Thursday, September 30, 2010

New dreams

Bird on the Street posted this link on her Facebook page the other day. Go over there right now and check it out...then come back here...otherwise this post will make no sense to you.


I want to find the time to get my photo done with my sign and submit it, but I don't know if I'll have time (I'm actually in an airport right now on my way to Toronto for 5 days...and then I'm only home for a week before I leave again, but this time for 17 days).

I laid in bed the other night thinking about what I would tell myself the day before Ben was diagnosed with CP. I tossed a very ideas around and then came up with this one:

You will dream
new dreams
for your family.

And this one has stuck in my head all week.

I remembered back to when I was pregnant and knew I was having 2 boys. I remember dreaming of them rough-housing, playing sports together. Hanging out with their dad in the backyard...throwing the football around.

I didn't have a lot of dreams for them. But when I thought of a life with twin boys...this is what I thought of.

And then. D-day. Exactly one week after their 1st birthday, a pediatric neuroligist says to me "you know he has CP right?" And those dreams? Those simple dreams went poof. Up in smoke.

I know that dream might seem silly to some. Who cares if your kid can play sports? Lots of kids don't play sports and they're OK.

And yep, they're somewhat right. But it was MY dream. MY dream of a life with my sons.

So yeah...those dreams died. And I mourned them. For a long time.

And then eventually, I started dreaming new dreams. Even better dreams.

Dreams of Ben playing wheelchair basketball - you should see his hook shot!

Dreams of Ben skiing (yeah, with adaptive equipment) and being even faster than Daniel for once.

Dreams of Ben going off to college.

Dreams of Daniel being an awesome brother and a better human being for having had Ben as his brother.

Dreams of our family just being a family that loves, laughs and cries together.


What are your dreams for your family?

Monday, September 13, 2010

Three is just around the corner

Well...3 is just around the corner. As in the Ben and Daniel will turn 3 on Sunday. WOW. That's all I can say.

They are getting so grown up. Preschool starts this week. Unfortunately Ben won't be able to go on the first day since he has a casting appointment. So Daniel will go all by himself on Wednesday and then they'll both go on Friday.

They tried on their new backpacks and indoor sneakers this afternoon. Neither would take their new sneakers off and Daniel wore his backpack right up til bedtime. Pretty cute stuff.

To celebrate their 3rd birthday, we had pictures done on Sunday and my parent's place. Click here to see a sneak peek. I think they turned out great and can't wait to see the rest. And my favourite...well...the one of Ben on the swing. It makes my heart sing to see him this happy.

Sunday, September 12, 2010

Casting Update

Casting so far has been pretty good. He wore his first sent of casts for 5 days. We took them off the on Labour Day morning. He really didn't want me to take them off, but was OK once I was finished. He had quite a bad blister on his right foot and a small blister on his left. I was surprised to find them since he had tolerated the casts so well and hadn't complained once about them. He even slept great every night with them on.

Standing / walking with the casts went pretty well too. Here he is standing at his train table in his bare belly (he LOVES having a bare belly):

We went back in on Wednesday to have another set of casts put on. They were quite surprised that he had blisters. Apparently it's fairly uncommon to get blisters...who knew? After some discussion they decided to just do his left foot and leave the right one to heal. Ben was not impressed that he only got one boot this time!
His physiatrist took measurements of both his hamstrings and calves. At this time, I don't understand the measurement stuff as much as I'd like to. I do know that he is improving. I plan to get our Private PT to go over the measurement stuff with me this week and I'll post more on it once I understand it better.
We only kept that cast on for 2 days. I was scared that the small blister might get worse and the most change happens in the first 24 to 48 hours. Plus, having just one cast was more difficult than having two. Walking with just one was much more difficult for him since he was lopsided.
We head back in on Wednesday this week and hopefully they'll cast both feet this time.
I have to say that casting is nowhere near as bad as I thought it would be. He has tolerated it extremely well with absolutely no complaints. I do think that he's experiencing some muscle weakness. He seems to have a better gait when using his walker, but seems to tire more quickly.
Our Private PT returns this week after being away for the entire summer. I'm anxious to hear her opinion on how Ben is doing and what the Botox and Serial Casting has accomplished so far.

Wednesday, September 1, 2010

New boots

So here's my Ben with his new "boots" as he likes to call them. The day went really well and Ben was a trooper as usual. He always amazes me how well he does with stuff like this.

It took about an hour for the PT to do both casts. And he was happy to watch Dora while she worked away. It actually worked out well, because he now has red boots "just like Boots".

These are fibreglass casts. So they'll stay on until Monday and then we'll take them off ourselves. He'll have Monday night, all day Tuesday, and Tuesday night cast-free and then he'll get his next set on Wednesday. We're hoping that he won't lose too much muscle strength by having that time off in between casts. He'll probably have 3 weeks of casting.

The PT said that the most benefit occurs in the first 24 to 48 hours. So if he's complaining and we can't get him to stop, then we should take them off. So far though, he really likes them and there hasn't been any complaining at all.

He's not allowed to walk or stand on them today, but can starting tomorrow. He should be able to walk with his walker even with them on. I'm really hoping that's the case.

So was no big deal. No shots, no anesthetic, no crying. Easy-peasy. Now we just look forward to RESULTS!