Spina Bifida Clinic

It was time for spina bifida clinic again!

Nick got to show off his crutches skills!
And of course impressed everyone!

Clinic Day is usally a long day, and so we came prepared to spend the day in the waiting room. But we actually spent most of the day in an exam room. So we could spread out our stuff.

We saw physiotherapy, who was very impressed with his walking. And orthopedics. He got the all clear for scoliosis. Nick has had a bump at the bottom of his cyst scar, I find it there sometimes and then not there at other times. I asked if I should be concerned from an orthopedic standpoint. But he didn't think so.

We saw occupational therapy. I had some questions about Nick's wheelchair, and the possibility of how to look at getting the FreeWheel. There isn't any funding for it anymore. So we'll keep that in mind when we are looking to buy it. She had some suggestions for the wheelchair, but we will follow up on them with Grandview OT. We also talked about Nick's computer and some suggestions for programs to help with typing.

One of the things with the SB clinic, is that you get to see everyone, but you need to also figure out who to talk to, to get some answers. Or at least know that you are on the right path.


When we met with urology we talked a lot about what we have been doing. After Nick's spinal surgery the urology issues we were having improved. Botox right now is another option, but not something we want to explore right now.
But the thing that got me excited was that I FINALLY had someone to recommend and actually suggest putting the PEG in our solution at night! I have asked this many times and have been told no.

We also met with Dr Church. She is my favorite doctor! Not only is she passionate about caring for Nickolas, but she listens and respects me. Both as a mother, an expect and a nurse. In fact, she sent her residents out of the room at the end of our assessment so that we could chat.

During our appointment we talked about Nick's overall health. She asked about school and Nick's IEP, I said that seems very basic to me, and I'm not sure what to do about it. I never even thought about his IEP or I would have brought a copy with me.

So I'm getting a copy of Nick's psycho-education assessment and his IEP to see if there are areas that we are missing that we can help assist him in his learning.

Overall it was a good day. Nick is 114.6cm, which is 17%ile, and his weight is 22.5kg, which is 42%ile. So he is shorter, but we know that this is most likely, and his weight is ok, if a little under but not concerning.

We go again in a year, but everything is looking good and stable.

OT group

With Nick out of Campbell's, he is now part of the school-age group of therapy. Which means that he doesn't get one-on-one therapy anymore but they run therapy groups that he can join.

 

They had a OT group for Nov - Dec for 6 weeks and every week they have a different focus.

They have been doing parties and dressing and winter clothes. So they practice put their clothes on and off (extra clothes, overtop what they are wearing).

It is group and practice for the small hand stuff, like buttons and zippers, but also the activities of daily living like getting dressed.

 



 

The weather has been super mild, but the day they had winter clothes, it was raining and 10 degrees outside. But Nick wanted to go out dressed in his snowpants and everything.

 

Of course what he really wanted to do was splash in the rain puddles and get everyone soaking wet!

Learning Independence

We went to the first half of our SB clinic last week and met with Dr Church, Nick's Developmental Pediatrician, who we absolutely love!

Everything is going well, but we left with a couple of goals. One was for urology (and I will update that next week). But one of our goals was for Nick to gain more independence.

And that means cathing himself.
Let me step back for a second to explain what this is (just in case you don't know)
The nerves affected by spina bifida include the nerves that go to the bladder. Nick's bladder isn't able to empty itself (except for spasms) and we have been emptying it for him with a catheter. The nerve damage also means that he doesn't feel his penis or his bladder. Which is good in that catheterization doesn't bother him at all.

This is something that we have been trying off and on. We were making some headway in January where Nick would actually touch his penis. This might seem very basic, but it is a very big deal for us.
You know how you hear that boys when they are children are always touching themselves? Not even a little bit. He doesn't feel it is part of his body. When I try to get him to touch it, he makes a face and scrunches up his fingers like he just touched something gross.

In January we started slow. But when he stopped wanting to help I didn't want to push him.

When we saw Dr Church she thought that it was time to seriously try again.
Nick has the dexterity to do it. We talked to him about and he said that he wanted to learn how to do it. I was concerned about a bladder infection, but she said we could tolerate an infection for him to learn how to cath himself.

It took 2 days (4x a day) and Nick could do everything himself. Start to finish. He needed a bit of help organizing himself. And I kept having to stop myself from helping him too much.
Nick's aim isn't perfect (and makes me cringe sometimes) but he wants to do this! But he does get frustrated if he keeps missing.

I am amazed at how quickly he picked it up. But I guess he has seen it happen at least every day for 2081 days... That is lots of time to learn.

Nick was so proud of himself when he did it "All by myself!"
And I was so incredibly proud of him as well.

This is also a great step towards independence. It means that when he is at school his EA can assist or observe his cathing, while he can do it all himself. One step to be more ready for grade one

Using our hands

Katheryn is exploding! She is writing, she is reading
She loves school - and she makes lists of everything that she likes (Mommy was on that list - along with flowers).

We had our parent-teacher interview and some of the things that Katheryn has to work on; writing with the correct grip, and cutting.
Perfect!
That is our homework with Nickolas from OT as well.

When we had our reassessment of OT at the beginning of the month he was still within normal range, but hadn't made any progress since he was assessed in the spring. So we started a block.

Nickolas has been working at OT - and not really realizing that he is working.

