One flu over the cuckcoo's nest

Since December 17th, our household has been a hotbed of germs.  Mostly of the flu-like nature.  I am currently writing this post while recovering from my own battle.  It has left me light-headed and quite stupid, so please forgive anything written that makes no sense.

I wanted to chronicle my family's battle with the flu so that I can look back and see who sick and what was effective as far as treatment.  Plus I'm a little bored and have seen all the Love It or List It episodes that are on today.

Elise
Received flu shot back in October.  Was first one sick.  First trip to doctor showed negative for flu or strep. Extremely high BGs continued as well as fever, so I took her to urgent care.  Flu and strep re-test also negative.  Amazingly awesome doc who has experience with T1 decides to do a urine test. Positive for bacteria. Dx is UTI. As of today, still no flu.

Fred
Second one to fall.  No flu vaccine. Started getting sick on/around Dec. 21. Extreme flu-like symptoms, but no doctor visit.  Is still not feeling well as of today.

Lucas
Received flu vaccine about two weeks ago.  Fever started Christmas Eve. Very cranky with a fever coming and going. Went to doc 3 days after fever started. Flu test negative. Has his moments of feeling well, but still not terrific.

Me
Thought I had escaped the madness, but on Saturday started feeling like I had been run over.  It got to the point where I could barely move because I was shaking so bad and everything hurt.  Managed to get myself to an urgent care where I met quite possibly the world's creepiest doc. Positive for the flu type A.  Put on Tamiflu. Two days later not feeling super terrific, but at least I'm no longer convinced that I'm dying. Never got the vaccine.

Mattias
Our last man standing.  At least he was until yesterday.  Now he has fever and chills.  When he has Tylenol he goes back to his rather adorable self, but once it wears off... watch out! Received the flu mist in October.

So what does all this anecdotal evidence tell me?

• Receiving vaccine well before flu season is best
• Shot seems to trump mist, but...
• ... the mist seems to lessen the symptoms
• Getting yourself some Tamiflu (as long as you're in the proper time frame) will lessen the duration and possible severity
• Doing nothing=being sick longer

 So there you have it, my very unscientific study on our family's battle with the flu. Hope you were able to avoid it (the flu, not my post) and stay well.

The birthday that never came

December 26.

I have been dreading this day.  The day I was supposed to meet my son. I wish it could have been avoided, but the month has carried me to this day, much like a riptide carries one out to sea.   I was helpless against it.

Since July 21, there have been a lot of "supposed to's", but obviously this one is the hardest. My actual due date was January 1, but Nicolas was scheduled to arrive via c-section today.

There is so much I want to say, but losing Nicolas has stemmed the flow of words.  Writing through such sorrow is not easy for me because the emotions are so overwhelming I don't know how to express them.  Not a day has gone by when I haven't thought of him.  I would even go so far as to say not an hour passes without him being on my mind.

The day he was born was so traumatizing (I could seriously teach a class on how not to treat a woman in my situation), that I missed out on really seeing my son and saying goodbye.  The time I had with him was short and is already fading in my mind.  I wanted to write him a letter to say all the things I never got to tell him.

--------------------

Dear Nicolas,

Today was to be your day.  The day I would finally hold you in my arms and our family would be complete. I cannot describe the ache in both my arms and my heart today.

There is so much I wonder about you... hair colour, eye colour, height and weight. But so much more than that.  Who would you be? What would your life become?  There is such sadness in possibilities never realized. I long to see how your piece would have fit into our family puzzle.

Though I only carried you for 17 short weeks, you are forever with me.  I carry your named engraved upon a bracelet on my wrist, your initial graces a pendant I wear, and your soul is forever stamped on mine.

I am sorry. So sorry that I never got the chance to meet you. To look into your tiny eyes and kiss your nose.  I'm sorry for all the snuggles I missed and hours in the middle of the night when it was just you and I. The stories never read and lullabies never sung.

