Shriner's - Days 21 and 22 (cross-post)

So here we are...almost in the middle of Week 5. Ben and I are counting down the days to the weekend and til we go home. As Ben said today "10 Days!?!? That's not very long at all!"


This week brought more stair climbing work...this time with Corinne. And this time walking sideways up and down the stairs while holding on to the railing. This is likely how Ben will learn how to go up and down the stairs and is something that we can work on at home with him. I'm so glad now that we put in such a good railing on the basement stairs.

Here's a video of him on the stairs:





After the stairs, it was on to knee walking and pulling up to stand in his bare feet. Check those flat feet!!!! If you remember his "before" video, he was so high up on his toes, he looked like a ballerina. Quite a difference.

Stephanie was back with us today. And we worked on similar things. Again, here he is standing in his bare feet. I really can't get enough of looking at these flat feet. Sometimes looking at his feet before the surgery used to bring tears to my eyes as I just couldn't imagine how he'd ever be able to take independent steps with feet like that....and now? I see hope when I see these feet.

Here's a video of Ben trying to knee walk with no help. He still needs some but is getting close to doing it on his own. I love the end of the video when he pulls to stand. Really...I can't get enough of those flat feet.





In the afternoon, we did more "walking" work. We were going to do a pool session, but Dr. Farmer was at the hospital today doing a rhizotomy clinic (where he evaluates potential candidates) and we wanted to be able to show off for Dr. Farmer. Today's game was that Ben and Stephanie were secret spies. So they had to whisper and sneak around. Here they are writing down clues for me to come find them later when they went to hide.

And here's a video of Ben walking through the ladder. You can see how it makes him take big steps.




At the end of the day, we finally got to see Dr. Farmer. Ben walked with 2 canes for him and then walked some with Stephanie just holding on to his hips really lightly. We tried today to convince Ben to take afew independent steps, but he's just too timid and scared. But Dr. Farmer was so happy to see his progress and even he was willing to say that Ben will walk independently. Again, I have no idea what this really means...and they likely don't either...but like I said before, I expect at least independent walking in the house. Anything beyond that will be like icing on the cake. I have goosebumps just typing this...and can't wait to see what Ben will be doing in July when we come back for his 6-month follow-up.

I love this photo of Ben giving Dr. Farmer a High Five. Ben said thank you to Dr. Farmer for giving him new legs. Dr. Farmer's response was to thank Ben for working so hard. Totally cool.

Shriner's - Day 20 and Weekend 4 (cross-post)

I just knew when I posted on Thursday night that I wouldn't get around to posting again til Sunday. And yep...here we are...Sunday night. On the eve of the start of Week 5. Just 12 days til we go home!


Due to some flight booking issues, Clarence and Daniel actually flew up to Montreal late on Thursday evening. It was too late to come by the hospital when the got in, so they went straight to the hotel. It was great though as they were here at Shriner's by about 9:30 in the morning, just after Ben's OT session.

So off we all went to the playroom. I continue to be amazed at the child life workers there as well as the volunteers. The volunteers are simply amazing. There a number of volunteers that volunteer once or twice every single week and just come to the playroom to help entertain the kids. These volunteers make the stay at Shriner's so much better for both the kids and the parents. Really, I don't know what I'd do without them.

The volunteer on Friday mornings is Laura. She is great. Really great. And Friday's activity was to decorate pillow cases. You can see Ben is hard at work and Daniel is busy talking (as is usual for Daniel):

While we were in the playroom, our now close friends, Nora Lee and her mom, Nathalie, came by to say their good-byes. Nora Lee had her surgery 2 weeks before Ben so it was time for them to go home. I was really sad to see them go. It was so nice to have someone else there that was going through the exact same thing as us. Luckily, Nathalie thought to get a photo of us together!

After playroom time, it was PT time. So off we went as a family. Daniel and I only stayed for a few minutes, but before we left, I got this photo of Ben working hard with the ladder. In this exercise, Daddy is holding one hand while Stephanie steadies his hips. He has to take big, long steps to get through this one.

