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Tuesday, September 16, 2014

Thanks for nothing, One Touch

I'm busy.  I'm sure almost everybody skimming this post can relate.  This time of year is especially exhausting; three birthdays in the span of a week, back to school for all three kids, soccer for two, birthday parties to plan.  Not to mention all the daily stuff that life brings.  

So it's no surprise that my to-do pile could only be described as the leaning tower of paperwork.  I think it's height now surpasses my youngest.  

I wish I were kidding.  

The other day I split it into three piles to try and make myself feel better.  It didn't work.

One of the things on that pile was a vial of test strips.  I needed to put a call into One Touch because these strips were reading dangerously wrong.  Like over 100 points over the actual BG.  Once I tested Elise and her meter said 230.  She was actually 108.  Thank goodness we have the dex and I didn't correct off of that number.

Just for chuckles, I also checked my BG with the bad strips... 198.  Oh dear...

Because we discovered the bad strips during a very busy time for us, I put the vial aside for when I had time to deal with it.  Because we all know that when we call companies about our supplies, they answer promptly and never make you wait on hold for 45 minutes.

One afternoon, when Elise was in school and the boys were napping, I tackled the pile and came across the strips.  They had expired in July and it was now August, but I didn't think it would be an issue.

Wrong.

When I got customer service on the line, I reported the issue and asked if they were the same lot number on some other vials I had called about a few months earlier.  Turned out, they were.  

Towards the end of the call, I asked about them replacing the vial of strips, which were a 50 count.  The guy said that because they expired, that they wouldn't.  I argued that they were not expired when I used them and he replied that I should have reported them when I called about the other lot numbers.  To which I replied that the person never asked me if I had any others and I didn't think to look.

Finally the guy (very reluctantly) agreed to replace them.  A few weeks later, I recevied this in the mail:

"Proven Accuracy"?  Yeah... right

Gee, how very generous One Touch. You replaced a weeks worth of test strips with a one day supply.

Jerks.

Tuesday, September 9, 2014

N-Style-ID: Speaking for my daughter when she cannot

Once upon a time, I never worried about Elise wearing a medical ID bracelet. She was always either with me or her Dad, and we figured it was just not necessary.  Besides, finding a bracelet that was practical for a baby was impossible.

But then one night, as I was trying to sleep, but couldn't, and my mind was racing a million miles a minute; it hit me... What if we were in a car accident and were not able to let the paramedics know about Elise's diabetes? She was on shots then and had no telling signs of type 1.  The next day I was on a mission to find something that worked for Elise.

The result was a very cute princess bracelet that had pink and purple beads, an crown, and fit her delicate wrist perfectly.  Unfortunately, she hated wearing it. I forced her to and eventually the ID part became so scratched up you couldn't even read the information on it.  As she got older, she learned to take it off herself and it was game over.  

But now Elise is older, and able to understand the importance of wearing her bracelet. So when N-Style-ID offered to send us a bracelet, I jumped at it.  Just in time for back to school!

I showed Elise the choices and she was immediately drawn to the Hoot Medical ID Bracelet.  It didn't hurt that it had one of her favourite animals, and it came in her favourite colours too!


One of the things I really liked was the engraving.  Earlier in this post I wrote how you couldn't even read the information on Elise's first bracelet.  The reason was the engraving was hard to see in the first place, and the scratches made it almost impossible. N-Style-ID uses a laser engraver (black ink) on all their non-precious metal ID's.  Plus, engraving is free with your order!
The contrast makes it easy to read

N-Style-ID was founded by Toni Bisell, whose daughter was diagnosed with type 1 at the age of 10.  She had a hard time finding a medical ID bracelet that her daughter would wear, so she did what any creative, driven Mama would do; she did it herself!  N-Style-ID was born and with it a line of fun, fashionable medical alert jewellery.
As well as a ton of different styles of bracelets, N-Style-ID offers necklaces, and pendants for woman, men, kids and teens. And they guarantee quality on all their items.

One thing I was worried about was the clasp, which is a plastic snap clasp (I have no idea what it's actually called, but here's a picture of it):



I thought Elise might have a hard time opening it, but it turned out to not be a problem at all.
The best thing?  She will actually wear it.  And now that she's becoming more independant, it's a good thing she does.



Both Elise and I are very happy with her new bracelet, it feels very durable and I love that the engraving is so easy to read.  If you are in the market for some new medical alert jewellery, you can check out N-Style-ID by clicking here.

