New beginnings

Yep.  It is the night before some big changes around here.  You have probably already guessed it...Ben and Daniel start public school tomorrow.  Everyone is excited and ready...lunches are packed, clothes are laid out, and backpacks are by the front door.

I'm hoping that this big change in our family life will also mean a few changes in my life.  I'm hoping to blog more (that wouldn't take much as I haven't posted since June!), cook more, work more and basically just do more of the things that I've been wanting to do since those 2 boys arrived almost 5 years ago.

I have lots of topics and things that I want to blog about.  I want to tell you about how Ben's school year will go (at least how I hope it will go), I want to tell you about all the progress he's making, and I want to show you all the cool things that he's been working on at home.  But I won't do that tonight.  Tonight, I will just tell you that we had an AWESOME summer. 

This was our first summer with our trailer and we were out in it almost every weekend all summer long.   This summer, we...


Played in the water...

 

 

 

Went swimming...

 

 

 

Climbed on cool rocks....

 

 

 

Started using forearm crutches...

 

 

 

 

Played with friends....

 

 

Had fun with our brother....

 

 

And went on LOTS of bike rides...

 

 

 Plus a million other things.

I can't wait to start blogging here more often.  I hope that you all haven't given up on me...and still want to read what I have to write.

See you tomorrow...I'll be uploading "first day of school" pics as soon as I get home from dropping them off!

5 Months Post-Op (cross-post)

On Monday, we will be five months post-op. WOW. Amazing. I keep thinking back to a year ago when we were just starting to explore the idea of Ben having a rhizotomy and here we are now, already 5 months post-op. The surgery now is just a memory...

Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:

1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.

2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.

3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.

4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.





5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.



6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.

Ben's New Wheels!

If you've been following this blog for long, then you know that it's been a struggle to find a bike that works for Ben.  He's disabled enough that he can't ride a regular bike with training wheels.  Yet, he's not disabled enough to need a full adapted bike that costs thousands of dollars.

Well.  After many trials and much research, we have finally found THE bike for Ben!  It's a Mini Tike from Trailmate.  We weren't sure if it would work and after having made online purchases that haven't worked out, we weren't willing to buy it without trying it.  Luckily, there was a dealer just 5 minutes away from where we were staying in Florida when we were on vacation a few weeks back so we could go try it out.

We only had to add a few things to the trike to make it work for Ben.  We added a back rest and foot straps (as you will see in the video) and we've also purchased a handle which we haven't put on yet.  We also have to get a hand brake put on it.  For full disclosure purposes, the bike with all the adjustments came to around $500 (I'm not exactly sure as my husband paid for it).

I only got to see Ben try it for a few minutes when we were in Florida and have had to wait 2 more weeks to see him on it again as my parents brought it back to Canada for us in their RV.  They got back home last night so we headed straight to their place this afternoon to pick it up.

Here's a video I got of Ben on it!



As you can see, he loves it!  He has just one complaint though...he wants it to be red like the picture on the website...my husband and I have decided that if he keeps complaining, we'll take the bike to be painted.  After all, most other kids get to choose the colour of their bike...so he should too!

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!

Ben's Rhizotomy Journey

On Wednesday, we will be 3 months post-op! To celebrate that fact, I made a photo montage of our time in Montreal. Warning: You may need a kleenex!

Make a video - it's fun, easy and free!
www.onetruemedia.com

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!