We had a neurosurgery appointment yesterday. And I had been worried that Nick wasn't near to taking independent steps again. One of the signs of loss of function and the reason we did the spinal surgery last June.
Nick and I had tried doing the steps over the last month or so. Just like in the video, and so we watched the video together. But I couldn't get him to stop and just take little steps. He would just want to start and keep going.
On Monday we went to visit my work and go to a couple of meetings (March Break fun), and when we were walking back to the car Nick just started walking with his crutches and as I watched he just started to do this...
Over and over and over.
He liked doing it more than with his crutches down!
I know that this isn't the same as having the control to start and stop, but it is an incredible step!
The video I have above is actually 2 clips together. Well, the first video is cut off.
This is the whole first video, Nick thought it was hilarious and kept laughing at the video. Katheryn said it should be posted on Fail Army or Funniest Home Videos
I don't think it is that funny, but he bounced right back up!
We did have our neurosurgery appointment yesterday and got the all clear for another 6 months (earlier as needed of course).
I did mention that at the bottom of Nick's cyst scar is a bump. I think that it was normal (and when we saw orthopedics, he said he thought it was normal as well). But I wanted the all-clear from Dr Rutka. And I got it. He said it wasn't anything to be concerned about.
I also mentioned that Nick's eyes will sometimes twitch. But it didn't affect his vision, that I could tell. But we were having difficulty seeing the ophthalmologist at Holland-Bloorview, and were about 9 months past our recommended appointment time.
So Dr Rutka said he would put in a request for Nick for the Sick Kids ophthalmologist.
Nick wanted to walk to the bus stop today with his backpack
He did it the whole way to Katheryn's bus stop.
He is getting stronger with his crutches.
I don't think he is as strong/stable as he was when he took his first steps. But that is something we are working on. A part of me thinks he might never be able to do this again. I had hoped after the surgery we would be back to that point quickly. But we aren't.
And if he doesn't get back to taking independent steps it will make me sad, but it isn't the end of the world. He is stronger with his crutches. Especially with the higher braces on (which I don't hate as much as I used to). And on the weekends we take the tops of his braces and he is still able to walk with his crutches, but he is a little floppier.
Oops, I just hijacked a post about walking to school...
Last week while we were waiting for Katheryn's bus Nick wanted to get out of his chair and practice standing. When the bus pulled up I could hear a lot of the kids in the bus cheering for Nick (a bunch of kids in his class are on Katheryn's bus). And Katheryn got off and yelled "He does that at home!"
Nick was so proud of himself.
And if that is what he wants to do, then go for it boy!
Today he wanted to walk and run to the bus. So he did.
Yesterday coming home he wanted to be in his chair and his crutches.
I thought it was weird, but whatever. But then I realized that Katheryn and Nick were playing sledge hockey, and Nick was pushing himself in his 'sledge' while Katheryn was the coach
They went the whole way from Jenn's to our house like that.
Now it just needs to translate on the ice!
That is what he wants to use to move around. More than any other piece of equipment we have. The crutches (the ones that I fought for when I was told they wouldn't be an option, the ones I bought in 2013 because I couldn't get PT to say we could use them.) And 2 years ago, when we just started using them (the link also bring a little trip down memory lane for physiotherapy)
I look back at 1 year ago and see how much he has improved with is crutches!
Nick uses his crutches most of the time in school (except for gym and recess). And in the house. Even when we are grocery shopping or at Walmart, he wants his crutches.
But now after Nick gets off the bus at school, and wants to walk home!
He does get tired after a bit, but he wants to do it!
When we were at Toronto Island I wanted to challenge Nick and see what he would do if I took off the 'K' from his KAFOs. And then of course he decided to challenge himself further by walking over cobblestones
My thought was since the testing and surgery came from needing more bracing, now that he has had the surgery and is/has recovered so well, we should see what he can do with less support.
When we got home I took a video of him on some stable ground to see how he is.
His knees are more wobbling. But they have been supported for a year.
But he is able to do it.
And it is a balance between bracing him too much and compromising muscles getting stronger, and not bracing enough and causing injury or incorrect (cheating) form. What we want is enough support to allow him to be functional and not waste his energy and strength.
It is Easter weekend! Which meant we got to visit a lot of family and look for a lot of Easter Eggs!
The kids got some giant crackers that they got to open before dinner
Nick did all of his Easter egg hunting with his crutches. Which gave him lots of flexibility in small spaces.
With the difference in ages and abilities we have been hiding 4 eggs in each place. This means that the super-fast girls don't collect all of the eggs before the boys get a chance.
Afterwards everyone went through their eggs.
The next day we went to Grandma and Papa Bartley's house. Nick walked the whole way there!