***N-Style-ID sent Elise the bracelet pictured above complete with engraving for free, but did not tell me what to think or write.  All opinions are my own.  Elise may have helped too.***

Friday, September 5, 2014

Lucky Number Seven


It's been quiet around here.  Too quiet. Celebrating 3 birthdays in the span of a week will do that to you.  No matter, I'm hoping to get back on the blogging bandwagon soon.  

So many posts to write, so little time.

But for right now I'm just in shock that she's 7 years old.  Tomorrow we will host a joint birthday party for her and Mattias, as well as quietly celebrate the fact she's been not only living with, but living well with diabetes for 6 years.

September is crazy around here.

Monday, August 25, 2014

And she's off!




Today Diabetes decided to give me the big ol' double middle finger.  I woke up to find a nice 235 staring back at me on the meter.  Of course on all the days leading up to this one she had been waking up in range.

But never mind that.  There is a reason I wake up super early... So I can catch these high BGs, pre-bolus, and make sure she's on her way down before breakfast. All in plenty of time to get her off to school.

So that's just what I did.  Except...

Except THIS morning I received a Bolus Interuptus in the form of a shrieking pod.  The PDM tells me all but .05 was delivered, but that's what it ALWAYS says.  I think the PDM likes to lie sometimes.

But all is well.  The pod was changed, breakfast consumed, and one very happy girl got on the bus and made her way to first grade

All the while, I know she's doing okay.  

We've come a long way, baby.

Sunday, August 10, 2014

Just... wow.

I have been meaning to post. Really.

I have all sorts of bionic pancreas updates, videos and information from Elise's experience that I want to share.

But I can't.  I sit down to type and all I want to do is cry.  It has been so incredibly hard to get back to "normal", whatever THAT is.

So I thought I'd share a story instead.  At first it will make you mad.  Really mad.  But in the end I think we can all agree to just laugh.  Because if you don't, you'll cry.

And I have done enough of that in the last three weeks to last me a lifetime.

Yesterday, our family, as well as Laura's, went to a local water park.  Hawaiian Falls hosts two "Champion's Days" every summer.  This is where they open up their park to the families of children with special needs two hours early, and at a discounted price.  Our family of five stayed all day for only $15.  

We love this place.

Anyway, Elise and I were standing in line for one of the slides when a little girl, perhaps around 4 or 5, asked Elise what happened to her leg (where her pod was).  Lately Elise has wanted no part in "talking diabetes", so I explained to the little girl that Elise has type 1 diabetes, and that she was wearing an insulin pump that gives her medicine to keep her healthy.

And that's when the child's mother leaned over and said, "you see, Ava, that is what happens to you when you eat too much sugar."

Wait.  

What???

Was I suffering from severe heatstroke or did this woman just erroneously use my child to scare her own?

Seldom am I rendered speechless, but it was like all of my words just simultaneously blew out of my head while my jaw hung somewhere two stories below the tower of stairs we were on.

I snuck a look at Elise who was giving me some googly eyes while shaking her head, so I turned away from the grossly misinformed woman and knelt down to Elise's level.

"You know that's not true, right?"

"Yeah Mom... I know."

"Do you mind if I explain to her that she's wrong and tell her about the real cause of type 1?"

"No Mom, I don't want you to."

There was a bit more back and forth, but the gist of it was Elise really didn't want me to try and do any educating.  So I didn't, but silently fumed about this woman and her hurtful and mistaken statement.

When it was finally my turn to go down the water slide, I saw the woman at the bottom waiting for her children.  Since Elise was still at the top, I took the opportunity to set the woman straight.

"I just wanted to let you know that type 1 isn't caused by eating too much sugar, it's an auto-immune disease where my daughter's pancreas doesn't make insulin anymore because the insulin-producing cells were destroyed."

What came next floored me as much as what she had said earlier.

"Oh, I know about diabetes... I just wanted to scare my daughter, she eats WAY too much sugar.  We have all sorts of diabetes in my family.  Type 2, type 3... plus they're all Italian."

At that point, I chose to walk away.  Like I told Fred when I related the story to him, "you just can't educate the stupid out of people."

Today I can laugh at it.  But what I really wanted to say to her was, "Listen you erroneous boob... how dare you use MY child and all the hardships she endures just so you can frighten the sugar out of your daughter. Plus, with one incredibly stupid statement, you manage to not only insult me and my child, but all type 1s.  And type 2s.  Plus the Italians.  If I can compare your comment to ALL the comments I have ever heard about diabetes to a garbage pile, then yours is the biggest, poopiest, steaming diaper full of crap in there."

