Home

So yeah. We're home. Been home for 10 days now already. Sorry for the lack of blog posts, but after blogging so much while we were in Montreal, I just needed a break.

There is nothing like 7 weeks in a hospital 10 hours away to make home feel like heaven. Really. I think I'm still on a bit of a high. Every night I LOVE crawling into my own bed. And every morning, I LOVE getting into my own shower. I even enjoy getting groceries and washing dishes. Truly. I do.

Daniel is beyond thrilled that we are home. He's glad Ben is here, but primarily, he's happy to have his mommy home with him. I've been working some since I've been home. I work from home so that just means working in the office upstairs while Daniel and Ben are downstairs with the babysitter. Every so often, Daniel just pops in to make sure I'm still there...and that I'm not going anywhere. And almost every day, he tells me how much he loves me being home with him.

Ben is of course, happy to be home. But you know how kids are...they just live in the moment so I don't think he's feeling the high that I'm feeling.

Myself, I love seeing the changes in Ben now that we're here. He uses his walker WAY more than he did prior to the surgery. He hardly crawls anymore. And he doesn't seem to want to w-sit. He prefers to either sit in a chair or, if on the floor, sit in criss-cross.

He is more than happy to continue wearing his braces almost 24 hours every day. I thought that maybe once we got home, he'd complain about them. But nope. He doesn't at all.

In some ways though, reality has set in. At the hospital, I almost forgot about Ben's disability. I know...that doesn't make any sense. But rehab hospitals are made for kids with disabilities. There are other kids in wheelchairs and walkers and everything is made to deal with kids with disabilities.

The weather turned very springy over the weekend. So off we went to enjoy it outside. I was so excited to try Ben on his bike. Last year, I had got him a Mobo Mini...it's a recumbent bike for kids. It was a bit too big for him last year so I thought that it work for him FOR SURE this year. Well. Nope. Not so much. I'm not even sure why it doesn't work for him, but it doesn't.

So then, the reality of having a 4-year-old that can't walk started setting in again. Yes, he can walk with his walker. But he still needs to get stronger and walking outdoors on uneven ground is very difficult still. And his bike wouldn't work for him. I ended up in tears again.

I look forward to the nice weather getting here every year. And every year, I end up in tears because playing outdoors is so hard for my child. Daniel is riding his big boy bike like crazy and Ben is sitting in the wagon watching. It kills me.

Anyways...sorry this post turned into a bit of a downer. But it's how I've been feeling since I've been home...on a bit of a high and so happy to be home...mixed with some sadness and frustration that spring seems to always bring for me.

Since the bike incident, I have ordered a big trike for him (a Kettler) that I think will work really well. Let's hope so...

So yes. I am so very happy to be home again. As Ben tells everyone, "we were in Montreal for 50 nights!" I am so happy that Ben had his SDR and that it's now over and done with. I am enjoying the progress that we've already seen and look forward to even more!

Hopefully, more regular posts to come from now on...

- Posted using BlogPress from my iPad

Shriner's - Day 29 - Endings (cross-post)

Tonight I am tired.  Emotionally drained.  Excited.  Ready to go home. 

Our 50-day SDR-journey is coming to an end.  It feels a bit surreal.  Tomorrow night I will be home.  Home in my house.  I so miss my house.  Home with my husband.  And with Daniel.  I so miss seeing them everyday.

We said a lot of good-byes today.  Today was our last day with Stephanie.  She has the day off tomorrow.  We handed out Thank You gifts (little photo books that I put together to show Ben's journey here at Shriner's).  We got instructions on stretches and exercises to do at home.  And just a couple of rules (like carseats on airplanes until 6 months post-op and no activities with a lot of bumping, like horse-back riding).  Ben got gifts.  Lots of gifts.  Some that are really big and luckily found room in a suitcase. 

And now I just feel like I'm in a bit of a holding pattern until we leave tomorrow morning at 10:30. 

Ben will see Betty in the morning for another good-bye (and hopefully not too large of a gift).  And he'll have one last PT session.  Like I said, Stephanie won't be there so it'll be with Nancy.  It'll likely be an easy session of stretching and a bit of exercise on the mat.  I've already packed up his canes.

I took down all Ben's cards and notes off our walls today.  There was A LOT!  And packed them all away.  I'll keep these for little trips down memory lane as the years pass and the memories of our time here fade away.  They will fade...it's hard to believe that now. 

I often compare this journey to our NICU journey four and a half years ago.  That journey was just one week longer than this one.  Ben and Daniel spent 58 days in the NICU.  My memories of that time have faded somewhat.  I forget peoples' names and I feel bad about that.  But that's what happens.  And now, I look back at that time fondly (it's hard to believe) and kind of miss those days of just focussing on my babies.

That's what will happen here too.  Someday I'll look back and miss these days.  Miss this quality time with Ben.  Miss the excitement of all the changes in his body.  Miss these amazing people. 

And likely miss not having to cook meals or buy groceries or juggle real life with Ben's therapy.

