I haven't blogged since when?????

No way!!!!  It is not possible that it has been three months since I last posted on here....

 

 

Well, for those of you that thought I had fallen off the face of the earth - it ain't so.  My mind may have, but I have been here all along.

 
 

So... being 10 minutes past my bedtime I'll do the super-duper coles notes (x18 = cliff notes) on the last 92 days.

Had a beautiful day for Jonathan's Journey's Second Annual Carwash and netted a nice take for JDRF

Walk day was awesome.  Sunny, not too hot, great turn out and best walk day total in local JDRF history.

Jonathan's A1c at his July check-up was down to 7.7% (clinic's target for his age is 8.0%)

The mentor program is off the ground and the outreach group is retooling for a September relaunch.

I finished tonight my first draft for the school policies talk at the Back To School event on the 31st.

Ok, I'll admit it.  I got in a real funk in the spring.  I don't know exactly why, but it was almost worse the the months post-Dx.  Whatever the cause though, the fog seems to have lifted somewhat.  Almost 2 years under our belts and some new changes coming up, maybe I cleared that hump.  Who knows.  Anyhoo, things are pretty good and for the most part really routine.  In the case of T1D though... I'll take boring any day!!!

Delusion, a chimera in my brain, a fancy, my ignis fatuus

"Normal is what everyone else is and you are not." Dr. Soran - ST:Generations 

    I was told shortly after Jonathan was first diagnosed that we would "find a new normal".  At the time, I thought that meant that we would integrate Diabetes into our lives and eventually the wound it opened would heal around it and it would just become a part of us.  In a way I guess that's kind of what happened, but I think it went a little beyond that.

   Yesterday, as I was approaching the verge of a mini-mental collapse over a bunch of BS at work, I sat down with someone to talk and they were surprised about how stressed out I was over the matters at hand.  They said, "well, I'm sure things at home aren't helping either."  I knew they were referring to dealing with my son's Type 1 and at first I was about to dismiss the notion that it could be a major contributor, but then it suddenly hit me - my little boy's life hangs in the balance of decisions I make every day, he's basically on life support and that which keeps him alive could kill him.  We've barely had a solid night's sleep in 20 months and there are many more nights to come...  And then it smacked me like a ton of bricks, somehow, some way, this had become "OK".  And I thought to myself "WTF!?!?!?!"  This is NOT OK.  This is not what a 5yr old should have to live with, this is not how a family is supposed to be managing their lives, this is totally wrong.

  I think what happened is (and I don't want to give it up, but I think I'll have to change my approach) in all my efforts to make life an normal as possible for Jonathan and the rest of the family, and trying to assure people that things are under control and all is well, I somehow tricked myself into downplaying just how perilous and damning this thing can be.

   Then, just last night, after a day of phenomenal numbers (like non-diabetic numbers), Jonathan was a little high at 10pm (13.5 / 243), so I pushed his buttons and didn't really give it a second thought.  At 2:30 this morning I did my nightly shuffle into his room to find 2.9 (52).  Oh $#!^!  3/4 of a cup of milk and 40 minutes later he was 5.9 (106) - 5.7 at 6am, and 5.9 at breakfast.  So what the heck would have happened if I hadn't done my nightly rounds?  I shudder to think, especially after a Princess' recent horror.  I've never questioned a 13.5 before, that's not totally unusual, and normally a wonky reading is over 20 and that needs to be re-checked.

   This morning I got another one.  Part of my morning routine is to check the mail, weather, and updates on my phone before moving on to get ready, and there it was on the top of my news feed:

"In my house the "medicine" that could save you, could kill you.  In my house juice boxes save lives. In my house parents never sleep.  In my house our days are measured in numbers.  In my house my child must be an adult.  In my house we dread bedtime.  In my house blood is shed every day.  In my house this is the norm.  Type 1 lives in my house."

    So despite my self-administered delusion, the fact of the matter is, there's aren't seven days a week - there are 3 days in a set.  A 2am walk to the washroom isn't something that will happen after 40 - it will be routine for the next 20.  As surely as there are 365 days in a year (occasionally 366) - there will be 3300+ bloody fingers, 122+ set changes, 4+ clinics / A1c tests, and 31,536,000+ chances to do it wrong.

   I guess "normal" is we make it, but the truth is my head has been in the sand lately, and while ignorance can be bliss it can become hell.  While living life somewhere in between I'm reminded that it's important to keep the truth in mind.

John and Jonathan

   Jonathan and I had the opportunity to do something pretty cool recently - we met John Chick of the NFL's Indianapolis Colts.  John is a defensive end who, with the CFL's Saskatchewan Roughriders,won the 2009 Grey Cup championship and was named the CFL's Most Outstanding Defensive Player for that same year.  It takes a lot of hard work and dedication to become a professional athlete, but it's all the sweeter when Type 1 Diabetes doesn't stop you.

