Standing Frame

Nick has been using a standing frame while he has been at school.

It is a supportive frame that allows the user to weight bear without leaning on anything, and it leaves the hands and arms are free.

We had a standing frame when Nick was a baby, he got it when he was a year old with his first set of AFO's. He wasn't standing by himself yet and we wanted to get him upright with his peers and allow him to weight-bear and strengthen his legs and prepare them for supporting him.

And we used it alot to get him on his feet, and get him used to being upright.
But when he started walking in his walker, we stopped using the standing frame, and he eventually outgrew it.

 This year at school Nick has started to use a stander again while doing his speech therapy work. This one has wheels on the bottom so that Nick and the frame can move around (it is different from a mobile stander which has big wheelchair wheels so he can move himself while standing up).

This stander was bought for Nick for school and is designated for him. So when he starts at his home school in September, this stander will go with him.

So it is great for doing school work. When we were asked if we wanted to borrow any equipment for the summer from his school equipment we asked if we could take home the stander.

While we don't want to have any big and bulky equipment in the house that we don't need... After our appointment with our new physiotherapist and talking about how need for more bracing, I think this is valuable and we want to use it daily.

Nick likes it and asks to go in his stander "just like at school". When he knees start to hurt him, after about an hour, then he comes out. (I am really, really hoping that the new KAFO's will help with his knee pain).

We have some work books for the kids to work on through the summer.

Last summer we were concentrating so much on his upcoming surgery and recovery that we didn't do anything related to school and his teacher mentioned that he lost some of his knowledge through the summer.

So while Nick is still very excited about learning and school and using his standing frame, we are going with it!

Up, up and away!!! Part 2

As promised in part 1 - here is Nick showing off how happy he is in the standing frame!

And of course mommy had to grab a picture of herself with her standing baby boy!

It took a couple of days, but Katheryn finally got to see Nickolas standing up too! She thought it was great! 

 She loved that he was (almost) the same height as she was! She could run around him and tickle him and hug him! Please ignore the messy faces

Just hanging out!

This is  how excited Nickolas has been getting when he's standing and playing! He doesn't like clapping (but he finally did it!), but he gets so excited he clasps his hands together!

He is like this for most of the time he is in the frame. We have him in it for 30 minutes a day, and can increase it by 5 minutes to a max of 60 minutes. He lasts the entire time, and we only take him out when the time is over.

He gets really tired when he's in it, just shows it's working.

The bonus (for Nick) of being upright? He's at a perfect level to do this!

Up, up and away!!!

And the day arrived for Nickolas to get his first piece of equipment. And I wasn't quite sure how I felt about it. I was excited for him to be able to be upright. I was afraid he wouldn't like it. And I was nervous about the idea of equipment - something that broadcasts that he needs help, that he is different!

And at the same time, knowing that this would actually help him be where he is supposed to be - standing - to help with those developmental tasks. That this was actually a really, really good thing. That was my rational side - but who ever said that motherhood was the same as being rational!

I had a picture in my head of something large and metal with lots of straps and stuff.

Googling standing frames and infants did not help, I just couldn't get a picture in my mind about what we were going to come home with.

But the day arrived, and Leslie the orthodics guy came out, with this little tiny metal and foam thing. And that was it!

First we did the AFO's. These are solid plastic braces that give support to Nick's ankles. They go from below his knee and extend past his toes (for growing room). I think these will last us a year before we get new ones. At first Nick wasn't quite sure what these things we put on his feet were.

But then he decided that they were ok. He is only going to have them on when he is in the frame, not when he's crawling around. But he seemed to think they were great.

Then it was stander adjustments. This is something that is personalized for Nick. So it is all the right height and width and everything for him. It was marking where his feet are going, where the strap around his chest is going, and that the foam for his knees were the right diameter and placement.

After that, Leslie left to make those adjustments and Nick and I just waited in the room. Nick decided to explore some of the room. He was looking out the window (I positioned him here - he didn't pull himself up) but was really happy looking at all the cars and people out there (not too much snow). And I figured it was a pretty good time to take a mommy and Nick picture.

With the AFO's and the frame, we want his skin to be covered, but have no fabric bunching up. So under the AFO's he just has socks that come all the way up. And no bulky jeans or pants with the frame. The baby legs are perfect! Thanks to Sara (a fellow  SB mommy - Ruth's mom) and her leg warmer contest  and her online store http://www.babysnazz.com/ Nick had the perfect thing to wear with his standing frame. I LOVE these leg warmers!!!

So finally Leslie came back and we were ready to go!

And we are up! Whoa

 

Nick wasn't quite so sure what was going on.

Then he dropped his tiger! I could see exactly what he was thinking! Oh crap! How am I supposed to get that now?! But he actually stopped fussing when he was thinking this over.

