Tuesday, February 28, 2012

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.

Sunday, February 26, 2012

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! 

Thursday, February 23, 2012

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!

Wednesday, February 22, 2012

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!

Tuesday, February 21, 2012

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.

Monday, February 20, 2012

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:

Sunday, February 19, 2012

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.

Shriner's - Day 15 - more awesomeness (cross-post)

As promised, here I am with more details on what Ben was up to on Day 15 here at Shriner's.

In the morning, he had an hour of OT (Occupational Therapy). Well. That is going SO MUCH BETTER than it was last week. Last week, he started crying before we even got in the room and REFUSED to go in until coerced. Now? He goes in happily and works hard for an hour (previously, sessions would only last about a half hour).

Here he is working on cutting, and doing a great job!

Probably the biggest deal here is that he can now sit ALOT better than he could 3 weeks ago. In the beginning, his truck control was poor and it was hard for him to sit up straight for even 10 minutes. Now he can do it for the whole hour (with a little reminding). Betty is sitting behind him, but really just to make him feel more secure. She really isn't supporting him at all.
And here he is joking with Betty!

At the end of the session, it was Whiteboard time. After missing a few sessions while Mom was here, I was thrilled to see him holding his marker so well AND writing his name HIMSELF!

At 11am, it was time for PT with Stephanie. Now that he's getting stronger, it's time to work on independent standing! How exciting! Before the operation, he had been working on it and could sometimes last up to 5 seconds before having to hold on to something. But it was so HARD when he was so high up on his toes and his knees were bent. Now, with flat feet and straight knees, he can make some real progress towards standing on his own!
Here he is standing with Stephanie behind him. She's been continually modifying a beanbag toss game as he's been progressing. In the beginning, he just had to sit on the bench and throw. Then he had to pull to stand using his canes and sit back down, before we would give him a beanbag to throw. Then he had to pull to stand with his canes, stand for a few seconds with his canes, and sit back down before we'd give him a beanbag. And now? He has to pull to stand and then LET GO and stand independently for a few seconds before we'll give him a beanbag.
You can see Stephanie's hands behind him here, and yes, sometimes she is supporting him, but there are times where he has stood on his own for up to 10 seconds! (See the video below for more standing success.)

We've also been working on knee-walking. Before the surgery, Ben could take up to 10 steps on his knees before falling forward onto his hands. Now, Stephanie has to support him, but we expect that this will improve quickly.

And I had to post this picture just because it's so cute!

Here's a video of him working on his standing for Daddy and Daniel:

At the end of each morning session of PT, Ben does his walking practice. At first it was with his walker and then he progressed very quickly to his canes. And this time? He was holding onto a skipping rope. His steps look amazing! His feet are nice and flat and most of the time he takes nice, big steps. And sometimes? His heels even hit the ground first!

Ben's pool sessions have been going great. He LOVES the pool and does everything that Stephanie asks him to do. In the pool, he works on standing with his feet flat and his knees straight. He also works on high kneeling (standing on his knees), pulling up to stand, squats, and even walking! And this week he took his first independent steps in the pool!!

Friday, February 17, 2012

Shriner's - Day 15

What a day! I know I sound like a broken record, but BEN IS AMAZING! I can't believe how hard he works every-single-day!

I took some awesome videos and pics from earlier today but they are on my laptop and I can't load them on here as I am at the hotel with just my iPad. I promise that I will upload them tomorrow when I'm back at the hospital. They are just too amazing not to share.

Until then, I will update you on our 2nd family reunion. Daddy and Daniel arrived at the hospital around 1pm. It was great to have them get there so early as EVERYONE has been DYING to meet Daniel.

Here are my boys watching a movie on my iPad. Daniel is wearing a hat that Ben made for him and the car he's holding was painted by Ben.

And here is Daddy joining in:

Daniel took this great photo of me:

After lots of play in the playroom, the whole family headed to the physio gym for Ben's afternoon PT session. Usually we head straight for the pool, but this time Stephanie thought it would be fun for Daddy to see what Ben's been doing and for Daniel to play a game of Beanbag Toss with Ben

Then it was time for the pool! Stephanie was so nice to let Daniel join Ben in the therapy pool. Here they all are trying to splash mommy and daddy!

And here they are fighting over the "firehose"!

