Sounds like Carter is in great hands chansen. I'm glad to hear that. I'm still thinking of you all,, even though I'm posting less often these days.

Thanks Chansen.

Here's to the next phase of carter's rehab.

Home on the weekends sounds good for all.

Chansen, things sound positive there.  I wish I could see the picture in the post!

You must be looking forward to having him home on weekends so your family can spend Sundays together again.  How is all the therapy going?  Is Carter seeming more aware now that the right people are helping him through everything?

I can't see the picture, either, but your visual is duly noted :)  Rebuilding Carter is an attitude I connect with and I'm not surprised they are patient with you or your comments, chansen.  Integrity and love are so evident in your posts; I'm sure it wollops in person. 

It sounds like Carter is in the best possible place for him right now.  I couldn't see the picture but I googled Snoezelen rooms and saw a few pictures from different places; I see what you mean about it looking like a drug trip.  I really hope the cord blood infusion happens and works really well.  As always, my thoughts are with you and your family.

Good to hear Carter has settled in. Wishing you all the best, sending positive thoughts across the intertubes..

Caring thoughts continue to be with you all . . . go, Carter, go!

Chansen - it's good to hear that things seem to be going well at Bloorview! How exciting to hear that Carter will soon be going home on weekends! 

Penny - I couldn't see the image either, so I right clicked on it and copied and pasted the image url into my browser and could see it that way. It looks like a trippy therapy room that I am familiar with here in Victoria. The room I know of also has a high tech Lazy-Boy - styled massage chair in it, which is AWESOME!

Not for the first time, I'm left reflecting how fortunate Carter is in having the parents he has..........

He has just the parents  to be his advocates  - and ensure the very best hope for his recovery.

It's a long journey ahead for your family, so remember to pace yourself and gain some rest and recreation when you can.........

I'm glad to hear things are progressing. I look forward to hearing the updates.....and being able to cheer for Carter from Northern BC. 

Carter "turned" pages on an iPad today. I was told. I'm not there at the moment.

Of course, turning pages only requires a hand sweep, but it's something. He was getting quite good with the iPad before this happened, so he knows what he's doing with one.

That's cool chansen. It my not be as complicated as turning a paper page, but it is a purposeful action and that's awesome.

That's excellent news. I don't even have an iPad. I've never turned the page on one, so Carter's one step ahead of me! Hope you continue to see signs of improvement (even if they're just small ones, because eventually small things add up to something big.)

You go guy!

Big improvements today in OT. Able to move his hips and start to roll over, and increased motion in his left leg. Again, I wasn't there, but this is pretty damn impressive.

This follows a reduction in his Artane dose and increasing his Baclofen. As far as I'm concerned, so far, Baclofen is a great drug. I've heard as much.

That is very impressive!! Yay!

I'm there tonight. Can't wait to get him practicing his "new moves". This is what he does: He learns to do something, then he wants to practice it for hours. Used to drive me crazy. Now I just want to sit and watch and cheer him on.

Way to go, Carter!

Chansen, hoping you get to see some of these new skills he has.  Maybe even something brand new for you tonight!

There will probably be a lot of us sitting and cheering quietly at home tonight just thinking about it!

What wonderful achievements coming from young Carter.  He has quite a cheering section here in WC in addition to his supportive family.  Hoping to hear news of more steps on his journey as he struggles to recover from his illness.

Catching up on all this exciting news! Way to go Carter & Carter's family!!   And the great staff at Bloorview!!

Love those Snoezelen rooms - you're so right ... the hippies had it right I think!  Used to be a place in Toronto years ago (well, more like decades ago!)  called the Electric Circus - but not for kids!!  I wish the Snoezelen stuff was more affordable tho - it can be quite captivating ... and/or relaxing as you've discovered.

Snoezelen rocks (alert and awakened or calming and relaxing). A family I know bought a bubble tube because their child loved it so and responded so well.

I am so glad to hear about Carter's movements and awareness.

When Daisy was specialmom she had one for her son in their house, I believe. Try  searching.

We're right beside you, cheering Carter on......

Life seems to have a habit of changing our perspective on many things........

That's great progress in such a short time, although it must seem like forever to you and your wife Chansen.

Carter you ROCK!

I'm glad to hear that Carter is improving. 

Practicing new moves for hours is such a good sign to me, chansen.  Focus like that.....well, you can't learn it, it's inborn and will serve him well!

Huzzah for Carter! Well done little man!!!

