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!

Blinders

Shame on the Calgary Board of Education, the legal team, the administrators, and any and all involved in putting the health of Calgary's student body behind convenience.

I'm angry, check that I'm really angry. Cadence has been going to Kindergarten for the last 6 months and is loving it. She is praised by her teacher, and beloved by her classmates. I'll never forget how incredibly humble, proud, and surprised she was when she had made all these new friends. Diabetes puts a child on the outside at times, they're different, they're fragile in many's eyes. She loves it there because she feels good, they make her feel good, and for the first time, the primary concern of those around her is actually her...not her blood sugar. It's freedom.

Our teacher, took it upon herself to learn how simple her insulin pump is to operate and how utterly hard it is to do it wrong. We have no expectations of decision making but instead created a flow chart that states if she is this number - do this, and/or call us. It has been working wonderfully. We've had no incidents of any kind and her sugars have been great throughout the winter. We love her for that, the first day Cadence came home with a star shaped post-it note stating her sugar was this, gave this amt. of insulin. It allowed my wife to re-engage in her career as a Chiropractor, get back to doing what she's so very good at. Life has been approximating normal for the first time since 7.7.19 and it's been a beautiful change.

But leave it to a lumbering sloth of an organization like the Calgary Board of Education to screw it up.

We got a call this week from the assistant principle stating that the board had a meeting about kids with diabetes. You know, a meeting about my kid that I wasn't fucking invited to. Where the group decided that "there were too many kids being diagnosed" thus the school staff was no longer permitted to give any help to the diabetic, no pump help, no blood-check help, etc. Basically saying: "too bad you have a fatal life-long disease kid, but don't bother us with it, you're on your own, now go play in traffic." I'm not naive, I get there is a liability component to this, but if my kid goes into DKA at the school because no one was willing to help her? Liability goes both ways.

So without consultation with parents, they take a perfectly willing teacher away from helping us provide a nurturing educational environment for Cadence and institute a policy that diabetics are hands off. But don't worry, if your kid needs an epi-pen for an allergy you'll have a line-up of eager volunteers though. Insulin shouldn't be discriminated against.

My favourite part of the conversation was how Cadence would not qualify for a nurse's aid to help her out as "it's very expensive, and it's not like her condition affects her cognitive ability." Oh like a diabetic coma is a perfect state to learn in. **deep breath**

The Calgary Board of Education with this decision has now taken a great program and successfully outcast my kid, eliminated my wife's capacity to work for the next 3-4 years, disrupted her social circles by Mom or Dad having to come to every snack time and lunch time to deliver insulin, and did all of this without consultation. Thanks a bunch for putting your convenience over my daughter's health, and quality of education. Thanks a bunch for deciding to be indifferent.

b.

Overheard today -

Cadence asks "mom, how sick was I when I was a baby?" We talked about being unconscious, bags of fluid and insulin going into her body by tubes, about the drill and syringes that pumped fluid into her shin and the central line doctors put into her heart to save her life. She asks "did they take all the love out of my heart". I smiled + said, "no sweetie, they kept you alive so you could keep lots of love in your heart!!" She smiled back and said "that's good, because I love my family, so much"

Just Plain Awesome.

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.

Stats.

I've been asked to give the keynote address at the Alberta Diabetes Foundation Rations for Riches event tomorrow at the Calgary tower. 10 minutes to share what diabetes is to our family. I'm going to do a blog post in the next couple days to describe the room....I'm kind of nervous, but it's an excited nervous....it's an opportunity to change perspectives.

I had to dig up some stats tonight for the keynote and even I was amazed by what I found.

- 300,000 kids with Type 1 diabetes in Canada.

- 3-5% increase in diagnosis rate per year (that's how you spell epidemic)

- 17 BILLION dollars per year towards diabetes complications yet the Alberta government doesn't cover a single dime of preventative measures. Seriously.

- in the 10 minutes it takes me to speak tomorrow morning in front of all those hungry people, 120 kids worldwide will develop diabetes...and most of them will die from it.

It has to be stopped. Get behind JDRF, ADF, CDA, educate, learn, be part of the solution.

till tomorrow!

B.

I'm back

It's been awhile since i've posted and I have finally figured out why.

