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!

Monday, April 28, 2014

Fun Day

Just sitting around having fun!



And trying out a new toy!
The Radioflyer Cyclone


It is avaible and accessible for Nick. It moves using your hands and rolling the wheels. It spins and twirls and the kids love it!


Thanks to Great Auntie Wendy and Uncle Mike for picking it up in the States for us before it came to Canada!

Saturday, April 26, 2014

Aid4Alej

We went to a fundraiser this weekend. Raising money for a special little girl we have known for a number of years. Alejandra and her mother Antonella have joined us the last couple of years for our spipna bifida walk, we have done Conductive Education together as well as meeting in the Spina Bifida clinic baby group. And they will be at school together next year.


This is Antonella's second annual Aid4Alej event to raise money for stem cell treatments.
There were alot of fun things to do.
Katheryn was very excited about the face painting... and so was I



Nick was adamant that he did not want his face painted. Until the end of the night


It looked fantastic! 



There was music, but the kids were all over dancing to their own beat
After a bit of hesitation, Alejandra, Nickolas and Katheryn were all over the place together


There was also a photo-booth with costumes that Katheryn was excited about.

 
And live music by Danny Lamb a SB&H ambassador.

 
Katheryn got raffle tickets and picked out everything that she wanted.


And she guessed how many popcorn was in the bag!
And won!
Over 3333 kernels

 
We stayed until almost midnight, when the kids were turning into pumpkins



We went between the walker and wheelchair when Nick started getting tired.
As usual they were party animals and we had a lot of fun!


We even got to catch up on another SB family we haven't seen since baby group!

Can't wait for next year's Spring Fling!


Thursday, April 24, 2014

Resilience

I know kids are resilient, you hear it all the time when they are hurt. But to actually see it.
This is Katheryn's x-ray. I actually winced and said "ouch" when we followed up in the fracture clinic and it was up on the screen.
 

It's been a couple of days in the sling, and we keep trying to get her to rest the arm.
Fracture clinic went well, arrived an hour early and were second in line once they opened (we would have been first, but an old couple budded in line).
In and out in 30 minutes!


Since we took the whole afternoon off, we decided to go to Walmart.
We need to upgrade Katheryn's bike this year so we were sizing some. Katheryn didn't understand why we couldn't just buy one right now. She was good riding one handed.


Resilience... the ability for the body to recover quickly from illness, change or misfortune.


Now to keep her resting and letting it heal

Tuesday, April 22, 2014

Broken Wing

Katheryn fell off our bed Saturday night/Sunday morning. It stands 3 feet high, and usually the kids will fall asleep in our bed, especially when I'm working nights.
Katheryn had wanted to sleep at the foot of the bed, which isn't unusual, and she's never fallen off.
But she did.
 
When I got home in the morning she was fine, she said it hurt and had ice on it, but it wasn't swollen, she could move it and it only hurt a little when I touched it. She was all calmed down from the night (she was very upset when it actually happened).
 
So mommy-nurse kicked in...
She can move it, still playing and having fun (keeping her arm still), not swollen. We will just keep an eye on it, it wouldn't be broken...
 
This picture was taken with Katheryn showing off the dress that Jennifer (her daycare provider) got for her.
Does she look like she has anything broken?
 

So I was trying to decide if we should go to the Emergency Department...
I know that Emergency Departments see a lot of people who are not necessarily emergencies. But we were in Bowmanville, and it usually isn't that busy, she wasn't improving and it had been over 36 hours...
So we went

2 hours in the waiting room. With Katheryn playing and singing "Let it Go" I could feel people looking at me like I'm crazy for bringing her. If it was a 4-6 hour wait, I might have agreed with them
And even once we got a chair in the back, still another hour of waiting.


 She was getting tired, but obviously not in pain.
Then we got some action...
Saw a resident, saw a doctor, went for an x-ray, walked back to the unit and got the result (and I saw it on the x-ray) that yes, her collarbone was broken... all in 20 minutes.

