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.

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.

Happy Birthweek

   It started out simple enough... it was going to be a class party at McDonald's, the same party Alex had in her SK year.  As with almost all things D, planning is everything - so yes, I booked a September party back in April.  We were there one day for lunch on a weekend and I knew the parties fell at off peak hours.  Jonathan was still on MDI and at the time a pump was not high on the priority list (my how things changed) so I decided to get it booked very early to they could accommodate a noon meal for the party.  The manager was shocked that I was booking so far ahead, but was understanding and wrote us in.

   About three weeks ago my wife called to confirm a few things and was told that we didn't have a booking, and what's more, the restaurant was being closed for renovations after labour day.  WTF?!?!?  I was pissed.  Well screw you McDonald's, you just lost out on some business.  It would have been one thing to call and let us know that other arrangement had to be made, but to completely ignore it until she called them, that's just bad customer service... But anyway, that's beside the point... Jonathan was up for bigger and better things....

   Jonathan's birthday actually started a week ago (B-day was Sep. 14).  My mom came to watch the kids on the Monday (13th) so Bobbie and I could go to a JDRF Outreach parents night, so she brought him a present and the festivities began.  The morning of the big day, Jonathan walked out of his room and asked "can I have my zhu zhu pet now?"  (Rewind back to just after Easter - Jonathan: "Can I have a zhu zhu pet?" Mom and/or dad: "Maybe for your birthday." Which went on for about a month and a half until we told him to stop asking or the answer would be no.)  Back to B-day.  First words, not "Good morning.", not "Can I have oatmeal?", it was "Can I have my zhu zhu pet" that hasn't been discussed in months?

   They did a little birthday thing at Latchkey (it was his off day), after which we attended the meet-the-teacher BBQ.  We rushed home so he could open his presents and get him ready for bed (as luck would have it, it was also the evening of the school board meeting with policy for diabetics on the agenda).  I hate to say it, but the day of was with little fanfare, but he was more interested in what was to come.  Jonathan is the only kid I know that can turn a birthday into a birth-week.

   Wednesday, in class, he was King for a day.  He got to sit in the little throne (rocking chair) next to the teacher during story time.  He was pretty much the center of attention for the majority of the day - and still has a hard time understanding why it's not like that the other 364.  He got birthday presents from the teacher and a big card from the class.

   We took a little break from the festivities for a couple days, which worked out well because Wednesday evening he went back on the pump (a pretty cool B-day event, but would have rathered to never have gone off).  Thursday and Friday were more like the regular routine and good thing too because between the excitement of birthday, site infection, hospital, doctors visits, a week of bi-hourly checks all night and more nights like that coming, we were on fumes.

   Saturday was the biggie.  After the McDonald's fiasco, Bobbie decided to book a party at an indoor pool.  It's a relatively new facility with two ice pads and the wave pool / water slide (among other things like a gym and exercise classrooms).  The kids played in the water for about an hour before being shuffled out through the change rooms and on to a hot dog and chip linner (lunch/dinner, it was 3:00) and cake, followed by presents.

   What Jonathan didn't know though was that luck was smiling upon him.  Mommy won tickets to see the Windsor Spitfires (our back to back Memorial Cup hockey champions) take on the Erie Otters in their final pre-season home game.  Doubly lucky because she actually wasn't the first one drawn for the tickets.  Her co-worker actually won first, but had called in sick that day and when called told them to re-draw.  This was Jonathan's first hockey game and I wanted to make a big deal out of it, so Friday afternoon I called the arena and asked them to add him to the birthday roll call and then Saturday morning I went to the arena and bought him an official jersey.  I gave him the jersey at the end of the pool party and told him we were "going to a big hockey game".

   We got to the arena about an hour before the game.  Now I'll admit, OHL is definitely smaller scale than NHL, but it's just as exciting a game because what some of these guys may lack in professional experience they make up for it in drive and passion.  We watched the warm-ups and the Zamboni, after which Jonathan asked if it was all done.  The game started at 6:00.  We made it through the first period alright however, Jonathan is not big on loud noises.  On top of that, his BG was through the roof, either because I grossly underestimated linner, or because he was stressed to no end, or more likely both.  They announced after the first period that there was an opportunity after the game to meet the Spits and get souvenirs signed, so I was really hoping to make it through the whole thing and give Jonathan the ultimate - first game, first jersey, meet the team, and get the new jersey signed.

   Alas, it wasn't meant to be.  For he first half of the second period he was begging to go home.  He wanted to enjoy himself.  In between clapping for plays and goals and watching the action, he would bury his head in my chest when the music came on and tell me he was tired and wanted to go to bed.  His BG was in the mid-20s (450ish) despite the little doses of insulin I was pumping into him.  I was trying to be cautious because as much as stress puts him through the roof (not often, he's usually pretty laid back) real excitement makes him plummet like a trooper without the para.  I was actually starting to wonder of the site was going bad.  As much as I wanted him to not miss out, he wasn't having as much fun as he wanted to and I needed to get his sugars down.  Even without D though I doubt he would have made it through that whole night.

   I found out after the fact that my brother was at the game and saw his birthday announcement come up on the scoreboard ( :( I sooo wanted a picture of that!), and his jersey is unsigned, but his BG dropped to target within an hour of leaving and he went right to bed without protest when we got home.

  OK, so apparently I was more excited about the game than he was.  I'll admit it, I was a little bummed out that it didn't go as planned, but it was mostly because he didn't get the whole experience.  Maybe a day game next time.

