A Knights Tale

We got the chance to go to Medieval Times with the kids! (Thanks Grandma Ridding)

So of course we had to pull out our knight and princess costumes

Nick has been ighting his wheelchair lately, but we knew it would be way too busy for his walker, and we wanted his energy to be on fun, not on walking.

We had the canes with the wheelchair as a compromise

The kids got spoiled with all of the props and toys we could get them

Exploring all of the castle atmosphere before the show

We were the yellow knight, and got to sit right at the very front

Nick was amazed, I think his mouth was open for the whole show. 

Just watching all of the knights and the horses!

And they had alot of fun waving their flags and cheering!

Even if our knight didn't win

Every knight picks a queen of the tournament.

They give out flowers, but then at the end, the knight has a ribbon that they put on their lance for one person in the audience.

And Katheryn got the ribbon!

She was very excited, and very shy about it (she wouldn't look at the knight afterwards) but proudly wore the ribbon as a sash

After the show the kids stayed in character!

 They are very excited and want to go back!

A mini clinic

We've had some issues with Nick's bowel routine, mostly in August and September. We have had a number of instances with constipation, that required a number of different tricks up my sleeve, over a week or so before we got over it. So I wanted to come in and see someone. Preferably months ago...

Yesterday was the date (finally), I had been trying to track our progress, but when Nick started school they haven't been very good letting me know if he was clean. And so I've been hesitant to send him without diapers (he is also wet a majority of the time).

I thought we were only seeing urology, who deals with all of our poop stuff. But we actually saw a bit of everyone!

Ultrasounds show that the kidneys are all good.

We had a couple of issues that I wanted to discuss.
What can we do to clean him out? Really clean him out. Can we adjust the solution? What should we try?
The one option they mentioned was the MACE, but we are still not there.

I asked about the Cincinnati program, with serial x-rays and adjustments to the enema solution. I couldn't get them to accept to do something similar, but we did get an x-ray to see where we were.
And Nick was backed up. So all that we have been able to do was clear the closer part, and the problem we've been having (getting nothing and then getting constipated) is because the purpose of the enema is to clear everything, and we weren't getting there.

So we are going to increase his PEG to get everything moving, and then really clear that out.
That is the plan.
We're going to wait until we have a bit of time (Christmas break).
When I asked about what time of solution to use (currently we are just using normal saline), we were given the ok to experiment (since I have really been doing that myself anyways).

I also wanted to see what they thought about the fact that Nick is wet more often. Urology discussed increasing his ditropan. I'm hesitant to do this, because of the side effects of the ditropan. But there is a patch.
A ditropan patch that we can try
You replace it twice a week and it is more effective.

My questions is why wait? Why haven't we been using this before?
Not quite sure, but we are going to try it out now.

So we have a plan.

OK urology figured out

We got to talk with psychology. Touch base and see how we are doing. The difficulties we had with Nick when we were away, what we need to do with school and any testing if we need it.
Right now, waiting on any testing, and write the attitude from October off as a change in environment (but if it happens again, contact if we need it).

We also had the chance to see our physiotherapist. Nick's original one, the one I really trust.
And so I talked to her about our recent concerns with Nick's braces.
Our school PT wanting to keep the KAFO and even more brace, and I'm not very happy with it.
Coming out of our conversation with her (which happened just by seeing Kim in passing and spending 20 minutes with her)
She answered our questions about his feet turning in. And my question about Nick's braces.
If he can walk without the 'K' then leave it off.
If he can't walk without the 'K' then he needs it.
I was very happy with that plan.

Then we were really ready to leave.
And Dr Church, our developmental paediatrician finds us. Did we know we were supposed to be seeing her as well? Oh. Oops
Nick and Kyle were all ready to be out the door.
So we talked quickly about our plan. We have her contact information, and will contact her if needed over the holidays. And follow up at our regularly scheduled appointment.
I definitely think I will go directly to Dr Church instead of running around in circles that I feel we have been doing since we identified we needed help and had some problems in the summer.

So a quick clinic got us a plan and direction and hopefully we are moving forward!

We also had the chance to quickly catch up with another family (but only quickly)

Christmas Tree Hunters!

We went Christmas tree hunting!

There was snow, and it was cold and so we were all bundled up!

The wagon has been meeting Nick's needs to be able to go trudging through the snow to cut down a tree.

I've been looking at different tree farms to try to figure out how we can continue this tradition over the next couple of years. When Nick has outgrown the wagon

Katheryn was very excited to find the right tree!\

We tried to get her to look at some different trees, but she stayed firm

All packed up and ready to go!

Nick and snug

Through the whole day I was thinking how accessible the tree farm would be, with a walker or crutches or canes or something. The tree farm, Spademan Tree Farm, we found has a wagon ride. I think that it can work over the next couple of years.

Song and Dance

We have had a lot of singing and dancing in the house lately

Nickolas has been cha-cha-chaing to any type of musical tune

 

Katheryn has been singing her bullying-awareness song

Katheryn actually sings everywhere. Especially in the public bathrooms.

Makes keeping track of her easily.

Katheryn has also been taking acro-dance classes, and it was her recital yesterday.

She had so much fun! Skipping and jumping, bridges and somersaults.

In the middle of it she kept coming over and hugging Nick.

Went well, until he accidently head-butted her in the nose.

After the crying she went back and finished.

They had time to pull someone from the audience to dance with

Nick grabbed Nick and kept dancing and spinning him.

Even after she ran him into the wall (which they both thought was hilarious) 

TC

In my last post I talked about orthotics and concerns about Nick's foot turning in. SB mommies know what I'm talking about, but for everyone else, it may see like a bit of an over reaction.

The answer is TC, or tethered cord

I talked with his neurosurgeon who agrees that we should get it checked out.
Not as an emergency or anything, but a MRI in early spring.
Good, that means we are still getting it checked out, and I'm not handing my child over for major surgery because of a foot turning in... yet

I'm trying very hard not to freak out. To think of how all of the kids I know did after their TC surgery. And how their parents survived it. Even if they did worry a lot before hand
And we aren't even there yet! Maybe it is just the excitement and busyness of the day at school.

But let me back up a bit.

Here is a video by the show The Doctors that helps to explain it a bit

The spinal cord normally hands loose in the spinal column

As children grow older, the spinal cord raises up in the bony spinal column, but when it is tethered, it doesn't raise, and is pulled tight. And there is nerve damage.
A picture is available here

The symptoms are not obvious, but are gradual changes. And that's what we are supposed to be watching out for, subtle symptoms. So here I am, unsure if there are any subtle symptoms.

My understanding is that any damage that is done from the nerve damage, is permanent. So you don't want to wait for huge changes, because surgery doesn't fix it. It just prevents further damage (and hopefully doesn't cause further damage - with the spine surgery and everything)

Surgery can free the scar tissue, but creates more scar tissue.
So I'm always watching out for symptoms, while hoping that I won't see them.

So I have a couple of months to think and wonder and watch.