Finally, I want you to know how loved you are.  So very loved.  Your brother and sister still talk about you.  In their world, the span of a week is a lifetime, so it seems you are eternally on their minds as well.  In fact, to them you are a part of the family, just as they are.  Your sister was telling someone just the other day that she has three brothers. 

Merry Christmas Nicolas. The only thing missing is you

And so, my sweet boy, Happy supposed-to-be Birthday.  I miss you.  I love you.  I always will.

Love,
Your Mama

May the road rise up to meet you.

May the wind always be at your back.

May the sun shine warm upon your face,

and rains fall soft upon your fields.

And until we meet again,

May God hold you in the palm of his hand

Odds and bits and pieces and ends

Hello.  Remember me?  I used to blog here.  

It's not that I don't have much left to say, it's that I have so much to say and no time to say it properly.

But I wanted to bring attention (to the one or two of you who still might read this) to some cool (to me) stuff:

Awhile back, Fred and I were asked to take part in a You Can Do This Project video.  They wanted parents of kids who were diagnosed under the age of two to tell their story.  We did and you can see it here at Texting My Pancreas.  Feel free to comment on my awkwardness and dorkiness.  I'm okay with it.

Secondly, Sara, from Moments of Wonderful, is hosting a year-end Best of the 'Betes Blogs.  She put a lot of time and effort into it, so go here and check it out.  Vote.  You may notice that Yours Truly has been nominated in a couple of categories.  You don't have to vote for me, but if you haven't sent me a Christmas present yet, this would do nicely.  Just sayin'

So that's about it.  My first post in over a month.  Hopefully it will lead to more.

After all... my daughter still has type 1, and I still have a lot to say about it.

I'm a Disney Princess!

Okay, not really... but I am a guest blogger on the awesome Lilly Diabetes/Disney blog; T1 Everyday Magic.

Some time ago they asked me to write a post describing how you know you're a T1D parent. I mean, besides the obvious fact that your child or children have type 1.

And some time ago, I wrote and submitted it.  And then forgot about it.  Because that's what I do.  Forget.  Everything.

Whatever.  My kids are fed and I do remember to put on clothes when I go outside.  I call that a win.

So, click here.  Read it.  Let me know what you think or if you have anything else you would have included.

Today

***This is a re-post of a blog I wrote 2 years ago.  It's just as true today as it was then.

This is my daughter, Elise.  She is 7 years old. She loves to play soccer.  Paint and draw.  Read.  She loves to dance and sing.  Making her little brother laugh. The colour pink.  Roller-coasters and waterslides.  She's a girly-girl with a tough side... the absolute best of both worlds. 

She makes me laugh.  Loves everyone she's ever met. Blows me away with how smart she is.  She has the innate ability to drive me bananas, but at the same time; I am so very proud the be her Mom.  And today, she makes me thankful.

Without today, Elise would not be alive.  If it wasn't for today, I would have had to say goodbye to my first-born over 6 years ago.  If today had never happened, this would be one of the last pictures I have of my daughter...

During a month that is supposed to be filled with thanks, I am most thankful for today, November 14.

Because on this day, in 1891, a baby boy was born in a small farm house in Ontario, Canada.   He would grow up and make an astonishing discovery that would save my daughter's life 119 years later.  Not just the life of my daughter, but the lives of countless others too. 

Because in addition to everything I wrote about her above, Elise also has type 1 diabetes.  Her body NEEDS insulin to survive, but no longer produces it. 

It was nothing she did. Or didn't do.

Nothing she ate. Or didn't eat.

There is no cure.  No special diet.  No secret spice.  There isn't a bark that grows on a tree that can be brewed into a tea.

But there is insulin.

Today, I don't have to watch my daughter literally starve to death because of a faulty pancreas.  And that is why I am thankful for today, the birthday of Dr. Fredrick Banting; inventor of insulin. 

He saved my daughter's life.

