG" and help her give type 1 diabetes the finger.  Thank you "Meg" and JDRF because giving type 1 diabetes the finger is what I love to do the most.

Please take a little time to surf the web, read the blogs and get involved for diabetes awareness month.

And don't worry about me, I will turn this frown upside down for this NOVEMBER