Shortly after the PT session started, Daniel and I headed off to the hotel. Ben still had a full day on Friday so Daddy stayed back with him. It was great for Clarence to get a chance to see what Ben does everyday. Also, he got this great video of Ben climbing the steps for the first time:



After Ben's full day of therapy, they joined us at the hotel. Due to the start of a snowstorm and some heavy traffic, they were a little late arriving, but still made it in time for all of us to have dinner together. And then of course, it was "Cut the Rope" time...here they are in their jammies (each playing on a separate iPad...yes, we're spoiled):

And then, for the first time in just over 5 weeks, they went off to bed together! It was late by the time they got to bed that night (like 9pm...which is 10pm for Daniel) but they still laughed and giggled and talked with each other for at least 20 minutes. It just warmed my heart to hear them...

The rest of the weekend was spent at the hotel. There was a snowstorm in Montreal and we did really not feel like venturing out in it. So we spent a lot of time in the pool. Ben LOVED it! And never stopped smiling!

Daniel was so happy to have Ben and Daddy there with us!

When we weren't at the pool or out finding something to eat, we just hung out in the room. Here they are watching Toy Story (I think).

The hotel even had bathrobes for kids! Check Daniel out!

After the pool, the boys would try and stay naked as long as possible. Funny, how they'll run around naked forever, but when they go to the bathroom, they have to have PRIVACY! Here they are playing "Cut the Rope" naked!

And, my favourite picture of the whole weekend. Me and my boys all cuddled up before bed. I have missed these moments so much.

To be honest, I was a bit worried about how the weekend would go. Ben and Daniel haven't spent much time together lately and I was worried about the transition back to being together (especially in a smallish hotel room). I shouldn't have worried. There was very little fighting and mostly a lot of giggling and loving on each other. It was so nice to finally have all 4 of us together for 48 hours straight.

Clarence and Daniel flew home early this afternoon so Ben and I headed back to Shriner's around lunchtime. Ben was very unhappy that he had to go back. There were a few tears. But once we were back, he was fine. We did some homework (biking, stander time, walking in his walker, cutting and colouring for OT, and stretches). And managed to put in the day.

I am now ready for Week 5 to get started. I feel like I can see the finish line so I'm picking up speed! 

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!

Shriner's - Day 18 (a totally awesome day!) - cross-post

Today was a MILLION times better than yesterday. And of course, the main reason for that is that I got a great night's sleep last night.


Today was a slower day as Ben didn't have OT this morning. We started out the day with a bike ride. And then headed off to the playroom in his stander. I still can't believe how well he tolerates the stander. Lots of kids hate it, but he's totally OK with it. It's much easier to get the stander time in than it is to get enough time on the bike.

Ben had his PT session a bit early this morning, at 10am instead of 11am. He was ready to have Stephanie back. To start the session, it was another verson of Ben's favourite game, the beanbag toss. This time, he had to crawl to get his beanbag and then knee walk back to the spot where he could throw the beanbag. And to throw the beanbag he had to be in high kneel (i.e. standing on his knees). Each time, we would up the time he had to spend more time in high kneel before throwing the beanbag.

Here he is knee walking:

Now, he's in the right spot to spend some time in high kneel. We started out at 4 seconds (since he's 4) and then moved up to about 10 seconds. We don't even have to motivate him to increase the time...he insists on upping the time by 1 second each time. It's so great that he is OBSESSED with counting right now!

Check him out here in high kneel! He probably held this one for close to 20 seconds! Definitely getting stronger every day!

A rare photo of me!

After some very hard work of crawling, knee walking and high kneeling, it was time for more walking with one cane (see video below). He is doing better and better at this.

And here's the video of him walking with one cane today:



And at the end of the walking? He got to play a balance game on the Wii Fit! I don't have any photos of that as I had to help out by holding his hand but I promise a photo / video of it soon. It was awesome! He had to stand and then shift his weight back and forth to make the penguin move on the iceberg to catch fish but not fall off. Of course, he LOVED it!

While in the playroom this afternoon, Dr. Farmer came by for a visit. And Ben did some walking with 2 canes all by himself for him. It's funny. You would think that showing off for the Dr. would motivate Ben, but it doesn't. You really need to make it a game for him. But he did fine and Dr. Farmer was very happy. Stephanie told me later that she told Dr. Farmer that she expects that he will do some sort of independent stepping. She meant later...like after we are home. Dr. Farmer said "before he goes home?" So...the challenge is on to get some independent steps BEFORE he goes home! Wouldn't that be amazing???