There are many reasons and excuses I could throw out there, a business purchase, crumbling professional relationships, family non-D stuff...life is busy. The reason I've been delinquent about blogging is that I wasn't sure what to write. I had a comment from someone who said, is there anything that diabetes doesn't affect? I had to think about that question and for the longest time I sat looking at the cursor trying figure out what to write about that was fun, light, not related to diabetes. Well...the cursor still blinks. Don't get me wrong, there's a majority of our lives that are not related and certainly more that we don't let diabetes affect. But that's not what I write about, that stuff is awesome. LIFE IS FANTASIC IN EVERY SENSE. Diabetes is like cousin Eddy though...always there dumping his sewage tank out of his RV and spilling it onto your beautiful lawn. That's why I vent about it.

I write this blog for me. This blog is a place of emotional catharsis. It's used to be my little internet backwater that I never thought would be read, yet I get questions and emails regularly about the content. Being the parent of a diabetic is lonely place, it's a hard disease to spot. I write this blog for us I suppose and it feels good to do it. I've connected with many others that live in the same world through detailing our times of good and bad in the last 3 years of the D. I trended away from the purpose of this page, thinking that this blog had to evolve into other things. I was wrong. This blog is for me and the Diabetics, and especially the parents of, in the world that need to know there are others out there that feel the way we feel...and you know what? It's okay.

Guilt is a horrible feeling. I felt guilty that I hate diabetes more than my daughter hates it. I felt guilty about not checking her blood sugar last night because I desperately wanted to sleep...I felt it was selfish to put my need for sleep over her long term health. Granted she's 4 years old but she still feels the lows and highs. Nic and I feel bad d-days where we just throw our hands up and say "fuck you diabetes". Keeping in theme, I imagine me like Clark Griswold talking to Cousin Eddie, "maybe drive you out to the desert, leave you for dead." without Cousin Eddie picking up the reference. I think alot of parents feel this guilt and fear expressing their feelings for fear of being told "you're not the diabetic". A man whom I'd like to call a good friend, even though we've only met twice, is a 50 year old diabetic. He said "I think, as a diabetic, it's harder on the parents that it is the kid". To hear that from someone that has the disease was in part sad but in many ways brought relief and validation that it is okay to hate it, it is okay to be angry, and it is okay to feel helpless at times and hurt for my daughter.

So, I'm back and I'm not over diabetes, never over the fact that it will try to define my daughter's life, and no...as of Thursday morning, the answer to the question "so is that diabetes settling down, you've got it under control?" will still be answered in the fashion of: the last time I stabbed her tiny finger and took her blood, it was, but I'll let you know in 2 hours.

b.

dead in bed.

I'll admit I'd never heard about the "dead in bed" syndrome until a coupled days ago when a 13 year old girl with Type 1 diabetes went to sleep with a good blood sugar, in great overall health, and never woke up.

I will make no attempt to understand what the parents of this girl must be going through. I have myself watched my daughter's life flicker and come to within seconds of ending in my arms... is an image that I will never be at peace with. To actually have your child torn from you without an explanation, a cause, or a reason is unimaginable. Once again, diabetes gets off without a mark on it....dead in bed syndrome has no official cause but is responsible for 20-60 deaths per year or the equivalent of 6% of all deaths in type 1 diabetics under the age of 40 years old.

6% of type 1's die for no known reason. The assumption is that overnight hypoglycemia is to blame. But not diabetes, amazing. This was not the fault of anyone's, certainly not the parents, they did exactly what they should have...it's just one of those things...except that it's a young life ended shortly and without closure. I pray for their family that they can be a peace with this tragedy.

Over the last few weeks, out of a sheer desire for a full night's sleep, I have skipped Cadence's 2am blood test a couple times....3 years of an alarm at 2am 7 days a week, I needed a bit of break. To read this horrific news reaffirms that we need to be vigilant about our kid's blood sugars. Their life literally depends on our diligence both in the short term (dead in bed) and the long term complications. We also need to galvanize our efforts as warriors against this disease, educate, fundraise, lobby for a remedy. Just this morning a huge segment on our local news channel about the rising costs and complications of "diabetes" without identifying the types! It was from the Canadian Diabetes Association which is almost entirely type 2 focused, talking about prevention of long term outcomes and the cost of 2 billion dollars a year to the province. What they did not mention was that the Province of Alberta doesn't cover a DIME of type 1 prevention costs, insulin, test strips, syringes, insulin pumps. People who can't afford to protect their children, have no other option but to choose conservation of test strips, re-use a syringes, squeeze another few weeks out of that vial of insulin. It's not right and has significant consequences.

