Jazz

Cadence has always been a bit of a watcher by nature. Every since she went through her experience of becoming diabetic, she's been standoffish of things and people that are new and different. Her white coat syndrome is entrenched in subconscious experience. A great example of that is her bicycle. I bought her a bike 2 years ago and she has always feared it yet loved it at the same time. It felt like a personal failure for us, as Nicole and I live for riding, it's always been the reason why for us. So for 1.5 years Cadence would walk her bike when we'd go to the park always fearing going too fast.   Fearful enough that her bike was always best utilized when carefully walked, not recklessly ridden.




And then there was Jazz.

 Jazz is Cadence's best friend. They share more hugs than words and everytime we go driving she asks "is that Jazz's car?". If she was in her 20's we'd probably have a stalking case on our hands but since they're only 5, it's just as cute as can be.  Jazz took to riding her bike almost immediately, likely thanks to her super-parents Tracy and Rob. She ripped up and down her block with "no training wheels" well before Cadence had confidently ridden her first hill. The competitive juices of Cadence came to the surface when she found this out and she was now ready to drop the training wheels and "rock it like Jazzy-Jazz". I have to admit I was fearful of this next step since she barely liked her bike to move let alone tip over. So a day was spent with me running along side of her gradually lightening my grip. I wasn't convinced on the success of this venture thus the training wheels and a crescent wrench went along for the ride in her pink, flower-powered basket, hugged compassionately on all sides by her favourite stuffed animals. But as the evening wore on there was a moment when I stopped and she continued on 2 wheels, by herself. She stopped after 4 pedal strokes of two-wheeled freedom. Looked down at her feet to see what she had done and looked back at me with eyes that said "I did it! I really, really did it...(like Jazz)". It's a moment that almost every parent gets to experience, so I don't mean to sound like this is something that is so unique and special, a single experience in existence. But... it was our experience, amazingly unique and special... truly, a moment where she broke free of our grip on her life. It was a landmark event where she was independent of all crutches. Whether she felt this is for her to answer but I can only tell you that she has changed immensely since that moment in our eyes.

A week later, Cadence raced her first Triathlon in Windermere, with Jazz of course. I can tell you it was the most fun I've ever had in a race and I hope she felt the same way. It was so amazing to see her go through her mental race prep, the ingrained genetic traits that you pass on indirectly to your children. Before a race, I usually get quiet for awhile and look on in the distance focusing on my headspace. Right before the start, i become nervously giddy and social with everyone around me. It was so cool to see that in her. I can only hope she has better success than me ;P .

The race was an absolute BLAST! A 50m swim to transition...hugs with Jazz, then a 1.5km bike ride to transition...hugs with Jazz, and then a 500m run of which I was at her side for the whole thing. It was just an incredibly cool moment. She of course kicked it at the line and "beated Jazz" but she described it as "I winned before Jazz winned". Jazz would get her back next race however, grabbing the victory in the last 25m of the race. Well played Jazz!






"I WINNED"

Cadence is a different kid since she dropped those training wheels and never looked back. She has become brave, adventurous, mischievous, and we love it. She wants to bike everywhere, explore, and do stuff. She is bolusing her own insulin now, doesn't cry for infusion site changes, has even decided she wants to try and do one herself soon. It's really amazing. The added bonus to all of this newfound independence and confidence is that it's rubbing off on Hailey. She can't use her brakes just yet but she's all about dropping her training wheels! We're tempering that process. Additionally, Nic and I have become re-passioned with cycling and fitness . We're back into it and man does it feel good. So a big thanks goes out to Jazz.  A big thanks to my Cadence, since you Winned, we winned!

Kids need a challenge to help them explore what's possible.  To hold them back from experience serves to hold you as a parent back.  Allow your kids to explore and be mischievous, in what they discover could be a great awakening for your own spirit.



Onward without restraint,
b.