After lots of fun in the pool, it was time for Ben's stretches. So again, it was a family affair with Ben, Daniel and Daddy all watching Thomas - Spills and Crashes while Ben had his stretches.

After the physio session, Daniel and I packed up and headed to the hotel. After getting set up, we went down to the hotel restaurant for supper and then made a quick stop at the SAQ (wine store) for a bottle of wine for mommy.

Now we're hanging out in the room. I'm blogging and Daniel is watching a video before bedtime.

Three weeks of rehab done! Three weeks to go! (Look out for my update tomorrow...it will have some awesome stuff in it.)

Posted using BlogPress from my iPad

Thursday, February 16, 2012

Researching SDR (I need your help!)

Hi everyone.  As Ben (and our family) go through the journey that is SDR surgery and the recovery and rehab that follow, I've begun to realize that although the SDR journey is pretty similar for those of us that go through it, there are definitely differences.  Differences that stem from where the surgery is performed, what type of SDR is done, and whether the hospital does in-patient rehab or not.  And likely even more than that.

So.  I want to do a series of posts documenting the journeys of those of us that have been through SDR with our child.  I was thinking of doing an interview-style post with a series of questions that the parent could answer.

If this is something you are interested in, please either comment below or email me at aboutthesmallstuff at hotmail dot com. 

For those of you whose child has had SDR, can you let me know if you'd be interested in participating? 

And for the rest of you (especially those of you who are considering this surgery for your child), can you please let me know of any questions that you think I should ask?


Shriner's - Days 12 to 14 (cross-post)

I'm back! Sorry for the lack of posts, but I've been busy doing things OUTSIDE of the hospital and just haven't found the time to do an update..
Mom arrived early on Tuesday morning. Ben insisted on staying in bed until she arrived so that "she could wake him up". Luckily, I think she was here by about 8am. I stuck around all day Tuesday to "train" mom on everything so that I could feel comfortable being gone most of Wednesday and Thursday. Although she never really felt comfortable enough to get him in and out of his stander or bike, she quickly mastered transfers from his bed to his wheelchair as well as transfers to the potty seat. So that was all that was really needed.

On Tuesday morning, there was actually a ventriloquist scheduled to put on a show for the kids. Here is a cute photo of Ben and Nora Lee waiting for the show to get started.

Unfortunately, the show was pretty poor. It really wasn't good and I think everyone just felt a little bit uncomfortable because the guy just wasn't funny. After about 10 minutes, Ben asked to leave and Mom and I were happy to oblige him.

My colleague and friend, Paule, came by the hospital at about 5:30 pm that night to pick me up to take me to dinner at her place, which is actually very close to the hospital. We had a lovely evening chatting and gossiping over a few glasses of wine and a lovely supper.

I stayed at a hotel both Tuesday and Wednesday nights while Mom was here. What a welcome break from the hospital. I did return though for a few hours on Wednesday afternoon. And I was glad I did as I got to meet two Shriner's that are on the Board of Directors. The man on my right is actually Armand Lono, the uncle of my favourite High School teacher, Robin (Lono) MacDonald. And the one on the left is the head of the NB Shriner's. What nice men! It was so nice to meet them. I had hoped to get a photo of Ben with them, but that was a no-go. Armand is actually reading this blog (Hi Armand!)...it seems almost everyday I find out that someone else is following us on this journey.

Wednesday evening brought more socializing with Paule. She was so great to entertain me two nights in a row. She picked me up again at the hospital and off we went to get take-out to take back to her place. Well...after getting lost a few times, we finally found the place (with the help of my iPhone) and headed back to her place for more wine, food and conversation.

I did manage to get some shopping in on Wednesday and Thursday. And some damage was done to the credit card at the Apple Store as well as Lululemon.

It was hard for me to stay away from Ben for too long though and I was back at the hospital by about 2pm on Thursday afternoon. I was able to go to his swimming session and hear Stephanie rave about all the wonderful progress he made while I was gone. I love hearing her sing his praises! In the morning PT session, not only did he do some knee walking (while holding on to one of her hands), he also took his longest walk with his canes since the surgery and was awarded with another surprise from the magic mailbox. And in the pool this afternoon he even took some independent steps! I just wish I had had my camera along. Tomorrow I will for sure!

Daddy and Daniel arrive tomorrow afternoon. I was telling Stephanie this and she offered to have Daniel join her and Ben in the pool during his session tomorrow. I can't wait for that.