Teach people at every opportunity that Diabetes is multifaceted and needs the attention of citizens, our elected officials, the change needs to come, come swiftly, and be significant in order to prevent another young life ended without a reason.

Learn on November 14th for World Diabetes Day.

b.

A Little Slice of Peace

One thing that most parents of a diabetic fear is the night. Most parents put their kids to bed, sink into the couch and enjoy the time of no-kidness for a few hours. If you're a parent of a toddler diabetic...you play the "what would a pancreas do?". Bedtime, blood check, DECISON = snack, basal, or bolus and what's going to be best while she's unconscious for the next 8 hours. Lots of decisions to make.

For the last 3.5 years, I have set my alarm clock 7 days a week for 2am. I get up, walk down the hall to Cadence's bed, slowly creep in, pull back the covers to find her feet, lance her toe, squint to see the blood drop in the dark (c'mon testing light!!), see the number and decide what to do - DECISION - bolus, basal temp, wake to juice. Then I go back to bed, close my eyes...debate my decision...stay up for another 45 minutes because now I'm awake, made some mental calculations, started the mental machinery...and I get up at 5:30am for week absolutely trashed. I carry my luggage under my eyes :-) . Have I snuck a full night's sleep in here and there? Maybe once or twice. Usually what happens is I wake up to my alarm, decide not to bother, then lay there for 45 minutes thinking about checking her...then finally get up to do so, stay awake for another 45 minutes...rinse and repeat. LOL it's a never ending cycle of self-fail.

So last night, Cadence, for the first time that I can remember climbed into our bed at 10:30pm and stayed there. Normally this is a habit your don't want your kid to get into but strangely, this morning I'm kind of happy that it did. I still checked her at 2am but she was all curled up right beside me (makes me smile to think about it). The best part was that she was right there, I could hear her, know she's all good and I fell right back to sleep. At 5:30am this morning I had this funny feeling....oh yeah it was rest including piece of mind.

Weird.

Hailey has herself all around diabetes as well, she's been watching and learning for her 14 months of existence. Without the ability to say hi, she now knows the steps to checking blood sugar and gets mad when she's cant do her own everytime Cadence reluctantly has her blood tested - Oh the irony!

b.

Hormone Discrimination

Choose your injectable hormone wisely as it may be discriminated against.

I say that sort of tongue and cheek but it does directly stem from an interesting conversation that I had with the officials from the Calgary Public School system. As Cadence is getting older, she is starting to understand more about her disease and the role that it plays in her life. She is also asking alot more "why" type questions. These are great though, she knows exactly why she needs to have insulin. Being 3 years old, Cadence is getting to the age of going to school. An exciting, yet terrifying destination for us as parents as it will be the first time that we have to loosen our grip on her diabetes. In advance of the day, I wanted to find out more about how diabetics are handled inside of the school system and was quite surprised at the answers...or lack there of that I was provided.

I asked what the policy on diabetics in school is, to which I was told that there wasn't one. I then asked the simple question of whether or not someone in the school would be able to do a simple blood test with Cadence. She's 3 years old and can do it herself, but if someone in the school could supervise it and give her some insulin through her pump, that would be great. I was given the response "our teachers are not trained to do procedures, so no that would not be a possibility, but they will provide juice if required." I retorted "but how would they know if she needed juice without a blood sugar?" and was again hit with "our teachers are not trained to do procedures."

The conversation was stalling at this point so I tried to angle it a little differently. I said "okay, so if a teacher were willing to learn, based on my instructions to do a blood test and deliver insulin based on my direction, would that be okay?" Again, I was given the "our teachers are not trained to do procedures line.".

My frustration is growing a bit here, I can completely see their point on the issue: blood, DECISIONS, and most of all LIABILITY. So I asked my question a different way. "Alright, so if you have a child with a severe peanut allergy that eats a peanut butter sandwich because they're hungry, how would that child get an epi-pen or epinephrine injection?" I received this puzzler:
"All of our teachers are trained to use an epi-pen to an allergic child"....sounds like a procedure to inject a hormone doesn't it.

Giving juice to a diabetic is the same as giving a kid with a peanut allergy a peanut butter sandwich because they're hungry. The difference is how your chosen life-saving hormone is classified.

I asked them, what's the difference if the two are just injectable hormones? If Cadence did her own bood test and she required a set pre-set bolus of insulin...what would be the difference between an epi-pen and an insulin pen?