The nurses were very attentive when it was identified that yes it was broken, and traded in the cotton triangle sling they were sending us home in, for a colourful and more effective one.
(Not that we got lousy care before just, it was just stepped up a notch)


I was very proud of this girl! First broken bone, x-rays, emergency room and no tears!

And thanks to Lakeridge Health in Bowmanville for their free wifi, quick visit (3 1/2 hours is quick) and digital x-rays that meant the doctor had the results before we even left the room!

Sunday, April 20, 2014

Easter fun!

The Easter bunny came!
 
There were eggs hidden throughout the house


Katheryn zoomed through the house finding everything


We made a corner for Nick and Kyle to search together.


It's challenging finding places to hide the eggs that are both accessible for Nick to find and not to easy. And of course fun to find as well.
I think it worked... Looks like they had fun!

 
(Katheryn fell off our bed this morning, but it doesn't seem to be stopping her)

Monday, April 14, 2014

Decisions, decisions

Kyle and I have some decision to come to and make for Nickolas.


Nick's potty issues have progressed over the last couple of years.
Jan 2012 - sitting on the potty, and actually sitting and a potty instead of just lying down
May 2012 - trying suppositories to get things going, every day routine
April 2013 - starting the enema routine nightly
July 2013 - buying underwear and bought a whole bunch of continence pads (haven't used that many of them)
August/October 2013 - travelling and still completing enema routine nightly
September 2013 - starting school
December 2013 - re-evaluating and changing enema solutions
March 2014 - Downtown for March Break with Daycare group, poop-blow out and completing the day wearing no pants
I returned to shift work, and consistent timing of enema routine becoming difficult
April 2014 - Trip downtown at Aquarium, poop-blow out x3, went through all the clothes we brought with us

We've been steadily moving towards the next step. The surgery step.

I have known that this would be where we would probably end up. But I was never ready before. I wanted to try all of the other non-surgical options and know that we tried before taking a more invasive step.

But we've spent a couple of years trying different things and we are still having difficulty. Nick has also started to notice things more. He has been saying that he is not friends with a little boy at school anymore because he called him a baby. And last week he said that he was called a baby because he is wearing diapers.
And his face screwed up and he started crying.
I did not start crying (even though with him in my arms for a big hug I really wanted to). But in my mind... and heart... the decision was made.


We have tried and tried. We spend 60-90 minutes every single night/evening, no matter where we are or where Nick would rather be, to get Nick clean and it still isn't working!
So I have done research, the doctors have recommended it, he is an appropriate age. The surgery will help to clean him out, effectively.
And Kyle is in agreement too.

Nickolas says he wants to be out of diapers. He's not at an age where he would/could make a decision for surgery. But he's also at an age where he will recover quickly and won't remember the hospital stay. And young enough for kids not to be too mean





But what is the surgery?
I have talked about it on this blog before, but here it is again.

This is the digestive system

Right now what we do is a retrograde enema. It is a bottom-up approach, so we put fluid in 'the bottom' and push fluid up through the colon and collect and flush out the fluid and poop.

The surgical options allow a top-down approach. So if you want to flush out the colon, you start with the colon, put fluid in and flush out the fluid and poop together. There are 2 different surgical options.

The caecostomy button

 Also known as cecostomy (I'm Canadian so we like sticking 'a's all of our spaellings), This is plastic tube that it insertered through the abdomen into the cecum of the colon and stays in place with the curly tail. It can be done with local (freezing) anesthetic and is more of a radiological procedure than a surgical one.


The colon is flushed through this tube. and a plastic button is on the tummy.


This is a pdf patient education package given to families in McMaster Children's Hospital that helps to explain it. It has a faster recovery and shorter hospital stay.
But it is a plastic-foreign body, and the tube will need to be replaced (the Hamilton document says yearly). This is what our nurse recommended last year when she talked about, it is faster, less invasive with less recovery. But it is also temporary and needs to be replaced as well as a button sticking out of the belly.
When we talked to the urologist, who is also a surgeon (who of course knows and recommends surgery) did not recommend the button because they said it is more of a trial and error to get the tube into the right place, even guided by ultrasound and it might take multiple attempts to get it into the correct part of the colon.

