Tuesday, January 25, 2011

Spasticity Management

Ben is in another set of red casts. His gastrox (calf muscle) is really tight again and I felt another round of serial casting was necessary. Luckily, I have access to some really great people and managed to get him scheduled for casting within just 7 days of my first call. Amazing!

But...the more serious issue is that he is SUPER TIGHT again. And I mean tight. The PT who did his casts today couldn't believe how tight he was. (She only sees him when we do some sort of spasticity management, she's not his regular PT.)

We're scheduled to have a conference call with his physiatrist in a couple of weeks to discuss our options for dealing with Ben's spasticity. So in light of that call, I'm trying to learn as much as I can about the different methods used to manage spasticity. I asked the PT today for a head's up on what I should be looking into.

So far, to manage Ben's spasticity, we've been doing stretching, botox and serial casting. Basically, the minimally invasive stuff. In the hopes of managing it well enough to put off surgery as long as we can. But, that doesn't seem to be working too well.

So, his PT suggested that I read up on baclofen pumps and selective dorsal rhizotomies ("SDR"). Wasn't quite expecting that today!

That doesn't mean that I haven't thought about these options, I just wasn't expecting to hear that from the PT today. The Centre that currently manages Ben's spasticity is considered to be quite conservative. So it was a bit shocking to hear SDR come out of her mouth.

I've been thinking about SDR's alot lately. Ben is a prime candidate for one (i.e. mostly affected in the legs and both legs equally-affected). But I'm scared to death of the rehab after. Ben is not the most cooperative kid in PT. Right now, we're pretty much doing whatever he wants at a PT session in order to keep him as happy as possible. I can't imagine having to do many PT sessions a week.

Anyways...the PT told me to check out Gillette's website for more information about spasticity management so I did. If you're dealing with spastic CP, you should too. It's quite an interesting read. Here's the link.

I'd love to hear from any of you that are dealing with (or have dealt with) this. To me, the parents are the true experts...especially the ones that have "been there, done that". You can either leave a comment here, or send me an email at aboutthesmallstuff at hotmail dot com

Friday, January 21, 2011

My Conductive Education Guest Post

Janet over at Painting for Hailey is doing a series on Conductive Education. I am her first guest poster...so go over and check it out when you get a chance.

Monday, January 10, 2011

Sliding fun

I've been suffering from a bit of Mommy-guilt lately. You know the guilt that you're not doing everything you should for your kids? One such thing that has been causing this guilt is that my kids don't do a lot of the "typical" kid things. Like playing outside in the snow.

Mostly this is because it's so freakin' difficult for Ben to play in the snow (not difficult for him...he loves it...difficult for us). But another reason is that I really don't like playing out in the snow. I kind of an indoor girl. And my husband really isn't all that outdoorsy either, unfortunately.

However, we built an awesome huge deck last summer and it's turned out to be a great place to play in the snow. Over the holidays, we had a few snowstorms and I would just bundle the kids up and send them out on it while hubby was shovelling it off. He bought them a few kid-size shovels and they were in snow-heaven. And it wasn't even all that difficult for us. Ben really didn't mind crawling around out there. It's so nice and flat on the deck that it works pretty well for him.

Then the idea came to use the ramp off the back as a hill for sliding. So off the nanny went to get a sled and away they went. I will give all credit to this afternoon's sliding fun to her since she was the one doing all the work...carrying Ben up to the top each time.

Here's Daniel going down the ramp:

And here's Ben - I can't believe that he chooses to go on his knees..but he loves it!

And here's Ben after he fell off!

Isn't that smile just awesome??

Sunday, January 9, 2011

Special Needs Sunday - Guest Post

I'm a guest poster over at The Beautiful Side of Hectic today! Go check it out.

Saturday, January 8, 2011

Conductive Education - I'm a believer...

So. We just finished our 3rd session of Conductive Education ("CE"). I am a total believer now. Total believer. Ben was simply amazing. He did so many new things and just amazed me everyday. And I can't wait til we go again in March...this time hopefully for 2 weeks.

I am going to do a guest post for Janet at Painting for Hailey explaining more about CE, the centre that we use and other details...but for now I wanted to at least brag about how awesome Ben is!

As I said, this was our 3rd session, I blogged about our first session here. I blogged about our 2nd session here and here.

For the 2nd time, we did a session with a classmate named "Sarah". It is truly a great experience for both Ben and ME to be around another child (and Mom) with CP.

And this time...instead of staying in a hotel, we stayed with Sarah and her Mom at their vacation house just an hour outside of Halifax (where the CE centre is). Sarah's mom had extended the invitation for us to stay with them when we met them at the last session and I was a bit nervous, but decided to go for it. It would save us ALOT of money plus it would be great for Ben and maybe even great for me.

It turned out so much better than I could have imagined. Sarah and Ben are great friends and got to know each other even better. Sarah's mom and I completely connected. We have a TON in common...besides the fact that we both have a child with CP, we both have lived in multiple countries, love to travel and....best of all....have a mutual passion for really good red wine.

We spent every night sharing a bottle of wine and stories...either about our life or about our kids. It was awesome.

So...back to CE. Here is a photo of Ben practing walking with canes. He continues to improve with this and can almost do it independently...well, he can do it independently for a few steps but then loses his balance.

Here are Ben and Sarah working on balance by throwing beanbags while trying to keep their feet flat. Ben loved it!

And here's my favourite photo from the week. Here you can see Ben standing ON HIS OWN!!!! It is only for a second or two, but this simply amazes me.

So yeah...I'm a believer. A believer in CE and we can't wait to go back. March can't come soon enough.

Wednesday, January 5, 2011

Loving this life

Just read this awesome post over at Hopeful Parents.

And had to share it with you in case you missed it.

My favourite line..."threw away the old recipe for happiness and wrote my own..."

Are you loving THIS life?