And on Sunday morning we had lots of time for relaxing and looking at the what the Easter Bunny brought
Umm. When did he get so tall!
It was a fun Easter, with lots of family and lots of smiles!
Nickolas has been doing great with his walking. He wants to practice at least every day doing some independent stepping. We still need to remind him to get his balance in between steps, but he is still doing it.
We had to take 2 weeks off without the 'K' part of his braces because of 2 sores that weren't healing. And without the K he doesn't feel as stable (but he still wanted to try). But once we got them back on he was ready to get started again.
And then I thought...
What he really needs to help him get more stable in between his stepping is something he can hold on to. Like his crutches.
Nick was not very happy about this. He is afraid of his crutches and he says they make him fall. But now he has the ability to stand and remain standing and stepping without the crutches.
But of course his walker is easier for him
So we decided to have a walker-free Winter vacation.
It brought back memories of making Nick workout in his walker. And I told that to Nick. He used to cry and scream and not want to walk, and now he flies in his walker.
So now he has to learn and gain strength in his crutches. Because I know he can do it. I know he has the ability to walk with his crutches.
Nickolas was not very happy about it
But after a couple of days (and some falls and getting right back up) he was getting more comfortable using his crutches. He is still asking for his walker back, but there are places his crutches can go that his walker can't.
And after a week of walker-free days Nick is much more comfortable with his crutches. He is gaining confidence that he can do it!
We even duct-taped a cup to the side so that he can carry around toys or something.
And it opens up his options. When his walker can't fit, or when we have his wheelchair with us (like going downtown) and he wants to walk around, it gives him an option rather than crawl on the floor.
Will he be able to ditch the walker and walk only with crutches? I don't know. Probably not, but can he ditch crawling on the floor and walk with crutches? Definitely! (If and when he wants to)
This Family Day Nick decided to show off.
I have been trying to get him to use his crutches.
I keep hearing how well he is doing with them, but I really wanted to see for myself. We keep getting his crutches sent home from school and Nick keeps stubbornly refusing to use them.
So this family day I got them out and I had a mission.
Nick will show me how he can walk with them.
He is much more comfortable with them than he has been a month or so ago.
But he is still nervous. He wouldn't try them unless I was behind him and holding him.
So that is what I did... at first.
I stood behind him, holding his hips and he started walking. And I started pulling less and less pressure on his hips. He kept looking behind him and saying "mommy you have to hold me". We did a bit of walking, then turned around and walked back.
I knew he was ready to do it without anyone holding him.
So once we got everyone watching... the pressure is on... I pulled out my video camera
At one time he does look back and say he wants someone to hold him. But he just kept on going.
I'm not sure how functional he will be with crutches, but you have to start somewhere.
Even with the smaller base I think he found it was more supportive than the smaller canes we have for him.
Now we need to continue to motivate Nick to want to walk with the canes and I think he will.
We were all so proud of him!
We had a therapist meeting with all of the T's at Campbell's (OT/PT/ST). It is an opportunity for Kyle and I to get together with everyone (including social work) to discuss what has been going on through the year and plan for the future.
The meeting went well, but he has made such huge progress in all areas that I wanted to focus on each of them. One of the hugest gains is not necessarily in his ability but is in his attitude towards therapy. It also gives us different perspective from the information we receive at the spina bifida clinic at Bloorview (and it makes me miss PT Kim and her experience).
To realize how far Nick has come in physiotherapy, I wanted to take a trip down memory lane regarding where we have been in our journey.
This is a little boy who has been doing physiotherapy since he was 4 months old. And not really liking it... at all
This was the child that some physiotherapy sessions I really wondered if we were doing the right thing by pushing him so hard. And we saw progress (slowly)
But it came... when he wanted it too.
(I just realized there is about 3 months between these pictures (Feb 2011/May 2011) and he's wearing the same pants!)
We had some sessions where he screamed and cried for the entire hour! And not just once, every... single... time. And we followed through, and didn't give up. I pushed for what I thought needed to be pushed for, even if he didn't really want it.
And his walker is a prime example (July 2011)
It took a lot of trial and error to find something that worked for him (this is walker #4 that we trialed in January 2012).
I've continued to help to push Nick through different mobility aids. I think we went through 3 1/2 years of therapy with tears shed at every single session. His stubbornness shining through.
And I have seen Nick realize what his ability and mobility is. With this realization came a change in his level of stubbornness. His energy spent working against us changed.
I have seen Nick transition to actually wanting to do things by himself. And realizing that he can.
This summer, balance and standing has become a game with him. Nick wants to practice his balance all by himself, to show off what he can do. To want to walk and push himself. Phsyiotherapy has moved away from goals and directives that I want, to goals and directive that Nick wants. And the change has happened.