  John was diagnosed at the age of 14 while already playing football in eighth grade.  In an instant it seemed to most like that was the end of his dreams of becoming a professional football player - not to John though.  Managing his diabetes with multiple daily injections, he continued playing and received a scholarship to Utah State University.

   In his freshman year his blood sugar dipped too low while driving after a practice and he rear-ended a stopped car at about 70km/hr (~45mph) totaling both vehicles in the incident; fortunately there were no serious injuries.  He considered this a huge eye-opener and decided that MDI was not reliable enough and it was time to switch to the pump.  Although the linked video might be considered somewhat misleading in how "automatically" the pump maintains blood sugar, he did find it to be a huge improvement over shots.

   John wears his pump all the time, even when playing, and in six years on it has never broken one despite the physicality of his profession.  He spoke to us in a very matter-of-fact way about how Type 1 has been a part of his life, but never a defining or limiting factor.  He talked about the importance of being positive and believing in ones self, but also how important it is to stay on top of this disease and make sure that it doesn't get an upper hand.

   He also emphasized that just as important as it is to not let Diabetes limit you, don't limit yourself, don't settle.  Yes he is a CFL champion and an NFL player, but being on the team - being on the practice roster - isn't enough, he wants to be the best.  As a 28 year old husband, father of four children under the age of 5, and one of the top athletes in his sport, he knows that there is still more to do and he has no doubts about doing it, diabetic or otherwise.

Pause the audio player and press play below:

   I don't think Jonathan really took in a lot of the detail of what John talked about, but sitting there and watching him stare up at this 6'4", 260ish pound guy I'm pretty sure he got the hint that diabetes doesn't mean the end of a journey, you just have to bring it along with you and bend it's will to your own.

I Thought it Would Get Easier

  I don't think I'll ever forget last year when I started my big JDRF fund raising push for 2010.  I remember making that first video and how tough it was; not technically, but emotionally.  It was even hard to write the e-mails to everyone telling them about what Jonathan and so many others go through on a daily basis and what the real risks of diabetes are even though we try to not dwell on them every day.

  So I don't know why I thought this year would be any easier.  Jonathan is a year older, a few inches taller, and more amazing than ever, but when I have to sit down and really think about it I can't help but hurt when I think about the issues he may have to face.  I remember just how much I hate this f*^%!#@ disease and how really helpless and small I feel next to it.

  Maybe it's a good thing though.  Maybe, if I can focus a little, all those nasty feelings can be channeled to fuel the drive to do something better.  Use the dark side against itself.  I don't know, I guess we'll have to see how that works out. In the mean time, I'll just keep plugging away until I get what I really want.

The "IS Trap"

  Some may argue it is simply a matter of semantics.  I call it opposite perspectives and a life choice.

  It's all about "is" vs. "has".

is   /ɪz/
–verb
3rd person singular present indicative of be.
 
has   /hæz/
–verb
a 3rd person singular present indicative of have.

  To be, to exist, to in most basic terms define one's self. OR To posses, to carry with, present in one's life.

  I made a conscious decision early on that as a father, it is my responsibility to not only provide food, clothing and shelter to my children, but also to teach and to lead and to help them develop their sense of self and become their own individuals.  So, after Jonathan's diagnosis, it didn't take much to realize that it was going to be on me (and my wife, and to an extent our daughter) to do everything we can to reinforce the difference between is and has when it comes to this disease.  There are enough hang-ups, misconceptions, and challenges with Type 1 Diabetes as it is that I can not accept the possibility that it would cause Jonathan to doubt himself or hold himself back from anything in life that he wants to do.

  Before we even left the hospital I made a very clear distinction between "being" and "having" Type 1 Diabetes.  I promised myself and, by extension, Jonathan that I would not let this define who he is; regardless of how far reaching into our lives it could become.

  So, what is the "Is Trap"?  I think it comes down to mostly verbal laziness with a small contribution by societal influences.  Here is a comparative example of the simplest form of the Is Trap:

1) My son is a Type 1 Diabetic.
2) My son has Type 1 Diabetes.

  #2 Was the one I had planned on going with all along.  It's probably the most frequently used line since it pretty much has to be said to preface any statement on the subject when talking with someone who doesn't already know.  I've noticed lately however that my "has"s have been turning into "is"s.  I'm not sure when it started exactly, but once I realized I was doing it, it dawned on me that it was going to be harder to hold that distinction than I thought and that's when I first knew about the "Is Trap".

  One thing I've learned is that you don't necessairly have to tell a child someting in order for them to believe it.  They are observant and open-minded little information sponges.  They pick things up from conversations had with other people, from how we act, and from what we do.  Worse yet, if they recieve conflicting information between what is said to them and what is said and done arond them, then not only is credibility lost, but they will tend to believe that the indirect information is probably the truth.

  Like with so many other things in life, one thing can lead to another and eventually the best intentions can turn into disasters.  So seeing the "Is Trap" really took me aback because I hadn't expected to put my foot in it so easily or quickly.  I'm hoping I've learned from this and can keep it close to me so that I don't slip into a pattern of defining Jonathan by his diabetes as opposed to remembering that is it something that is only a part of his life.