There was some dead air on the phone for a minute...and then...."our teachers are not trained to do procedures, as I've mentioned before, but let me give you the Principles number."

What's your school's policy on Diabetes?

B.

DIRONY

No, I didn't misspell the title, it is exactly that. The heart of diabetes is it's own irony. It's a disease of paradox, where everything that should be normal is in fact exactly the opposite of. There are so many ways and reasons to hate it, but sometime you just have to admire and laugh at how clever this foe actually is. It's a brilliantly designed disease. Attacks one specific cell among the millions in your body and produces system effects. It will never be held responsible, but will end a life. Takes the simple pleasures of life and changes them to stresses. It not only affects the host but everyone around them. It truly is a magnificently designed enemy.

The irony of diabetes is especially present in kids, it wages war on the behavioural, the social, the economic, and not to mention the physical. It seems that many things that are the saving grace of parenting and being a kid are the most dangerous in a diabetic kid. Confused? Here's some examples to prove my point.

If your 3 year old has a temper tantrum, most parents would let them hash it out until they settle. With diabetic parents...we have to do that and then treat with a juice or candy since all the thrashing around causes a low. We have to reward the tantrum. Awesome.

Diabetes 1 - Parenting 0.

If you are preparing a nice family meal for you kids and one of them decides not to eat? Most parents would say "no problem, but there's no food later." If you've injected your 3 year old with a pile of insulin in this case however..."okay, let's have a bunch of candy then since you're likely to go into a coma in a couple hours if you don't eat". Reward not eating with sweets. Excellent message.

Diabetes 2 - Parenting 0.

With normal families, if your kid wants to play with friends, you find no other better stress reliever than to watch your child's endless energy expended with other kids'. In a diabetic family....you stress about how much Insulin is on board, did she have enough carbs to buffer it....did I bring enough candy to get her out of the impending low?

Diabetes 3 - Parenting 0.

In a diabetic family, there's not many more uncertain things than a night's sleep. You can't sleep while worrying that you might sleep through a scheduled blood check, miss a low and your 3 year old getting in trouble. You end up getting up anyway, check the sugar and make a decision if you can sleep for another 4 hours or not.

Diabetes 4 - Parenting 0.

So many examples of how a little thing like a pancreas can take "normal" and turn it on it's head. It's not an entirely one sided battle however.

If diabetes has the upper hand one day however, and is letting the blood sugar go high....you as a parent take great sorrow in the fact that you have to put a needle into your child for the 4 thousandth time...however there is an unspoken guilty pleasure in the fact you get to fight the disease with a sharp object. Take that Diabetes!...take that!

Diabetes 4 - Parenting 4000 and counting. WIN!! ;-)

b.

A view from the inside

We often have to remind ourselves about the little girl in the diabetic. One of my greatest fears is the regret that her childhood is less memorable than her A1C's...I must not make the mistake of raising my diabetic instead of my daughter. Too often we look at her blood sugar before we look in her eyes.

Last weekend Cadence went to a birthday party, at which she met a father of one of the kids who is also a diabetic and an insulin pumper. I've talked to Cadence alot about her pump, her "special button" (infusion site), and all about how it's pretty cool that she has one. Ending soon, are the days when she can view her disease as an advantage. I hope she adopts the mindset of opportunity vs. misfortune. The man who she met showed Cadence his insulin pump and her eyes lit up. She was almost amazed that someone else had one. It was a connection that she's not made yet in her life, an instant kinship with another person. The ability to communicate with them empathically vs. being communicated to sympathetically about diabetes. It was an extremely important moment for her and while I am so happy she had the chance, part of me feels robbed that I'll never be able to connect with her that way. We'll have a plethora of incredible moments as father and daughter of course...but the single most important aspect of her life and longevity, that Nic and I for the last 3 years have managed around the clock...is never something we'll truly understand, and she'll never being able to truly share with us what she feels. I don't wish to have Diabetes...but I do wish I knew what it was like so that I can be there for her in more ways than the guy with the sharp stuff.

So, they talked for a few minutes and she asked him if he cries for "special buttons", to which he says "no... I don't cry, but sometimes they hurt, and sometimes the don't."

Cadence just said "Yep". That was the expanse of the interaction... but it completely changed her diabetic experience. Perhaps she now knows that there are others out there.

