Shriner's - Day 6 (cross-post)

After somewhat of a rough night (I think there will not be any more naps...even on weekends), Monday arrived. And we were ready!


I decided not to fight the you-need-to-wear-clothes-today fight and left Ben in his pajamas. Somedays, I'm just not in the mood for that fight.

I did have to fight the you-need-to-go-to-OT fight though. You'd think Ben would enjoy OT...it doesn't require the brute force that PT requires, but nope. Currently, there is a student working with Ben while the OT supervises. Well. The OT is great. The student...not my cup of tea. And apparently, not Ben's either. We'll see if this improves or not. If not, I think I'm going to have to request to have her taken off Ben's case. We'll see though. I'm not ready to do that yet.


But I'm getting ahead of myself. Before OT this morning, Ben headed to the playroom while I packed up our room. Yep. We moved. To a much better room. And get this...I even have a REAL bed. Woohoo! I have been warned many times however that this may not last...and we may even get a roommate. Which would totally suck. But if it happens, I'm sure we'll deal.

Ben had PT with Stephanie at 11. Which went fairly well. He needed some convincing to do the crawling part of the program this morning, but in the end did fantastic.

After 3 hours in his wheelchair (either in the playroom or at OT) and then an hour of PT, he was pretty much exhausted. So it was back to our room for lunch and some rest. Seriously. He's EXHAUSTED. Like he needs to lay right down in bed and watch videos for at least an hour, if not more. He'd go to sleep if I let him...

After lunch, we were surprised with a package. As we opened it, I had NO IDEA who it was from. NONE. On the top, there was a HUGE card. And it wasn't until I opened up the card and saw all the notes from my UFE marking people that I clued in. And I cried. It totally got to me. They all wrote such nice notes to me and Clarence and Ben. Even the people that weren't in Toronto last weekend (when they were all there working without me), sent notes by email to include. (To those of you that have no idea who I'm talking about, here's some clarification. These are a group of 10 or so people that I've worked with each fall for up to 10 years. And although we are scattered across the country and only get together a few times each year, we are EXTREMELY close. EXTREMELY.) And the gift they got for Ben???? PERFECT! It's "Om Nom"...the frog from his favourite ipad game, "Cut the Rope"! He loved it so much that we had to take it everywhere we went for the rest of the day.

Including playroom! Where it was time to break out the musical instruments!

And then...here comes Stephanie (PT) with Ben's standing frame and a brand new dragon!!! She knows my boy well. He wasn't at all freaked out about being put into this strange contraption. He is completely strapped in and doesn't have to really use his muscles to stand, BUT this does force his heels down WHILE his knees are straight, therefore stretching both calves and hamstrings. He will spend up to an hour each day in his stander.

Then we were off for his second PT session of the day. Where he moved on to STANDING...with just a bit of help from Stephanie. Pretty awesome, eh?

Stephanie really knows how to motivate Ben. For this part of the session, he made a house for his new dragon. I love it!

He also got to try out his new braces today. They needed a bit of adjusting, but will be all ready for us in the morning. Ben LOVED them. Which is a good thing. He has to wear them 24 hours a day. Yep. He has to wear them to bed. But he doesn't complain about that at all.

So a busy day.

A commenter asked me on an earlier post when Ben's intensive PT starts. Well. It started from the moment he got here.

You have to understand that this surgery renders you basically like an infant. Ben cannot do any of the things that he could do before. Like roll over, sit, crawl, pull to stand, etc. Not any of it. He has to completely relearn how to use his body...without spasticity. Luckily Ben has quite a bit of strength so hopefully by the time we go home in 5 weeks, he'll be able to do what he did before...only better. And then we build on that. At this point, we are still working up to tolerating being in the wheelchair. After a few hours, he's exhausted and needs to lie down.

In a nutshell, while here, this is what Ben will do each day. 2 hours of PT. 1 hour of OT. 1 hour in the stander. 1 hour in the bike. 1/2 hour in the pool. Plus. He will wear his braces for 24 hours each day. And he'll spend a few hours in the playroom. Sounds pretty intense to me.

So that was our Monday. How was yours?

Shriner's - Weekend 1 (cross-post)

(Post written on Sunday evening)

After 15 very long days, we were finally back together as a family for at least some of the weekend. Clarence and Daniel arrived at the hospital around 6:30 on Friday evening. Ben and Daniel were so happy to see each other!

After a bit of playing and showing them around, Daniel and I were off to the hotel.  Honestly, after being in hospitals for the last 2 weeks and a not-so-luxurious hotel...this was like heaven. We actually had a suite and it was awesome.