So that just about covers the last few days. It was great to have mom here and I know that she enjoyed herself. Surprisingly, this hospital is really a fun place to be. Mom left us after supper tonight to head to a hotel near the airport so she can catch an early flight tomorrow morning to join Dad in Florida.

To end tonight, I'll leave you with a photo of Ben's incision. There wass a little bit of stickiness left from his dressing and one steri-strip left when I took this photo yesterday. That is now gone. Looks pretty good, eh?

Tuesday, February 14, 2012

Shriner's - Day 11 (cross-post)

It felt so good to get back to business today. Not only for me, but I think Ben felt the same way. He truly had a great day. He was very happy to go back to the playroom to play with the child life workers and volunteers. Eric (volunteer) was here today and Ben enjoys him because Eric knows ALL ABOUT DINOSAURS. Ben's been asking me about what happened to the dinosaurs so I just directed all his questions to Eric.

11am brought a session of PT...this time with Corinne as Stephanie was out today. Ben sometimes has a hard time with new people, but Corinne was all prepped and ready for him with a game of basketball so he was thrilled. And he worked REALLY hard for her.

After lunch and more playroom time (this time with 2 more awesome volunteers), it was time for PT session #2 in the pool! Poor Ben bugged me all weekend to go in the pool so he was more than ready this afternoon. He and Corinne played more basketball, built a tower with blocks and even played fireman (using a squirt gun to put out fires). Really. The therapists here know how to entertain these kids so that they don't even know they are working!

We were told this morning that we would be getting a roommate today for most of the week. Meaning that I would lose my nice comfy hospital bed and that, of course, we'd have to deal with extra people in our cozy room. Well, luckily, things got shifted around so that we had no one join us today. And tomorrow, we will have a roommate but just for the day. And that's it...for this week at least! Phew.

AND...my mom (AKA Grammie) comes tomorrow. She is on the early flight so should be here just about when we are having our breakfast. Ben is beyond excited. As am I. I get to go have some adult time. Dinner at a friend's place tomorrow night and then I get to sleep at a hotel ALL BY MYSELF for TWO nights. WOW. I'm not even sure what to do with myself. My one and only plan is to make a trip to Lululemon for some new yoga pants and hopefully a new sweater. And I'm sure I'll be spending some time at the Eaton Centre too. Nothing like some good 'ole retail therapy!

Here's a video of Ben in the pool today with Corinne. This is a pretty good example of what they work on in the pool. A lot of walking on the bottom of the pool with flat feet and standing tall.

Shriner's - Weekend 2 (cross-post)

(Sorry this post is a bit late...but for some reason, I couldn't get it to post from BlogPress via my iPad.)

Am I ever grateful that this past weekend was the only weekend that I had to spend at Shriner's alone with Ben! For most of the weekend, Ben was the only patient. So we were extremely bored. Extremely. And a bit homesick. Especially after doing FaceTime with Clarence and Daniel. Although it's great to see them and talk to them, it just seems to make us miss home even more. Daniel got a new train track and of course, had to show it to Ben. Ben just loved watching Daniel play with the new track.

But. We managed and now it's over with. I don't think I've ever been so happy to see Monday arrive.
We filled the weekend with lots of videos, lots of Cut the Rope, story books, bike rides, and just plain silliness.
Now we look forward to Grammie arriving tomorrow and Daddy and Daniel arriving on Friday. Unfortunately, we are getting a roommate today. Ugh. I'm not sure for how long, but I expect they will be gone by the weekend. I lost my nice, comfy hospital bed, but spoke up and managed to get my hands on one of the few cots so I don't have to sleep in one of those horrible fold-out chairs.

Actually, if I'm lucky I won't have to sleep in it all that much as mom will be the one staying with Ben on Tuesday and Wednesday nights. And I get to go to a hotel for a few nights.

Ben is in the playroom now with another great volunteer named Eric. Eric knows ALL about dinosaurs and Ben is having a great time. I just went down to swap him from his stander to his wheelchair and they were looking at a globe. Ben was showing him where our home town is. It was quite cute.

Today we start week 3. I am so excited to see what Ben does this week!