The MACE

This stands for Malone Antegrade Coninence Enema (or just plane Malone) and it is surgery. The appendix is attached to the colon.


With the MACE the appendix is brought to the belly button to create a stoma or a hole in the belly button that will allow you to put fluid into the colon. There are valves that allow catheterization of the appendix with the fluid, but poop doesn't leak back out.


There isn't any plastic button, and no plastic tube. For the first month or so a tube is left in so that the stoma/hole won't close (like a ear-piercing). The surgery can usually be done laproscopically, so there isn't any large scar. (and I asked, it won't interfere with the end of the shunt tubing)


 But it is surgery. From what I've read it takes about 2 hours under general anesthetic. There is a prep that takes 2-3 days (and may require hospital admission) and there is more recovery involved. And with surgery there is pain and recovery involved. I have heard that the recovery is hard. Pain control options (i.e. an epidural) might not be an option because of the spina bifida, so a PCA morphine, which isn't as effective would be pain-control of choice. The hospital stay is about 5 days or so.

There is a pdf patient education package that helps to explain. I also found another pdf (that I can't download or print without paying money, but I can view) about parents opinions and experiences with the MACE, and spina bifida parent groups with lots of information and experience.



I am still worried and nervous about making a decision to hand my child over to a surgeon and the recovery involved, but from what I have read and heard from other parents it is worth it. I think that it will give Nick freedom both in the bathroom and socially.

We have our spina bifida clinic in a couple of weeks, and we'll have that conversation and get ready to take these steps. Even timing, we are thinking this summer. I am not sure how flexible timing is (the surgeon we talked to last year made it seem that it won't be a problem to find a time that works for us). Our July is full of camps, August is clear and we don't want him to miss too much school in September...

I'm taking lots of deep, cleansing breathes. But I really feel that the timing is right for this decision.



Sunday, April 13, 2014

Aquarium

To finish off Katheryn's birthday we let her pick a place to go for a family party. And she wanted to go to the new Aquarium that opened up last year.
 
It was BUSY!
It was interesting and beautiful, when you could get close enough to the tanks...
There was one way in, one way out and a very, very long line up, so you and every single other person who wanted to visit the aquarium that day were all squished into the same space.
 

 
We had Nick in his wheelchair, so he spend a lot of time staring at other people's butts, until we could get to the tank and told him to ooh and aah over what he was seeing.
He didn't enjoy himself...
 
But ooh, ahh, octopus!
 


Katheryn had more movement and really enjoyed herself
She also went on Kyle's shoulders so she could see everything over people's heads


The first section was dark, and Nick actually fell asleep.


We got to the tropical fish section and this was very well organized and not the squished-busy section that was everywhere else. There was a moving sidewalk on one side so everything was close up to the tank, but also moving. The other side was just a hallway that you could step off if you wanted.


You got to be up and close and see everything


It was very freaky having a shark with big teeth swimming right directly over your head.


Nick woke up at this point and really liked it


The sharks really caught his eye


In the centre of the aquarium was the kids zone.
You can get up close and personal with more fish


[K with fish]


They also had a tank with sting rays you could touch (hard ones)
Nick was very interested in splashing in the water and didn't really want to touch them. As he was splashing one of them came right up to him. That was it, he was done.


We got separated from everyone (probably from spending 30 minutes in the bathroom - which was very accessible)
And so it was Nick and me exploring all of the cooler fish!


This one was my favorite


Can you see the sea horse?


And there was a floor to ceiling tank full of jellyfish.


The tank would change colours and the jelly fish would change colours.


 (these are giant jellyfish)


At the exit there was the top of the giant lake (with the sharks you can see).


Katheryn got to pick anything she wanted from the gift shop. A rainbow Hello Kitty was the obvious choice!


Katheryn wanted to carry her bags, and she is perfecting her little-lady pose!