As I was trying to get up-to-date on what he's been up to since I left, I asked him "Daniel, what was the most fun thing you did while I've been away?". His answer "Come to visit you and Ben! Cause I missed you so much!" Adorable. And the perfect answer.

Daniel was very over-excited and only managed to get to bed around 9pm...which is 10pm for him. Much later than his normal 7pm bedtime. Of course, this didn't affect his wake-up time too much and he was up and ready to face the day at around 7am. I quickly got him set up with a new Thomas video so that I could sneak back into bed (and what a bed!) for another hour of shut-eye.
After some breakfast, we headed back over to Shriner's. Daniel was just itching to get his hands on some of those toys in the playroom.

Here are Daniel and Ben playing with this cool "balls-through-the-maze" toy that they both loved:

After a few hours of playing and lunch, Daniel and I headed back to the hotel for some time in the pool. It's quite a nice pool area...with a large common pool, a warm kiddie pool and a hot tub.

On Sunday, after some more time in the pool, Daniel and I ventured out. We decided to go check out the Biodome...which entailed a ride on Montreal's Metro. Daniel LOVED it!

And the Biodome was AWESOME! I can't wait to go back with the whole family.

After a few hours there, we headed back to the hotel to check-out and go back to Shriner's for some more family time. The boys loved this soccer game!

After some playtime and supper, it was finally time to say good-bye.

Now...Clarence and Daniel are at the airport waiting to board their plane home. Ben is trying to go to sleep (he had a big nap this afternoon so he's having a bit of trouble falling asleep) and I'm blogging. I'd like to be watching the Superbowl (Go Pats!), but I need to wait til Ben's asleep before turning the game back on.

Now I'm ready to Week 2 at Shriner's to get started!

Random information (cross-post)

Ben doesn't have OT this morning so he's in the playroom with Nora-Lee. This is the first time that I felt that he was comfortable enough for me to leave for an extended period. Before, I would leave for 5 or 10 minutes but come right back.

After having my shower, I am now hanging in the family room blogging. Since I have another hour before his PT session, I thought I'd give you more information about what it's like to spend an extended time at Shriner's.

1. The food situation for Ben - This was probably the thing that had me the most worried before we got here. But it's turned out surprisingly well. All Ben's meals are of course covered. So his meals show up at 7:30, 11:30 and 4:30 each day. Each day, the dietician brings me the menu for the following day. I look through it and make any changes that I want. There is a whole other list of foods that are always available so I can make substitutions quite easily. I do have a small issue with the dietician. As most of you know, Ben has an egg allergy. We also don't allow him to have nuts or shellfish as these are considered "highly allergic" foods. As we were going through the menu one day, I asked the dietician if the fish sticks or chicken nuggets have egg in them (many do but some don't). Well. She wouldn't even consider giving him those because they go in the fryer and there is no control over what goes in the fryer. To me, that's a little over the top. We go to restaurants ALL THE TIME. Ben has french fries EVERY SINGLE TIME. Who knows what goes in those restaurant fryers?? But it's never affected him. I tried to explain this, but she wouldn't even consider it. I'm leaving the issue for now, but if needed, I'll push the issue some more.

2. The food situation for me - Of course, my meals aren't covered. So I need to sort those myself. There is a cafeteria on our floor. And it is surprisingly good. Every day there is soup and a salad bar and then 2 hot options. Plus, lots of fruit and desserts. And it's SUPER CHEAP. There is also a fridge that parents can use to store items and a microwave. Before arriving, I really thought that I would get groceries and prepare a lot of our food myself. Well. The food at the cafteria is good and I usually end up eating the rest of Ben's meal, so it just doesn't seem necessary or worth the bother.

3. The laundry situation - Thankfully, there is a laundry room that we can use. I was pleasantly surprised to find it very close to me room and FREE. So laundry is extremely simple.

4. The bathroom situation - This is a strange one. Ben is in a double room. But we are the only occupants (thankfully). There is a full bathroom attached to the room. BUT. That bathroom is "technically" only for patients. I'm not even supposed to pee in there. Although I was told that that rule was overlooked at night. There are separate bathrooms for parents. Which are tiny. And the shower curtain sticks to me...which totally grosses me out. But oh well. I'll survive.

5. The nursing situation - I love nurses. I really do. And they were awesome at the Children's Hospital during Ben's recovery. Just awesome. I loved all of them but one (and that was just really a personality thing). I like the nurses here too. BUT. They are starting to drive me a bit crazy. I honestly think that they don't have enough to do here. The kids here are not sick. Most of them have had some type of surgery and are here for rehab. I understand that they need to check on Ben on occasion to take his temperature, give him his meds (although we are done with that now), etc. But they are continuously trying to help me dress him or give him a sponge bath or take him to the bathroom. He's 4. He wants his mommy to do those things. And he even wants privacy when he does those things. And I want to do those things for him. What else do I have to do every day? That's my role.