In memory of Nicolas Daniel

Yesterday was National Pregnancy and Infant Loss Day.  I didn't find that out until well into the afternoon.  It makes me sad that the day that is meant to honour our lost children isn't really talked about. 

Much like the loss itself.

I discovered that there would be a candle lighting close to where I live, so the kids and I went.

I lit a candle and cried for my son.  And for all the little lives taken too soon.

Every cry is a song

Every song is a prayer

And our prayers must be heard

Fill the air

-Hothouse Flowers

There is a lot to love about Leaf & Love

You know what I love about this little DOC of ours?  How innovative we can be.  There are so many cool products out there that only exist because someone with diabetes (or a loved one with diabetes) saw a void, and decided it was up to them to fill it.

Take, for example, Leaf & Love Inc.  It was formed by two childhood friends who became moms-on-a-mission.  Co-founder Sara Williams-Curran's daughter was diagnosed with Type 1 Diabetes at the age of 3.  Sara was frustrated by trips to the grocery store, where she would try to find beverage options for her daughter that were not either filled with artificial sweeteners or sugar

So she and Amy DiBianca (no affiliation with type 1, but wanted something healthy and delicious for her 4-year old son) took to the kitchen to develop a yummy, zero-sugar alternative to all the other high-sugar, empty calorie choices.

Why is Leaf & Love Organic Lemonade better?  Because it is made with all natural ingredients, including 100% USDA organic lemon juice.  They use organic stevia, which is a natural sweetener derived from the leaves of the stevia plant.  Stevia has no calories, a zero glycemic index (meaning no carbs), no artificial ingredients, and NO effect on blood sugar!

In the words of Elise, "you mean I can drink it even if I'm high?  AWESOME!"

Happy girl with her Leaf & Love Lemonade

It is also non-GMO, vegan, gluten-free, and provides 15% of the daily recommended vitamin C.

But most importantly, how does it taste?

Elise loves it. Loves. It. And is so excited that she has a juice box that is all her own.  We love sharing in this house, but these babies belong to Elise.

See that? only 2g of carbs.  Squeeeeeee!

Curious, I took a sip for myself and thought it was quite tasty.  There was a bit of aftertaste that I'm pretty sure is from the stevia, but my taste buds are ultra-sensitive.  Redheads are cool like that.

This past weekend, we took the kids to a birthday party at a bowling ally.  There was pizza, pop, lemonade and cookie cake; a carb-infested nightmare.  When the server announced that there was lemonade, Elise turned her big doe-eyes up to me and asked, "pleeeeeeeease Mom?" Ugh.

Luckily, I'm a planner, and had brought with me a bunch of Leaf & Love Lemonade juice boxes.  She was even more excited about drinking that than the "real" lemonade.  Winning!  

Good thing too, she consumed 4 pieces of pizza and well over 150g of carbs.  I threw up in my mouth a little when I bolused her.

So, now that I've espoused the incredible goodness of this lemonade, I bet you're asking where you can find it... good question! Currently Leaf & Love Organic Lemonade is being sold by the case  (32 boxes) on Amazon for $28.96 and will be available at retail locations soon.  Better yet, you can purchase the lemonade through Amazon Smiles and donate a little somethin'-somethin' to the JDRF while you're at it.  Double winning!

For more information, you can also visit www.leafandlove.com, or for those FB-type people; www.facebook.com/leafandlove.

Thank you so much Sara and Amy for making lemonade out of a big, fat lemon of a disease!

***Leaf & Love sent us a juice box to sample, but did not tell me what to think or write.  All opinions are my own.  Elise may have helped too.***

Talking some Bionic Pancreas with the DSMA 'Rents Peeps!

About a month or so ago, Lorraine Sisto contacted Fred and I about doing a DSMA "Rents chat about Elise's experience wearing the Bionic Pancreas at Camp Clara Barton.  

"Cool!" Thought I.  "Must remember to blog about it."

So here I am.  Blogging about it.  Almost a day late and a dollar short since it's all going down tonight, but at least it's something.

