Walker transformation

Ben's first walker that we actually purchased ourselves was the Gator (pictured below).  It is a fairly large and heavy walker.  We initially chose it because it works better outside than other walkers we had tried.  (In the end, we ended up also purchasing a Nimbo as his "indoor" walker...mainly due to the messiness of Canadian winters.)

 

Well.  Ben LOVED his Gator.  LOVED it.  But...he has now outgrown it.

 

 

 

There is not a bigger Gator.  The next one up is actually the Crocodile.  And it only comes in Yellow.  Not Red.  And Red is Ben's colour.  He wants EVERYTHING to be red.

 

Regardless, he needed a bigger "outdoor" walker.  So we went ahead and bought the yellow crocodile (used) from his CE Classmate "Sarah".  And he absolutely refused to use it.  REFUSED.  Wouldn't even try it out.  Unless I painted it red.

 

So.  Off I went to the hardware store to find some red spray paint.  Painting it is actually the easy part...it's NOT painting the other parts of it that was the hard part.  Plus I had to remove all the stickers that Sarah had put on it.  It probably took me 2 hours to remove the stickers and then tape up the sections that weren't to be painted.  And about 3 minutes to paint it.

I did 2 coats and then let it dry over night....and then spent probably another hour taking all the tape off.  But doesn't it look awesome?

 

 

And the most important part?  Ben LOVES it.  And very happily goes everywhere with it.  It's now "him".

 

 

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.

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.

The Wheelchair Decision

And by decision, I don't mean WHICH wheelchair would be best for Ben. I mean making the decision to GET a wheelchair for Ben.

I've been getting quite a lot of questions about the decision to get Ben a wheelchair. The most popular question has been something along the lines of "Ben is only 3.5 years old. And he's so mobile and uses his walker so well...so why does he NEED a wheelchair?". The 2nd most popular question is something more like "HOW can you be so OK with your son getting a wheelchair?".

I'm going to try and answer these questions the best I can. You may be in for a long read!

I've posted a link to this post by Katy about the wheelchair issue before. But here it is again. I first read it right after she posted it...so September 2009. Ben was just 2 years old and we were just one year past diagnosis. I don't think I'd even thought about the wheelchair issue before this post. And even though Katy is fantastic and I love her posts, it wasn't HER words that got me thinking. It was the 2nd commenter. Becca. An adult wheelchair user. She really got me thinking.

The more I thought about it, the more I agreed with her. Basically, her opinion is that is someone's PEERS would be walking, then if the kid was unable to walk on his/her own, then said kid should be in a wheelchair. NOT a stroller. And for some reason, this made total sense to me. I started paying attention. You see, it's pretty easy for me to know what Ben's peers are doing...he has a twin. A typically-developing twin. Every time after this post that I put Ben in a stroller with Daniel walking alongside me, I cringed. I truly did.

A few months after having my eyes opened, I asked Ben's physiatrist about getting him a wheelchair. He was just 2 years (adjusted) at that point. She thought it was too soon. She really wanted him to get better with his walker before he started using a wheelchair. Since he was so young, I left it at that.

About a month after that appointment, he started using his walker ALOT. We started making trips to the mall when it wasn't busy so he could practice. By the summer, he was really moving with it. I was glad we had waited. I'm not sure what the research (if there is any) shows about whether having a wheelchair demotivates a child with CP from learning to walk, but I was glad that we had pushed the walker as much as we had and he had gotten so good with it.

Fast forward til about a month ago. I didn't even know that I was thinking about a wheelchair until I asked one of his PT's about it. The words just kind of slipped out. I think that over the last 18 months or so, I had been thinking about it sub-consciously alot. Ben LOVES basketball. And he's actually pretty coordinated and has a good shot. I remember last year when the paralympics were going on...I thought alot about sports that Ben could play....adaptive skiing, horseback riding, sledge hockey...and of course, wheelchair basketball.

I don't know if you guys realize it, but it's pretty damn impossible to play basketball with a walker.

So I put the question out there last month and an OT came to chat with us about wheelchairs for Ben and how the process worked. And Ben tried out a wheelchair for the first time. I posted about that experience here.