Kobayashi Maru

The no win scenario...

   I think I've been more aware these last two months than ever before that this is more about compromise and give and take than anything else.  Some days are better than others, that’s for sure, but when you fully believe that everything is going along perfectly fine and that all comes to a screeching halt in one split second, it seems to have a profound effect.

   About four weeks ago, Jonathan had his clinic appointment.  His A1c was exactly the same as it was in October, and that was up over a full % from August.

  “What was I doing wrong?” I asked myself.  Now I know that these appointments are not supposed to parental report cards, and I really do not believe I took it that way, but at the same time I was doing everything I was supposed to and we were only moving backwards.  Not only that, I was under the impression that we were doing really well and then I was abruptly told that it was in fact the opposite that was true.

  So, after leaving that appointment with new pump settings, new targets, and a new mind set, Jonathans average BG reading is now 25% less than it was a month ago and there are very few arrows at the top of the chart (actually had a two week run with none).

  We’re in a new groove, but I still have this nagging feeling over my head that wasn’t there the first year and a bit.  We can’t win, not truly, a stalemate at best.  Keep the monster at bay.

  I think Jonathan has picked up on it too.  He asks every so often “When I’m [insert number here] years old, will I still have to have site changes?”  The one that really caught me off guard was when he asked last week “Daddy… if I stop doing site changes, will I die?”  When I heard that I just about did.  I’ve tried to explain to him amid protests and pouts that the site changes are necessary to keep him healthy and safe, but some how he managed to equate that to staying alive.

  In a way, it seems the first year was easier.  There was shock and naivety and progress in the right direction.  I knew that the more his A1c went down and the better reign we thought we had on his BGs and carbs and exercise and emotions… the harder it would be to not have a “setback”, but even at semblance of equilibrium the scales seem to tip every day and an illusion of consistency is no more.

  I guess my good news is that I seem to be seeing some sort of light at the end of the tunnel.  It's a long tunnel, and I'm on a treadmill going the other way, and that light is probably a train, but it's not as dark as it was.  I'm very fortunate to have some wonderful D friends (online and off) who have been around to keep me up, even if they don't realize they were doing so to such an extent.

  I still hope and pray that this terrible disease is ultimately obliterated and live will go back to the other normal, but I think in the mean time I'm a little more grounded and ever so slightly more prepared to get my head back in the game and keep running up that hill.

Finally, a post released 2 days early

'Twas the night before Christmas, when all through the house,

One creature was stirring, but it wasn’t a mouse.

The children were nestled all snug in their beds,

As I looked and found his hand under head,

I peeled open a finger and with a muted click,

I drew enough blood to fill the test stick.

As I left the room there arose such a clatter,

I ran to the window to see what was the matter.

Up on the rooftop I heard the hooves click,

I knew in an instant it must be St. Nick.

I crept down the stairs and patiently waited,

He saw me there standing and quietly stated,

“Oh my, I wasn’t expecting to see you,

Christmas eve meetings I don’t normally do.”

I smiled at him happily and noticed his sack.

“Santa,” I said “you can take it all back.”

With shock and confusion his mouth opened wide,

His curiosity and wonder he just couldn’t hide.

“Santa, you see, there is only one thing we want this year,

but it does not seem to be a wish you can grant, we fear.”

“Our little boy upstairs dreaming of a fanciful trip,

Lives each precious day in a disease’s tight grip.”

“The gift we really want is to take diabetes away,

But we already know that tonight it will stay.”

Santa lowered his head as he pondered a thought,

He knew too well that this matter has us fraught.

A kind smile on his face and a twinkle in his eye,

He said “There is no wish gander, this I can not deny.”

“Sadly, you are right, there are some deeds I can’t do,

But I leave this for your family and you.”

“A Christmas of joy and family together,

Aside from your wish, nothing could be much better.”

He placed with care his gifts under the tree,

Bid me good night and left fast as could be.

Dawn arrived swiftly and the day was at hand,

Over was the wait the children couldn’t stand.

They cheered as they waited to open their first present,

The moment so perfect, the gift missing I could hardly resent.

The old man was right, my wish not granted indeed,

In stead, for the time, we have what we need.

Blessed by the miracles that gave us this day,

We have too much to celebrate to let D in the way.

I will wait again next year with my wish held steadfast,

That once and for all, diabetes becomes a thing of the past.

He's too smart for my own good

   Jonathan's a bright kid (and he better be if he wants to make good on his plans to become a doctor), this was no news to me.  Starting the pump just before he turned 5 I figured we wait a good four to five years before we would start teaching him how to use his pump.  Well... little man had a different plan apparently.  I guess seeing something done three or more times a day, seven days a week, for three months, he was bound to catch on to a thing or two.

   A few weeks back, Jonathan began insisting he could lock his pump himself - and promptly demonstrated the swift button presses to do it.  At first I was a little concerned that he would push any buttons, but knowing how obsessed he is about having his pump locked I thought this would be OK should an occasion arise where he was without us and noticed his pump unlocked.  Content to have him maneuver his tech to a safe place, I let it go for a while.