After playroom time, it was time for the pool again (Ben's favourite part of the day). I can't believe I did it, but I managed to convince him to walk to the pool in his walker. Up to now, we haven't done any walking outside of PT, he usually needs to conserve his energy (or he's just to tired). But now, it's time for him to do more walking outside of PT. Well. He did AMAZING. I don't know why I'm surprised...

I took the walker part way down the hall so he wouldn't walk the whole distance. I suggested to him that we count how many steps it would take to get to the elevator. Well. Counting totally motivated him and off he went. And coincidentally, it was EXACTLY 100 steps to the elevator.

I thought that would be it...but nope, after holding him in the elevator to give him a rest, he was ready to go once we got the 1st floor. And of course wanted to count how many steps it would be to the pool. He walked the whole 90 steps there...so 190 steps in total! Stephanie was thrilled!

It was a really, really good day.

He is tired tonight...and it's a bit rough as our roommate had a rough evening...crying and screaming lots. It really bothers Ben. But it's quiet now. Thank goodness. And they go home tomorrow...plus I heard that next week is supposed to be a bit slower. So hopefully, that means no roommate next week.

So yeah. A really good day. An awesome day. Here's to many more!

Shriner's - Day 17 (otherwise known as the "not-so-perfect" day) - cross-post

So I guess all days can't go perfectly. And neither can all nights. And I guess that was the pre-curser to the "not-so-perfect" day. Ben had a pretty good day. Me? Not so much.
Our roommate had a rough night last night. She had full leg casts removed yesterday and last night her muscles were spasming. So she was in pain. So between 11pm and 3am, she was awake and crying A LOT. Ben never even budged, but unfortunately, I didn't get much sleep.
Once morning arrived, I was counting down the minutes until I could drop Ben off in the playroom so I could take a nice shower and have some "me" time. But first, he had OT from 8:30 to 9:30. OT is not my favourite thing. Ben seems to be completely OK with it now, but I personally find it boring. And, to be honest, for some reason, I just don't care about it. I guess I figure that Ben is not going to go his whole life not knowing how to hold a pencil, draw a straight line, or make cookies with play-doh. I'm over-simplifying things, but that's pretty much how I feel.
And then add to that, some comments today about Ben's fine motor skills not being quite age appropriate and it really put me in a bad mood. I don't know why it bothers me so much. I know his GROSS motor skills are not age appropriate and it doesn't bother me at all (well...of course, I want him to walk, but I can talk honestly with his PT's about his strengths and weaknesses and not feel like it's an attack on me). But when we move on to his FINE motor skills, I guess I just feel like I've missed something.
And plus, I'm annoyed. Ben has been followed by OT for years and we go every few months to be told "he's doing fine, come back in 3 months". Eventually, we missed his OT appointment in September and I never bother rescheduling. I mean, why bother? It just seemed like such a waste of time.

Anyways...enough on that.

So...off we go at 9:30 to the playroom. Like I said, I'm all excited for some "me" time before we head to PT at 11. But oops...I forgot. The child life worker was out this morning so parents were required to stay. Crap. So much for a shower. And a 2nd cup of coffee.
So Ben and I played with some bug game and then read like-a-million dinosaur books. This boy is dinosaur obsessed! And he knows it all...and consequently, so do I. I know more than I ever thought I would about T-Rex's, triceratops, stegosaurus, ankylosaurus, and on and on and on. We've even been learning about the 3 dinosaur periods and I even know which dinosaurs lived in which period. It's crazy. Ben's volabulary is AMAZING. We had a big conversation today about why the dinosaurs are extinct. And yes, he even used the word extinct. There's actually a really cool dinosaur book that compares each dinosaur to real life things...which really helped Ben (and me) figure out how big they really are. For example, a T-Rex was as tall as a telephone pole and his teeth were as big as bananas. Cool, eh?
At 11, we were off to PT. Where I learned that Ben wouldn't have Stephanie today, but instead another PT, Gloria. Which was fine. But not as nice. And since I was already cranky, I wasn't thrilled. His session was totally fine and he worked REALLY hard. But it wasn't the same.
The afternoon went better. A child life worker was at the playroom this afternoon as was Philip, Ben's favourite volunteer. So I finally got my "me" time which I celebrated by falling asleep on Ben's bed for an hour, before rushing off for a quick shower. And then 3pm brought pool time.