   Back to the birthday... believe it or not, the game (pardon my rambling, but I thought it was somewhat relevant re: D) was not the end of it.  Yesterday after lunch we packed the crew in the van and headed out to Bobbie's parents house for yet another day of Jonathan.  Much mid-afternoon snacking and some cake and ice creme were enjoyed followed by... you guessed it, more presents for Jonathan.  I think this finally birthdayed him out because he hasn't made mention of it being his birthday all day.  he does insist on making sure we know he's 5 now, but I think the party is behind us for now.

   After almost a week of issues and follow-up there of, it was nice to have a week of unusual fun (despite a little site scare).  And now I have just a little under three months to come up with something really good for Alex :|

Goodbye, Farewell, and Amen

   Just under an hour ago, we said goodbye to one of our constant companions - Lantus.  Jonathan received what is planned to be his last ever injection of the stingy stuff (still have a couple vials in case of pump issues but that's not part of the intended plan).

   He's not sorry to see it go either.  He's hated the stuff since day one and I can't say I blame him.  I had to do a little research to figure out why, but I learned that it has the same pH as tomato juice... I hate tomato juice!  As much as I'm glad to see it go though, it unnerves me a bit.  This little bugger was one of the reasons I liked MDI.  It was all about insulin on board.

   Jonathan typically got his Lantus at 6:00pm, but since his pump start is in the morning we've been dialing it back the last 5 days to land him at 8:00am.  He had his last dose, that's his syringe there, and the leftover Lantus that will be going in the garbage.

   Barring a correction for a high tonight, Jonathan will be saying farewell to to his pen after just three more shots (lunch, dinner, and breakfast tomorrow just before we head off to the hospital).

   He is excited about the pump.  Not too crazy about set insertions, but he's only had two and I think that will get better with a little time.  Jonathan is really looking forward to this change and the end of MDI.  Amen!

Training Day

   Finally after months of stalling, a brief crisis of decision and weeks of waiting, it is finally September 2nd - training day.

   The closer we got, the more excited I've been.  Knowing that this day started the final countdown to the next chapter in Jonathan's journey.  In five short days, Jonathan will be a pumper; but for the time being it will be me as we have some hands on time with no risk.

   One of the things I was not looking forward to was inserting the infusion set....... into myself!  I'm a wuss, so I opted for the 6mm quick-sert infusion set despite the fact that Jonathan is sporting a 13mm silhouette.  I managed to load the quick-serter despite the fact that my hands were shaking and I was losing my capacity for rational thought.  Worse yet, aside from my wife and mother, there were three women standing around watching me.  The longer I looked at the the needle in the cannula, the longer the needle seemed to get.  I couldn't delay any longer as I would surely chicken out soon.  I put the insertion device to my well padded tummy and I pressed the two white buttons...

   I'll admit it, I've had mosquito bites that hurt more than that.

   Although there is a lot to it, the pump is remarkably easy to use.  I actually had it all programmed weeks ago and had a good idea of what to do with it, but it was definitely worthwhile to spend the three and a half hours going through it with the pros.  My mother also came along because she doesn't want to give up her nights with the grand-kids.  As well, the site manager for the Latchkey joined us as they are allowed to use Jonathan's pump (they aren't part of school board) and in the near future he will not have the nurse at Latchkey as they can do everything he needs now.

   I will be spending the next week with the school and Latchkey staffs to oversee and assist in the transition into his new class, new schedule, and, God help me, the supplied lunches on his off days.  We did learn yesterday who Jonathan's teacher is and thankfully she was with the school and aware of Jonathan's condition the past year.  I'll be sitting down with her tomorrow to revisit the information I presented at the beginning of the last school year as well as introduce her to Jr's new tech.  Within the next week or so, a proper diabetes educator will go in to have a more detailed session with teacher and staff.

   Tuesday, September 7th, at about 09:30, Jonathan will go live with his pump, loaded with insulin, and begin making MDI a distant memory.

A Major Milestone, One of Many to Come

Well, I can finally say it.  Now that the school year is officially done for the kids here I can finally let it out without jinxing it because the school year is over and WE MADE IT THROUGH WITH ZERO MAJOR INCIDENTS!!!!

I was sure Murphy would rear his ugly head in the last few days and blow it, but nope! :D

I'll admit, we did have a few high highs, like in the 20-22 (380-400) range at lunch, but very few.  On the other hand, we had no terrifying lows.  In fact 3.4 (61) was our lowest school low and that was just before lunch.

We had a hell of a time getting things set up, but after those first grueling weeks we hit our groove and rode it for ten months.  Now we did have our ups and downs, and he was maybe 50-60% of the time he was in range, but never the less his A1c was lower each visit.  I'd say most people probably couldn't understand how elated I am about this but I know everyone here can appreciate where I'm coming from.

The sad matter of fact though is that Jonathan is the exception, not the rule.  As much as we were persistent in pushing for at least adequate care to be put in place, we were also lucky.  Not many families are as lucky as we were and that needs to change!  There are people out there fighting for that change and families like ours that are backing them up, but we need all the help we can get (if you're in Ontario and want to help, send me a message and I'll fill you in on how you can make a difference).

Now on to summer camp.  This should be interesting.  There will be different activities every day and at least 1 field trip a week.  If anything, this will be wilder than school ever was so I'm sure there will be more to come on that.

In September, the board is switching to all-day / every-other-day kindergarten, so he will go Mondays, Wednesdays and every other Fridays.  The off days... still at the school, but in the daycare program.  And!... with any luck, hell be sporting his new pump (which by the way, I'm really leaning towards Animas).

But back to today.  Hooray for small victories!  Today is a fabulous day.  As much as we'd all rather not have anything to do with diabetes, one good thing that's come from this - the special days are that much more special!

Congratulations on a great JK year Jonathan, we're so very proud of you!