   Monday night, much to my horror, he unlocked the pump.  "Hmmmmm..." I thought, "this isn't good".  So we had a little talk about who unlocks and who doesn't.  He happily agreed.

   Last night, when it was time for his shower, I was disconnecting him and he proudly told me that he knew how to suspend his pump.  I paused for a moment and then decided I should know if he really could.  I handed him his unlocked pump and S#!T  Click click click - beep.  UH OH!

  While I'm impressed that he picked this up and does it without even seeming to have to think about it, I'm totally horrified that he could suspend it and go hours without insulin... or even worse yet... the unthinkable.... give himself up to 5 units without a single carb to balance it (5 is his current max bolus setting and I don't think he'll be changing that without an insane amount of bad luck).

   And so my dilemma...  Do I start teaching my five year old son how to use his pump properly or put the fear of God into him that if he so much unsnaps the case a holy hell-fire will rain down upon him?  I figure the latter will result in some sort of emotional scaring that will take reams of therapy to correct before he can ever look at the pump again, but the former just doesn't seem right for us at this time either.

   So with some serious thinking and a nice chat with a great friend (who is also a nurse, CDE, and is pretty much the go to gal in the clinic at the hospital) I think I'm going to go somewhere down the middle: there will be Jonathan jobs and Mommy-Daddy-Nurse-Grandma jobs.  Jonathan can keep his hands clean before testing, Jonathan can test and Jonathan can unlock and lock with Mommy or Daddy present.  Mommy-Daddy-Nurse-Grandma are the only ones who can push other buttons, and most importantly - Jonathan NEVER activates insulin (by the way, I know he knows how because he talks grandma through it step-by-step).

   Even giving him a little responsibility with the pump specifically is terrifying.  He could test all day long for all I care (as long as he is at least testing), but to push pump buttons.... I think this is what handing over car keys someday might feel like.  So hopefully, for my sanity, at least a few years of pump drivers ed and then we'll see where we go from there.

One wish

   Aside from publishing this post today being significant in that I squeak in without a full months absence from the DOC scene; it's also a day that I feel I should (to a certain extent) be entitled to get want I want.

   I really only want one thing.  I know I'm not the only one who wants it.  I'm willing to bet that just about everybody reading this wants the same thing.  You could say it would be an ultimate one size fits all.  And if I really wanted to play it up for the holiday season, I could say that it's not even really for me at all - but still, it's what I really want today.

   Amongst all of the things that I have learned in the past fifteen months and change, I've re-learned and probably to a finer degree, what I really need... the things in my life that are really important to me.  I guess when you have a child (or children) whose lives are at risk every single day and the unthinkable can happen even without so much as a warning, certain things become amazingly clear.

   I need my family more than anything else.  There are a lot of difficult and hard possibilities that we could face - especially in these often tough times - but even the threat of unemployment, foreclosure, and persistent creditors I think pails in comparison.  Thankfully we've been greatly blessed and have weathered the past few years well; still I can't imagine anything that could have happened that could come close to the horrible reality that has hit too many families.

   I realized a few years ago why I am here.  I didn't become the famous architect that I had grandiose dreams of in my younger days.  I did not amass great wealth and luxurious belongings.  I don't while away all of my time with globetrotting and fanciful events.  All of the things that I once believe were going to be my benchmark of success.  Instead I was blessed with something far more deeply meaningful.

   My legacy will not be a tourist attraction, it will not be a great literary work, it will not be a piece of stone or canvas for people to adore.  Indeed, my legacy may prove to be more profound than all of those put together.  It turned out that what I wanted was not what I really needed, but by grace and luck I stumbled into something far better than I could have ever imagined.  What I, with my wife, brought to this world are two beautiful children.  Full of wonder and curiosity, charm and joy, love and kindness.  In retrospect, I find my dreams of years ago mostly silly now as I know that those things could have never brought me as much as these two little miracles.

   I think that last year I was probably still overwhelmed being only about 14 weeks in, but this year as it got closer and closer I still could not think of anything else that I wanted.  Even today when people asked, only one thing came to mind.

   Today I realized that until there a cure, I will never blow out another candle with any other wish.

Hidden in plain sight

   All I saw was about 4" of tubing and I knew he was one of "us".  This morning, two pews in front of us I noticed the short loop protruding from under shirt and I knew what was at each end of it.

   It's interesting, I think, to stand back and look at the world from outside the DOC, the support groups, the fundraisers, the clinic appointments, and to for a moment take note of and appreciate the level of unawareness there is.  I'm willing to bet a weeks worth of lunches that not even my aunts and uncles on either side of us even noticed let alone the rest of the congregation.  Jonathan saw the Medtronic clip on the outside of his pocket and knew right away what it meant.