It's all happening at 8:00 pm CT (check your local listings), so if you have a spare moment, have a listen.  Call in.  Join the conversation.  Click here to do so.

But we'd better not get a call from anyone named Hugh Jass.

I'm looking at you, Shannon or Katy.

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.

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.***

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.

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.

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.

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.

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!

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.

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!

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

Bionic!

See that face?  That is the face of one excited little girl.  There is so much to update on our recent adventures, but this piece of news is a big part.

In 11 days, Elise will be one of the first 6 year-olds in the world to trial the Bionic Pancreas.  She will be headed to Camp Clara Barton for two weeks, and will be wearing this revolutionary device for 5 days.

It's an amazing concept, and I was able to hold it in my hands.  I'm hoping to write more as this adventure continues and keep you updated.

But for now we're finishing up our vacation and enjoying our time together before re-entry into the real world.

And I'm soaking up all the time with Elise that I can before she leaves to help change the future of people with type 1 diabetes.

To see more about the study and camp, check out this video:

http://youtu.be/U5JVrPM6FFY

Breaking News

 And now you know why I've been so quiet lately...

Yes, even babies can get type 1

Intuition. 

Mommy-gut. 

I just knew. 

Upon hearing that Elise was diagnosed at such a young age, I am often asked how we knew Elise had diabetes. The short answer is, at her 12 month well-child visit, the doctor did a urine test and found sugar. Elise had no symptoms except she didn't gain any weight between 9 and 12 months. A sign that something ominous was coming our way, but as a stand-alone symptom, nothing special. 

The long answer starts way before that. Probably closer to when she was 6 months old. Elise had a UTI. Then, strange fevers that would come and go every day. She would always start the day off normal, then her temperature would rise throughout the day until she was around 103 by bedtime. The next morning, everything would reset. 

She had another UTI. The fevers persisted. Thankfully, Elise's pediatrician didn't write me off as some crazy first-time mother whack-job. She believed me. Between the ages of 6 and 12 months, Elise had kidney ultrasounds, a CT scan, and a VCUG (a test using x-ray to determine if there are any bladder abnormalities). She was also seeing a pediatric Nephrologist (kidney doc). 

Everything kept coming back as normal. But my gut kept telling me that something was wrong. She wasn't the same little baby she had been just a few months before. She hardly ever smiled anymore. She was cranky. And those fevers just never went away. Still, there were none of the classic signs of type 1 diabetes. 

When she finally was diagnosed, she was in the very early stages; her fasting was in the 120s. Her A1C was 6.5. She wasn't even on insulin at first. But being vindicated has never been so heartbreaking.  

I often wonder how long it would have taken to recognize the tell-tale symptoms of type 1. Would her story, like so many of the babies, be one of almost losing her? As much as I hate the diagnosis, I am thankful we didn't have the added trauma of that. 

So why do I write this? Because sometimes, when I'm bored (which isn't all that often anymore as you can tell by my posting frequency), I look to see how people stumble onto my blog. And the phrases that make my heart skip a beat are ones like: 

Can babies have diabetes? 

Something is wrong with my baby 

Symptoms of diabetes

To those of you who find this post by googling something like the phrases above, I say this to you: Trust your gut. You know your child best. If your doctor scoffs at the notion of type 1, demand a test. It takes 5 seconds. If they won't, go to a pharmacy and buy a meter that comes with some strips. That $30 could save your child's life. Elise's pediatrician is amazing, but not all doctors are so willing to listen to the parents. 

And above all, if your child has any of the symptoms for type 1 diabetes; unexplained weight loss, unquenchable thirst, frequent urination, uncontrolled hunger, fatigue, nausea, stomach pain, blurred vision, rapid breathing or fruity-smelling breath, get them to the nearest ER as quickly as possible and ask them to test for type 1.

This post has been on my heart for awhile.  Ever since I read (yet another) story of a child passing away from undiagnosed type 1.  The parents sought help (multiple times), but the doctor ignored the symptoms, saying it was the flu.  This doesn't have to happen. It shouldn't.

