Wednesday, March 30, 2011

It's going to be all right

Lisa from "Welcome to Elijahland" just posted a letter she wrote to her younger self. And it says basically all the I've been feeling about our journey with CP lately. Go check it out. What would a letter to your younger self say?

Sunday, March 27, 2011


It is Sunday evening. The boys are in bed. And I am sitting her reflecting on our weekend. A weekend filled with normal. Sometimes I really try not to use the word normal. Instead I try to use the word typical. But tonight, typical just doesn't cut it. Tonight, I'm grateful for how much normal our family has.

Yes, sometimes our life is filled with stuff that isn't normal. Appointments (so many appointments), walkers, canes, wheelchairs, botox, casts, MRI's, pediatric neurologists, physiatrists, and on and on.

But sometimes, our life is just normal. Like this weekend.

Ben and Daniel spent the night at my parents house so we could clean out the basement.

Saturday afternoon was spent chasing TWO little boys around Costco with dinner out a local family restaurant...with TWO boys who insist on always having "a cheeseburger, french fries, ketchup and apple juice".

Sunday morning consisted of cereal in front of the television, much cartoon-watching, and a trip with Daddy to the "car shower". Two little boys returned home to proclaim that "they weren't scared and they didn't cry this time."

It was then naptime...for all of us. And then we wore ourselves out with fort-building, hide-n-go seek, and watching monster truck crashes on Youtube.

And supper...well pancakes and bacon of course (chocolate chip pancakes for Daniel!).

So tonight, I'm grateful. Grateful for how much normal we have.

(Ben and Daniel watching monster trucks on Youtube.)

Wednesday, March 23, 2011

Another addition to our club

Have you guys met Tracey of The Trousdell Five? We "met" last July when she found my blog and then reached out to me via email to really connect. She also has twin boys, Nolan and Asher. On Monday Tracey joined our club when Asher was diagnosed with CP.

It wasn't a surprise to Tracey as it had long been suspected. But Monday was THE DAY for them.

I am in awe of this woman. If you want to see why, then check out this blog post that she did on Monday night. And if you're not convinced then check out this one that she wrote today.

So go and have a read and leave her a comment to show her how awesome this bloggy world that we find ourselves in really is. She's going to need us.

Monday, March 21, 2011

CP Awareness - Guest Post

Cheryl over at The Beautiful Side of Hectic has been doing interviews with Moms of children with CP for the last week or so for CP Awareness Month. I was honoured to be asked to participate and my guest post is now up on her blog. Go over and have a look when you get a chance...and read the other guest posts too.

Thanks Cheryl for including me!!

Saturday, March 19, 2011

Another Ben

For some strange reason, I decided to type in "Ben Cerebral Palsy" into Google to see what would come up. I was assuming I'd come across some of my blog posts, but instead came across this amazing video of another Ben who has CP. You need to go check it out. Oh, and make sure you grab the kleenex box before clicking "play".

Wednesday, March 9, 2011

Spring time = bike time

For the last 2 years, both Ben and Daniel have used the Smart Trike 3-in-1. It was the perfect trike for both of them. All we needed to do was add some velcro straps to Ben's pedals so his feet would stay on the pedals and it was perfect.
But....they are now too big for these awesome trikes...and I am passing them along to a friend who has twin boys (one with CP).
So we've been struggling with trying to figure out what to do for this year. We'll likely get Daniel a regular bike with training wheels. He's actually a bit clumsy and uncoordinated, but I hope he'll be able to handle a real bike.
We were thinking of getting Ben a bigger trike and then adapting it. My cousin's husband is awesome at projects like this so we figured he could help us.
We also found this website that sells extra big training wheels. And thought about buying Ben a real bike and adapting it with these training wheels. We are even thinking of getting these for Daniel.
I then looked into the bike that E has over at A Life Less Ordinary. But I concluded that it would be too big for Ben this year.
And then, I stumbled across the Mobo Mini. It's the same company as the bike that E has, but they've changed their name. And the Mini is for 2 to 5 year olds. And I'm in LOVE. I want one NOW. But I don't think it's available yet. I even emailed the company to find out when it would be available. But they haven't gotten back to me. But this is what I want for Ben. It LOOKS PERFECT.
So I guess we wait. I so hope we can get this for Ben. We live on a court and I can just see the boys out there driving their new bikes this Spring.
I'll keep you posted!

Thursday, March 3, 2011

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 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 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.

Wednesday, March 2, 2011

Wheelchair Fun

Ben got to try out another wheelchair today. I really know nothing about it except that it is a Zippie...and he loved it. It took him about 5 seconds to figure out how it worked. Check the concentration in the photo below. (By the way, this one is one-size too big for him...that's why he has the block under his feet.)

After a trip down the hallway all by himself, including turning and going backwards, he decided it's even more fun to use it to play basketball!

And here's a video I took of him as he figured out how to use it...