He gets to do mazes!
With his 'birdy fingers'

And cut things outs
He's made improvement staying on the lines

And at the end of the day he has his very own craft he can take home to Katheryn!
(we've  made a robot, garbage truck, penguin and now the pig this month)

So we have a bunch of fun crafts and stuff to do at home with both kids together.

At the beginning of the month I discussed applying for Cambell's school. We started our application for it as well. It is a written and video application. I'm happy with this decision. If we get in I'll be glad, if we don't I'll be fine with that decision too.
But we have our options all lined up!

Show Off!

That's what I have.
I actually have 2 of them!

Katheryn races, Everywhere. Up the stairs, down the stairs, to the car, just because. She is getting alot better when other people win. Or tie.
She is a super hero (she has super strength - she can open the fridge) and she is a super-finder - her super power.
Did I mention she has an active imagination?
Katheryn has recently been working on numbers, simple math and colour mixing.
And aceing it! Every day we practice.

They love each other so much! Sometimes I can't believe what a relationship the 2 of them have with each other.

Katheryn comes with us to physio and we talk that we are there to help Nickolas and she shouldn't get into trouble. (Doesn't mean she doesn't push the boundaries though).

But usually Katheryn finds the cool toys for Nick to play with!

 We've gotten picked up at Grandview again.
So that is 6 weeks of therapy before the next break (but we start conductive education again in April)

Nick is really showing off now!
Last week was our first session where we did not have any tears - at all!
We even had Nick laughing! Unheard of!

We are working on standing. With less and less support.
He has more ability than he thinks that he does. Nick is very cautious. And always has been.
But Nick is learning his ability and has been showing himself off!

Cruising. He hates cruising. If something is out of his reach and it's beside him, thats fine, he's good without it.

This week we sat up to work on cruising. He just dug his hands in, and off he went. No problem - like he's been doing it for months!

He showed off the same way this week when OT was with us. Everything she put in front of him. Done and done!
Drawing lines - no problem
Stacking blocks - give me more!
Opening things - fun!
Scissors - not something we work alot at home, he needed help but that is age appropriate. And Nick thought it was fun! So did Katheryn!

So we are all happy to have a house full of show offs this week!

Walker Tune Up

Nick's walker got a bit of a tune up this week.
We had it in last week and both Sheka (OT) and Megan (PT) were really  happy with how he's moving, and his lower body, but weren't happy with his upper body.

So out came the tools! And Katheryn's help.

Bringing Katheryn to physio is somewhat new.
We tried it initially last year and Katheryn was more distracting than helpful, but we gave it another try and see how she is
Katheryn found some distractions for herself!

Nick thought it was interesting what they were doing.

Not necessarily when we wanted him to keep going, and going, and going.

But it was all to see how we could get him to hold his wrists in neutral.

Nick has been putting alot of pressure on his wrists, so the idea is to build up the forearm support so he will use his whole arm to help him, and not just his wrist.

And also to keep his wrist from bending too much.

So it was adjusting the handle bars, building up, moving things up and down. And lots of different trials. And then wrapping it all up.

 We left the walker for 1 week and then had another appointment (the one where these pictures were taken) to make some more adjustments and get us ready to send home. And out PT is going to be off for maternity leave, and she wanted our walker to be the best it could be for our new PT in January.

We got him up and running well.

Nick actually really likes the new look!

See you in the fast lane!

Age Appropriate

Age appropriate, age appropriate, age appropriate!

I don’t think I’ll get sick of hearing those words!

Occupational Therapy declared that … yes, you got it… Nick was age appropriate!

We had an assessment during Nick’s latest physio appointment. Our last block of sessions included both PT and OT and the two of them work very well together. And they both love Nick! So Sheka (our OT) likes to pop in sometimes to see how we are doing during this next block.

Nick decided to show off for her!

 

Coloring

Puzzles

Taking things out, and then putting them back in the tiny holes

stacking blocks

turning pages

feeding himself

She'd ask him to do something, and he would just go ahead and do the next step!

She said we must have been practicing. Not so much, but Nick really likes doing what his sister is doing - and really LOVES showing off, and if she is colouring, or playing with lego, or doing puzzles - well then he is right there wanting to do it too!

But
Sometimes I wonder, sometimes thoughts get the best of me. Nick isn't all that mobile yet (army crawling only), and not saying any words. I think of Katheryn when she was 16 months old, and my niece when she was 16 months old. And Nick just seems so behind them!

But wait a sec. How is he behind them? Well, first of all he's not running around. Well yes, I can't base all of my fears on something he is not going to be age appropriate in. And so much about being, (AHHH) a toddler, is about, well... toddling. Exploring the environment, learning limits, doing things and learning.

And talking. Talking. Well, we are working on that. We are going to speech therapy group - where all the other kids are older and running around and saying a couple of words (I think). And I KNOW in my head that when Nick is doing so much in his motor skills that his speech will come. I know it in my heart that he understands and that one day he will just pop out those words "Mommy, daddy, doggy, Katheryn" - or however he short forms it, probably banana will be high on the list too. I just wish we were there now.

BUT this is about AGE APPROPRIATE!!!
And everything else will come. I know it, Nick is super smart, and happy and healthy. He has definite opinions about a bunch of things. Not the least of which - if he doesn't feel like doing it, we won't.
Stubborn, stubborn child!
But I'm sure that is age appropriate too!

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}