Parents, know the symptoms.  And above all, trust yourselves.

I AM TYPE 1

Remember me? My name is Joanne and I used to blog here. I can't believe I haven't posted in a month. Busy is an understatement around here.

One of the projects Fred and I have been working on is a new video. The idea was actually born a few years ago while I lay in bed in the middle of the night trying to get back to sleep after treating a low.

My Canadian friends will recognize the concept... I "borrowed" it from a popular commercial called "The Rant" that was all the rage in Canada 14 years ago.

Two years from an idea to a finished product... We move fast around here. I hope you enjoy it and it brings a smile to your face.

https://www.youtube.com/watch?v=fBtsR1rDAqY

My diabetes life hack

Friday - Diabetes Life Hacks

I don't have any hacks per se... most of them are medical in nature and I don't really feel like getting sued, so I won't be sharing them.  I'm not sure this counts as a hack, but one thing we have done since almost the very beginning is carb factors.  If you've been reading this blog for any amount of time, you may recognize the following post, but carb factors have truly saved our sanity around here.  Read on for why I think they are so awesome...

My name is Joanne and I weigh my daughter's food.

Pretty much everything she eats graces my kitchen scale.  And I'm okay with it.

It all started when she was diagnosed at the age of 12 months.  We quickly discovered that even 3g of carbs would raise her BG by 70-100.  Even these days when treating a low, we use 6g if we're dealing with anything 50 and above.  Just the other day, she was 53 and I gave her 6g.  A mere 10 minutes later, she was 134.

I guess she's just really sensitive to carbs. 

And I like weighing because it's the most precise way of counting carbs.  It also takes one thing out of the equation when you wind up with a wack-a-doo number after eating.  At least you know you counted the carbs correctly.

I love carb factors because they make it so easy to figure out carbs.  If you've never heard of carb factors before, here is a brief run-down:

Different foods are made up of different parts: carbs, fat, fiber... etc. Carb factors are the percentage of a food that is made up of carbs. Let's use a banana as an example. They are 20% carbs, or have a carb factor of .20. But how do I figure out exactly how many carbs are in the little bit that I give Elise for a snack?

To figure out exactly how many carbs are in that piece of banana, all I need to do is weigh the banana (in grams, not ounces). Since I know that any portion of a banana is 20% carbs, all I need to do is multiply the weight by .20 (the carb factor for a banana). So if a banana weighs 15 grams, the amount of carbs in that banana is 15 x .20 or 3g of carbs.

You can even use carb factors for pre-packaged foods. Elise LOVES goldfish crackers, but can't eat an entire serving. To figure out the carb factor for her crackers, I just divide the amount of carbs in a serving (19g), by the serving size (30g). Remember, all weights MUST be done in grams for it to work. So goldfish crackers have a carb factor of .63. To find out the carb factor of any packaged food, it's always carbs divided by grams.

Figuring out the carb factor for homemade food is easy too! Just figure out the # of carbs in each ingredient and weigh the whole thing and add up all the carbs and divide the total carbs by the total weight and you now have the carb factor for your food. So when I made a stew for dinner the other day, I weighed all the veggies and other ingredients that went into it. The whole pot of stew had 80g of carbs. When it was done, I poured the stew into a container, weighed it, and it came to 1560g (not including the weight of the container, of course!). Then I divided 80/1560, and found that my stew has a carb factor of .05.

My favourite thing about carb factors is how they make it easy to figure out the carbs of almost anything.  Even if you don't have the nutritional information, you can use a generic carb factor and come pretty darn close. 

For example, bread for the most part has a carb factor of between .47 and .59.  When eating out at a restaurant, I use a generic carb factor of .5 for that yummy, warm, soft bread that comes at the start of the meal, and it usually turns out fine.

Or pasta sauces are usually between .07 and .12 (hint: the more meat, the lower the carb factor).