We interviewed a nanny last night for the girls as Nic really wants to get back to work. The nanny, is also a type 1 diabetic. We look at this in two ways, one we feel very slight some reservation about the remote possibility of her having an insulin reaction while in the care of our kids....in the other sense what an advantage for the care of Cadence. Someone with an understanding of what it's like. The nanny showed Cadence her insulin pen and blood checker, to which Cadence again had an instant connection.

For the last 3 years, we've tried to make Cadence's condition as anonymous as possible, try to make her feel as normal as we can. Perhaps however, we haven't defined normal properly. Perhaps more exposure and more frequent interactions with diabetics is what she needs in order to frame her world as normal. Perhaps our vision for her, is incompatible for her? I wish I could see the view from her eyes, so that we can make the best decisions possible...perhaps that is however, the crux of parenting.

b.

The State of the Diabetes Union

I had a fantastic evening last night at the JDRF research symposium in Calgary last night. Good presentations, sensational families. It was great to meet like-minded folks. It's amazing that when we, as diabetes people, always seem surprised when we meet someone in the wild with a similar story. Instant kinship. It kind of reminded me of the dog park, where everyone has something in common and the thirst to say hello and find out about this other human being is insatiable.

I have to say, amid all the research and fundraising talk, there was one presentation that blew the room away. Colton, at the age of 11 controlled the pin-drop. He is the youth ambassador for the JDRF walk to cure diabetes. He gave a 4 minute monologue of why the walk is important for him, being a type1 diabetic. It was, in my opinion, the centrepiece of the evening for generating fundraising interest. Great job Colton!

The research presentations, as mentioned before were overall very good. The JDRF has embraced the idea of investing in people. I thought the bridge financing idea for companies with unique therapy ideas is revolutionary. Level the playing field a bit for research and treatment to succeed or fail based on it's efficacy and less on the financial burden of approval. I also thought the diversity of funding focus a breath of fresh air. The JDRF seems to be a growing snowball, the energy and passion in the room last night was palpable.

The CGM talk...well...seemed planted by the national sponsor to be honest. The data/research presented was outdated, the technology has not progressed in any significant fashion in the last 5 years, nor have the devices to monitor it. The distinction needs to be made that the CGM does NOT measure blood sugar, even though the presenter last night said it did measure "blood glucose". I think CGM is a vital key in the future of Diabetes care, but a couple of breakthroughs need to take place, including a way to directly measure blood sugar...not a calibrated algorithm of intertstitial fluid. For young kids, stable blood sugars are a luxury, the requirement for stable blood sugars in order to calibrate the CGM defeats the very purpose that parents want to use the thing. We wait for a better solution. Secondly, the marry of an infusion site and a CGM site into one unit is crucial for widespread adoption of the technology. Getting around this problem is going to also be a tough one in that the sites themselves will be difficult to produce in a cost effective manner. To explain further, a CGM site is approximately 40.00 per use. An infusion site is approximately 35.00 per use. So you're talking about doubling the cost of one infusion site, plus the fact that you can't guarantee or predict that both the CGM sensor and the cannula will have the same life cycle. At any one point, you will either be without CGM or good infusion. Either requires a site change, again worth 75.00 dolllars or more. I'm having trouble seeing how this is going to work for people but remain full of hope that the technology will progress sooner than later.

The presentation on the Edmonton protocol research was also quite good. They are making significant improvements in the life span of the implanted islet cells and reducing the complication rate of the immune suppression therapy. The overall success rate is improving but still not at a rate to make the procedure appropriate for the masses. I tweeted a question last night regarding whether or not a diabetic, if faced with the decision, would choose insulin or lifelong immune suppressant medication? The response was 100% insulin. Therein lies the elephant in the room. What research is being done to overcome the fundamental problem in type 1 diabetes? What is being done to try and overcome a diabetic's biologic intolerance for their own pancreatic islet cells? Dr. Senior has shown that the therapy works, upon implantation insulin is produced, but it's a matter of time before the cells are killed off. My personal opinion is that gene therapy will be the answer but that's a long way off from a marketable solution. Dr. Senior and his team have dramatically changed the way people look at a cure however and their efforts need to be STRONGLY supported.

If there was ever an opportunity to support the position that now is a great time to diabetic (if you have to be diabetic of course). I hope everyone that reads this post makes an effort to support a team in the JDRF walk to cure diabetes.

