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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

Wednesday, July 9, 2014

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

Saturday, June 28, 2014

Breaking News



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

Tuesday, June 24, 2014

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.

Monday, June 16, 2014

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

Friday, May 16, 2014

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!

Thursday, May 15, 2014

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