Physiotherapy Fun

Nick has been doing physiotherapy every week. And has been working really hard at it. Gaining strength and walking on his crutches. (We had to give up the goal of independent steps, he isn't as stable as he was in November). But we have goals for speed with his crutches and working on stairs and balance standing.

Because he has been working so hard today he got a treat.

Anyone who knows Nick, knows that one of his passions is Ninja Turtles. Yes he is also loving Avengers and Star Wars. But Ninja Turtles is his first love.

Well Lindsay, our physiotherapist, has experience with martial arts and has all of their weapons.

And she brought in her sai's today.

Nick thought that this was the best physio session ever!

He worked on independent standing, with his hands above his head, with the weight of the sai's.
And he didn't even know that he was working

She also taught him some of how to use the sai

Even though it looks like he is playing with something sharp, they aren't actually sharp. And while they do have weight to them, I will admit that the fighting pictures were posed.

And hey, he is a boy having fun

On days like today I shake my head and remember how he cried and screamed for every physio session for years! Now he has fun and is full of attitude

Bike Riding and some nice weather

Nick has been enjoying the nice weather. No more snow, no more winter coats! At least for now

While I was reading and relaxing on our porch, Nick came out to tell me that he loves me this much. And of course practice his independent standing.

And so we pulled out their bikes for the year
They had lots of fun on their first bike ride of the season
(with blue mouths for some candy)

Botox Update and Problems

We've been having some bladder and bowel issues lately.

Nick had his botox and deflux about 2 months ago. And we were really, really happy with it. For about 6 weeks. Then at Easter weekend I cathed Nick and got all brown urine. Completely brown.
My first thought was a bladder infection, so we started some d-mannose and pushed fluids. And it started clearing, but then he was leaking at home and school. He also started vomiting and had a couple of nights when he would get a really bad headache that would last a couple of minutes and go away.

So I knew that something was going on.

I wasn't really sure what it was. Was it bladder or bowel related?
Had the deflux failed (and that was the brown liquid) or was it a bladder infection. Was it constipation causing a bladder infection? Was it all of the above?

This past weekend Nick started getting constipated and his MACE was starting to leak (which only happens when he is backed up). And his bladder was leaking too, soaking through everything.  So we did what we usually do and gave him more Restoralax. When his MACE stoma started leaking really bad, and Nick was starting to not feel well I thought to clear  him out again with another flush.

So I started flushing small amounts at a time (so it was a mini flush, not a full one). But then nothing would come out. And as I sat in the bathroom with Nick I could see him getting sick. He started throwing up and complaining of a headache every time he put his head up. Then he got really tired and only wanted to sleep.
Of course my mind is flashing shunt! But I also know that the shunt drains in the belly. And if the belly is full (with poop or fluid that won't go through) then the shunt can't drain.

I kept pushing more fluid in and giving it some time (about 300 mL at about 50mL at a time) But after 3 hours I was reaching the end of my things-to-try-at-home and so I started packing my hospital bag and getting help so we could head to the hospital. My thought was that he had a blockage and my attempts at dislodging the blockage were not working. Of course it was the weekend, and all of my medical contacts were not there. But I did email his urology Nurse Practitioner.

Kyle and I sent Katheryn across the street to get my father to come and either drive us in, or stay with Katheryn. I collected the puke bucket and lots and lots of padding incase things started moving in the car.

But as soon as my father walked in the door, things in the bathroom started moving. And whatever blockage passed. Nick started feeling better, but was still really tired. He slept for about 3 hours and woke up feeling a lot better.

It was a pretty scary time for mommy. I didn't know if we should have gone to the hospital sooner, or even what hospital (I later talked to one of the pediatricians at my work and he wouldn't have been comfortable, especially with the shunt symptoms).

In the end we made the right decision, because everything did pass. But during the 3 hours when I could see Nick getting worse and worse I felt so helpless!

The shunt symptoms went away, so everything is draining from his shunt normally again. What I am hoping is that all of the original bladder symptoms will go away now that the bowel is better. But if they don't, I think we are going to have to say the botox is no longer working and start the Gelnique again. This is disappointing, because we really only got a good 6 weeks out of it (and I was hoping for 6 months).

Birthday Party!

Katheryn has been looking forward to her birthday party at Chuck-e-Cheese
Apparently she put it to a vote in her class. The choices she gave were Disney Cruise, Great Wolf Lodge or Chuck-e-Cheese. The class voted for the Disney Cruise, but Kyle and I vetoed all of the other choices.

This is the Birthday Girl showing off her new nails... Rainbow of course.

Katheryn got to invite 10 friends from school.

I was much more organized with this friend party then I was the last party. I had a list and wrote down contact information for parents who left.

We had containers of coins that I gave to every kid and then paired them up to just go wild (with an adult). And that is what they did.

The only thing with this, is that instead of everything having fun together, they had fun with their partner. But the important thing is that everyone did have fun.

We came back for some pizza and birthday cake (Rainbow of course)
They had the Chuck-e-Cheese character come out, but Katheryn didn't want to have anything to do with him.

She also had a ticket grabber. Pretty much she get put in this wind tunnel with tickets and tries to grab as many as she can

She wasn't too sure about it

And I was really glad she had pants under the dress.
But she had fun in the end

Because we had lots of fun, we didn't have time to open any of the presents before everyone left. I'm not sure if this is how people are doing it anymore, but we have been to other parties like this.

Katheryn was very thankful for all of her presents. (And yes we made her pose for this picture)

And even though Kyle complains a lot about my picture taking. He still goes the extra step to take some shots!

And now she has to get started on her thank you cards

Parasports - Curling

Tonights parasport was curling!

The kids came prepared with helmets.

Katheryn knew that she could come with her helmet, but she might not be able to play. She was fine with that. And in the end she was able to play.

Para-curling uses a stick to push the curling rock. So it requires a lot of upper body strength.

And regular curling lets you slide across the ice (not falling down) and push a rock in front of you

In para-curling you don't actually sweep the rock in front of you (so that it goes faster and closer to the bulls eye). But that didn't mean Nick couldn't try this while we were there

They had a lot of fun going up and down the ice (and my feet got my frozen)

The kids got to play a couple of small games as well.