Mashed potatoes generally run between .18 and .22.

Brown rice? .23.

Vanilla ice cream?  .23 to .25.

Because I have a good head for numbers, I can remember the carb factor for almost anything Elise has ever eaten.  It really has made eating out so much easier for us.  I can barely remember my own name, but I do know that nuggets at CFA have a carb factor of .1.

The other day I was making a cold oriental noodle salad dish for dinner.  It had noodles, chicken, carrots, edamame, and a "dressing".  I must have lost my brain somewhere that day, because I threw everything in a bowl without weighing and figuring out the dish's carb factor.  Oops.

I had never made it before, but I had made pasta salad lots of times, and they all have noodles, veggies and meat, so I decided to use the carb factor for one of my pasta salads (.15 if you're wondering).

The result?  She was 104 before dinner, and 124 about 3 1/2 hours later.  I call that, "rockin' the casbah".

And that's the main reason I weigh and use carb factors.  D throws so many other curves at us, I like to try and control what I can.  Sure sometimes we forget the scale.  And I always eyeball and SWAG the cupcakes at a birthday party, but I think weighing Elise's food has a lot to do with why her A1Cs are in the low 6s.

So that's my "diabetes life hack".  Stay calm and weigh on!

Mantras and more

Thursday - Mantras and More
Yesterday we opened up how diabetes can bring us down. Today let's share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost?

Today I'm phoning it in... I have a load of laundry going, another in the dryer and a dishwasher that needs to be emptied.  And a baby that is waking up and will want to nurse.  And let's not forget dinner.  

So, instead of imparting any wisdom I may have on this subject, I will rely on the words of others.  I love these two quotes; just reading them will simultaneously bring tears to my eyes while steeling my resolve to keep on, keeping on.

I hope they inspire you as well.

"The greatest glory in living lies not in never falling, but rising every time we fall" 

-Nelson Mandela

Type 1 and Mondays always bring me down

Wednesday - What Brings me Down
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes.  What things can make dealing with diabetes an emotional issue for you/and your loved one, and how do you cope?

It happened a few weeks ago, I was holding a sobbing Elise as her tears soaked through my shirt.  We had had a run of crazy numbers over the past couple days; highs crashing to lows, sustained lows that needed copious carbs just to keep her at 80, and sticky highs that would not budge no matter how much insulin we poured into her.

"I just hate this so much, Mama!  I don't want to live this way... it's too hard!  Everything hurts and I hate this!  I hate diabetes... having diabetes is AWFUL!"

I just held her and let her vent. At one point I said, "I know Elise.  I know."  And what I meant by that is I understand that it's awful for her.  I understand that she hates it.

But she jumped all over my choice of words and let me have it, "But you DON'T know.  You'll NEVER know.  You're not the one with diabetes, I AM!"

Ouch.  

But she's right.

I hate the emotional side of this disease. I hate that I can't fix it, like I can a low with sugar, or a high with insulin.  I hate that people just don't understand the toll this disease takes on PWD and CWD emotionally. This by far is the hardest thing about type 1.

For now all I can do is hold her when she cries, listen and try to take on as much of the burden as I can.

I wish it were more.

Elise's Poetry Slam

Tuesday - Poetry Tuesday
Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.  After you've posted it on your blog, share it on the No Sugar Added Poetry page on TuDiabetes, and read what others have shared there as well.

I used to love writing poetry... not only because I lacked the attention span to write anything longer, but poetry was the perfect outlet for my first-world angst.  But I knew this topic would be perfect one for Elise to make her blogging debut; right now they're studying poetry at school, and she can pen some pretty epic quatrains.

The following is an Elise original.  I love the non-sequitur ending.

My Diabetes

Diabetes is hard to beat

But I can eat it like meat

Diabetes is strong,

But I am stronger

My CGM reads the numbers

Or else it will be a bummer

My monitor tells us the number

Pods are like turtle shells.