   It's almost like a secret society.  If you know what to look for, it really doesn't take long to find it.  Somebody has their pump clipped in their pocket.  Somebody has a blue circle pin on their jacket.  Somebody has a sneaker on them somewhere.  Yet at the same time, when we go back to normal speed it all gets caught in the blur.

   Shortly after Jonathan was diagnosed, I found out that someone I had known, more of an acquaintance, of about 2 years had been a Type 1 for almost 20 and I never would have guessed.

   I guess my point is, it's all around us.  Aside from our own D battles, if our children (and some of us) didn't have diabetes, it would still be there and as prevalent as it is, it's still hidden.  There are no braces, or crutches, or chairs, or special transportation, or physical differences or interpersonal challenges.  It's all hidden on the inside, sometimes only as deep as a t-shirt.  No wonder it's so hard to get people to understand and remember.

   But I do have hope.  I do because I am seeing it more.  I'm seeing more stories in the paper, and online, and TV, and radio, and I hear people talking about it.  Maybe I'm overly optimistic, but some days it feels like a snowball that is going to roll out of control and avalanche the world with information and awareness.  At least I hope so, because in order for them to help, they have to know.

   November 14th is World Diabetes Day.  Tell everyone why next Sunday is so important.  Tell them why it's a BiG blue day and keep pushing that snowball.

The truth is... I am Iron Man

   Maybe it's because he's such a great looking guy....  Maybe it's because he's so popular with the ladies....  Maybe, it's because he really is as cool as a billionaire playboy...  Or maybe, just maybe, it's because he has a miracle of technology plugged into his torso.  But no matter how you slice it, he's my hero!

   Someone asked me today "How do you do Halloween with Jonathan?"  To which I responded "Well, first we find a really cool costume, then we dress him up and give him a bag.  Finally we send him running house to house screaming 'trick or treat'..."  And I was once again labeled a 'smart-ass'.  Fact of the matter is, we all know it looks a lot easier than it is.  

   Factor in assumed activity to the dinner bolus, set temp-basal, check BG often, have juice boxes on hand, and try to keep up.  I've never been a much of a juggler in a practical sense, but it kind felt like we were marching down the street with our balls in the air.

   I'd like to consider myself to be fairly non-judgmental, and I honestly don't remember having an opinion on diabetes and Halloween before, but I can imagine there of plenty of people out there who would shake their head at the notion of a diabetic child going trick-or-treating, and maybe even a few who would question our fitness as parents for allowing such an activity.  The simple matter of fact though, is that Halloween is no different for a diabetic child as it is for any other (at least not in their minds) and the irony of it is that most, if not all of our kids, actually are healthier trick-or-treaters than some of the other kids because they are typically more responsible (ok, with some guidance) with their sugary treats and don't gorge themselves on piles at a time (like I did when I was a kid).  He, and his sister, each get one - occasionally two treats per day as desserts after a meal (usually lunch - sometimes dinner), and his is factored into his carb count.

   Halloween this year, that is the night of, wasn't as big a deal D-wise as some may think.  Actually, there was no candy consumed by either child last night.  In D terms it was no different than a long after dinner walk with some extra fun thrown in.  I really don't want to over-simplify it (a 3.8 / 68 half way through was a big F-me moment), but the things is as much as it's harder than some may think, it's more doable than they might imagine.

   The thing that amazes me though about Jonathan is, over the past year had change, when special treats come up he doesn't put up too much of a fuss if his sugar is high and he has to wait until later.  He's shocked the hell out of both his teachers with how good he is about it.  Not just Halloween, but birthday cupcakes, craft snacks, and a number of other seasonal items.  Sometime he's not too high and there's no concern, but if he's in the 20's (>360) the teacher feels uncomfortable about sending him up higher, and really she's right.  As much as I don't want him to be excluded from special activities, he's better to wait until later for that special treat and have something more sensible at the time.... and he never puts up a fuss about it.

   Calm, cool, collected... and great tech for battling evil... he is a real Iron Man.

A Moment to Celebrate in a Journey Unfinished

    Last night was a good night.  I came home so wound up I didn't think I would be going to sleep.  My nervousness had been building all day as I counted the hours until I would take my turn in front of the school board with our good friend Nicole.  I rushed through my morning routine to listen to her interview on the radio.  I cursed the satellite company because they don't carry the channel that her televised interview was on....  I could NEVER be a mother of 6, let alone keep up that pace (she rocks!).

   As much as I feel uncomfortable with public speaking, I couldn't keep silent on this.  School was our first and biggest issue beyond diagnosis.  The issues with some of the schools gnaw at me incessantly.  So, when I saw the opportunity to work with a great group of people and fight for change, I didn't think twice and I've never looked back.  Change is necessary and must happen.... and last night the big wheels moved a little bit in the right direction as the school board trustees passed an amended motion to have administration create a consistent policy for students with chronic illnesses.

   I kinda expected that a stand-alone policy on Diabetes wasn't going to be the case and we'd end up as a chapter in a larger policy covering many diseases, but in a way I'm glad.  Working with Sue and Mark and Jan and Nicole has been, and continues to be, a great experience and if our work can help open doors for others, then I say all the better!