I know this lady was not the norm.  I've had all sorts of responses when I put on my advocating hat. Most people I've talked to will actually listen, and sometimes even thank me for telling them.  But this woman sure took that cake... all 25, full-sugar grams of it.

Which, incidentally, did NOT give my daughter diabetes.

Friday, August 1, 2014

Two weeks... gone in a flash

The pictures are coming fast and furious via text. Fred is already at camp this morning and is getting to hug our little girl for the first time in two weeks.

I am so beyond jealous, it's not even funny.

She looks happy.  Older.  Wiser, even.  But she still looks so little and I can't wait to see her with my own two eyes.


From all reports, she did well.  Loved camp and even the bionic pancreas.  I'm excited for when Fred meets with the team to find out all the details.  Since I can't be there in person, I will be there via Skype. Thank goodness for technology.

These last two week have been glorious.  And terrible.

I am so glad Elise had this oppourtunity to spread her wings and be free and amoung her people.  The fact that she did so well on her own at the tiny age of 6 (and for the first time ever), speaks volumes about her strength, and I am so proud of her.



And yet it has been overshadowed by the loss of our son.  While my heart should be rejoicing, it is instead shrouded in sadness. And I hate that this experience will be forever tainted.

I've been told that in time, that the sadness will grow dim.  I just hope that the joy will shine brighter as we get closer to the bionic pancreas being a reality for all with type 1.

Monday, July 28, 2014

Going Bionic: Our Family's Journey

I'm very proud of my husband's write-up on Diatribe about our experience so far with the Bionic Pancreas trial. 

Please click here to read it!

Friday, July 25, 2014

Darkness

If you are FB friends with my husband, you have already heard the news, but for those of you who are not, it is with immense grief and sadness that I share that we have lost the baby.

My water broke a week ago, but the baby still had a strong heartbeat, so they sent me home to see what would happen.  Unfortunately, the follow-up sonogram on Monday showed the heartbeat was gone and the baby had died over the weekend.

Monday I was induced and delivered a tiny baby boy, who we named Nicolas Daniel.  The pain and heartbreak is indescribable.

I am thankful that we do have the joy of Elise's involvement with the bionic pancreas trial to focus on, and I will do my best to post updates.

Thank you to all who sent messages via FB, or email.  I have read every single one of them with tears in my eyes, knowing that we are loved.


Sunday, July 20, 2014

Who has two thumbs and a bionic pancreas?

This girl!

Meet the first and only 6 year old girl in the world using a bionic pancreas. Proud doesn't even begin to describe how I feel right now.  

I haven't been able to talk to Fred for very long, but by all reports she was very brave and never even blinked when he said goodbye. She already has a BFF in her cabin.

Hopefully I'll be able to do another post soon (or a guest post by Fred), complete with pictures of the bionic pancreas in action.

So amazed by these people and what they're doing for all CWD and PWD!


Saturday, July 19, 2014

Leaving on a jet plane

I don't know how it happened so quickly, but as I type this, Elise and Fred are flying to Boston so Elise can spend two weeks at Camp Clara Barton and participate in the Bionic Pancreas trial. I am still trying to sort out my feelings, and there are so many emotions all at once I scarcely know where to start.

Sadness... Because it's only been a few hours and already I miss her more than I can express. It's like a part of me is gone.

Fear... Will she be okay? Will they take care of her? Will she like camp? Will she make friends? Will she be scared? Will she miss me? Will the trial be too much for her?

Disbelief... Where has the time gone? Wasn't it just yesterday that she was diagnosed and I sobbed my heart out wondering if I could ever let her out of my sight?

But most of all, pride... Because my brave little girl is doing something amazing for her and ALL people with T1 out there. Every parent thinks their child will do great things, but I never imagined this. She is excited about being a "scientist" and a "researcher", and is doing it all without the security blanket of her parents. And she's only 6. The mind... it boggles.

As I hugged her goodbye and tried to physically restrain her from leaving, I did my best to hold back my tears. Because the last thing she needs to see is her mess-of-a-mom blubbering. I didn't have to worry... she didn't even look back as she ran out the door.

I'm trying to be okay with that.


See you, baby girl... don't forget to miss me a little