Your wish is my command...

A couple days ago I blogged about wanting the feeling of Nickolas tugging at my jeans (you can read the post here). Well Nickolas was nice enough to comply. I guess I should have said that I wanted to be standing, or at least in,  my jeans when it happened!

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}

Some Reality and Foot Stamping

For the last couple of months I can almost forget about what Nickolas is not doing. Forget is maybe the wrong word. I know what he isn't doing, what we are working on PT at him doing. Maybe it is really that I never forget what he isn't doing but I try not to look at what he isn't doing, and concentrate what he is doing.

Until I come face to face with babies the same age as he is. Babies who are crawling around, getting into trouble, coming up and pulling themselves up on their mother's legs. I want that.

OK I know that I am being unreasonable. That I will get that tugging at my jeans eventually. But I want it now! [insert foot stamping here]

We go to a friends house, with babies all the same age. 10 - 11 months. The other babies get put on a mat and are immediately off and crawling and exploring. Nickolas is put on the mat and he stays there, or rolls around but isn`t pulling himself up, isn`t playing with all the toys. Just playing with what he can get.

It just shoves reality in my face and won't let me look away.
I always thought that I had reasonable expectations for Nickolas, that I concentrated on what he could do and not at what he couldn't. That all that mattered to me is a happy child and mobility doesn't matter. I didn't quite realize how much mobility effects so much development and interaction at this age.

But as another fellow blogger mother has pointed out. He's not sad.

Yeah we're all laughing here.

Hopefully tomorrow will bring a better day. We've had 6 appointments (pediatrician, naturopath, opthamologist, repeat hearing test, urodynamics and physio) in the last 8 days. So I think I'm a little SB sensitive today. All the appointments went fine.

It's harder than I thought it would be

With a title like that, I could really be talking about anything, be it with our spina bifida journey or separate from it. When reading and imagining what all the hard stuff would be, this would never have even crossed my mind. I can do this, no problem. This will not be a challenge. I know the importance of this, and it will be on the top of my list.

So what is it? What is this simple-tough thing that I'm finding hard? OK suspense over. Not babying Nickolas. Not treating him like a baby and letting him do things.

I don't want to baby Nick, I do not want to treat him any different than his sister or cousin or any other child. But I think I might be doing it. He is moving out of the baby stage - he is 10 months old! and I'm afraid that I still consider him a little baby.

A prime example.
We go to the park, Katheryn plays with everything and Nick stays under a tree, lying on the ground or in his stroller. Because he's not mobile he can't play. I don't think I actually thought that, but that is still the end result. I have pictures of us at the park, and there he is, underneath a tree on a blanket while the kids are running around the playground.
Luckily I recognized this. So out he came from the stroller, I carried him around the park with me and we tried out some of the park toys.

We bounced on the bouncy teeter-totter thing, he twirled in this twirly thing and he swung on this swingy thing. This was a brand-new park and had a lot of things that I hadn't seen before (and obviously have no idea what the names of them are). A long way from the simple metal teeter-totter, metal slide, plastic S slide and swings that we had in our parks.

Nickolas had a lot of fun! And Katheryn had fun playing with him as well. The twirly thing was like a bucket on a pole. So Nickolas was able to sit in it and Katheryn and I twirled him around. He laughed so hard! His eyes were rolling around in his head because we got him really dizzy. I put Katheryn in the same thing and twirled her once - but she got scared and started screaming! But she had no problem twirling Nickolas.

They also had a large disc that was on 4 chains that you were able to lie on and swing. Nickolas lay on it and Katheryn liked pushing him and swinging him.

They had a little bit of R&R on the swing together as well.

So that is it!
No more babying Nick. No lying him down and setting him in the corner as other kids are able to be more active and play. Nickolas is still a baby (I think I'll always think of both kids as babies) but he is no longer a baby-baby.

Nickolas is growing out of his inactive babyhood and it is my job to ensure that he gets to appropriately play.
So we had a little speed bump and now I recognize that it will be harder to keep from treating him like a baby. But I like to think that I'm up to the challenge.


FYI I learned that when you go to the park do not dress your kid in dark blue or black. When Katheryn was running around and would get out of site and I was looking for where she was, the navy wasn't bright enough for me to identify her. I ended up looking for that little orange headband to keep an eye on her.

I have also learned that while Katheryn does not like twirly rides, she has no problem with climbing up ladders. But cries and screams when she gets stuck (4 ft off the ground)! Especially when I have my hands full with a poopie diaper and can't help her down. Thanks to that unknown mother who helped her down for me!

A Bouncing Baby Boy!!

Nickolas is getting the hang of the exersaucer! He likes being in it now, and he actually BOUNCES!!!

Yes Katheryn likes to give him and hand, she also likes jumping up and down beside him and tells him to jump too!

I think he likes it because he is verticle, instead of being horizontal all the time. I just have to make sure that his feet are straight on the ground. But he can turn around the whole thing and plays with everything. Katheryn helps showing him what everything does.

The kids are playing together more. Together not just Katheryn bringing toys to Nickolas, or taking toys away. But side by side playing.