   I'll admit, I haven't been around that long.  This fight has been going on and off and on again for quite some time, so in the grand scheme of things I'm a little piece in a huge puzzle, but I am so thrilled and proud to be that small piece knowing that we are moving forward to better situations for our children and their friends and classmates who need this fight fought.

   Administration has until January 2011 to draft a policy for debate and voting.  Yes, there is still a possibility that this could get dragged out for God knows how long, or worse yet shelved.  There is a lot of work still to do in the coming months.  Our supporters are growing and we will need them just as much as we move forward and have our say in the policy and promote and support it in January.

   One of the first things I learned about dealing with D, and turned out to be a valuable life lesson in general - celebrate your victories, and then build on them.  I could never adequately put into words the respect, gratitude, and appreciation I have for those who came before us in this fight as well as the same for those who are with us in it now; what I can do is use every means at my disposal to continue the fight and help ensure that we only gain ground.

Last night's speech to the board:

   Good evening and thank you for this opportunity to address you.

   I have a 5 year old son who was diagnosed with Type 1 Diabetes 16 days before his first day of Junior Kindergarten.  It changed his life forever and we now battle a disease that is 24/7 and potentially fatal.

   Still in shock over the diagnosis, we were shocked again by how ill-prepared and unable the school appeared to be to support a young student with Type 1 Diabetes.  Jonathan turned 4 on his first day of JK.  Diabetes management and self-advocacy were (and still are) far beyond his ability. 

   During the first week as I met with the teachers and the principal and tried numerous times to contact administrators, it not only felt as if I was the first parent with the first Type 1 child in a primary grade, but worse, it seemed as if he was not going to be able to attend school at all.  We value the Catholic education system and the important role it plays in the development of a child; denying him his Kindergarten years was not an option we favoured. 

   Fortunately, after much persistence and determination throughout the first months, we were able to cobble together a care strategy for Jonathan.  This was a daunting task, that at first seemed impossible and in retrospect had a level of difficulty that shouldn't have been necessary.  We had to do this in isolation and with no apparent precedent.  We not only had to invent the wheel, but engineer the machine.

   Despite the roadblocks created by policy and apparently unwritten rules, we have been blessed with a principal and teachers who work with us as much as possible, within the limitations imposed upon them, to help ensure his safety and scholastic success. Our achievement, even with it's shortcomings, is not common and without standards in place, not only does every family have to take on this feat alone, even maintaining the level of support some have achieved is threatened by things as common as teacher and principal changes.

   There are upwards of 240 individuals of school age in one Windsor clinic alone, with an average of 29 new diagnoses per year of age 16 and younger.  Since this topic was last visited here, 2 more students have been diagnosed within that clinic.  This also does not include children receiving care outside of Windsor nor those grandfathered into the endocrinologists private practices.  Type 1 Diabetes is the #1 chronic illness among children.  This is not going away anytime soon.

   We are not asking that teachers and staff become medical professionals however, we are asking for standards and consistency as it pertains to the daily needs of students with Type 1 Diabetes, including:

- Clearly defined roles and responsibilities for parents, students, teachers, staff, and administration.

- Mandatory diabetes education of all school personnel who will be in contact with the student.

- Definition of the needs and rights of the students as well as anti-discrimination guidelines.

- A template for student specific care plans that would be developed by the student’s parents and executed by school personnel.

   There is no need to wait for a tragedy to prompt legislation as was the case in "Sabrina's Law".  We are fully aware today of the risks, and the appropriate steps necessary to mitigate those risks.  A policy, fostering a consistent and focused approach, would not only help facilitate a smooth transition, but would also eliminate the way each student is subject to the arbitrary decisions of individual schools.  With educated teachers and staff and a care plan in place, school personnel will be far better equipped to support the student’s needs.

   To delay or dismiss this would be an unconscionable violation of our faith and values.  Implementing a policy to better address the needs of the students is a small measure of work that could very well save lives, the lives of our children, our students; the lives that we claim have an importance second to none.

Today's article in the local paper:

***WARNING: There is a huge error that Nicole is working on getting a retraction printed - she was grossly misquoted.  I debated on posting this link, but I think it is a good reminder that no matter how many times we repeat ourselves and try to get the message across, there is enough ignorance* (for lack of a better term) that bad information can still get out and we need to keep sending the same messages to help people become properly informed.

*I use the word "ignorance" reluctantly because this guy is a good reporter and did well to get our story to print right away, but made a critical mistake because he misunderstood.

Catholic board to craft health issues policy

    Thank you to all those who support us, and thank you to all those who inspire us.

The Princess

   I'll admit it, I have a great deal of guilt about this.  I racked my brain for the last 24 hours to think of something, anything interesting in my life that has nothing to do with Diabetes.  Me?  Well, not so interesting.  My work?  Yeah, no, this would be a 3 day b!*@# fest.  It took me almost 24 hours to figure out what to write about.  Here comes the kick in the head.  It's Alexandra.  I have a beautiful six year old daughter that is my princess, one of my few true loves, and it took me a whole day to realize how little time I spend talking about her.

