Holiday Eve

We leave bright and early tomorrow morning for our annual family vacation to Florida.  To say that I am excited is quite an understatement.  After a very long winter of surgery, rehab and then of course tax season (my husband is a tax accountant and the deadline in Canada is April 30th), our family is ready for some quality time together. 

Whenever I mention that we're going to Florida, everyone naturally assumes we are going to Disney World....but no, we're not going to Disney.  We plan to relax!  And that just doesn't happen at Disney World...it does however happen when you just spend a bunch a time at the pool and the beach. 

Here are Ben and Daniel 2 years ago:

And then here's the whole family last year:

This year will be a different trip than the last two.  Previously, we stayed for 8 nights at a very nice hotel/resort on Fort Myers Beach.  We loved it there!  It was the perfect place for young kids.

But this year, we are spending the first 4 nights in a hotel on Clearwater Beach (just the 4 of us) before meeting up with the rest of my family (my parents, my brother, his wife, and their 2 kids, and my sister and her boyfriend) at a huge house right on the beach just south of Clearwater.   We rented a house (well...really, it looks like a mansion to me) for a week...it seems extravagant but will actually be cheaper than what we usually spend because we are splitting the cost of the house four ways. 

I'm also excited to see how Ben gets around this year.  We've decided to leave his wheelchair behind and just take his walker and a stroller.  I really expect that we will only need the stroller in the airports...and I'm even hoping that he'll walk alot at the airports too.  The house has 4 stories but has an elevator so I expect that he'll do great at the house and be able to get himself all the way to the pool and beach on his own.    It is so exciting to see him walking so much these days...such a huge change from 6 months ago.

I will try to post an update or two while we are away...but I won't promise anything!  I do promise to at least update you once I'm back home.

Independence!

Our main goal, now that we're home from Montreal, has been all about independence.  Before the surgery, walking with the walker was difficult for Ben and he couldn't last for long...but now?  Well, now, he does great and can go for longer and longer periods.

At home now, we expect Ben to get everywhere on his own.  And not crawling, but walking.  Even though our house is multi-level, we mainly hang out on the main floor that is pretty much completely accessible for him with his walker.   Not only is he expected to walk everywhere, but we also want him to do all transfers too.  Sometimes we do have to help him, but he needs to put some effort in.  We don't just carry him anymore....well, except for to and from the car...until NOW.

This week, we finally had a ramp installed in our garage.  Before there were 4 steps down to get from the house to the garage.  They were very steep steps with no railing so we had to carry him to the van.  And then of course come back to carry his walker to the van. 

Not anymore!  The ramp is pretty much finished and Ben got to try it out tonight.  So from now on, he can be independent to and from the van and will just need a bit of help to climb up into his carseat.

Check out the video!

A long overdue update! (cross-post)

We have now been home for over a month!  It was a month on Monday that we arrived home....does time ever fly when you're not hanging out in a hospital!

People have been bugging me to post a blog update to let you all know how Ben is progressing now that he's at home.  So here we go!

Progress has definitely slowed since we've been home, but that was expected.  That doesn't mean that progress isn't being made though...it's just a bit harder to see.  Instead I try to focus on how different life is now than it was on January 24th (the day before surgery).

Ben now walks with his walker almost all the time...even at home.  Before the surgery, Ben mainly crawled at home, walked very little with is walker, and used his wheelchair in public places.  Now...well, Ben's wheelchair is basically gathering dust in our garage.  It will definitely still be needed (i.e. for walking back and forth to kindergarten in the fall) but is not needed near as much as before surgery.

Our focus at home is to have Ben be as independent as possible.  Sometimes it is just easier to carry him, but we are really trying hard not to do that.  We try to make him do all transfers (i.e. in and out of his tripp trapp chair at the table) and walk as much as possible.  We even make him walk up and down the stairs (with our help, of course).  We are going to have a ramp built in our garage (which will unfortunately take up one of the bays) but expect that once that's built, Ben will be able to take himself out to the van (and hopefully get into the van and even into his carseat) with no help.

Here's a great pic of a typical afternoon at our house...Daniel in (what's supposed to be Ben's) bike and Ben following with his walker.

Ben has physio 3 times each week now and OT once.  Luckily, I have Shauna (our babysitter) to help out with appointments and we only have to go to the hospital just once each week as we have Connie (private physio) come to the house twice.  OT and PT at the hospital are back-to-back on Tuesday mornings.

I've also signed Ben up for Music Therapy (thanks Danie for the information!)....but we just call it music lessons.  He's only gone once and loved it.  I'll post more details about it once I know more.

The main focus of Ben's PT sessions (and even OT) is strengthening.  I still have a goal for him of independent walking (of some kind) but we aren't forcing that issue yet.  He's just not strong enough.  There is no point in making him try and try and just fail at it.  I am hoping that by summer we will have at least a few independent steps though.

Basically, Ben just moves differently than before.  Everything he does is done differently now that he doesn't have the spasticity (i.e. tightness) to help or hinder him (yes...sometimes it did help!). 

That's about it for Ben's update....so here are some photos of what we've been up to in the month we've been home.

