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!!

Just a wee bit nervous

Ben's getting botox injections on Friday. In his hamstrings and gastrox (calf) muscles. Under general anesthetic. In an operating room.

And I'm nervous.

But he so needs it. We just spent the last 3 weeks in casts trying to stretch out his calf muscles and have barely gotten anywhere. We've basically managed to be able to get him back into his AFO's more comfortably...but that's about it.

So yeah, he needs the botox in his calves. And his hamstrings need it too. So that means ALOT of needles...and his physiatrist is just not willing to poke him that much if he's awake. So that means general anesthetic. Yuck.

So keep us in your thoughts on Friday...although by the time you are all up and about, it'll likely all be over with since we need to be at the hospital at 7am Atlantic time (that's one hour ahead of EST). He should get the botox at around 8:30 and be all done by no later than 9:30.

I'm just hoping that we see some real progress after this. He'll do 2 more weeks of casting afterwards to really stretch those calf muscles once the botox is doing it's work. And then we're off for another week of Conductive Education.

He's been making some real progress with independent standing so I'm really hoping that once he can more easily get his feet flat that we'll see more and more improvement in this area....and then, well, we start working on an independent step or 2...won't that be exciting?!?!

So that's what I hold on to...the gains that I hope we'll be able to make afterwards. And I try to stop thinking about that operating room. I try.

Botox

Just a very quick post to let you know that we're off to Fredericton (90 minute drive away) for Botox tomorrow. Ben will get 2 to 4 injections into each hamstring while under oral anesthetic. The appointment is at 1pm. We need to be there by noon to be admitted into paediatrics.

He is allowed to eat breakfast but nothing after that. That may be difficult but hopefully not too bad.

I'm a bit anxious about it, but excited at the same time. He needs this. He really does. I'm also anxious but excited about the serial casting for his calves in September. His walking has deteriorated alot over the last few months. He's always on his toes. Always. And he falls onto his knees quite often when using his walker. I hate that. I miss the great gait he used to have.

That said...he still loves his walker. And uses it more and more. He's even more confident using it outside on uneven ground. I can't wait til his hamstrings and calves are looser so he can do even better with it.

Wish us luck!

My take on Conductive Education

Part of the reason that I've been mostly MIA for the last month or so is that we are super, crazy busy. As part of the craziness that is our Summer 2010, we are currently in Halifax, Nova Scotia for the week so Ben can have a week of Conductive Education (CE). CE is not offered where we live, so we drove 2.5 hours away to get it. This also means that we had to rent an apartment and stay for 5 nights.

I don't have the energy for a full-blown post on CE, but suffice to say that after 4 days of sessions (between 1.5 and 2.5 hours in length), I definitely feel that Ben has made progress. I don't feel that what he's been doing in his sessions is all that much different from a physio session, but I do think the intense (i.e. longer and frequent) sessions as well as a change of scenery (i.e. new place, new person, new tasks / toys) has made some difference.

Because the Halifax CE group is pretty new and Halifax is a fairly small centre, Ben did not participate in a camp or class. Instead he had one-on-one sessions with the Conductive Educator. I think he would really benefit from a class / camp. He is really motivated by other kids and I think that would be a huge plus for him. The next closest CE Centre is in Toronto and I am considering taking him there next summer to participate in a camp. It's not that big of a deal for us, since my husband's family is in that area and we would just tack another week on to our summer visit there.

Some improvements that I "think" I see:

1. Very much improved at pulling to stand. Ben has always pulled to stand by using his arms and upper body, instead of putting one foot flat and then rising onto that foot. He now puts his foot flat almost spontaneously and only needs a little assistance / prodding to get into standing. We will certainly be working on this more at home since he is doing so well with it.

2. Learned to use his hands more to get down to the floor (or even fall). Ben does not have the reflexes that typically-developing children have. Part of this week's work focused on having him "reach his hands to the floor" when getting down.

3. Climbing up ladders! We worked on climbing up and down ladders quite a bit. I'm not sure of the all of the benefits of this, but he did great at it! (I've loaded a video of him climbing below.)

4. Not so much on his toes when walking. I don't know why this is, but all of the sudden, he's walking WAY better in his walker. He's still on his toes, but his heels come down farther and more often.

5. Improved sitting. Sitting on his bum is still a challenge for Ben. He can do it, but it takes alot of effort and he still can't get into the position on his own. The w-sits very well and that's his preferred way to sit. This week we spent a lot of time working on "long sitting" - sitting with his legs straight out in front of him. To keep him occupied while sitting this way, he would blow bubbles. He could sit like this for at least 10 minutes.

6. Walking with canes. Ben tried walking with canes for the very first time today. He was very reluctant to try it but we managed to convince him eventually. He did really great. (See video below).

I think my personal feelings on CE are that it's not all that much different from Physio. I would really like to get him into a CE camp with kids his own age. I think the real reason that it works is due to the intensity of the sessions.

For more info on CE in Canada, check out the March of Dimes.

Video 1: Walking with Canes!

Video 2: Climbing!

Touching lives

I continue to be amazed by a little boy with Cerebral Palsy. This morning as he walked (with walker) throughout the hospital on his was to and from his PT session, he touched at least 200 people. When people meet him walking in his walker (with his huge smile), they can't help but smile too. I don't just mean little grins, but HUGE SMILES come from these people. Many people comment. Things like "way to go!", "so adorable", "look at him go".

It's awesome to see. When you think of a little boy with CP who has to use a walker, you might just think that it's a sad thing. But when total strangers see Ben going, they can't help but feel completely uplifted. I think it makes their day. And I hope that they pass that feeling along.

Who know how many lives he touched today?

Moving towards walking

At his last PT session, Ben got to try "walking" on his own for the first time. He absolutely loved it and did amazing. His PT thought he did fantastic and I just had to catch it on video. It won't be long before he's ready for his first walker. Check it out!