   On December 10th, 2003, I took my wife to the hospital for the first steps of having labor induced.  The following day we went back for the big deal.  I remember sitting in the room finally cracking the book she bought for me "So, You're Going to be a Dad".  It was a fairly calm event in the beginning.  The nurse's name was Grace Kelly (yeah, how could I forget that).

   Shortly after 5pm she was having an emergency C.  There was meconium in the womb and she was not dilating past 4cm.  We actually bumped another mother out of the OR, which may not be a big deal on any other day, but this was the grand opening day of the new ward at the hospital and the closing of the maternity ward at the other hospital.  Alexandra was officially the first baby born after the big change.

   After a big fight - Alex vs. the OBGYN (she scooted to the top, not wanting to come out, first proof of superior intelligence) I remember, and will never forget, the nurse handing her to me.  I cried as I fell in love in a way I never had before and never before imagined possible.  She was the most beautiful little person I had ever seen.  It was a perfect moment.  It's a moment I can't help but get choked up over every time I think about it.  If I were Robin Williams in Hook, this would be my happy thought to fly.

   I know everyone says their little baby is the most beautiful and special - everyone's right - but Alex was our little bundle of beautiful perfection.

   She has grown and changed quite a bit over the years.  She is smart and goofy.  She can get her b!*@# on, and she can give you that look that will make your heart melt.  I've tried extra hard in the last 13 months, 1 week and 2 days to make sure that she gets some extra special attention.  Unfortunately, the matter of fact is that Jonathan often needs a little extra.  I try to, each week, make some special time for just her and I to do something.  Usually it's Sunday mass and then brunch, but with recent changes Jonathan can now more easily join in odd hour meals so he's joining us at church.

   Alex is in grade 2 now.  She is quite popular and has many friends (she's doing way better than I did anyway).  She's not perfect; a little better than the average student, but she's bright and full of life and her teachers are quite pleased with her progress.  She says she wants to be a dentist when she grows up.  I'm sure that may change a dozen times before high school.  Really, it doesn't matter to me what she chooses as a profession as long as she's happy, secure, and has a full life - God willing some grandchildren for us so I can have some sense of payback.

   I love my little girl more than life itself.  She is one of the most precious gifts I have ever received, and I will love her for ever.

Here is my Princess:

There may have been more air in my head than in the line

   Yikes!  28.7 (517)!  That was the call from Latchkey at 9am this morning as I was in the middle of a conference call with a customer and our plant (not to mention the pesky sales guy that was motioning to me through the window because he needed something for another client).  My first thought: #*@&!, another kink.  My second thought: Latchkey can pump - go for it and call me back in an hour!

   10:10 Latchkey: "He's 7.7 (139)."  Me: "Did he have his snack yet?"  Latchkey: "Yes, at 9:30.  We're going outside to play now."  Me: "Ok, that's a much better number."......  After I hung up the phone my math thingy started working.... 28.7-7.7=21.... 21/1hour.... #*@&!.....  Wuife IMs me: "You probably should have had them test again to confirm the high."....  #*@&! And in the car we go.......

   I get to the school at 10:20 (it's only about a 15 minute drive from the office).  I test him again - 7.4.... Phew!  I pull out his pump to double check settings (I did a quick-draw battery change this morning right after breakfast).  All is as it should be.  Then I notice at about a palm-width outside the reservoir there is an air bubble about 1 1/4" long.  #*@&!  Then I look along the line and see about a half dozen ones along the way.... #*@&!  #*@&!  #*@&!  So now I wonder if it was a bad reading or he wasn't getting insulin... I give my head a shake and look at the math again 21 / 1hour....  Bad reading.  I disconnect, pull the reservoir, tap the air that wasn't there a day and a half ago out of the reservoir, rewind, prime out the air, reconnect.... stopping short of a fixed prime... Phew!

   I put him all back together and make my notes.  It's only been about 15 minutes, but I test him again... 6.9.  OK, he's pretty much flattened out, no need to give carbs.  I ask them to test again at 11 and call me.  On my way back to the office I call the clinic to let them know what happened and get caught up on their feedback from the weekend and yesterday.  Mary suggests to me to give him a little something.  I take that beautiful and correct piece of advice and stick it in the back of my head thinking if he goes south again at 11:00 (just 15 minutes away now) that I'll do that, but I've fallen for this trick again and bounced him right back up.  We chat for a while, schedule the pump changeover for Friday, and ponder the mechanics of the body of a child and how insulin works - thinking of the steep drop and then trailing out into the low 7's high 6's.

   I get back to the office and a few minutes later the phone rings... 6.7.  Booyah!  Great number and the nurse will be there in 45 minutes.