5. The video situation- I have had a few requests for videos of Ben's progress. I am trying. It takes FOREVER to load a video. I think I'm going to try to take shorter ones to see if I can manage to get one to load. So far, I am getting nowhere (I've had one loading to youtube since last night and it's still not done).

So there you go. The nitty gritty details of what it's like to spend time at Shriner's.

Shriner's - Day 3 (cross-post)

Yesterday was Day 3 at Shriner's. Another great day. Ben is loving it here...in fact, he even said "I am having so much fun Mommy, I don't want to go home!".

As will be a typical day for him he had 2 1- hour sessions of PT and one session of OT. And LOTS of time in the playroom. We couldn't believe it when we got to the playroom in the afternoon to find that they had brought some snow INSIDE to play with! And, Ben's favourite volunteer, Philip was there to play with him.

And to top it all off, Angie (child life specialist) thought it would be great fun for Ben and Nora-Lee to throw snowballs at Philip! And he even went along with it!

Ben has decided that he is taking no more pain medication. He has been on very little since Monday, but yesterday was the end. I have been making him take tylenol before his PT sessions, but yesterday I gave up. Transfers between the bed and wheelchair are relatively pain-free now, so I thought we'd see how he made out at PT with no meds. Well. He did fine. So we're done. Kinda amazing when think that they took out a huge piece of his spine just 9 days ago!

PT continues to go amazingly well. It's even going better than OT. I think he just finds OT boring whereas he LOVES everything that Stephanie (PT) has for him to do.

He even seems to enjoy stretching for the first time in his life.

Shriner's - Day 2 (cross-post)

We are officially 1 week post-op. I can't believe it. In some ways, it feels like it's been months since I saw them take away my screaming child and yet in others, it feels like yesterday. I'm so glad that it's not a week ago...and we were hanging out in the recovery room.

Today was an up and down day. Some parts were great and others...not so much.

First off though, here are a few pics from our walk around the hospital last night before bedtime.

Me and Ben...after he kicked my butt at Snakes & Ladders:

We had to go say good-night to the fish at the clinic downstairs. Here's Ben telling me to be quiet...they're sleeping:

We also had to say goodnight to the albino frogs. Ben couldn't see them as they were too high up so I took a picture for him. Kinda creepy, eh?

So, now back to today.

We had a better sleep last night. Ben slept well and I slept considerably better than the night before. I decided to try sleeping in the converted chair the opposite way around and it was somewhat better. Plus, I was just so freakin' tired.

We woke around 7 and I thought we had LOTS of time before my meeting at 8:30. Well. We would have. Except that Shauna and Daniel decided to FaceTime us around 7:45. It was great though. The boys loved it again and Ben got to see Shauna for the first time in nearly 2 weeks. They used the iPad so show us the snow outside as well to show us the new train set that Daniel had set up.

So yeah. This put us a bit behind schedule. I left Ben with a student nurse (well-equipped with board games and books) to attend a meeting with all Ben's "people". There is a lot, you know. His PT, OT, nurse, dietician, social worker and child life specialist...plus me. Basically, we talked about Ben's schedule, his allergies, and other logistical things. I did manage to complain (once again) about my bed. Well...the squeaky wheel gets the grease. Or in this case, the squeaky mom gets the cot. About 10 minutes after the meeting, the social worker arrived with a cot for me. It's still temporary as I should have a real bed, but this is a million times better than that convertible chair I was on for the last 2 nights.

After the meeting, I had a battle of wills with Ben about wearing clothes today and not pajamas. This boy would were jammies every single day of his life if I let him. Well. It was time for clothes. I won this time. I actually mentioned Ben's preference for PJ's at the meeting and I think at some point, his team will have a pajama day just for him.

After the meeting, it was time for OT with Betty. After getting him dressed, I loaded him into the wheelchair and off we went. He played with blocks, coloured and cut with scissors. I can see that he has stuff he needs to work on, but we have OT 3 or 4 times a week for the next 6 weeks, so he should be fine.
He was tired after OT though. An hour in his wheelchair wears him out. Especially since Betty undid the strap around his chest so he really had to use his core to stay upright. So back to the room we went.
He was so wore out that Stephanie did his PT session in his bed. Basically, just stretches and checking out his old braces to see if they would work until his new ones are ready. I couldn't believe how easy his braces went on. What a completely different experience than before. Before, I had to position him just right and stretch and strecth to just get them on. And then 5 minutes later, he'd just pop out of them. Now? It's like putting braces on Daniel. No resistance AT ALL! Amazing!