In mid-March, we had some VERY warm weather...like July-weather.  So here are some great shots of a water fight on our back deck.

(Flat feet!)

(Very happy Ben!)

(Funny Daniel...check the snowman in the background!)

(Happy Daniel!)

We had a great Easter weekend with lots of family time, an Easter Egg hunt, and lots of 4-wheeler rides with Grampie.



Ben playing Angry Birds with cousin Lucy.

Daniel with Uncle Jeff

My boys on Easter Morning.

Some quality brother time!

Grampie's 4-wheeler has a seat in the back that's big enough for both of them!

They just love their Grampie so much!

I even got to go out with the girls one night...this drink is what I needed on many nights at the hospital!



Shriner's - Day 28 - AFTER (cross-post)

Although Ben's SDR happened 6 weeks ago (I can't believe we are already 6 weeks post-op), it is only today that I consider us to be officially in the AFTER...as in AFTER SDR.  It was like up to now, he was just trying to regain the abilities that he had lost.  Yes, he was doing all those things BETTER than before, but wasn't really doing anything super-new.  Now, he's starting to do actually NEW things...things he couldn't do before.  Like stand on his own for 25 seconds.  And likely very soon, some independent steps.

And today was the day where his AFTER video was filmed.  When he was here for the SDR evaluation in October, they took a video of his abilities then.  And now, it was time to show what he can do now. 

So...here is his BEFORE video:



Check out those heels...he's like a ballerina!

Now...check out these AFTER videos:

First off, walking in his walker with his shoes and braces on:



Secondly, here he is walking with his canes with his shoes and braces on:



And I've saved the best for last.  Here he is walking with his canes in his bare feet.  This is the first time I've seen him walk barefoot since the surgery and I was thrilled that he kept his heels down so well.  I had been warned that many kids still walk on their toes just out of habit.



I can say with absolute certainty that this surgery was the absolute right choice for us.  There is no question in my mind.  And we are only 6 weeks post-op....Stephanie says that we should see the biggest gains between 6 and 18 months post-op.  I can't even imagine what he's going to be able to do come the summer of 2013. 

To put this in perspective.  If we had not chosen for Ben to have this operation, I fully expect that he would have gone to kindergarten in a wheelchair.  NOW?  Well, I now fully expect that he will use AT MOST a walker at school at all times.  He may even use canes or crutches.  But he WON'T be spending all day in a wheelchair.   This is a HUGE difference. 

So yeah.  SDR was right for us. 

Just 2 more sleeps....

Shriner's - Day 19 (cross-post)

Another day over. Sometimes it amazes me how fast the days go by. Overall, I find the days fly by til about 4:30...then after that, they DRAG. It seems a long time until it's time to go to bed. Ah well...at least the roommate is gone and we have the room back to ourselves. And so far, I've heard that next week is not so busy, so hopefully we'll be roommate-free next week.


It was another typical day at Shriner's for Ben. An hour of OT, 2 hours of PT (including 1 in the pool), some time in the stander and of course the bike. Plus, lots of time in the playroom.

We had more progress with Ben's walking endurance today. It's funny how counting steps seems to motivate him. But it does so we'll go with it. This morning he thought it would be fun to count how many steps it takes to walk (with his walker) from our room to the playroom. I really can't believe that he walked all that way, but he did it (with just 2 little breaks)...all the way there...all 350 steps!

We are slowly moving towards not using the wheelchair at all during the day as next week, the wheelchair will be off limits until after supper. So Ben needs to get all around the hospital either in his walker or on his bike.

At PT this morning, he got to play with the Wii Fit again...and I managed to get some photos. In this game, it's all about weight shifting and balance. He has to shift his weight back and forth to get the penguin to slide back and forth on the iceberg to catch the fish to eat.

You can see how straight he gets his legs now and how well he's shifting his weight...with just a bit of help from Stephanie.

And now, back to other side.

We are a bit sad tonight (at least I am). Nora Lee and her mom, Nathalie are leaving us tomorrow. They are 2 weeks ahead of us in this process so they are done at the end of day tomorrow. So this is their last night here. We have become quite close over the last 4 weeks and it won't be the same without them in the room next door.

And now we await Ben's first weekend outside of a hospital in 5 weeks. I can't believe we are already to this point! Daddy and Daniel are actually on a plane as I type and will arrive a bit later tonight. They'll stay at the hotel tonight and then come over in the morning at some point. I anticipate that after a little visit, Daniel and I will leave for the day and let Daddy see what Ben's day is like here at Shriner's. And then they'll join us at the hotel around supper time.

I think this weekend will be a bit low-key. It'll be nice to just hang out as a family again. We are staying at the Fairmont (Queen E) again so are connected via tunnels to most of Montreal's downtown. Plus, there is a really nice pool area at the hotel. So we'll eat, shop and swim the weekend away.
I'm not sure how great I'll be at updating the blog over the weekend, but I'll try to at least update it by Sunday night...I'm sure I"ll have lots of great photos from our weekend.
Happy weekend everyone! Just 2 weeks to go!