Still waiting (plus some random stuff)

We're still waiting for a surgery date.  They said they would contact us in December, but it feels like FOREVER since we were at the hospital in October and I JUST WANT THE DATE ALREADY!

It's frustrating waiting for this surgery to happen.  Ben hasn't had any spasticity intervention (i.e. botox or casting) since June and he is CRAZY tight.  We continue to work on getting his quads as strong as possible before surgery, but otherwise aren't seeing any real progress at this point.  He walks very well with his quad canes but it isn't functional as he's quite slow and his endurance is pretty much non-existent.

We're also trying to come up with some sort of visitation schedule...which is hard to do without an actual surgery date.  It's such a blessing that so many people want to come and visit and help us out during Ben's surgery and rehab.  It's wonderful.  I'm beginning to wonder if I may actually complain that we've had too many visitors! 

We are gearing up for Christmas here at our house.  We're hosting the office Christmas Party this year at our house so that just gives me even more excuses to decorate like mad.  The boys are super excited about Christmas and Santa and presents.  And pretty much ask me every day is Santa come tonight.  I'm working on an advent calendar for each of them so we can start counting down to Christmas.  Hopefully that will help them understand how many days are left before Santa comes.

I don't know about you guys, but we had major issues with the time change this year.  Daniel has always been our early riser but was getting up around 6am before the time change.  Well...after the time change, that became 5am and didn't change after THREE whole weeks.  So I started looking for solutions.  And found this...the Gro Clock.  It's AMAZING!  And totally worked.  Basically the parent sets the time that he/she wants the child to get up.  During the night, the screen is blue with a sleeping star on it.  When it's time to get up, the screen changes to a yellow sun.  At first we set it for 6am.  It started working the first night.  Now we have it set for 6:30 and neither kid will get out of bed before they see that bright, yellow sun.  It was expensive though...$60!  YIKES!  But totally worth it for more sleep each morning.

I don't think I ever really posted about Ben receiving his wheelchair.  Bad me.  Well.  We FINALLY got it at the end of October.  Yep.  It took over 6 months to get his wheelchair.  Crazy.  However, he LOVES it.  LOVES it.  And we love it.  He's independent in it.  He's at the right height (and can even reach all the elevator buttons now).  I can even walk BESIDE him and talk to him like a regular 4-year-old instead of being behind him pushing him in a stroller.  Yes.  People look at us more now.  But like his walker, people can't help but smile when they see him in it.  He's just so happy!  Plus, his front 2 wheels light up when he gets going fast.

Who said this would get easier?

I thought this CP-thing was supposed to get easier?  Because lately it's been feeling a whole lot harder.  Last year, Ben was almost 3 and I thought it was hard having an-almost-3-year-old who can't walk.  That was a walk in the park compared to having an almost-4-year-old who can't walk and is starting to understand how it affects his life.

It breaks my heart to see him holding back and watching all the other kids run circles around him.  And I think it's starting to break his heart too.

Last year, he was doing so well with his walker, that I really thought that by now, he'd be using it like crazy and maybe even starting to use forearm crutches to get around...and maybe-just-maybe taking those first independent steps.

But nope.  Spasticity totally sucks and Ben struggles more this year than last year.  Often choosing a stroller or wagon over his walker. 

Last year, I had two happy little boys who really had no idea that Ben was any different.  This year, I take one little boy to soccer while the other one asks me why he doesn't have soccer cleats.

Last year, no one really noticed that I had an almost-3-year-old who crawled to get around.  This year I feel their stares and unanswered questions.

So yeah...I'm feeling the struggle a bit more lately.  I was doing so well all last winter...accepting this CP-thing.  Not crying all the time.  Actually feeling a little joyful on occasion.  I thought I was on the path to "this CP-thing isn't so bad"...but instead I feel like I'm on a detour that has somehow brought me back to those days just after diagnosis.  I'm having lots of thoughts that I thought I was done thinking.  You know the ones.   Things like "why us?"  And lots of others along that line.

I guess when people describe our special needs world as a ROLLERCOASTER, they hit the nail on the head, eh?  Now I'm just wondering when I start climbing upwards again...

Just a wee bit nervous

Ben's getting botox injections on Friday. In his hamstrings and gastrox (calf) muscles. Under general anesthetic. In an operating room.

And I'm nervous.

But he so needs it. We just spent the last 3 weeks in casts trying to stretch out his calf muscles and have barely gotten anywhere. We've basically managed to be able to get him back into his AFO's more comfortably...but that's about it.

So yeah, he needs the botox in his calves. And his hamstrings need it too. So that means ALOT of needles...and his physiatrist is just not willing to poke him that much if he's awake. So that means general anesthetic. Yuck.

So keep us in your thoughts on Friday...although by the time you are all up and about, it'll likely all be over with since we need to be at the hospital at 7am Atlantic time (that's one hour ahead of EST). He should get the botox at around 8:30 and be all done by no later than 9:30.

I'm just hoping that we see some real progress after this. He'll do 2 more weeks of casting afterwards to really stretch those calf muscles once the botox is doing it's work. And then we're off for another week of Conductive Education.

He's been making some real progress with independent standing so I'm really hoping that once he can more easily get his feet flat that we'll see more and more improvement in this area....and then, well, we start working on an independent step or 2...won't that be exciting?!?!

So that's what I hold on to...the gains that I hope we'll be able to make afterwards. And I try to stop thinking about that operating room. I try.

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.

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