Friday, February 10, 2012

Shriner's - Day 10 (cross-post)

Another week over. I really can't believe that we've done 2 whole weeks of rehab here at Shriner's. Amazing. Just four weeks left to go!
Ben did everything that was asked of him today. He even went along with the OT and worked hard for them there. He stood in his stander and rode his bike and did everything that Stephanie, the PT, wanted.
Sometimes I wonder if Ben should have had this surgery earlier. But then we have a day like today. Where he was happy to do between 4 and 5 hours of therapy and I know that we couldn't have done this a year ago. When he could barely tolerate an hour of therapy, twice a week...let alone 4 or 5 every day for 6 weeks.
The most exciting part about today was that HE WALKED WITH HIS CANES today. With very little help. And really, the help is just so that he uses the right form.

(as you can see, it was pajama day again...)
AND...he got to go to the MAGIC MAILBOX. Only kids who WALK get to go to the Magic Mailbox for a surprise...

And of course, he got to go in the pool again.

But the day wore him out. And unfortunately for me, it's just 6:20 and he's already asleep for the night. That does not bode well for me in the morning. Lucky for me, I have an iPad...with netflix. Hopefully that will at least keep him entertained until the sun comes up.

And to sign off on another week of great work by my kiddo...here's a video of him walking with his canes for the first time since his surgery.

Shriner's - Day 9 (cross-post)

Sorry for the lack of a post last night (or this morning when you had your coffee, Mom), but I was so tired last night, I could hardly think, let alone write.

Yesterday wasn't a bad day. But I didn't get near enough sleep the night before (partly my fault for staying up til after midnight reading and partly Ben's fault for waking up about 8 times between midnight and 3am as well as being up for the day at 6am). So combine a rough night with the physicality that is required to deal with Ben and that makes for one tired Mommy.

So I thought I'd talk about what a day looks like for us....paying particular attention to how many times I have to transfer Ben. Because that seems to be what's taking it's toll on me the most. You see, Ben had major surgery on his spine. That means for the next 6 months we have to make sure that there is no undue strain on his back. It means that all active movement is OK...meaning movements that Ben does on his own are OK (that's why we have pain...he'll know when he's gone too far), but passive movement (like us moving Ben) has all sorts of restrictions on it. In particular, I cannot pick Ben up under the armpits (how we all pick our kids up). And I need to make sure that his legs are never bent so that his trunk and legs are at less than a 90 degree angle. And at this point, it means no floor sitting. The only sitting allowed is in his wheelchair or on a bench.

Here's a video of Stephanie moving Ben from the wheelchair to the mat. This is how I transfer Ben many, many times each day.

SO here is how our day went yesterday:

6am - Ben is awake. I can't believe it. I was so hoping for at least 7:30. After listing to him giggle and laugh in his bed for 20 minutes, I finally get up and put my ipad in front of him so he can watch cartoons on netflix for a little while.

7am - we are both up for the day. I transfer him (#1) from his bed to the wheelchair. Up to this point, he's been eating all his meals from the bed but it's time for him to start eating sitting up.

7:30am - breakfast arrives for him. I head to the cafeteria to get myself something.

8am - Ben needs to pee. Transfer him to the bed (#2) to get his pants off. Transfer to the nifty potty/wheelchair thing we have (#3). Then back to the bed once he's done (#4).

8:30 - Time for a bike ride. Transfer him from the bed to the to the bike (#5).

9am - End the bike ride in the playroom. I go back to our room to get his standing frame. Transfer him from the bike to the stander (#6). I head back to the room to get a shower.

9:45 - Return to the playroom with Ben's wheelchair. Transfer him from the stander to the wheelchair (#7). I return to our room to catch up on emails, etc.

11am - return to the playroom to take him to PT. Find out he has to pee. Return to the room. Transfer from wheelchair to bed (#8) From bed to potty (#9) From potty back to bed (#10) and from bed back to chair (#11). Go to PT and stay with him at PT from 11 til noon. Here's a video from our morning PT session.

Noon - Return to the room for lunch. After lunch, decide it is FINALLY time for Ben to have a bath. Transfer from chair to bed (#12) so I can undress him. Then from bed to (#13) bathtub. They have a little bathseat for him to go in. It looks just like a reclined beach chair.
1pm - transfer from bathtub to bed (#14). Then from bed to wheelchair (#15).

1:30 - Take Ben to the playroom to play with his favourite volunteer, Philip. Return to room for a little nap.

2:45 - Pick Ben up from playroom. And head to PT. After being there for 5 minutes, he then informs me that he needs to pee. So back to the room we go. Transfer to bed (#16), to potty (#17), to bed (#18) and back to wheelchair (#19).