Oprah on diabetes

I have to say, I love Oprah. I would be lying if I said I've never seen it, but the episodes I've caught, her energy and ability to connect is unparalleled. I always think about that scene in Oceans 13 where George Clooney is caught by Brad Pitt drinking a bottle of wine, alone, watching Oprah with a hint of tears in his eyes. In Pitt's attempts to rob Clooney's manhood from him...he gets caught up in the episode and his eyes well up. Great scene and so true.

A subject near and dear to my heart is of course Diabetes. You can imagine the excitement about someone like Oprah taking on the disease and making it relevant to the masses. She had her usual panel of energetic non-doctor doctors...meaning the ones that remove the white coat and connect with people (imagine that). They focused on the sensational and horrifying aspects of lack of control, showing amputations and other stuff, naming diabetes as the "silent killer". Okay, cool now everyone's attention has been focused....

Now I have to disclaim that I am absolutely in the minority of the populous by being type 1 diabetes centric. I manage one on a day-day and night-night basis. 90% of the diabetics out there are type 2. So of course mainstream media will try to communicate with a 90% market share vs. a 10%. That's just good business. Oprah's show is a business, with all of the philanthropy and connection that she brings, it's a business that makes money, freaking gobs of money. Type 2 diabetes will be the single largest financial burden on the planet (not just the health care system) in history, and that means that smart companies will be seeking ways to capitalize on it, we can only hope with good intentions. The most motivated customer is someone that has something to lose, exponential motivation when a life is on the line.

I wanted Oprah to clarify in the episode that:

- Kids get type 1 diabetes without any opportunity to stop it. Their own body (pancreatic islet cells) fails them.
- Adults get type 2 diabetes having ignored 15-20 years of preventable lifestyle habits. They failed their body. (in most cases anyway)

I'm asked on occasion, which means it's thought even more that between the ages of 0-8 months, we fed Cadence too much sugar and therefore she got "Diabetes" at 8 months old. It's not the fault of the person asking, it's just that the delineation between the two types is not made clearly enough, even by our own advocacy groups. The greatest disservice to type 1 diabetics was that we didn't get a cool and unique disease name...like "pancreatic insufficiency" or "islet apathy" LOL, I like that one.

Oprah and Dr. Oz, in my opinion, covered Type2 diabetes very well but didn't seperate the types properly, but the message of the show was a good one, and that is prevention is the key to save lives and lightening the immense impending health care system pressure from diabetes in general. When they talked about "warning signs" one of the top 5 was neuropathies, which are typically a late stage complication. What was left off the list was these 3 things (for type 2's):

1. Poor dietary habits - everyone who eats a big mac knows they shouldn't.
2. Poor/lack of exercise
3. Overweight.

How do those get left off the list?? The three silent but OBVIOUS symptoms aren't talked about??

I also wanted her to clarify that a 2 year old with 65-75 years of Type 1 diabetes expense, as much as 1000.00/month, may be as expensive to the system as type 2 diabetes. I don't know if someone has looked at the numbers but I bet it's close, but it wasn't touched upon. Dr. Oz said, with type 1 there's nothing you can do to prevent it, but there's alot of treatments for it....he should have said but why aren't these preventative measures funded and supported? Only outcomes, PREDICTABLE, expensive, and inevitable outcomes from the disease are funded and supported.

From a health care system standpoint, there has not be a death recorded from diabetes since the mid-70's. It was taken off of the list of possibe causes of death. Diabetes doesn't kill people, the complications of the disease do. Want to know the local irony of that policy? Preventative measures for type 1 diabetes (needles, pumps, insulin, test strips) are NOT covered in our health care system! The financial burden for control is shouldered by the caregivers based on their financial wherewithal. Treatment for severe retinopathy, neuropathy, organ failure, obesity, etc...are covered by the system! Talk about a band-aid for a bullet wound. If diabetes was labelled as a fatal disease, more might be available in advance of the inevitable.

Progressive thinking by governments about funding truely preventative measures for all diabetics (supplies for type 1's, fitness and lifestyle for type 2's) would save the health care system TRILLIONS. As it stands now...the deck is stacked against diabetics to fail...whether they had a fighting chance to avoid it or not.

I thank Oprah and Dr. Oz for doing a decent job of covering the topic, most of all bringing awareness, but I hope for a part 2.

Silence is deafening.