The solution!

Had some last minute adjustments. If you notice - Nick's belly is hanging out of the elastic chest strap - that was most of what we had to change - now his belly doesn't hang out.

So we are all ready to head home. We had to pay for everything - I could not believe how much these things cost! Luckily the government pays for 75% (ADP - assistant device plan) and our insurance should pay for the rest. But they were $2000 each piece! We only had to pay $500 each, and insurance will reimburse us. I guess I shouldn't be that shocked. Everything is so expensive.

The standing frame is so portable - I just hooked it over the handle of Nick's stroller and off we went!

Nick had to check out his new equipment. He really liked how blue everything was!

On the way home we needed to stop and pick up some shoes that fit over the AFO's. Size 8! I guess that makes up for his teeny tiny feet! (I think they are really size 3). But they fit pretty well over everything.

I am actually pretty psyched that he has these now. They look great, they help him. AND he likes being in the frame - more pictures will follow.

The next step...

Actually we are taking 3 big next steps this week. But for now I will blog about this one.

Equipment

Why is it that it is something that I pushed so hard for, have been asking our therapists for since September, and now that the day is almost here I have this funny feeling. A heaviness in my chest. A little part of me wishes that we were not here yet.
Of course the bigger part of me is thumping that little part down with logic and excitement. This will help my baby stand! So that heaviness is overshadowed by excitement that yes, we are taking this step.

So what equipment is causing me all of these feelings? We are getting our AFO's (ankle foot orthodics) and a standing frame.
YAY!

One thing that I was surprised about (and I don't know why) but to make this piece of plastic more personalized - considering it is going to be with us for a long time - we get to pick a design!
So after looking through all of the different designs (they had so many cute butterfly ones - I think Kyle would object) the only one that really stood out for me is the Toronto Maple Leafs - for those International readers, this is our hockey team and we are die-hard fans.

So once our design was picked, the real fun began. Fitting! Nickolas was a champ (of course) but what he really wanted to do was help. Oooh look at this blue stuff, can I touch?!

Pretty much it is the same as when they put on a cast. I guess it is that exact same as when they put on a cast! They are casting his foot and leg so that they know that the braces they are making are for this foot!

First they put on this sock, and then the  blue wrappy stuff (that is the technical name). That sets and then it's just cut off.

The orthodics guy who did the casting I'm sure thought I was weird when I asked if I could take pictures. He didn't say anything, but it is pretty simple.

This is the end result, one casting of a foot.

I guess we really ended up with 2 castings.

The next thing we did was measurements for the standing frame.
It is personalized for him as well, so we needed measurements of his chest, hips, knees and ankles. I am still not that clear on the size of this standing frame. When I've asked I've been shown them followed by "but yours will be smaller". So we'll see what we get.

Nickolas breezed through the appointment with his milk and his cheerios (which we ended up spreading throughout the room).
And in 3 weeks we should have our first pieces of equipment. They didn't come cheap either. Boy was I surprised to see the invoice of $4000! Half for the stander and half for the AFO's. Really happy that government (75%) and insurance (25%) pay for these steps to verticality!
... yes I made up that word.

Changes

Changes are coming. And they are supposed to be good.
We got a call yesterday saying that our name had come up for the wait list at Grandview (our local kids rehab centre). This is 15 minutes away from us, as opposed to the 1 - 1.5 hour drive to Bloorview where the spina bifida clinic is. This is the drive that I have been making at least every week to go to weekly physio appointments.

It's worth it, I really like Kim, our physio (I think I might have written about her before). And yesterday we were even talking about AFO's [ankle foot orthodics - braces for the ankle and foot] and a standing frame.  

Kim and I have discussed that there are various beliefs about a standing frame. Either waiting until children are able to stand, or helping them to stand to give them the feeling of being upright and the social connotations associated with being able to 'stand'. I like the idea of introducing a standing frame earlier so that Nickolas is not always lying down, being held or sitting. We discussed starting the process of measuring for AFO's before I go back to work in 2 months.

I am worried that this change, being called up from our 8 month waiting list is now putting this in jeopardy. We were getting things started, from my perspective giving Nickolas some independence and now this is being threatened. And I don't like it!

At the same time I recognize that maybe it isn't being threatened. Maybe the PT's at Grandview will be on the same page. Maybe transition will be easy and seamless.

We go on Monday to see PT [physiotherapy] and OT [occupational therapy] at Grandview. So I guess I have to wait until then to see how things will progress.

In the meantime, this is the newest thing that Nickolas has done.

It might not seem like a big thing, but he is rolling over to something and then reaching to get a toy - a big deal! And he's starting to attempt to investigate obstacles.

Oh yeah, and today was a better day. {if you have no idea what I'm talking about - see yesterday's post}