We talked about whether Ben NEEDS a wheelchair. I guess in a way he doesn't NEED one. I could still opt to put him in a stroller if I wanted to. But I don't. So that's where the wheelchair comes in. To many of you, I'm sure Ben seems very mobile. And he is. In a way. Yes, he's great with his walker. But he tires easily. So whenever we go somewhere, if we bring his walker, we bring a stroller too. For when he gets tired.

And yes, they tell us that Ben will walk someday. Probably by the time he's 6 or so. But even then, is he going to be able to handle long distances? Unlikely. And if his class makes a trip to the zoo, I don't want him in a stroller...being pushed by a teacher. I want him in his wheelchair. Independent. And in control.

It takes a while to get a wheelchair. We're waiting to see the experts at the Seating Clinic in order to use their expertise to pick the best chair for Ben. Since Ben is so good with his upper body and can sit well, we're definitely going with a manual chair. But that's pretty much all I know at this point. I'm not sure how long the wait is to get into this clinic...pretty long I think. I'd love to have one now (now that he's tried a couple out and I see how much he loves them), but the initial goal was to have one by next year this time so that he could be proficient with it by the time he starts kindergarten in the fall of 2012.

And just because he's getting a wheelchair doesn't mean that we're going to stop working on walking. No way.

I don't think "wheelchair vs. walking" is the real decision here. For us the decision, is "wheelchair vs. stroller" and for me, that choice is obvious. Be pushed around by Mommy in the stroller OR be independent and in control in a wheelchair?

The wheelchair wins every time.

Happy Boxing Day!!

Happy Boxing Day everyone! I hope you all had a wonderful Christmas with your families. We certainly did. I wanted to share this photo with all of you. Ben has gotten more and more agile with his walker over the last few months. He likes to "jump" where he lifts his feet off the floor by using his arms on the walker. Well...this has now escalated to him lifting himself up onto his walker so that he can now sit on the back of it. He figured this out at our annual Christmas Eve party with my cousin Scott egging him on. And then of course, my cousin would push him around while he was sitting on the back of it. It was truly fantastic! All of Ben's cousins wanted a walker too so they could be as cool as Ben.

It was truly a magical night. It was the first time that most of my extended family saw Ben as a true 3-year-old...upright and walking. Instead of sitting and crawling. It was really crowded and he wasn't able to use his walker the whole evening but for the parts of it when he could, it really paid off.

We are awaiting a major snowstorn here in New Brunswick, Canada...supposed to arrive overnight. Lots of the white stuff (yeah!) and wind too. So we won't be going anywhere tomorrow....so more time playing with all our new toys that we got from Santa.

If the weather if affecting any of you out there, please don't go out on those roads. Stay home with your families where it's safe.

Happy Boxing Day!

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!

Videos from Florida

Hi all. We're back safe and sound from our big Florida vacation. It was actually WAY better than I even imagined. I managed to get over the negative feelings from early on and we all had a fantastic time. I want to write a complete post about our Holiday, but for now I thought I'd upload a couple of videos of the boys jumping into the pool...their new favourite thing to do! As you can see, Ben preferred to keep his mouth WIDE open when jumping in. No matter how many times we told him to close his mouth, he'd just open it up even wider!

And here's a video of Ben at the Fort Myers airport as we waited for our flight (2-hour delay). I couldn't believe what he could do! To me, this video just shows how motivating Daniel is for Ben.

Happy Belated Easter

Happy Easter everyone! I hope you all had a great weekend with your families. We had a perfect weekend. Perfect weather, happy children, family get-togethers, and lots of good food. What else could we ask for?

On Saturday afternoon, we had our big family get-together and Easter dinner. My Dad purposely had his tractor out of the barn so the boys could look at it. Well, they weren't contect to just look at it. They had to "drive" it.


On Sunday afternoon (after filling our bellies with my Mom's huge breakfast), we headed out to enjoy the crazy warm temperatures. We went for a nice walk along the boardwalk / trail across the river and then hung out on the boardwalk for a while. Here the boys are just checkin' out the water and all the birdies.

This was a perfect area for both boys to play. Nice and flat for Ben and lots of things to keep them entertained. I love this pic of Ben chasing after Daniel. It warms my heart.

Daniel insisted on wearing his hat "backsards". What a punk! But he's pretty cute.