Here's my contribution:

Roses are red

Christmas trees are sappy

Diabetes + Strep throat + antibiotics + strep rash + hives

Are all really, really, really crappy

Starfish

So. It's been a little quiet around here lately.  Lots to write and zero time to do it.  I was hoping that the fifth annual Dblog Week would be the kick in the pants I needed.  Let's see if I can make it work...



Monday - Change the World Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

This one.  This. That word... advocate.  I'm stuck on that.  The problem is, I don't feel like one.  I look around the DOC and see everything that is being done; the Strip Safely Campaign, Children's Congress, Spare a rose, Save a Child... I know there are more, right now my brain is just a little tired.  

What I love about the DOC is their ability to start a grassroots campaign and run with it.  And I love how quickly everyone hops aboard.  I will usually hear about it and say, "Self... you need to look into that when you have some time."  My problem is that last word; time.  There just isn't enough of it.

But instead of beating myself up about my lack of involvement, I do what I can, where I can.  And that amounts to speaking at a newly diagnosed class at our Children's Hospital once a month.

Because reaching out to families that may be feeling like they are drowning is my passion.   Fred and I didn't have that at the beginning, and it was a very dark time for us.  So I try to be a tiny light in their new, strange world.  I tell them our story; how far we have come, how amazing Elise is, and I can usually get through it without shedding a tear these days. 

Interestingly enough, I usually see quite a few tears in the eyes of the people I'm speaking to.  And when they come up to me later, a lot of them tell me that they are tears of relief, knowing that someone has been there and come out the other side just fine.

It may not be a lot. I may not be blazing new trails and making my voice heard across the country, but for now, it's enough.  I'm making the difference where I can, and maybe one day it will lead to more, maybe not. But if it helps even one person, it's enough.  

Just like the starfish.

SWAG the Bunny

I never claimed to be a cake decorator, nevertheless I'm pretty pleased with my first attempt (with Elise's help).  

Meet SWAG, the Easter Bunny.  Made with fresh strawberry icing and white cake, the carb amount is anyone's guess. 

But we will worry about that afterwards.  For now, Happy Easter and lovely BGs to you all!

The Ugly Underneath

A few weekends ago, Fred took Elise to her very first Daddy/Daughter prom. She was so excited for the event; a pretty party dress, shoes with a hint of a heel (her first!), body spray with sparkles, and some eye glitter and lip gloss. She didn't want to look in the mirror until she was all done up. The results had her uttering a hushed, "oooohhhhhhhhh!" As she twirled and curtsied in front on the full length mirror.

(For the record, she must get it from Fred... I have never twirled or curtsied in my life and the thought of putting on a dress at her age would have made me run, screaming.)

There was a small party at a neighbour's house before all the dads and daughters left.  There were appetizers, the girls admired one another, and we took pictures.  Like the one above.

To the casual observer, the little girl does not appear to be enjoying herself very much. She looks like she doesn't even want to be there. And that's because they are missing the ugly underneath.

The ugliness of a blood sugar that was 356.

And a CGM that had been reading HIGH most of the afternoon.

The awfulenss that was all the other little girls drinking sparkling grape juice in fancy cups, while I only let Elise have a tiny sip, just to try.

And even though I encouraged her to have a chocolate covered strawberry (high BG be damned), she didn't want to because she knew she was high and didn't want to go higher.

The ugly underneath of diabetes is not only how it can damage physically, but also so heart-breakingly emotionally too.  After awhile, you kind of grow hardened to the BG checks and pump changes... it's all a part of a routine, like brushing your teeth. 

But what you never get accustomed to is how this disease pierces your heart when it wrecks havoc on the emotions, and you're the only one who sees the tiny tears slip down your child's face as she tries to sit unnoticed in a corner. It just about breaks me.

But at the end of the night, while her CGM from that evening looked like the world's most vomit-inducing roller-coaster, she still declared the night, "pretty much the best time ever in my life."

Because the beautiful underneath that people also miss is just how strong and incredible these kids are.