Anyone out there?

Hello there strangers!  Anyone out there?  Anyone still reading?

I can't believe that I haven't blogged in a year and a half.  18 whole months.  I'm not sure what happened.  I got busy I guess.  I still read my favourite blogs and I *think* about blogging.  But I just never do it.

I'm not even sure where to begin.  Ben and Daniel are both doing fantastically.  They are now over half through Grade 1.  School has been amazing for them both.  They are both excelling academically, have lots of friends and love their teachers.

Ben's progress has been slow but steady.  I will have to dedicate a full post to that soon.  Actually, I have a ton of blog post ideas swirling around in my head right now.  So hopefully I can commit to blogging once or twice a week and get to all those blog posts.

We recently went on our first cruise.  It was a family cruise over March Break and we enjoyed 5 lovely and magical days on the Disney Wonder.  Here are a few pics of us:

First, Ben and Daniel loved to wrestle in the Mickey Pool.  We kept to an early-to-bed-early-to-rise schedule and often got to enjoy the pool all on our own for at least a half hour.  And even then, it wouldn't get actually busy for an hour or two.

 

                                         

And here's a family pic from our balcony.  I just love this pic so much.  We hardly ever manage to get one of all four of us (let's face it, I'm hardly ever in any pictures) and this one turned out so great. 

Back to Ben for a quick moment before I officially hit "publish".  When I left you 18 months ago, Ben was doing well - learning to walk with crutches and doing well with his walker.  He now walks tremendously with his crutches and uses them inside school.  He still uses his walker but that is limited to outdoors and gym class only.  He can now take independent steps but we are working on that being a functional way for him to get around.  I am confident we'll get there.

I just posted this video to Facebook this afternoon of him walking around our kitchen:












This is a huge deal!  My "dream" for Ben since he had SDR over 2 years ago was to get him to the point where he could walk independently indoors and used crutches for outdoors and uneven ground.  And we are close.  Oh so close.  Realistically, it could be 2 years before we're REALLY there.  But I KNOW we'll get there. 

Well.  There.  I did it.  Wrote an actual blog post.  Sorry it took so long!

(Please, please, please leave me a comment so I know that someone is still out there wanting to know how we're doing.  Oh...and if there is anything you'd particularly like to know about, then leave that in the comments too!)

5 Months Post-Op (cross-post)

On Monday, we will be five months post-op. WOW. Amazing. I keep thinking back to a year ago when we were just starting to explore the idea of Ben having a rhizotomy and here we are now, already 5 months post-op. The surgery now is just a memory...

Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:

1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.

2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.

3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.

4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.





5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.



6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.

Shriner's - Day 26 - a visitor and some great standing progress (cross-post)

Ben had a visitor this morning!  Fletcher, a classmate from preschool, was in Montreal for March Break.  Apparently, as soon as his parents told him that they were going to Montreal for vacation, he was like "That's where Ben is!".  So, they were really nice to take time out from their family vacation to come and visit us.

When they arrived, Ben was in the playroom, but he quickly got back into his walker to show them all around the hospital.  I couldn't believe how long and how quick he walked (with great steps).  He showed them the family area, then we went downstairs to the clinic to show them the fish and the frogs and then all the way back upstairs to show them our room. 

Here is Ben and Fletcher making funny faces for the camera!

And now hugging it out!  How cute are they!

The rest of the day was pretty exciting too.  At his PT session in the morning, he walked quite a bit just holding on to one of Stephanie's hands:

And....

He stood independently for 25 seconds!!  And maybe even took an independent step or two.  Check the video out!




I would say that he has now "officially" passed his pre-surgery abilities.  So now any progress we make is just so much fun becuase it's all new stuff!

The countown is on!  Just 4 more sleeps!

Shriner's - Days 21 and 22 (cross-post)

So here we are...almost in the middle of Week 5. Ben and I are counting down the days to the weekend and til we go home. As Ben said today "10 Days!?!? That's not very long at all!"


This week brought more stair climbing work...this time with Corinne. And this time walking sideways up and down the stairs while holding on to the railing. This is likely how Ben will learn how to go up and down the stairs and is something that we can work on at home with him. I'm so glad now that we put in such a good railing on the basement stairs.