After lunch, the orthotist came by to cast him for his new braces. We were hopeful that he would be able to get dinosaurs on his braces this time, but nope, no luck. No dinosaur designs existed. I then was hoping that he would get the really cool camouflage ones, but he wasn't interested. If he'd had his choice, it would have been the Halloween ones...but I managed to steer him towards more of a tie-dye look that he calls "rainbows". So a compromise of sorts.

Then came the not-so-fun part of the day. His dressing needed changing. After much kicking and screaming, the nurse and I managed to get it taken care of. I was also hoping to give him a bit of a sponge bath at the same time, but he was not in the mood for anymore touching or prodding.

Then it was time for the playroom. Angie, another child life specialist, decided to put Ben and Nora-Lee (I had her name wrong in an earlier post, it's Nora-Lee, not Lora-Lee) to work...washing the toys. Which of course they loved! Ben gave all the animals a bath, while Nora-Lee worked hard washing dishes.

After playtime, it was time for another session of PT. This time, we actually went to the PT gym for some real activity...like crawling for the first time since surgery! Yes, he needed a bit of support from Stephanie but he basically did it himself! Totally cool! And, of course, Stephanie had a little game all made up for him with dinosaurs to keep him motivated.

It was hard for him though. Just to give you an idea of what the surgery has done to his body...before, he could crawl all over the house. He could crawl up 2 flights of stairs to go from our basement all the way to the 2nd floor to his bedroom with no help. Now? Well, he needs some support from Stephanie and he can only go about 4 or 5 feet before he has to rest. But. Stephanie was THRILLED that he could do this the first time trying after surgery. THRILLED.

Then, we did more bubble-popping with his toes like yesterday...where he was a real champ again. Tomorrow, she may have to weight his feet to make it harder for him.

And then...we were onto sitting. Ben sat on the bench with Stephanie behind him for support. And then they played a beanbag game. He was nervous at first, and needed support from Stephanie but by the end, he was doing it independently. And what an arm that kid has!

By the time the session was over, he was EXHAUSTED. So back to the room we went for down time and supper. After a few videos and stories, Ben was asleep by 7:15.

So yeah. An up and down day. Not quite the high that yesterday was, but nevertheless, a success.

2 down. 40 to go.

Shriner's - Day 1 (cross-post)

I was worried what today was going to bring as I struggled to get comfortable and sleep last night. Ben had me up at least 5 times complaining that his tummy hurt and I was worried that he was going to be sick again today. But, luckily, that seems to have passed. I convinced him to have some toast and banana this morning for breakfast and after that, he never complained about his tummy again.

After we had breakfast and got dressed (well, I got dressed. Ben stayed in his jammies.), we decided to head down to the playroom to see what that was all about. Well. It is simply fantastic. Check the next 3 photos. It's HUGE (considering how few children there are around) and there are a TON of toys. Ben had a great time building a tunnel and garage with blocks for his hotwheels cars.

And you know what the best thing is? There are child life specialists there JUST to entertain our kids! How awesome is that? So basically, I get to sit back and enjoy my coffee while they play with Ben. 

At around 11am, we headed back to our room for a bit of a rest and say good-bye to Daddy. Ben had just spent 90 minutes in his wheelchair and that's A LOT so early in his recovery. You many not have noticed from the pics but this isn't his own wheelchair. His wheelchair isn't supportive enough at this point to be secure for him. So for now, we are using a wheelchair from Shriner's. But it's obvious that he has great core strength. A lot of kids after having this surgery, are slumped right over and have a hard time to even sit up properly.

After some lunch, Betty came to visit us in our room. Betty is Ben's OT. She is fantastic and Ben was happy to get back in his wheelchair to play with her.

And I don't know how she did, but she actually managed to get him to hold his marker right!

After about 20 minutes with Betty, we headed back down to the playroom. Well. It got even better in the afternoon. A volunteer named Philip was there to play with the kids. At first Ben was quite shy around him, but after about 10 minutes, Ben was roaring with laughter and having a great time with him, as you can see from the pic below.

They made a bunch of pictures together with pastels and now they are hanging on the walls in our room.

Then, we headed off for Ben's for PT session with the PT-extraordinaire, Stephanie. At first, he was a bit nervous and didn't want HER to get him out of his wheelchair (it hurts his back a lot when we do transfers). He wanted MOMMY. Well. Once Stephanie moved him, he didn't want anything to do with Mommy after that. He prefers Stephanie because she's "gentle" and Mommy's not.

