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.
Tuesday, February 14, 2012
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!
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.
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.
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.
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.
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.
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.
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