New beginnings

Yep.  It is the night before some big changes around here.  You have probably already guessed it...Ben and Daniel start public school tomorrow.  Everyone is excited and ready...lunches are packed, clothes are laid out, and backpacks are by the front door.

I'm hoping that this big change in our family life will also mean a few changes in my life.  I'm hoping to blog more (that wouldn't take much as I haven't posted since June!), cook more, work more and basically just do more of the things that I've been wanting to do since those 2 boys arrived almost 5 years ago.

I have lots of topics and things that I want to blog about.  I want to tell you about how Ben's school year will go (at least how I hope it will go), I want to tell you about all the progress he's making, and I want to show you all the cool things that he's been working on at home.  But I won't do that tonight.  Tonight, I will just tell you that we had an AWESOME summer. 

This was our first summer with our trailer and we were out in it almost every weekend all summer long.   This summer, we...


Played in the water...

 

 

 

Went swimming...

 

 

 

Climbed on cool rocks....

 

 

 

Started using forearm crutches...

 

 

 

 

Played with friends....

 

 

Had fun with our brother....

 

 

And went on LOTS of bike rides...

 

 

 Plus a million other things.

I can't wait to start blogging here more often.  I hope that you all haven't given up on me...and still want to read what I have to write.

See you tomorrow...I'll be uploading "first day of school" pics as soon as I get home from dropping them off!

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!!

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?

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 - 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 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.