Monday, May 30, 2011

Video - ONE CANE!!!!!

Here's a video of Ben "somewhat" walking with one cane. I am still in shock that he is at all ready to do this! He's a bit cranky in this video, but this video WAS taken at the end of a 2-hour Conductive Education session so that's to be expected.

I have to say that I LOVE Conductive Education. They just push him so hard. I never think he's ready to move to the next step, but they just keep on pushing. And he just keeps on working and progressing.

Yesterday, I cried. Twice.

I had one of those days yesterday. For the most part, I am a very upbeat and positive person. Most of the time, I can be OK with this whole CP-thing. Most of the time, I can see all the positives. All the things he CAN do. And not focus on what he CAN'T do.

But sometimes, I fail at at that. Like yesterday. I gave in to all the negatives. All the CAN'TS. And I cried. Once for just a few seconds until I could get myself under control. And once last night, for a very long time. Last night I cried huge, wrenching sobs. Tears streamed down my face. My eyes got all red and puffy. And I yelled and screamed about how much I hate what CP has done to Ben. To us.

I said things and thought things that I haven't said or thought in a very long time. Why did this happen to Ben? It's so unfair. I just want him to be able to play on a playground on his own. Why does this have to be so hard? Why can't I have twin boys that run, jump and climb together? I fucking hate what CP has done to our family. I am so sick of my whole life revolving around spasticity. And on, and on, and on.

It was awful. A really horrible night.

But today is a new day. And I am back to being me. The happy, positive me. And of course, I can never feel that horrible when I'm watching my Ben play. He's an amazing boy who is making fantastic progress.

Tuesday, May 24, 2011

One cane

We're back in Halifax for another week of Conductive Education with Ben's lovely classmate, "Sarah". I posted a while back, Ben can now walk on his own with 2 quad canes. He's not super at it, but can do it without any help...and can even get down on his own.

This session of Conductive Ed is different that what we've previously done as the Conductive Educator has an assistant now. So instead of us moms staying and helping out with the session, we actually left Ben and Sarah there for their 2 hour "class". What a nice break!

We arrived back with about 10 minutes left in the class...and I just couldn't believe my eyes...BEN WAS WALKING WITH ONLY ONE CANE!!!! Yes, he was slow. And yes, he needed lots of help...but he WAS doing it.

So...I just need to remember my camera tomorrow and hopefully I'll catch it on video for you all to see.

Thursday, May 19, 2011

SDR in our future?

Ben had his 3-month botox follow-up with his physiatrist today. We've done botox twice now (mainly in his hamstrings). Botox has pretty much immediate effect for him, but unfortunately in tthe 2 times we've done it, the effects have only lasted about 4-6 weeks...nowhere near the 90 days we'd like to see.

So...Ben was nice and tight again today when she saw him. I, of course, was not surprised as we've been dealing with his tightness since about early April.

I WAS surprised by the discussion we ended up having. You see, Ben's physiatrist is extremely conservative. We've known this since the get-go and had planned to see some other experts early in 2012 to get additional opinions on what the best course of action would be for Ben. Basically, there are 2 options: continue rounds of botox followed by serial casting in an effort to delay any surgery for as long as possible OR do some sort of surgery now (like a selective dorsal rhizotomy) due to his extreme tightness., she actually stated that Ben is an excellent candidate for an SDR. She is going to refer him to another team at a children's hospital to see what their opinion is, but she's really thinking that an SDR would be a great option for Ben.

I couldn't believe it. I think my husband and I are a bit on the aggressive-side and to hear these words from a CONSERVATIVE doctor pretty much convinced me that an SDR is in Ben's future....likely in January 2012.

I am scared-to-death and excited-beyond-measure all at the same time tonight. I feel like we've just been spinning our wheels for the last year and now I feel like maybe there's a light at the end our tunnel.

Let the research begin!

(For information on Selective Dorsal Rhizotomies, check out this page from Gillette Children's Hospital.)

Saturday, May 14, 2011

Too excited not to share...

The Mobo Mini bike is now available to purchase!!! I ordered a red one for Ben on Friday and cannot wait for it to arrive. I just know that it's the PERFECT bike for him.

Now...if only the weather would improve so we could actually go outside...

Friday, May 13, 2011

Family vacation

As I said in my last (very quick) post, we just had a WONDERFUL family holiday in Fort Myers Beach, Florida. We went to the exact same resort that we went to last year and had even more fun. It was truly the perfect holiday.

Last year, I had a bit of a rough time on this holiday... you can read about that here. But I didn't have ANY of those feelings this year. This year, I just enjoyed it. I enjoyed the kids. I enjoyed their 3-and-a-half-year-oldness. We plan to go again next year and it'll be a completely different holiday again...when they're another whole year older.

I actually met a family there. A girl named Lauren (aged 20) and her parents. Lauren has CP. And instead of being shy and not saying anything, I took the opportunity when it arose to talk to the Mom and then got to talk to Lauren and her dad as well. Lauren's CP is more involved than Ben's. Her arms and legs are all affected. She is very intelligent though (she's a sophomore in college)! It was so great to talk to this family. It was so inspiring!

So here are a few photos of our trip. We can't wait to go again next year.

Ben watching the waves

Sorry Daniel...but Mommy couldn't resist taking this one!

Daniel in the splash pool

Ben wiping the water from his eyes

Daddy and Ben

A rare family photo - on a dolphin cruise

Funny-face time!

Love this one of the boys

We had the boat to ourselves so Ben could crawl around as he liked

Daniel - What a natural!

Ben loved waving at the other boats we saw


We had lots of fun in the pool

One last family photo - our last night there

Tuesday, May 10, 2011


Hey guys...sorry for not posting in almost a month now. Life got absolutely crazy...what I call "foolish crazy". Now it's calmed down as we're on our annual family holiday in Fort Myers Beach, Florida. LOVE, LOVE, LOVE this place.

I really don't want to spend the time writing a long blog this family photo of us with our "funny faces" on will have to do for now.

I promise I'll blog more soon!