The first session was pretty relaxed. She started with bubbles. She would catch a bubble on the wand and he was to kick the bubble with his foot to pop it. She wanted him to kick by making his leg straight. So just by moving the leg below the knee. And also, she wanted him to just move one foot at a time. Both of these things are extremely hard for a kid with the kind of CP that Ben has. First of all, kids with CP have a hard time moving just one leg. And secondly, their tendency is to lift the leg from the hip instead of extending the knee.

Well. He did amazing. The left leg did it very well from the beginning. The right leg took a little longer to get going but eventually Ben was able to do it with his right leg as well. And of course, she made it all into a game. He had to burst 20 bubbles (10 with each foot) before she did. And if he did, then he got a prize.

Stephanie was thrilled with how quickly he could do this exercise. She told me that usually it takes the kids a few days to get it down. Woohoo!

After that, we moved on to stretches. It's important to understand that most of Ben's spasticity (i.e. tightness) in his legs is now gone due to the surgery. However, his muscles are still short. Because his hamstrings and calf muscles haven't been able to be stretched out properly (due to the spasticity) they are shorter than they should be. So although, Ben's legs feel all loosy-goosy now, he still can't get his heel to 90 degrees. His calf muscle is too short. So there will be lots of stretching over the next 6 weeks in an effort to get it to lengthen so he can get his heels down.

Usually, stretching is really painful and uncomfortable for Ben. Even with distractions. Today, he watched a Diego video while Stephanie stretched him. He didn't even complain at all. There wasn't even a grimace. You'd swear she was doing nothing to him. I asked him afterwards if the stretching hurt him and he said that no, she was really gentle. But according to Stephanie, "she was really hauling on him." So that's great!

After that, we headed back to the room for supper. Before supper arrived, we had the chance to do FaceTime with Daddy and Daniel. Oh my goodness, it was hilarious. They were so happy to actually see each other that all they did was make funny faces at each other and then laugh histerically. This went on for probably 15 minutes. Mixed in between faces, was lots of "I miss you" and "I love you". It was adorable.

After supper, we decided to go get in the wheelchair and go for a walk around the hospital (it's not very big...so we walk slow and stop and look at everything). While out, we found a Snakes & Ladders Game in the Family room so we played that (Ben won, of course). We even headed downstairs to where they hold the clinics to say goodnight to the fish in the big fish tank.

And then it was bedtime. Here's a photo of our room. It's pretty sparse at the moment, but we're trying to fill up the walls with pictures and cards. So far, Ben has received two packages in the mail. One from Grandma Robinson that was here when we arrived yesterday and one from Uncle Jeff and Aunt Sheryl and the kids that arrived today.

Basically, it was a great day. Ben enjoyed every moment of it. And now he's sleeping in the bed next to me as I type.

Let's hope it's another great day tomorrow.

Shriner's and Photo Update

So. We are here. It feels so good to finally be at Shriners. Compared to the Children's Hospital, it feels like a hotel. What a huge difference. Except for my bed. Which is horrible. But apparently, that should be temporary. We are currently in a double room (although we are the only occupants) and the bed is one of those fold out chairs. They had those at Children's but they were much more comfortable than the ones here. But...this room should only be temporary. Those that are here for longer stays actually get a room with a real bed for the parent. So hopefully we move soon.

Ben is doing great TODAY. Yesterday, not so much. Both he and Clarence got some sort of stomach bug. Clarence was sicker than I've ever seen anyone. He left Children's yesterday morning at 7:30 and we only finally saw him at 5:30 at Shriners when he brought us our luggage. I'm not even sure how he managed that. He was supposed to fly home last night, but it was obvious that there was no way he could do that. So we rescheduled his flight to today. So he's enroute now. Still tired and weak, but somewhat better.

Ben didn't have it as bad as Clarence, but he did have an upset stomach and diarhea. Not fun when you have a kid who can't get to the toilet. But we got through it and today, we are doing much better.

He finally got into a proper wheelchair and we spent 90 minutes in the playroom playing with some blocks. It was great to see him back to himself.

Here are some photos that were on my camera that I wasn't able to upload to the blog from my ipad.


Day 1 after surgery.  On his back.  You can see his dressing where the incision was as well as the tape over his epidural.

Finally allowed to eat real food on Day 3!

So happy to finally be on his back!

Bubbles with Grammie!

Yeah!  All the tubes and wires are gone!  Time for jammies!

So now that I've caught you up on photos from our stay at Montreal Children's, I'll end this post.  But I'll have one up soon (hopefully tonight) to tell you about our first real day at Shriner's.  It was FANTASTIC!