So ends another chapter in our life.  In Ben's progress.  But as this part ends, we welcome in a new chapter.  A chapter I call "Life after SDR".  I can't wait to see what it looks like!

(But don't worry...I'll be back posting often to show Ben's progress at home.  I KNOW that we are going to have independent steps soon!)

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 27 - Sitting!

3 more sleeps!  Can you tell I'm excited to go home?  It seems to be all Ben and I think about right now...how long til we get to go home.  Plus, today is my birthday.  Pretty pathetic that I didn't even remember it was today until I saw all the "Happy Birthday" wall posts on my Facebook page.  Ah well...we can celebrate it on the weekend once we're home.

The coolest thing about today was that Ben FINALLY got to sit on the floor.  FINALLY.  Tomorrow is the 6-week mark since surgery, which means that he is now allowed to sit on the floor.  Up until this point, he has only been able to sit on a chair with his legs in front of him and his knees bent at 90 degrees.  Because of the type of SDR he had, it is necessary to wait this long so as to minimize the strain on his spine.

I thought the 6-week wait was going to be a big deal.  And if we had been home, it would have been HORRIBLE.  But we weren't.  We were here, where he spent a lot of time in his wheelchair or sitting in his tripp trapp chair.  Or he was busy in OT, PT or the playroom.  He didn't spend any time playing on the floor where his natural reaction would be to go into a w-sit. 

On the weekends when we were out of the hospital at the hotel, there were a few times that we had to remind him "no sitting", but it was fine.  Not a big deal at all.  Thank goodness.

Anyways...back on to the sitting.  So, if you know Ben (or another child with spastic CP), you know that "normal" floor sitting is hard for them.  Before surgery, Ben's preferred method of sitting on the floor was the dreaded "w-sit".  Here's a picture of both my kids w-sitting.  This is not a good way to sit on the floor.  Not good at all. 

Before surgery, it was very difficult for Ben to sit in "criss-cross-applesauce" (as we call it) due to tight calves and hamstrings.  In the few weeks after getting botox injections, he would be able to do it, but otherwise it was very difficult for him to maintain that position for very long.

Well.  Not so much anymore.  He just looked so comfortable sitting this way now.  He does have some trouble to get into the position himself, but that should come soon.  For now, I'm beyond thrilled to see my boy sitting like this:

He even played the beanbag toss game in this position and did great.  I was nervous that he'd fall over backwards, but nope, he was totally cool.

Here's a video:



Other than that, today was a fairly typical day at Shriners.  Tomorrow is a big day.  They will film Ben's AFTER video (well...his 6-week AFTER video...many more will be filmed when he returns for follow-ups).  I can't wait to see him do all the walking, movements and transfers that he did when we were here in October and see what they look like now.  At the end, we'll be given a CD with the BEFORE and AFTER.  Very cool.

To finish off this post, here is a video of Ben walking this morning in his walker.  I still love watching him take steps...it just amazes me how different they are now.

Shriner's - Day 26 - a visitor and some great standing progress (cross-post)

Ben had a visitor this morning!  Fletcher, a classmate from preschool, was in Montreal for March Break.  Apparently, as soon as his parents told him that they were going to Montreal for vacation, he was like "That's where Ben is!".  So, they were really nice to take time out from their family vacation to come and visit us.

When they arrived, Ben was in the playroom, but he quickly got back into his walker to show them all around the hospital.  I couldn't believe how long and how quick he walked (with great steps).  He showed them the family area, then we went downstairs to the clinic to show them the fish and the frogs and then all the way back upstairs to show them our room. 

Here is Ben and Fletcher making funny faces for the camera!

And now hugging it out!  How cute are they!

The rest of the day was pretty exciting too.  At his PT session in the morning, he walked quite a bit just holding on to one of Stephanie's hands:

And....

He stood independently for 25 seconds!!  And maybe even took an independent step or two.  Check the video out!




I would say that he has now "officially" passed his pre-surgery abilities.  So now any progress we make is just so much fun becuase it's all new stuff!

The countown is on!  Just 4 more sleeps!

Shriner's - Day 25 and Weekend 5 (cross-post)

Sunday night again.  Our last Sunday night.  I'm excited but a little down tonight.  Just tired of being in this hospital I guess.  And it was rough bringing Ben back tonight.  I thought it would be OK...maybe better than last week.  Nope.  No such luck.  Much worse.  Much, much worse.  Much kicking and screaming.  I'm sure the hotel employees thought we were torturing him.  Ah well.  That's over.  He's now happily in bed watching Kipper. 

But...before I tell you about our last weekend in Montreal, I should tell you quickly about Friday. 

Friday was a good day.  Mostly because it was so short.  Ben had no OT on Friday, and Stephanie moved some appointments around so his sessions were at 9am and noon.  We were done by 1pm and gone by 1:30. 

I can't remember exactly what we did in Friday's sessions, but I do know that Ben went on the treadmill for the first time since his surgery.  It was awesome.  I love his steps.  And I'm really happy that we're going to be getting him a pediatric treadmill to use at home...we just have to wait til May (thanks Amy!).