Every parent tells their kids not to cry. "stop crying, stop your whining, grow up, etc"

Perspective is everything, we don't see what not expresssing emotion in a child actually looks like.

I did today.

There is a saying that the "silence is deafening". A useful saying to describe how the sound of silence can create an avalanche of chatter in everyone's self conscience, the deafening roar of self doubt that comes without the release of sound and word. A weakness of a social organism is that without constant communication or environmental stimulation, we must face the fear of our own inner voices.

Today, Cadence had her A1C testing, Thyroid testing, and Celiac disease testing. These are all done by drawing venous blood from the patient and running a series of tests. Since Cadence was diagnosed, she has a white-coat anxiety. She may not consciously remember her diagnosis but certainly there's part of that experience that must subconsciously stay with her. The phlebotomist wrapped both arms looking for veins while Cadence looked on, sitting on my "wap". With the decision that there was not a good enough vein in her arm, they decided to go into her hand for a vein. With shooken hand she moved the needle through the skin and into the tiny vein, the entire time, Cadence watching silently, me holding her tightly. As she moved the needle back and forth, up and down, round and round looking for the blood, Cadence's eyes never moved from the needle...tears at bay. She shook on my lap and her face turned purple, shaking with incredible power, I could feel the sweat forming on her back against my arm...but she wouldn't break. True courage beheld. The silence of her courage was DEAFENING.

When the phlebotomist decided that it was not going to work and they needed to go back to the arm, Cadence looked at me and said "I don't want another poke", her hair wet on her brow. All I could say is that "I know sweetie, it'll be over soon". The second needle, plunged into her arm...she held fast for a few seconds, shook, turned purple and then lost it. Crying, sobbing, writhing against all while the 2 phlebotomists now hold her arm firmly to draw the vials. Cadence never took her eyes off of the needle, fixated upon the blood coming out.

Once it was finished and i had her settled, she looked at me and said "daddy, I have to use the potty"...as if she felt guilty for violating the no-cry principle. She sat there, holding my hand, and spoke quietly about the jelly beans she gets for successful potty excursions. Almost like she didn't want to bring up the "poke", escape from the environment and focus on jelly beans. We could all learn how to deal with stress through a toddler.

Parents often wish for silence from their kids....we should all take a moment to determine how loud that silence actually is.

b.

Little bursts of honeymoon

What's a honeymoon?

It's a little break from Diabetes. A type 1 can expect that at some point in their lives, their pancreas will magically kick back in for a period of time. Often it can follow an illness, ironically, much the same way that diabetes follows an illness. The "Honeymoon" as it's called, can last anywhere from a few hours to a few months, even a few years in rare cases. Imagine that, as a diabetic, you wake up one morning and your diabetes is in remission! No more shots, no more carb counting, no more 2am lows as you awake covered in sweat, disoriented looking for anything with sugar in it. Or that morning high blood sugar where you feel like you want to crawl out of your skin, the same skin that you have to plunge a syringe into to get control. A honeymoon is a little slice of happiness and confusion rolled into the same package.

Diabetes is a condition of routine. You eat what you eat because you've pre-planned what your sugar will do. You eat when you eat because that's what you've planned for with your insulin. Variations in any number of factors only leads to chaos and correction, which is why so many of the diabetics in the world are resistant to try newer, more advanced insulins, pumps, CGM's, etc. Change means uncertainty, uncertainty leads to stress, and stress leads to more uncertainty, all of which mess with your sugars and challenge your sense of control.

It would seem from all of the above that a honeymoon would be a romantic breakaway with any food you like, whenever you like, a full night's sleep (WOW), a untethered second helping of dessert maybe....hmm that does sound good. In reality however, for a caregiver of a diabetic at least, it's kind of like driving into the setting sun. It's gorgeous but you can't see a damn thing and you're not quite sure when it's going to end, just that it will. Every parent has this little flicker of hope during the honeymoon that maybe it's gone for good, but inevitably the highs come back and the glimpse of the cure fades.

Let me clarify that I don't mean to imply that honeymoons aren't great things. They are awesome for the diabetic I can assume. Come to think of it, maybe it's actually just hard on the caregiver as you're always looking on a map that you can't see. Maybe for the owner of the disease it's something you can feel?? I'd love to hear opinions on that foresure.