Oh and also just a quick little P.S. - in all of the stuff that's happened this summer I'd just like to say: F*CK YOU Diabetes, our last A1C was 6.9!

new discoveries

I supplied the venue for an Insulin Pump information session last night at my clinic The Calgary Centre for Health. We will sometimes open up our facility to different interest groups, providing a free space to host a seminar. I had boatloads of stuff I had to get through at the office, so spending a few extra hours at the clinic last night wasn't a bad idea. There was about 20 people, there mostly parents of diabetic children. Very few people get to spend an evening with a bunch of strangers but be intimately connected through a condition. It's really kind of comforting to be in the presence of so many that know the struggle, it's an affirmation that while wandering the house at 2am looking for test strips, infusion sets, batteries, juice boxes, and hail Mary's....there's someone close by doing the same thing. The mid-day yawn and eye rub could almost be the universal handshake of diabetes.

Animas brought in Lorraine Anderson, a certified Diabetes educator and fellow pumper. The brain trust of Ward Clark, territory Manager for Alberta, the great Joe Solowiejczyk, and Teresa from the Alberta Children's Hospital were among us in attendance. The content discussed was far more in depth than just how great pumps are for managing diabetes. We chatted about matching food to insulin blousing, how to really take advantage of combination boluses, pizza bolus, super bolus, all of these great concepts that many of us have heard of but been too nervous to experiment with. Lorraine did an amazing job of empowering the group to have some "fun" with diabetes, see if you can out-think the beast. I consider myself fairly knowledgeable about insulin pumping, but found myself completely engaged and fascinated by the discussion. In fact, texting the discussion with Nicole to make sure we remembered the information. It was a really great discussion and to be honest, I found it exciting...which is so lame, but it's true! The opportunity to come at Cadence's disease from some different angles. We touched on a fair bit of topics that are frowned upon by some CDE's but in this discussion, we learned the reasons why we all do it incognito. For instance, pre-bolusing 20 minutes, overriding the pump recommendations based on instinct and experience, acceptable blood glucose departures 2 hours post meal, etc. It was great. The only issue I have this morning is that pile of stuff I had to do last night....is still sitting on my desk but i'm going to try and attack it from a couple new angles.

B.

Animas Ping...first weekend review

Cadence's new insulin pump arrived at the office on the weekend! The much awaited Animas Ping!

My review of "the new hotness":

The Animas Ping is Johnson & Johnson's newest product for diabetes, updating a great previous model in the animas 2020. Cadence has been pumping with the 2020 since March of 2008 and we've never regretted our Animas decision for a single day. Awesome company lined with an incredible device. The Ping was a bit of surprise release as the blogs, boards, and tweets all predicted that an Animas/Dexcom integrated product would be the next release but that has lost quite a bit of attention. My intuition tells me that they can't find a way to integrate an infusion set with a CGM sensor from a cost effectiveness standpoint and also how to make them last/fail at the same rate. Likely a hurdle that can't be solved in the short term, but I digress.

The Animas Ping is a swank new sparkle pink color (or green, or silver, or blue etc), and a bit bigger, probably 1cm longer than the 2020 predecessor. Aside from a small size difference, the guts of the pump are relatively unchanged. The display and readout are similar with some additional customizable features with sounds/alerts than what was offered on the 2020. One thing that Animas neglected was to add the IOB onto the home screen. This was a much talked about miss that the bloggers/boards discussed 2 years ago regarding the 2020 was that you had 3-4 screens to go through to get to the Insulin on Board. As any pumper or parent of one in our case, the IOB is just as valuable than seeing the current basal rate, especially for temping.

The magic of the Ping however, is the wireless function of the OneTouch Ping glucose meter. You literally have a remote display of the pump in the glucose meter. You can bolus from the meter without having to fish the pump out of yours or your running like mad toddler to push buttons. She can continue to run laps around the kitchen with a crayon coloring the drywall while you sit in a chair and casually bolus for her dinner....so to speak :-) . For those operating their own pump, the big advantage is discretion in that you don't have to reach into your clothing to remove the pump, you can do everything via the meter.

EXCEPT: change your basal rate, or temp your basal! That's right, you can bolus insulin but not change basal rate unless you have the pump in hand. (Yes, you read that correctly.)