Here's a video:




So...like I said, we were out of here by 1:30.  My brother Jeff and his family had arrived at the hotel around 12:30...about the same time as Clarence and Daniel.  So Clarence left Daniel with Sheryl (my sister-in-law) and he and Jeff came over fto get us (so much easier than a cab!). 

Off we went to the hotel to await my sister's arrival around 2:30.  And then we were off to the pool!

After supper at the hotel restaurant, the boys were ready for their jammies!  Here they are playing with their cousin Lucy's DS:

After the boys went to bed, it was time for the rest of us to play some cards and just basically hang out.  Here I am with my sister, Virginie (AKA Ginnie) and my brother, Jeff.

Saturday brought more pooltime in the morning.  In the afternoon, we all headed off to the biodome.  I was grateful that my brother was there with his SUV.  It meant that Ben could travel in his car (in his carseat) and the rest of us could just take the metro (which is really not wheelchair accessible).  Here is my sister and I:

My brother's family (all decked out in their Canadiens gear in preparation for the upcoming game that night):

A great family shot of us:

Saturday night was pretty low-key for most of us.  My brother and my niece Lucy got tickets for the hockey game (Canadiens vs. Leafs) but the rest of us just chilled in the hotel room.

On Sunday, we all enjoyed the breakfast buffet at the hotel.  Once that had settled for awhile, it was time for the pool again.  But probably the most exciting part of the weekend for Ben came next...we went to the Montreal Science Centre which has a temporary exhibition of dinosaurs!  Check out this huge T-Rex!

Another family shot...with a T-Rex bearing down on us!

After the science centre, it was time for Ben and I to head back to the hospital.  My sister is currently on a plane back to Calgary and the rest of the family will leave early tomorrow morning.

So our last weekend in Montreal draws to a close.  And Week 6 starts in the morning.  Let's get on with it. I'm ready to go home.

Shriner's - Days 23 and 24 (cross-post)

Now that we are really getting towards the end of our stay here at Shriner's, there just isn't as much to tell everyone at the end of the day. Ben continues to work hard and make progress but mostly our days are all the same.

We don't use Ben's wheelchair at all anymore (at least not at the hospital...we will definitely need it once outside the hospital).  He gets everywhere either in his walker or on his bike.  I try to get the walking done in the morning before he wears out and then move on to the bike in the afternoon.

Last week when he started moving around the hallways in his walker, he would need a break every 100 steps or so.  This meant 3 breaks from our room to the playroom.  (To give you some context, the distance from our room to the playroom is about the distance of a school gym.)  This week, Ben routinely makes it that distance with no breaks.  Today for instance, he went from our room to OT (about the same distance as to the playroom).  Then from OT to the playroom (about 1/2 that distance).   And then from the playroom to physio (about 1/2 the distance of a school gym).  And then after lunch, he walked from our room to the playroom again.  That's the most we've done to date.

He is pretty exhausted tonight though and has been laying in his bed since we got back to the room at 4:30.  I even made an exception and fed him his supper in bed tonight.

Here are a few pictures and videos from the last couple of days:

Waiting for Stephanie to arrive for physio...playing games on mommy's iPod:

Walking with Stephanie...on his way to the magic mailbox:

More playing on Mommy's iPod while on his bike waiting to go to the pool:

For his walking practice today, Stephanie was pretty clever.  We were all secret spies.  Ben wore a camouflage sweater, I wore my camouflage hat and Stephanie wore her sunglasses.  This way no one would be able to see us as we snuck around to Dennis' office to see if he was sleeping on the job.  Dennis is the videographer here and does all the before and after videos of the kids.  He did one when Ben was evaluated in October and he'll do another one of Ben next week (as well as every time we come back for follow-ups...at 6 months, 1 year, 2 years, 5 years, 10 years and 15 years post-op).

So off we went to find Dennis.  At first, he was walking behind a big giant wheel:

And then he had to walk backwards for part of the way:

When we finally arrived at Dennis' office, yep, we caught him...with the lights off, feet up and snoring (he's great to play along!).  So Ben sprayed his with a squirt gun.  Too fun!

The highlight of Ben's day today...a dog named Mia came for a visit.  She was actually the dog of another patient (and shouldn't even have been in the building) but Ben was IN LOVE.  She was adorable and luckily enough, Ben didn't even have an allergic reaction to her.  Ben cried great big sad tears when she had to leave.

This is where he has been since 4:30 this afternoon (although he did sit up for about 15 minutes to eat supper, which I fed to him). 

We booked our flights home today!  We fly home at 1pm next Friday afternoon...so we'll be home by about 4 o'clock.  I can't wait to be home.  50 days away is just way too long to be away.  I can finally see the light at the end of the tunnel.

And the weekend arrives again tomorrow.  Our last weekend here...and it should be the most fun with Daddy and Daniel, my brother Jeff and his family, and Aunt Ginnie all arriving tomorrow afternoon.  Ben's schedule has been pushed up tomorrow so we should be out of here by about 1:30.

Have a great weekend everyone!  I'll post again on Sunday night with lots of great pics of our weekend.