A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, April 28, 2016

I don't feel my feet

This weekend I was catching up on all of my blogging.
While doing this, and writing about our neurosurgery appointment last month I was thinking more about what he told us. And had more questions about what this was and what it meant. He never used the word syrinx, so I am not sure if this is what it is or not.

I was also thinking a lot about how surprised I was that something was wrong.
It really brought back feelings of being all alone in a doctors office and being told there was something wrong with my baby. (Because of course both times I didn't think of having anyone with me).

The thought of this cyst and the potential for a spinal surgery has been on my mind for 6 weeks. I feel anxious and on edge all the time. My chest feels light and heavy and tingly all of the time. I just feel on edge. I want to lay my hands on him and heal it. I don't want anything to be wrong.
How can something be wrong when he is still his crazy-happy self!


Then Nick started complaining that his feet hurt so we took off his braces for a couple of hours on the weekend. And later that night he says to me "Mommy, I can't feel the bottoms of my feet. I used to be able to feel them, but now I can't".
And my heart dropped.

I tested. Running my nail along the bottom of his feet and got absolutely no response.
This is new.

So I emailed his neurosurgeon about my worries (I actually emailed his twice, asking some additional questions, and then again when Nick told me about his feet).
He called me and we have an appointment in 2 weeks.

I am happy we got an appointment, but I have no idea what the plan will be. Will it be surgery right away? Wait for surgery? More tests?
I am not sure. But now I want some answers and a plan.

I hate worrying all of the time. It gets better right?
(My parents say no)

Monday, April 25, 2016

He's Famous!

Our SB&H Current magazine came today and look who is on the cover!
I took this picture at our walk last year. I think it's a great picture!


Nick was excited to see himself on a magazine (and Katheryn was a little bit jealous that she wasn't on a magazine).


I was very excited when they asked if they could use one of Nick's pictures for the cover.

If you want any more information about the current, or to see what was in this issue then you can check it out here

Friday, April 22, 2016

Katheryn loves her dog

Rory has been doing less nibbling and so Katheryn has really started cuddling more with Rory.
I think she is in love


But she is still a puppy who wants to be in control



Tuesday, April 19, 2016

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

Friday, April 15, 2016

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)






Tuesday, April 12, 2016

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).



Sunday, April 10, 2016

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

Wednesday, April 6, 2016

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.



Tuesday, April 5, 2016

A Birthday Girl

This little girl turned 8 this week!
This smart and sassy girl knows exactly what she wants and will do it with a smile. Especially if she knows she isn't supposed to do it. I see more than a little bit of myself every time I look into her big brown eyes.


She has so much energy and is always on the move. Her favorite colour is rainbow. Actually the more colours the better!


She can also be very serious and shy when she wants to be, but it usually doesn't last very long.


She is brave and compassionate, and more than a little funny. She loves to sing and dance and sometimes just likes to be LOUD!


She loves her Daddy and her family! She wants to know that I'm thinking of her at work, and always requests me to draw her a picture.


She very often will complain "Mommy, not more pictures" Or "You are always taking pictures". But she will also pose and say "Mommy take my picture" if she is doing something really cute or funny


I think that she is growing up much too quickly. While I just want her to stay my little girl forever, I also look forward to watching her discover herself and grow!

It's hard to image what life was like before this happened!