With Cadence, we probably temp her basal rate at least 1x day if not more depending on sugar and activity. To not include this option onto the Ping meter can only be described as an EPIC FAIL. So we still have to fish the pump out while holding her down to tweak the basal rate. I'd love to know the reasons behind leaving this feature out but likely it was a time to market decision. Hopefully this is fixed soon with a software update. When we ordered the Ping I didn't even research as to whether this would be included.

This massive gaff in R&D judgement aside, I can't even begin to describe how much we love the new Ping. Proof in the pudding was at Cadence's Halloween party, her pump was buried under layers of princess costume and we never had to interrupt her play sessions other than for a quick blood test. The discretion that being "wireless" with the pump provides is just so valuable. Especially now as Cadence realizes that she's a bit different from everyone else. More proof of that was at each house she trick or treated at she followed the treat with "I don't wike candy..." and walked down the steps. It was hilarious to say the least. For her social circle though, for the other kids to not see a device connected with tubing to her body 24/7 is valuable enough for her self esteem to warrant the cost of the upgrade from the 2020.

Overall, this is a tremendously good product that is long overdue. The Ping pump carries the same great information and user friendliness found in the layout and function of the 2020 pump. The Ping blood checker works as well as any other OneTouch meter and the menus are easy to navigate and the setup between the pump and meter is very intuitive.

For those on the fence regarding an upgrade, in my opinion a worthwhile one indeed. For those contemplating a pump for yourself or your child, the Animas product is as good as they come!

B.

Ping me.

We quietly passed over Cadence's 2-year anniversary of diagnosis, July 19th. Funny how life-changing that day was. Now with a 2.5 year old and a 13 week old baby, we just let the day go by without any of us realizing it. A sign of moving on?

Speaking of moving on! We're pretty stoked at Casa de Kane. Cadence is going to be getting a new pump this year!

Cadence started pumping on March 31, 2008 and her life forever changed for the better. We, almost instantaneously gained better control, ensured a better life for her, and as a parent felt empowered to effect her diabetes in a meaningful way. I still can't emphasize the importance of this technology for a parent of a diabetic child.

We went through so much research when deciding what pump to get Cadence. Fortunately we chose Animas for Cadence and we still couldn't be happier with the decision. They have finally released a new product called the Animas Ping. What we now can do is deliver boluses of insulin, tweak basals, etc without having to fish her pump out of her clothing. As she runs around at a mile a minute, chasing her with the tubing hanging out just isn't working anymore. We're excited to have wireless control.

Had we gone the Medtronic route...we'd still be over-promised and under-delivered.

B.

D-Mergency (part 2)

We almost made it a calendar year between hospitalizations.

It's been a very hard year for our family, yet a year with great successes.  We went from a Coma, to an infant on 8 injections a day, to a pre-toddler on an insulin pump (shaking the diabetes establishment in this city) 6 months after diagnosis, and recently registered a lower, "absolutely amazing" 7.7 A1c for Cadence, only 3 months after her pump start.  But you still can't predict the d-mergency.  Nicole and Cadence went to Ontario to visit Gramma and Grampa, the first day they were there, Cadence had to be taken to the ER for an IV as vomiting and flu like symptoms threw her blood chemistry for a loop.  I was in San Francisco, standing in the parking lot of the Olympic Club when I got the text message saying that Cadence was in the hospital.  Everything that I felt last July came back to me as I read the words and I crumbled for a moment.

For diabetic children a trip to the ER for an IV is a part of life and it won't be the last one from what we're told.  It turned out to be a positive as Cadence was feeling much better a day later.  The fact remains that we strive to never have to be back to the hospital with Cadence and find it so ironic that our goal as parents, before diagnosis, was to never need emergency care for her.  The irony now is that we depend upon it for something as simple as a stomach flu.

Our one year D-versary comes up next month on July 19th.  We plan to make it a day of exceptional fun for Cadence and put last years experience far behind her.  We work everyday to make diabetes a positive in our family's lives, not a negative, and encourage other families to ensure that diabetes is not their disease but their opportunity.

b.

