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.