  11:50 - Phone rings.  Nurse: "Hi, he's 2.8 (50)."  #*@&! "We gave him a pack of fruit gushers, what would you like us to do?"  Huh? Do?  Read the orders!  Me: "Ok, give him his lunch and bolus after based on the BG of 2.8 and his 34g of carbs."  Admittedly, this is the first low she's had to deal with on the pump.  So he spent the rest of the day in the mid to high teens.  He came down into the 11's (~200) as we sat for dinner.

   I started into my eggs hoping that the glucoaster ride was over for now and pondering the funny BG curve between 9 and noon.  Then it hit me like a ton of helium tanks on the head....  That little streak of great numbers at 10-11... Snack carbs!!!!  The animal crackers made a brief appearance to save the day, but they just weren't enough for a bolus that probably should never have been.... Sheer, dumb luck!

   My little trip to school today was educational:

1) Odd-ball high?  Retest (I got an F)

2) Steep crash, give extra carbs? Yes (trick question, the temporary "good" numbers brought me to a D+)

3) You only need to check for air bubbles when you set up the line?  False (I must have slept in that day, C)

4) And the bonus question: When in doubt, carb? Yes (over thought that one way to hard, B-)

Result: Do not pass go, do not collect $200, if you ever want to make it to Boardwalk, remember what

you learned on Mediterranean Avenue.

Joined another club

   Without using a stainless steel cannula it was presumed inevitable.  No time was wasted in getting to it.

   We've been chasing highs for the last 36 hours (high teens - low 20s, 320-414).  Yesterday Jonathan seemed to have a slight fever (warmer than usual forehead) at lunch but was otherwise himself and wanted to stay at school, but when he got home his temperature was normal, as well as this morning.  The working theory yesterday was a bug.  Bobbie is still fighting something off and I just got rid of a sore throat and cough myself.

   This morning I got a call from Latchkey - BG: 28 (504).  He was completely non-symptomatic and very much himself.  I had them bolus and still give him his snack and headed over to get him.

   His next set change was supposed to be tomorrow evening.  Since there was no fever today and his numbers were still high we decided it could be a site issue.... Sure enough...

   A new set is in and he's going to test hourly for the rest of the day.  The remarkable thing is he was almost completely asymptomatic.  I now have another mindset change from MDI and another lesson learned.

Upgrade!

   Oh!  And speaking of cool......


    The watch kinda took a backseat today, at least in the "new" and "cool" arena.  I know I kinda left that little cliffhanger at the end of the previous post...  I did that on purpose, because I knew something.  I pretty much knew it when we started Jonathan on the pump but it wasn't a sure thing until the middle of last week, and even then we didn't have it in out hot little hands.


   Well, now it's here.  Fresh through the Health Canada approval process and a brief stint with the Assisted Devices Program, Jonathan is one of the first people to get Medtronic's Veo.  Built upon the same platform as the Paradigm, it does all that his current pump can... and more.

   Where to start...  There are many subtle differences, like bolus in 0.025u increments up to 1, then 0.05 after that instead of 0.1 and basil in 0.025u/hr instead of 0.05.  Reworked set change menu for less button pushing.  On-board event capture to record BG, insulin, meal, exercise and other as opposed to getting into CareLink to enter it into the log book.  IOB is now on the status screen.  And there's probably a few other little goodies in there I have yet to come across.

   One of the things that helped us pick Jonathan's Weapon of Choice was the built in CGM system.  Despite the sensors being financially prohibitive for us to use them all the time, we can and likely will used them from time to time for any number of reasons...  Here's the biggie and the top new thing for Veo - Low Glucose Suspend (LGS).  It does what it says... When BGs meet specified criteria, insulin delivery will be automatically suspended for a period of time.

   We knew Medtronic's Pathway Program was there to move him up as new technology becomes available, and because we are within our 90-day trial period, we get a full ride to new.  Even if something bigger and better comes along in the next 5 years we can still choose to upgrade with a cost dependent on where we are in the cycle.

   There are two main things I want for Jonathan when it comes to Diabetes: 1) First and foremost, a cure.  2) Until a cure, the best possible management of his diabetes.  LGS is a step, and one side of a coin in an artificial pancreas.  The dicier side is the high glucose correction / automatic bolus.  Those two things, coupled with a dual hormone delivery system (glucagon) are the basis of a self contained support system and along with the integrated cannula / sensor would be no more intrusive than the current infusion set.

   My patience is really a hypocrisy.  As much as I want to get better and better management tools, I really want a cure.  I want a cure for Jonathan, I want a cure for all the kids that have recently been diagnosed, I want a cure for everyone with some years under their belt.  I want a cure for all the people that have been waiting decades.  I want a cure for the ones that are going to be diagnosed.  I want the CDEs, and the pharma reps, and everyone making a living off of diabetes to find their living somewhere else... and I want it NOW!!  But in the mean time, I want a safe and happy and healthy Jonathan who can grow and learn and reach his potential, and then go beyond it.

   To that end, next week, after the nurses at the clinic are trained on the Veo, Jonathan will have the latest and greatest available to him.  :)