Here's a video of him on the stairs:





After the stairs, it was on to knee walking and pulling up to stand in his bare feet. Check those flat feet!!!! If you remember his "before" video, he was so high up on his toes, he looked like a ballerina. Quite a difference.

Stephanie was back with us today. And we worked on similar things. Again, here he is standing in his bare feet. I really can't get enough of looking at these flat feet. Sometimes looking at his feet before the surgery used to bring tears to my eyes as I just couldn't imagine how he'd ever be able to take independent steps with feet like that....and now? I see hope when I see these feet.

Here's a video of Ben trying to knee walk with no help. He still needs some but is getting close to doing it on his own. I love the end of the video when he pulls to stand. Really...I can't get enough of those flat feet.





In the afternoon, we did more "walking" work. We were going to do a pool session, but Dr. Farmer was at the hospital today doing a rhizotomy clinic (where he evaluates potential candidates) and we wanted to be able to show off for Dr. Farmer. Today's game was that Ben and Stephanie were secret spies. So they had to whisper and sneak around. Here they are writing down clues for me to come find them later when they went to hide.

And here's a video of Ben walking through the ladder. You can see how it makes him take big steps.




At the end of the day, we finally got to see Dr. Farmer. Ben walked with 2 canes for him and then walked some with Stephanie just holding on to his hips really lightly. We tried today to convince Ben to take afew independent steps, but he's just too timid and scared. But Dr. Farmer was so happy to see his progress and even he was willing to say that Ben will walk independently. Again, I have no idea what this really means...and they likely don't either...but like I said before, I expect at least independent walking in the house. Anything beyond that will be like icing on the cake. I have goosebumps just typing this...and can't wait to see what Ben will be doing in July when we come back for his 6-month follow-up.

I love this photo of Ben giving Dr. Farmer a High Five. Ben said thank you to Dr. Farmer for giving him new legs. Dr. Farmer's response was to thank Ben for working so hard. Totally cool.

Hope

I've blogged alot about acceptance. But I've blogged very little about hope.

I have accepted that Ben has CP. I have accepted that he needs braces and a walker to get around...and that most of the time a walker is actually completely useless. So we checked out wheelchairs for those situations when a walker just won't cut it. And I wrote about why I was OK with a wheelchair.

I said things like "all I want for Ben is happiness and independence". I stopped talking (thinking and hoping) about independent walking.

Ben is almost 4 years old. He is nowhere near walking without a walker or canes or crutches. His hamstrings and calves are EXTREMELY tight. We have done botox and casting ad infinitum (it feels like) with good results (to start) that fade away way too quickly (like in 4 weeks...nowhere near the 3 months they hope for). The step before walking is independent standing...like I tell family members, "you try to stand when you are on your tippie toes and your knees are bent".

Ben's therapists used to say that they thought independent walking at home was a goal for him. That was before spasticity reared its ugly head. Check out this old video of Ben walking with his walker...he's just over 2 years old here. His gait is pretty much perfect...so I see why they used to think that.




Now? Well, he is on his toes always...with knees bent (if the botox has worn off) and his left foot turns in horribly. And he even scissors some. And really? I think his therapist (and I) had stopped thinking about independent walking.

Of course, that's what we continue to work towards. It's why I have Ben doing PT twice a week and doing 6 weeks (plus) of Conductive Education each year.

But to be honest, I had given up hope. I had accepted but I had no hope. I really thought that the most we could hope for would be some independent stepping that would be nowhere near functional. I kept saying how pleased I was that he can do transitions so well and that he should be able to be independent as an adult that would likely choose between forearm crutches and his wheelchair as preferred methods of mobility.

What I didn't realize was was that this was making me very sad. Because I had given up on something that I had really hoped for early on.

And then, Ben's physiatrist said the words "rhizotomy" and "Ben" in the same sentence. And a teeny tiny bit of hope crept into my heart. And took root. I started doing more research. And watching youtube videos like this one of kids walking post-rhizotomy. And talking to Ben's PTs. And that hope grew.

I talked to Ellen from Stumbo Family Story whose little girl Nina had a rhizotomy just 6 weeks ago and is already knee-walking. And that hope grew even more.

I realize that we haven't even spoken to a surgeon yet and of course, (functional) independent walking may not be in Ben's future. But all of the sudden, I have hope again. And that feels awesome.