3pm - Back at PT. Transfer from chair to PT bed (#20) to change him into his bathing suit (or babing suit, as he says). Transfer him to the pool (#21). Hang out and watch his pool session.
3:45 - Transfer from pool to PT bed (#22) and then to floor mat (#23) for stretching. Stretching is so great right after he's been in the pool as his muscles are all warmed up. Thankfully, Stephanie transfers him back to his chair after the stretching.

4pm - Return to room. He's tuckered out. So transfer to bed (#23).

4:30pm - Supper arrives. Help him eat his supper. Go to the cafeteria for my supper.

5:30pm - Ben decides he wants to go for another bike ride. So transfer from bed to bike (#24). Go for a little bike ride around the hospital.

5:45 - Return to room as Ben has to pee. Transfer from bike to bed (#25), to potty (#26), and back to bed (#27). Where Ben is happy to hang out til bedtime watching Backyardigans' videos. Thankfully...because by now, my back is telling me that it will take no more. And I am EXHAUSTED.

7pm - Ben goes to sleep. And I crash with my book.

Wednesday, February 8, 2012

Shriner's - Day 8 (cross-post)

Well. We are officially 2 weeks post-surgery! Woohoo! That means that the dressing came off today FOR GOOD. It also means that he can go in the water...yippee! Finally a bath! And the pool!

First off, I want to show you more video of Ben working with Stephanie this morning. Again, she was ready for him when we arrived and had a fun "Dinosaur Hunt" all set up for him. (You will likely notice that he's once again in his pajamas. Ben and I have agreed to take turns. So he gets to wear his pajamas one day and the next day he will wear clothes. A fair compromise, I guess.)

I just love seeing his legs so straight. Really. It's amazing to me.

After the dinosaur hunt, we headed back inot the gym for another beanbag game. In order to get a beanbag to throw, Ben had to stand up with his canes and then sit back down. Here he is doing it ALL BY HIMSELF!

In the afternoon session, Ben got to go in the pool! He was a bit apprehensive (I think anything new after this surgery worries him a bit), but of course, Stephanie was ready and had a fun game of "Spray the dinosaurs with the squirt gun" all ready for him.
One of the rules of the pool is: you can splash all you want but ONLY with your legs! Here is Ben trying that out:

(If you want to see more videos of Ben, you can check them out on youtube. Just search for me "caryanne07".)

Otherwise, the rest of the day was pretty par for the course. He did his stander time no problem. Spent some time in the playroom. And rode his bike a bit. That's the harder one to fit in to his day. He likes it, but it takes a lot of energy and I don't like to use up his energy before his PT sessions.

Answering your questions (cross-post)

In yesterday's post, I asked for questions. And questions I got. So here goes!

1. Will Ben be able to leave the hospital during his 6 weeks of rehabilitation?

Yes! Ben will get a weekend pass for the last 2 weekends of our 6-week stay, meaning that for the weekends of Feb 24th and March 3rd, all 4 of us (Mommy, Daddy, Ben and Daniel) will get to hang out at a hotel together. And even better than that...on the weekend of March the 3rd, Ben's Uncle Jeff (along with Aunt Sheryl and cousins Jacob and Lucy) and Aunt Virginia are going to all come to Montreal so we can all hang out for the weekend together!

2. I see Ben got new braces (also known as AFO's - ankle-foot orthosis). Were you able to find new shoes to fit over them?

Yes. Typically, finding shoes to fit over AFO's can be a challenge. BUT. We love the "Joe" sneakers from Superstore and find these fit really well over his braces. And luckily, the sneakers that we had with us fit over his new ones. We just had to remove the soles to make a bit more room as these braces are a bit bigger than the last pair.

3. Does Ben get frustrated now that he can't do what he could before?

Surprisingly, no. I was really shocked that he hasn't been frustrated AT ALL. I think this has a lot to do with the fact that we chose to do his SDR where they have an in-patient rehab program for after the surgery. Honestly, I think that if we had to go home just a week post-op, it would be HORRIBLE. It would be different for him at home with Daniel running around and playing, if he couldn't join in the way he did before. Being here is different. There is a schedule to the day. And they are ready to entertain children that are confined to wheelchairs and standers.

