Friday, September 24, 2010

Watch me!

   I'll spare you another round of "how much we love the pump".  Believe it or not, we did find one shortcoming that we are not crazy about right from the beginning.  It's nothing huge, but it was concern enough that I decided to add to Jonathan's gear.

   When we bolus Jonathan and have the BG reminder on, we can set the pump to alert when a certain period of time has elapsed.  While this is a neat feature, it has two issues that we don't like: 1) Inside his neoprene case the "discrete" alarm is not loud enough to be heard reliably, especially in a busy setting, like a classroom or a playground.  2) The alarm automatically unlocks the keypad, and you can't change that.

   For the past few weeks, we've been relying on the teachers and Latchkey staff to remember when to test him, and they've done.....

    *** This just in... mystery solved.  We've been randomly missing data in Jonathan's downloads... they're been randomly using his the meter I put in his lunch bag as a back-up... his old Accu-Check... the one that doesn't talk to the pump." ***

                                .......  a great job (aside from using the WRONG METER).  And that little tidbit did come to light in the middle of my statement of praise.  On the bright side, they are testing, regularly, and recording.  And poo-poo on Medtronic for not allowing manual inputs of BG on the CareLink site - not thought through too well if I do say so myself.

   OK, back to our dilemma of inaudible audibles and auto-unlocks....  I thought to myself, Jonathan has taken such good care of his Medic-Alert bracelet over the past year, I think he could be responsible for a small wrist watch.  So one day while I was on "vacation" a couple weeks back for pump start I started looking around.  I stopped at the closest Wal-Mart and started looking at watches.  They had all kinds of cool little kids watches, most digital, some with an alarm (1 alarm).  I asked the lady at the jewelry counter if they had kids watches with more than one alarm.  She looked at me like I was asking for a $20 genuine Rolex.

   As with many good things, I decided to hop right to the internet.  I was amazed and the variety of "medical watches" available.  There were even ones geared specifically towards kids.  There were some amazingly beautiful ones that you might have expected to find in the collections of James Bond, Bruce Wayne, or Tony Stark.  And, as you may have guessed, the majority of them were grossly overpriced, at least for my taste...err.... budget - my tastes exceed my budget, but I'm cheap so it all works out.  It took a couple of hours, but I found a great deal on one of the watches I though could be the ticket.  I saw it as high as $75-80.  But I found it for $32.07US + $4 shipping to Canada.

   From what I can gather it was originally intended for children with "potty issues", but with 8 alarms per 24hr period...  guess what....  it's the new string-tied-on-a-finger.  This weekend we'll be "training" Jonathan to respond to the alarms with a BG test.  The alarms I've already programmed in are about 2 hours after his school-day breakfasts and lunches.

   Funny, I started this blog post with a peeve in my head about people doing "something" wrong and the BG not getting to the meter, and ended up with a new working theory.... A neato watch that Jonathan will hear and no meters that don't link to the pump should help ensure we get all our data!

   Anyway, the watch is a great concept (I think).  We just got it and he starts wearing it tomorrow so I can't attest to it's greatness yet, but I think the concept was definitely my cool idea of the month.

Oh!  And speaking of cool......

Monday, September 20, 2010

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 :|