So, on Wednesday and Thursday we are on day 4 with a leg site on her, which only ever lasts until the 3rd day...and she's had 55 carbs of unbolused correction to handle sugar at or below 4.0mmol/L all day with a 30% cut of basal. It's stressful for us but such a nice little treat to see her system actually working. It shows that theres hope that one day we can hack into and crash the program that tells her islets to stay on the sidelines. I would LOVE to see them to come off the bench for a little longer.

8:30am 13.6mmol/L with 0.25 to correct, back to routine, thanks for the honeymoon.

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.

The gorilla in the room...

The 2 most common questions:

1. How is Cadence, have you got the diabetes under control?
Answer: As of her last check an hour ago, she's under control.

2. Does Hailey have it yet?
Answer: No...I hope not.

Nic and I were hit from all sides on the debate about more children after Cadence was diagnosed with Type1 diabetes after just finishing a 6month bout of colic.

"You have enough on your plate"

"You guys really need to have a good baby next time"

"Why take the risk, what if the next on gets it?"

There's something about the constant puking, green poop, and long nights pacing the floor that the SMILE when I say "Hi Baby Hailey" doesn't completely erase. It's all worth it man to see her just so happy to be.

I find myself unconcerned for the most part about whether or not Hailey's islets cells are slowly shutting down. There's no way to know really, just wait until the Gorilla in the room (you see the analogy I hope) wakes up I suppose...if it does at all. The other day I went to check on her in the middle of the night and the diaper was absolutely full and she was very hungry/thirsty for milk. What was my first thought? Of course it was: I wonder what her blood sugar is....but i never checked. Change the diaper, give her some milk, and head back to sleep and hope that in the morning the diaper is bone-dry, which it was.

The truth of it is that for kids diagnosed under the age of 10, the risk of a sibling developing the disease is less than 1.5%. Is a 98.5% chance of a perfectly normal little baby/child worth the risk. That smile answers the question every time, you bet it is.

Finding comfort in the unfortunate.

We had a wonderful night tonight.

Cadence had a tantrum, pee'd on the floor, splashed the pee-puddle onto me, pooped in her diaper, Hailey puked on my shoulders, arm, foot, shirt, shorts, and shoe, and we had a blast with "baby JJ" who only filled one diaper and his lap with food.

Two friends of ours became much, much closer friends. Two children that have only had one meeting now have a lifelong link. Diabetes is like any other disease in that it has no preference for who it affects, nor does it care how many it affects. It can't however choose who fights against and who they fight with.

Tonight was a rebuttal of sorts to the lurking "D" that we meet everyday and hate each time. Jeff and Karen remind us so much of us and JJ reminds me so much of Cadence a few short months ago. The link between Cadence and JJ was uncanny, at least from Cadence's perspective. Someone with diabetes......let's talk jibberish and figure it out is what they shared. Cadence knows she's different and knows JJ's different...that bond is forever.

It's amazing to watch a child have an injection of insulin. The ultimate of love-hate. You see the squint and tears but rejoice in the fact that the facial expression ensures another 4 hours of diabetes bliss...good sugar. Then the check, the discussion, the decision, the half hour in bed wondering if you made the right choice, only 90 minutes to sleep before the next decision.

It's unfortunate that our families are drawn closer as a result of our Children's misfortune but I can't imagine a better reason for families to come together than that of mutual support and dedication to our Children. We sadly welcome JJ to the D-family and wish he and his wonderful parents nothing but good sugars and a cure down the road and we couldn't be happier to have good friends to be good friends in the good bg's and bad. J-K-J had a hell of a week that we wish upon noone, but have handled it with incredible poise. We've done what we can tonight but hope they know that there are others out there and we are just a phone call away at any time of the day of any day. Diabetes never rests, nor will those that battle it. The bond that we share is a lifelong struggle for future generations and what more noble cause than that.

9.7 with 0.35 onboard....another 4 hours of peace.

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.

Cute diabetes moments...

I woke Cadence up at 4am this morning with a 3.0 blood sugar. This was after a juice before bed that we only covered half of the carbs for. New infusion sites these past few months, one low day, one perfect day, one high day...rinse and repeat.

So, I took Cadence to the driving range for the first time yesterday, with her new set of US Kids golf clubs, including the BIG DOG. She probably bashed her way through a large bucket on her own before stating "time to go home dad." My Mom was with us and bought her a Big Dog headcover for her driver (Big Dog). So when she finished her juice at 4am, we had to make sure the "Big Dog" was under the covers with her.

Cute.

B.