I forced the camera on my husband so I would have at least a few pics with me in them. Here's Ben and I enjoying ourselves.

I love the focus on this shot with Ben being in focus and Daniel not. What cute boys I have!

Their favourite thing to do was to throw rocks into the river. They would run back and forth to pick up rocks and then throw them in to hear the "splash". Here Daniel is winding up to throw.

Ben did simply awesome with his walker. We've now unlocked one of the backwheels and he's figured out how to back up and turn around once he's stuck! That definitely makes it much easier on us and gives him much more freedom and independence.

All in all a great weekend! Hopefully many more to come since Spring is here!

Best. Paediatrician Appointment. Ever.

The boys had an appointment with their paediatrician this morning. And I was dreading it. Although their pedi is very thorough, he is slightly over-concerned and this drives me a little bit crazy. There have been times where their appointments have taken up to 2 hours!

Here is a recap of their appointments (boys are now 29 months old):

• Daniel completely cooperated and for the first time was weighed on the adult scale and stood for his height (instead of lying down for his length).
• Daniel now weighs 26 lbs! And is 89 cm's tall. 26 lbs is just amazing for Daniel. He jumped from the 3rd to the 10th percentile in weight! The pedi has always been concerned about his weight but he was thrilled with him today.
• Ben was a rockstar and "walked" in on his own in his walker. The pedi had never seen him in his walker and was totally impressed.
• Both boys were total superstars and cooperative during their examinations.
• Ben now weighs 28.6 lbs and is 89 cm's long. Needless to say, Ben is still weighed on the baby scale and lays down for a length measurement.
• I talked to the pedi about Ben doing hippotherapy starting in May and Ben's potential allergy to horses. We now have a plan to deal with this so hopefully it'll all be fine.

I think those are the main highlights of the trip. I was so proud of my boys!

Our Day in Photos - A walk at the mall

Some Sunday mornings, we take the boys to the mall for a walk. The shops themselves don't open until noon but the doors are open starting at 9am for those that want to walk. Usually that's mostly elderly people, but there are some families there with small children...mostly just letting their kids burn off steam in the middle of winter.

Plus, it's a great opportunity to let Ben use his walker! Check out how happy he is to get going.

















Since Daniel doesn't have a walker (he'd love to have one though), he pushes the stroller around (we need somewhere to store the diaper bag and coats, mitts, hats, etc. Here he is looking for the bikes at Toys R Us. Sadly, no bikes were out this week.









Ben loved the letters in this "GARAGE" sign. He kept yelling "A for Alligator". We've been working on the alphabet lately and they are both doing awesome. I'd guess they each know about half the alphabet. We've attached words of meaning to each letter so they love learning them (and finding them when we're out). For example: D is for Daniel, B is for Ben, M is for Mommy, L is for Lucy (their cousin), S is for soother (they LOVE their pacifiers or soothers as we call them), Z is for zebra...and their favourite: W is for Walrus!!!


Daniel has to check everything out. Like this hinge on this door...apparently it's quite fascinating.












He also loves to 'hide' in small spaces. He loved this little nook in the wall. Unfortunately Ben couldn't fit in his walker.

















After our walk, it's time for a snack. So we head to the foodcourt. Daniel loves to get the highchairs. We take off the tray tables and pull them right up to the table with us. They had carrot muffins, goldfish crackers and water.









After Daddy got his coffee from Tim Horton's (it opens at 10am - woohoo!), he joined us at the table. Ben was happy to see him.











In this photo, you can see Ben playing Peek-a-boo from behind his cup. Don't you love that smile?











Another great smile, this time from Daniel. I had to force the camera onto my husband for this one...otherwise there would be NO pictures of me EVER.










This is just the boys being silly together. Daniel was trying to kiss Ben but Ben wanted none of it. I love how they interact together.

All in all, it was a great morning (except for the meltdown when Ben couldn't "push the stroller" like Daniel). Then it was time to go home.

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?

Cruisin' the mall

Ben's been using his walker for about 2 months now. So far, he's only used it at someone's house (ours, my mom's, my brother's). He's gotten pretty good with it even though it's mostly used as a toy and not at all for transportation.