Count me in as part of the cheering section. So good to read about Carter's happenings at Bloorview.

I'm glad the young Franklin Richards is at a top notch STAR Labs facility...who knows what secrets will be learned, what powers and abilites will be dealt, besides the already "Charm the Pants off people" and "Gobsmack dad"...

There is so much for an Omega-level mutant to learn...and teach

So what's the view like there, chansen?

Glad to hear about the IPAD and hips/rolling.

There are also lots of cause and effect apps on the IPAD. Introduced a friend's 12 year old son-with multiple disabilities to "I love fireworks" yesterday. You touch screen and /or drags across it causing visual and audio fireworks. Son, mother and grandpa all enjoyed playing it. Lite version is free!

Today not as good. He fell asleep yesterday at 4pm, and slept through to 1:00am. Consequently, and to his father's dismay, he was up most of the night, and now he's mostly asleep. Told his mom how unimpressive that is, and the next time he falls asleep in the afternoon, throw water on him after he's had a nice nap.

ooch, chansen, I didn't wake my babies when they were in sleep-mode, so I'm the wrong mamma for this conversation.  Doesn't stop me from pointing that out, obviously :)

Glad to hear all this great news about Carter!  And good to know that he's still causing trouble like any kid would by sleeping late.

It's hard work what he's facing everyday and he's such a little boy. Still growing, I know you know this. You're a good Dad sitting through all of this, even if there's no reward, that's what parents do, it's all for love.

Maybe he'll give you a big smile today.

Really good news! Yay!!! He's come a long way in a short time since being at Blorview it seems. That's great. Here's to more progress!  I'd never heard of a Snoezelen room before...sounds pretty cool.  

After all of that hard work, he deserved a good rest! I'm sure his sleep patterns will go back to normal soon enough. Hopefully he'll sleep through tonight.

Kimmio, I think the Snoezelen room is named after John Snoezelen the former Ontario Minister of Education (during the Harris government).  He was the guy who wanted to create a crisis in the education system by underfunding it to the point of bankruptcy and to reduce the power of the teachers' unions in order to privatize Ontario's public education system.  It must have been sometime after this unhappy interlude that he finagled having a whole room named after him at Bloorview.  Bloorview was no doubt just "sucking up".

On January 13, 2007, he was arrested in Milton, Ontario for the possession of an unregistered handgun. He was granted an absolute discharge in April 2008, though the judge noted that he had made a serious error in judgement.

Snoezelan (affectionately known as "The Shnoz" to his friends) is currently running to be President of the Progressive Conservative Party of Ontario.  The management at Bloorview have stated that even if he is successful they will not change the name of the Snoezelen room as "that's the way everyone thinks of it now and we like to keep things on an even keel around here".

Chansen, I'm glad to hear that Carter has shown some improvement (Snoezelan room or no Snoezelan room!)  You have to admire the little guy's fortitude.

I think the Snoezelan room is cool too.

It was John Snobelen, not Snoezelan.....

Carter must have gotten tired out from all his hard work. He'll accomplish great things when he has rested.

Ooooooooh!  Right! Snobelen! That's the guy ...  Ah well it was still fun reminiscing.

I just came across this video of the Music Therapy program at the Victoria Conservatory of Music and it happens to include two pictures of yours truly in our (miniature) version of the Snoezelen Room (we call it the multi-sensory room). Enjoy! You can see me and a child that I have worked with at both the 2:42 and 3:36 marks.

C-Fax Santas Anonymous (VCM Music Therapy) from Blaine Jeffery on Vimeo.

Wishing Carter a good day.

Chansen, just catching up on the thread.

How wonderful that he is learning how to do things.  thankful for OT's, for hospitals, for staff, for parents and for the two steps ahead...even knowing there may be days when it is one step back.

Hoping that the work continues...and your little fighter keeps figuring out new ways to move.  take care.

Chansen this is wonderful news about Carter. Just remember to look after yourself as well.

Duke finally has all the information they need. With the current rate of improvement, we could really use this cord blood treatment to give him a boost.

That's great news......

Have they given you any time-frame for when they'll know if Carter is a candidate for the cord blood treatment?

(It's a timely reminder to all perspective parents out there of the benefits of banking cord blood).

To be perfectly fair, we're a statistical anomaly. I'm glad we did it - overjoyed, actually - but those who did not do it have no reason to regret the decision. Unless their kid gets hit with something treatable with cord blood. The chances are low. We just won the lottery, is all.