Ben was TIRED tonight. Really tired. And even cranky. Which he probably caught from me. For some reaons, this boy is OBSESSED with having a bath every night here. At home, he has a bath twice a week. But here? All he wants to do is have a bath. The issue is there is only one bath tub...for about 15 kids. And the bath tub needs to be cleaned in between each kid. Needless to say, the bath tub is a pretty popular place every evening. Ben had a pretty big meltdown when I told him that he couldn't have a bath tonight. He had one last night and I just wasn't going to fight for my place in line tonight.

So now, he's in his jammies. Watching Kipper. I'm on my cot. Tired. Even with the nap from this afternoon. And a bit annoyed that our roommates seem to spend every minute each evening on the phone. WIth about a dozen different people (yes, I'm exaggerating.)

Regardless, of my "not-so-perfect" day, Ben actually had a pretty good one. Except for the bath tub meltdown. So I shouldn't complain. But I'm really hoping for a good night's sleep tonight.

Sorry, but there are no pictures tonight. I didn't manage to really get anything good today. Hopefully tomorrow will be a better picture day.

Goodnight all.

Shriner's - Day 16 (cross-post)

Well. Here we are in Week 4 of 6. Just 18 days until we're home. Yes, that's better than the 50 we started out at...but it still seems like a long ways away.
Today was a somewhat easier day as Ben only had the 2 PT sessions and no OT. But we managed to fill the day up. There was still playroom time, stander time and bike time.
The first PT session went great. I actually look at Ben sometimes in these sessions and wonder where my child went. Who is this child that happily does everything asked of him?
His PT session consisted of:
1. Kicking bubbles - this is where he lays on his back with a rolled up towel underneath his knees. He has to extend his leg like he's kicking a soccer ball, but instead kick a bubble to pop it. When he started this exercise 3 weeks ago, he had to work hard to do it with NO added weights to his legs. NOW? Well, he has a 4 pound weight wrapped around each leg. And he does it no problem at all. He did 20 kicks for each leg.
2. Crawling and knee walking - Then he moved on to the crawling and knee walking exercise. This time, Stephanie had some magnetic dinosaur parts. He would crawl over to get a body part and then knee walk (with some assistance from Stephanie) back to the magnetic wall. And continue this for about 10 times until he had put together 2 dinosaurs.
3. Thomas hunt - Today's hunt was basically a treasure hunt to find all the missing Thomas lego pieces. He walked with ONE CANE to do this for most of the way and then also did some sideways walking.

Here's a video of him walking with one cane:




I did manage to pick Stephanie's brain a bit today to figure out what SHE THINKS Ben will be able to do because of this surgery. And, she finally told me that she expects that he'll be able to walk independently in the home. Maybe not at school (due to all the kids, it would likely be unsafe for him), but very likely at home. Now this is exactly what I was hoping. What a huge deal this will be for him (and us)! Now. I have no idea when this may actually happen. And she did caution me that the progress does slow once we go home til about the 6-month-mark. But we should see some great progress by the 1-year-point. I just want to fast-forward to next year and see what he's going to be doing!

The afternoon brought more playroom time and then, of course, the pool and then stretching.
We are actually sharing a room with a little girl this week that arrived today. It sucks to no longer have the room to ourselves, but it looks like they'll be gone by Thursday. And then maybe we won't have anyone next week. It's not a big deal during the day to have a roommate (we're hardly in the room), but it's a struggle this time of day. When I really just want to be alone. Plus, now I have to sleep on the cot again (at least it's not that horrible fold-out chair) and not the comfy bed I had gotten used to.
I think that pretty much wraps up our day. I'll leave you with a few photos from the weekend.
The boys watching some video together...I think it was "Kipper":

A very rare occurrence...2 boys sharing 1 blankie!

Saying goodbye:

And a family photo:

Hope...and fear (cross-post)

At the halfway point of Ben's rehab here at Shriner's, more and more hope is starting to seep into my heart and soul. I see how Ben steps now and how he stands now and I can't help but feel real hope that these things are going to translate into independent standing and independent steps. I find myself laying in bed at night dreaming of what Ben's future might look like. There seems to be a fight between hope and fear. Hope about what may be...and fear of letting myself get my hopes too high. It is my continuing struggle.

And then I came across this video (again) of another Ben (thanks to Andi at Bringing the Sunshine). A Ben who runs. I dare you to watch it and not cry. I really don't think it's possible to not cry when his friends come back to run with him. And then, when he falls...well, the tears are in full force by then.