I've been itching to take it to the mall and see how he'd do with it. But he only really learned how to use it proficiently towards the end of November and the malls were crazy with Christmas shoppers.

We finally went this afternoon. He did AWESOME! He was so excited to go to the mall with his walker. He walked almost the ENTIRE mall. I kept asking if he wanted to go in the stroller and he would yell "NO". Even though he was tripping over his own feet, it was still a fight to actually get him away from the walker and into the stroller.

And he was totally the centre of attention. Everyone was looking at him...and in a good way. Everyone was smiling at him and a few people even asked why he needed the walker. I love to get questions about him. I love showing people what CP looks like. So...in case you're wondering...here's what CP looks like.

P.S. In case you were wondering, my typically-developing child preferred to stay in the stroller. He didn't walk at all!

More bragging...

Sorry about this, but I must brag again today. Ben is now able to use his walker BY HIMSELF. He does still need help steering it but we no longer have to hold onto him to make sure he doesn't fall. Check out this video (and don't mind the annoying woman's voice in the background...that's just me being a super proud mommy!).

Being the "downer"

I feel like I'm always the "downer" these days. Here's a couple of examples of some recent conversations I've had about Ben:

Example 1
Background: A couple of weeks ago, we took the boys to this awesome playgroup. Every Wednesday morning, about 70 kids (with moms or dads or caregivers) show up at a local church gym for a really great time. The gym is set up with all different stations for the different ages (baby, toddler, pre-schooler). There are crafts, games, play-doh, puzzles, a train set, etc. This was our first time going.

Friend: How did you enjoy the Playgroup?
Me: It's fantastic for the boys, but for me absolutely exhausting. It's so hard carrying Ben around to all the different stages. There are so many kids, it's just not possible to let him army-crawl around. Plus, if it's a station where they have to stand up, I have to help support him so he doesn't fall. He just loved the trainset but it just about killed my back! Plus, he gets so frustrated that he can't just go and do what he wants.
Friend: Yeah, but when does he get his walker? That'll make it so much easier for you.
Me: Not really. This place is really too crowded plus I'd be scared that he'd get knocked over by another kid not paying attention. Plus, he's a long way from being competent in his walker.
Friend: Oh? I thought he did awesome in that video you posted a few weeks back.
Me: Well, that wasn't his walker. That was just the gait trainer. He's all harnessed in that and just has to move his legs to move. He's got a lot of work to do before he's ready for his walker.
Friend: Oh. (not sure what to say next)

Example 2
Background: Ben is working hard on learning to crawl on all fours. All day long he pulls up onto all fours so that he can reach up to something and then pull himself to kneel or stand. When doing this, he will "walk" his knees forward once he's holding on to the item in question (i.e. chair, crib rail, etc.) This morning he was trying to pull up to kneel on my mom's leg (she was sitting on the floor). Before he got his hands on her, she moved away a little bit. So he crawled on all fours to get to her. So she moved away a bit again. He continued to crawl. In the end, he probably crawled about 3 or 4 ft that way. So hopefully he's very close to crawling properly.

My mom: WOW! That's awesome Ben! I can't believe you're crawling! And you can now pull to stand too! Before you know it, you'll be cruising around furniture!
Me: Well, it'll probably be quite awhile before he'll be able to cruise around furniture.
My mom: Yeah, but it took him no time to learn to crawl like that.
Me: Well, he's been getting up on all fours for about 3 months now...so no, it wasn't "no time". I feel like he's been teasing me with it for ages now. That's how it always is with Ben. Things that take "normal" kids a week or a month to master, take Ben 3 to 6 to 9 months to master. And as for cruising around furniture, we'll be lucky if he can do that in a year's time.
My mom: Oh.

I am so sick of being the downer all the time. I feel like everyone else gets to be all excited and thrilled about Ben's progress and when they do, I crush them with the reality of the situation. But sometimes I just want to know what our reality is. I feel like so many of my friends and family try to minimize the crappiness (nice word eh?) of our situation. It's like they really can't handle knowing how bad it is for us. Or just how hard it is physically with Ben these days now that he's 20 months old and not able to walk. Sometimes I wonder why I insist on doing this. Is it at all helpful to them or me?

Anyone else feel this way?