D-mergency

Even when I tried to put in the title, the blogger program changed the first letter to E.  Nobody understands :)

"Captain, we've got a D-mergency....Ketone field dead ahead, take evasive action"

The D-mergency is something that diabetics and their caregivers know all too well.  It's sort of the secret handshake that you'd rather not know.  The D-mergency is often associated with Murphy's Law as well.  We were at a birthday part last night for one of Cadence's friends.  First birthday party with kids, cake, pizza, and soda.  We were so excited to let her experience these foods for the first time and to see the power of the insulin pump in terms of dealing with these carbs.  We were all set, pump was going, infusion site did fine all day, as soon as we hit the front door apparently the infusion site decided it was finished...or Cadence's body felt that she was finished with it and it scarred over.  1 hour into the party before any food was put out she hit 20.3 on her meter, 4 times the normal range.  She felt like (or so I perceive) she just downed 5 big gulps.  She played quietly and jumped anxiously everytime anything around her made a sound, cried uncontrollably at the site of a party hat, weird stuff.  Back to Murphy's law...the one time we leave the house without a backup syringe/insulin/infusion set...is when we need to use it.

So, as the pizza was unboxed and after 2 corrections Cadence's sugar only climbed, we had to make our exit, take her away from the party to go and try to bring her sugar down.  We were all bummed out, it was a quiet ride home.  After we put in the new site, gave her a big bolus of insulin, her sugar started dropping and we had a little party at home.  Cadence had a taste of some frozen yogurt, danced to some music, and hit the sack a little later than normal.  Nic and I got ready for a long night of fighting the lows often associated with a high correction and a new infusion site.

We know the secret "D" handshake and every day wish that we didn't.  The trick is to make every attempt to use it as little as possible and make day to day life and normal and vibrant as possible.  Diabetes is a life ending disease without an obvious disability or a cure.  A great quote I read yesterday rings so true "you don't get time off for good behavior", you just have to try to keep the ship headed in the right direction.

For an awesome perspective on diabetes read this article on Jake Cutler, quarterback for the Denver Broncos.  We are officially Bronco fans now.

b.

The comfort of a needle...

An interesting revelation was had earlier this week.  Cadence has had a cold/ear infection/ eye teeth coming in...you name it, this week has been one for the books.  Lying in the weeds, there is always the "D" and the sugar irregularity that comes with illness and irritability in a toddler. Is she high, super high, or low?  Those are the questions we ask.

It brings me back to my original point about revelations.  Parents of diabetics...scratch that...diabetics in general should not be too quick to switch to pump therapy, meaning that spending the first few months, let's say 3-4 months if we need to pick a number, is very important.  An about face?  No, just a realization that the time that we spent jabbing our baby with 6-8 needles per day, soothing the crying afterward taught us how to be strong, resiliant, and competent diabetic caregivers.  We have a keen understanding of how insulin works on our daughter, we are not afraid to stick her with a needle if needed, no matter how hard she fights.  That's a unique skill and not one to be underestimated.  Not convinced?  Ask someone on the street if they would be willing to give you an injection, would you trust them to do it for one?  Number two, would they be willing to give you a lifesaving injection?  Social experiment time.  

I know from our situation, the answer to the latter is probably not.  We have people close to us that refuse to learn how to save my daughter's life.  It makes you scratch your head asking why, but then again perhaps it is just how anyone else would behave.  Who wants to give a needle to someone?  Is it unreasonable then for us as parents to ask for help?  Is our wish for a couple hours off of diabetes forcing someone else to enter into an extremely uncomfortable situation? Are we being unfair?

So, the pump is absolutely awesome in the sense that it takes away the injection side of diabetes, which solves the social experiment.  It can provide very finite control, and offers immense lifestyle flexibility.  We celebrate those parts of it every day.  I hope that most Type one diabetics, when they are ready take this step toward normalizing and enhancing your life.  What the pump adds however is the uncertainty of the equipment, did the infusion site work, is the pump working properly, is there air in the line (we had to prime out bubbles twice today)?  Combine the unpredictability of diabetes and you can quickly begin chasing your tail if you don't remain centered.  With a needle, you always know the insulin went in.  