"Look at me" (July 2014)
That doesn't mean we haven't continued to push him. Looking for ways to challenge him and work within our way of life. We've gone through using canes, which we started July 2013. Nick even walked during the graduation ceremony with his quad canes last June 2014.
Which of course meant that is was time to challenge him again
And again with some crutches that I bought in August 2013. And hadn't used with any success for over a year.
But Physiotherapy at Campbell's have really listened to me this year and have been working with him with the crutches. Really working with him, or I should say he has really been working with them.
So lets go back to our meeting this week. His physiotherapist Corrie, said what a pleasure he is to work with.
What?! This is the same kid? The one we've just been talking about? No crying, or fighting or being subborn? Actually doing new things?! Wow. I would never have believed years ago that the child who just turned his face red and couldn't catch his breath from crying so hard during physio would be a pleasure to work with.
And I am so beyond happy!
With this new kid they can challenge him without the fight. And he can really show off and learn what he is capable of.
They have moved onto the crutches. (Not the best picture I know).
A fall spent working with the crutches let Nick work hard on something. And then show off what he could do.
This past Christmas concert (that I missed and couldn't get the time off for) was the opportunity to showcase how all of the kids were progressing. Not just all of the kids but Nick especially. They changed the Christmas concert around to show off Nick and his crutches!
A group of kids (I think their Wild-Wheelers group) came in during the sing along of Rudolf the Red-nosed Reindeer. Nick was the last one in during the song...
And he really showed off! My parents went to video tape everything for me. For the video I took out the background noise, and the other kids
THIS is all I need to know about how Nick is doing!
He is doing something different, working and trying. He has come a long way!
This has come at a time when physiotherapy has become a challenge for me as well. The hope that I had years ago that Nick would be a functional walker (without assistance) has disappeared as he has been identified as having L3 function by PT at Bloorview. I have written a number of times about my feelings about this label.
I have been feeling that physiotherapy has all been very negative for us for a while. And to take the time to look at how far we have been and where we are right now has helped to put everything into persepctive.
Physio at Bloorview during out clinic visits have revolved around hips and glutes and extenders and stuff like that. I try to get it, I really, really do. I have the charts and the muscle groups and the rating scales. But I really need the reports to understand it all. And while we are trying to look into the future to try to plan. And while Physiotherapy expectations play a huge role in that, it isn't what physiotherapy is about.
Physiotherapy at Campbell's has been all about hope and work and showing off how far we have come, working towards a goal.
Never one to be satisfied with where we are right now, I wanted to look forward and consider the future. I think I mentioned in the beginning of the month that I'd also been looking at some crutches.
I found some at a reasonable price, and so we could have them on hand I bought them.
Doing some measurements he was within the top range of toddler crutches, and just below the lower range of the pediatric child crutches. So I got the child ones.
To have some options available to us.
So when they came, Nick humored us and tried them out. He wasn't too happy about them.
He can stand with them, straighter than with the canes, but they are still too big for him right now.
He doesn't realize he is standing by himself without the couch.
When we tried them out. On the plus side of it, he wasn't upset...
They will be used, just not right now.
So they are sitting in our dining room right now, there if Nick wants to try them out again, they are small and out of the way. I'm not regretting the purchase, we'll try again in September.
I feel that it is time.
Time to challenge Nick, explore some additional options for walking.
Originally Kyle and I discussed forearm crutches, both amongst ourselves and with our physiotherapist at Grandview. And then when we had our spina bifida clinic and mentioned them we were greeted with a lot of negativity and I was thinking that maybe this wasn't a very good idea.
I had thought that forearm crutches would be more stable in the upper body for walking. But physiotherapy at Bloorview brought up the valid point that you are looking at a small bottom to balance on, as opposed to a large base of a quad cane.
So then we went back at looking at canes. Canes are not new. We used them for walking in conductive education in April 2012 through to July 2012. This is the video from Nick walking with them.
This was a year ago and I knew that Nick would be better with them this year!
In our current block of therapy, which is also our last block before moving to the school program, we have discussed a lot of things (including canes, crutches and bike) all fit into about 8 sessions, half Kyle went to and the other half I went to. It seems that every time Kyle went, they had some quad canes, and he didn't take any pictures or video, but from what Kyle told me, he found the quad points too cumbersome.
(I'm not sure why all the google pictures I can find are pink).
So I spent a lot of time searching online for some pediatric sized canes with or without the quad bottom, because I found the quad bottom at our medical supply store (except it needs a specific sized tubing).
Through physiotherapy they contacted a couple of medical supply places, but no one carried the pediatric sized canes. Looking again online they seemed to be priced about $60-80 per cane.
So we turned into a couple of do-it-yourselfers!
Kyle found some small adult quad canes for $30 each and ordered them.
They arrived this past week...
