The Marek Times

Phew!  What a busy week – especially for Ben.  Wednesday he had bike parade day at school.  They all brought their bikes, decorated them and then rode them around the school yard.  It looked like it was a lot of fun.

Then on Thursday, I took Ben to the Hospital to meet the Dr. B, the Genetics doctor.  It was easy for the doctor to tell that Ben’s organs are all in the right place (I guess it’s a lot easier to tell on Ben then on those of us with a little extra weight…).   I chatted with the doctor about what he’s studying and the likelihood that Marek’s diagnosis had a genetic component.  As of right now, they aren’t able to identify anything genetic.   It’s nice to have confirmation that Ben’s all good though.  Peace of mind, I guess.

Then on Friday, Ben’s class went to Safety City.  That’s where they learn all about pedestrian and traffic safety.  They get to drive little quads around a mini city and take turns being pedestrians.  It looked really neat.  Unfortunately, it rained and was really cold.  Didn’t stop them though.  Safety City is actually just down the street from my work, so I got to take a few minutes and go check it out while they were there.  I’ll post some pictures later if I can.

Then on Saturday, we drove down to Calgary and then Canmore for a quick, mini holiday.   It was quick, but Canmore is always sooooo nice.   I love it there.   The weather was absolutely crazy – all four seasons in one day, just like the old joke says.   But we found the coolest thing for Ben while we were there.  He’s now the proud owner of scottish attire.  Here’s my little scottish warrior:

What a weekend!  Very productive.  We managed to do a bunch more work in the yard and got the front mostly landscaped.  It looks so much better.  I’m very happy with it.  And I got the house all cleaned up too.  It had been somewhat neglected while we worked on the deck, but we’re back in shape now.  And the weather finally cooperated and was actually really nice all weekend.  We managed to have both families over for BBQ, so we ate a ton of yummy food in great company.   All in all, a great weekend.  Too bad it’s over already…

Friday, Merv and I went to see Dr. R (Marek’s cardiologist).  It was a really nice visit.  She gave us some paperwork that she got back on Marek, but mostly we just visited.  I brought her some pictures of Marek that we had taken in that short period where he was completely tube free and she showed us some of the pictures she’d taken on vacation last year.  She’s an awesome photographer.  Like the ones you see in National Geographic.  She’s really talented.

Well, back to work tomorrow.  The weather is supposed to be good, so hopefully it’ll be BBQ all week.  Yay!  I love having a deck!

Aaaaahh…  it’s so nice to be able to sit on our new deck and enjoy the weather.  There’s nothing like a cold drink on a lovely day…  I can’t believe there’s actual snow on the deck!!!!!!!

Wooohooo!  Project finished.  Mission complete!  After 3 weekends and numerous attempts by the weather and the hardware store (Home Depot – arg!) to thwart us, we managed to finish our deck.   And just in time too.  It’s supposed to snow tonight.  What’s up with that?  It’s the long weekend in May.  I thought snow wasn’t allowed.   Doesn’t Mother Nature know we’d like to enjoy our deck now that we’ve built it?   I’m tempted to sit out there anyway.  In my parka if I have to.  Anyway, here’s the deck:

As for other news, this Friday Merv and I will go see Dr. R., Marek’s cardiologist.  She’s got some reports on him and although there’s nothing new to tell us, she thought it was a good excuse to visit, and we agreed.  It’ll be nice to see her again.   And at the beginning of June, Ben goes in to see the genetics folks.  Again, I don’t expect any big revelations, but better to be safe.

Ok, seriously, when is summer going to start?

The Children’s Heart Society published their Spring 2009 newsletter and Marek’s picture is in there, on page 3.   You can see it here (just click on the March 2009 link):

http://www.childrensheart.org/newsletter.htm

As promised, a couple of pictures of Ben at Easter:

And this is what we did today.   It was a perfect day for a bike ride.   This is Ben’s new bike and his first ride.   He’s getting the hang of it.   We rode all the way to the Mac’s for a Slurpee.   I’m so glad that Spring is finally here!

Easter was wonderful.   I’ll try to post some pictures.   The weather was great – so great, that I even managed to get a bit of a sunburn on Sunday.   I don’t know how that happened.

We did hear back from Genetics last week, and my organs are all where they’re supposed to be.    It’s not a big surprise, but it’s reassuring.   They do want to see Ben now though, so he has an appointment for June.

We were going through pictures over the weekend and found a family picture of us.  These are incredibly rare.  We have lots of pictures of the boys but really only a couple of all four of us.   Marek was only a couple of months old in this one, but he doesn’t have any tubes or anything.   Aren’t we cute?

I’m having a totally crazy week at work.   Good thing it’s a short week.   I can’t wait for the weekend.   I get the full four days off and I’m sooooo looking forward to it.   Plus the weather is finally getting better.   Maybe the snow will disappear soon!

 Ben is feeling much, much better now.  The antibiotics did the trick.   He was back at school yesterday, good as new.

 Still no word from Genetics – which means that there wasn’t anything out of the ordinary on our x-rays.   But I did phone them again yesterday to confirm that.   They haven’t called back yet.    I also want to know if they want to have a look at Ben too.   It would be nice to talk to Dr. B.   I don’t know if he has any answers, but I have a lot of questions that are taking up precious space in my brain and I’d like to get them out.

Ok some days are just crazy. Today is one of them. Ben has been sick for over a week now.  We phoned the pediatrician to make an appointment only to find out that Dr. W passed away just recently.  We were very sad to hear that.   He’s been a friend of the family for a long time.  He was actually Merv’s pediatrician.  He will definitely be missed.

So, once I got over that shock, I phoned my doctor to see if they could see Ben.  No such luck.  They said take him to Emergency.  No way!  I’m not going there.  So I decided to take Ben to the medicentre near my folks place.  I took off from work (I didn’t want to wait until tonight, because it would be too busy) and picked up Ben and my mom and drove to the medicentre.  They were closed due to a water main break.  What the heck?????  So, off to the next one.  Meanwhile, Ben’s totally pale and the Tylenol is wearing off and you can tell his temperature is climbing again.  Did I mention it was over 103 this morning?

Ok, so we get to the second medicentre and you should have seen the crowd.  The nurse says take a seat, which frankly was a joke, since there was standing room only.  Obviously, they were handling the crowd from the closed clinic as well as their own.  But somehow we managed to make it out of there in a little over an hour.  All in all, not that bad.  It turns out that Ben has an infection in his sinuses and fluid building in his ears.  Poor little guy.  No wonder he’s miserable.  He’s on antibiotics now and we’re to continue with the Tylenol for his fever.  I hope he starts feeling better soon.

On another note, we’re still waiting to hear from Genetics.  I called last week and Dr. B was away on holidays.   Maybe he’ll get a chance to call this week.   Maybe not today though.  I’ve had enough for one day.

No news is good news, right?    Still haven’t heard anything back from genetics.   I’m sure they won’t find anything but I hope they call soon anyway.   I have a very good imagination and I’m trying very hard not to be a total hypochondriac.   I have enough neuroses without that one.