That is the comfort of the needle.

b.

The Last Shot.

I can't believe we're here already.  March 30th, the eve of a very fresh start for Cadence.  We start insulin pump therapy with Cadence as of tomorrow morning.  From here till....well....who knows, Cadence will have the pink Animas 2020 saving her life everyday.  The pump will be attached to her 24/7 delivery micro amounts of insulin.  We can push buttons to deliver higher amounts for food or highs, suspend delivery if she's low or sick.  It's very exciting to have the potential for incredible control of her diabetes.  For the last 7 months, we give her a bunch of insulin and hope that she takes in enough carbs to cover the insulin and also that we've given her enough insulin to cover the breast feeds...let alone trying to figure out how many carbs are in the milk and how much she takes in.  Our A1C is really just an average of the highs and lows.

I  have 3 syringes left to give her, and then there's no more needles.  That point is just so valuable to me, I can't even describe it.  I came home the other night from work and she was happy to see me but ran away because she knew it was time for a needle.  I can't even tell you how hard that is for me as a dad.  Nic and I are so happy to be free of having to stick Cadence with 8 needles a day...for now.  I remember the first one I gave her last year and I almost broke down doing it, it's easier to do now, I'm better at it.  The hardest part is that she cries a bit, holds the injection site, and gives me the ultimate hairy eyeball.  So I say (to a baby) "sorry Buttons."  I'm sure she's saying "whatever dad, I'll get you when I'm 14."

The stomach bruises suck.

A quick calculation will show that Cadence has had diabetes for just over half of her life, she is now 17 months old.  She has endured approximately 1856 needles and nearly 4000 blood checks.  The little girl is tough as nails and she amazes me.

So, today is kind of like Christmas eve the anticipation is palpable but everyone in our house has a sense of confidence and anticipation for this next chapter in her life.  

Until tomorrow,

Brad.

teaching the teacher

Cadence had her first flu since she was diagnosed this week. Vomiting, diarrhea, the whole nine yards. Our laundry machine need a vacation.

We had been prepped and educated about how different illness management is with a diabetic child. I didn't realize how difficult it actually is. With insulin working in her system and her being unable to take in any foods or fluids, we battle low blood sugars, dangerous lows at that. Oh what fun it was holding a sick baby down, forcing her mouth open and pouring maple syrup down her throat was on Thursday...otherwise it was hospital time.

It was during these moments (there were 3 this week) that we realized as well controlled as we keep Cadence's diabetes and how 'impressed' the diabetes nurses are with our management of her, how far from controlled she is. We react as there's almost no way to predict what her next sugar will be. Exhausting google about insulin management it seems as though continuous glucose monitoring (CGM) and insulin pump therapies are increasingly becoming the best predictive management tool for a type 1 diabetic. The problem is that these devices are priced for insurance coverage, of which we don't have.

Insulin Pump - 6000.00 (lasts 5 years)
Supplies - approximately 500 per month.

CGM - 800
Supplies - 250/month

So, another question comes up about our great socialist health care system in Alberta. Which is one of the provinces in Canada that does not fund a single thing for diabetes. Our health care policy rings with words of prevention, maintaining good health, etc....while fully aware that diabetes (predominantly Type 2) is reaching epidemic proportions worldwide and could soon be the single largest drain on the health care system due to long term complications. 1 in 10 hospitalizations are from diabetes related illnesses that stem from poor sugar control. Wouldn't it make sense for our government to make things like pump therapy and CGM available to diabetics so that they are less straining on the system?

The question of proactive health care funding for Albertans, and Canadians for that matter is one that is historically been rhetorical. Someone mentions it, governments adopt the terminology, and nothing really changes. More money is put into emergency care.

I've started to do some leg-work to lobby our government, which right now is swimming in money, to look at funding pump therapy for diabetics. I like to say I have completely altruistic intentions with this and it's for the good of the people...truthfully, it's so that we can avoid another week like this one. If the rest of the type 1's in Alberta can benefit from it though, that would be an enormous value added.

b.