4. Does Ben have a lot of pain? Or is he just fatigued?

Surprisingly again, he doesn't have much pain, if any, at this point. In the beginning, right after the surgery, he did, of course, have pain, but it was managed very well. Since we have been at Shriner's, he has hardly taken any pain medication. Last week, transfers between the bed and wheelchair were painful for him, but this week, he doesn't complain of any pain at all. Currently, he is only taking Tylenol twice daily about an hour before each physio session.

Yes, however, he does fatigue very easily. Although this improves every day. I find I have to very carefully monitor how much rest he is getting. While not letting him nap. He is sleeping between 12 and 13 hours each night. And I try to make sure that he gets a few hours of rest (video watching) around lunchtime. Then at 4pm, when his sessions are done for the day, he's pretty much in bed after that.

5. Does Ben tell you that his legs feel different? Have you felt the legs? Can you see the stiffness is gone?

I've asked Ben a few times if his legs feel different, but I think it's too hard for a 4-year-old to explain. He does marvel at the fact that when he's standing, his heels are down and that he doesn't "pop" out of his braces anymore.

I have definitely felt his legs and they feel like a bowl full of jiggly jello. It's so strange. What I really want to do is cuddle him on my knee the way I did before the surgery to really feel how much of that spasticity is gone. Based on what I can feel, the spasticity is definitely gone, but his calf muscles are still short, making it hard to get his ankle to 90 degrees. I am so glad that I was warned about this beforehand. Otherwise, I would have been disappointed after his surgery.

6. How is Ben's confidence when putting his feet down (asked by a mom of a child who had SDR a few years back)?

Actually, it's really good. His real fear is more related to balance when sitting, not standing or stepping.

7. What kind of things do they expect Ben to be able to do after surgery?

Well. This is the one thing they are very vague about. I think it's hard for them to tell before surgery just what exactly a child will be able to do after SDR. It's hard to tell how much of their "strength" is true strength and how much is the spasticity. I think maybe in a week or two, I may be able to convince the PT to give me her opinion of what Ben may be able to do. But really, they have said very little.

I do, however, have a few expectations. I completely expect that Ben will AT A MINIMUM be able to walk very well with forearm crutches. I also expect that Ben will be able to walk indoors in some capacity. When I let myself dream and hope, I keep hoping for independent walking (at least indoors) but we'll see. His PT did say that the biggest gains after SDR (in her opinion) come between 6 and 18 months after the surgery. So we have a long ways to go.

Otherwise, though, I expect that sitting will improve and we will also see great gains in his independence, especially related to self-care. I really hope that by the time he goes to school in September that he will be able to go pee all by himself.

8. How much is he doing on his own and how much is help?

It's hard for me to tell how much the PT is helping him. I think mostly the "help" is really more to make his steps better. I'm pretty sure that he could step on his own, but she wants to make sure that he does things properly now. I took some more videos this morning that I'll post later that should show you more about how much he can do on his own.

9. Does he tolerate standing in the stander for an hour?

YES! He really likes the stander (again, another surprise for me). He is so well-supported in it, that it doesn't seem to be an issue.

Thanks so much for all of your questions! Keep 'em coming and I'll try to answer them the best I can.

Tuesday, February 7, 2012

Shriner's - Day 7 (cross-post)

Another big day today! Ben walked with his walker for the first time since surgery! (Stephanie was awesome and made up a treasure hunt for him as motivation.) I couldn't believe how well he did. Yes, Stephanie was supporting him and helping him move his legs but it LOOKED awesome to me. And Stephanie was really happy with his steps.

For the second leg of the treasure hunt, he had to use his bike for the first time. Stephanie couldn't believe that he could do this right away...she was thrilled with how strong his quads are...must have been all that biking in the halls of the the hospital at home.

And he finally got to KEEP his new braces! They required a couple of adjustments so we had to wait until this morning to have them. Pretty cool, eh? I want to take some more pictures of his braces to show you how great they really are. Right now, he can't quite get his feet to a 90 degree angle so the orthotist put a little wedge in each brace that he will shave down as Ben's calves stretch out. Then, hopefully, the wedge can be removed altogether.

There's not much else to write about tonight. OT is still a struggle that will need to be resolved. Luckily, he doesn't have OT again til Friday so I can think on this issue for a few more days.

I have been getting a few questions from commenters and thought it would be a good idea to do a post just answering your questions...so if you have any, fire away and I'll do a post in the next few days just to answer your questions.
Goodnight all.