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, June 16, 2016

Operation Day

Today was surgery day.
Which meant leaving the house around 430 in the morning. Nick has started to get nervous for the last couple of days and has been getting irritable. He had been saying he didn't want to have the surgery. But unfortunately that is not an option.

In the morning he was in good spirits.


We were the f'irst ones to arrive (I take full credit for getting so prepared the night before). I was all packed with my own clothes, 5 days worth, clothes for Nick, food and snacks and entertainment for Nick.

Nick was happy that he had some time to play on the compputer while we were waiting.



He was all ready with his Captain America stuffy. He got an arm band as well so he wouldn't get lost.


And he 'had some smiles for the camera. But he kept a tight grip on Cap.


In fact Nick was so comfortable that he actually fell asleep while we waited. That didn't help to make my case to go into the OR with him. Anesthesia said no, that at 6 years old she didn't allow parents to come in.

Nick was ok with that.


While we watied. Kyle followed Nick's example. (He wasn't very happy I took this picture, but I thought that it was an oppurtunity that I couldn't miss)


I wore my Jedi Master Mom shirt for Nick (and added a Sick Kids Surgery Mom).


I was really good for most of the surgery. It was scheduled for 4 hours, but Dr Rutka said it would take about 3 hours. He went in at 8am, so we expected it to be around noon that he would be out. (Allowing time to get his ready prior to surgery starting).

Dr Rutka did come out and talk to us around noon. He told us that the surgery went well. That the cyst was between T7 and T10 vertebra. He said that he was able to drain it well. He made 2 cuts/incisions down the cyst. He told us the cyst was the size of a walnut/lime and that it was an arachnoid cyst (and it was not a syrinx).
He said that it released a lot of pressure on his spinal cord. And that 'It was the right thing to do'


And then it was waitingh for him to be moved into the recovery room. At 'noon ''he came and talked with us. At 1pm the computer said he had moved to the recovery room. And so we waited... and we waited.... and we waited.
And I was getting more and more nervous. Was he not waking up? Was he bleeding? Was there a problem? Why is it taking so long? We watched a lot of different kids names come up with instructions to "See Volunteer" and it was never Nick.
Just after 2 it finally came up. And we could go and see him.

When we got there he was sleeping. He did open his eyes and croak at us when we got there. He said he didn't have any pain. And then would wake up and say he had pain.
We had talked with anesthesia earlier about trying a PCA pump. So we explained it to him, he was able to press the button and then felt better. After about 30 minutes we went up to our room.

We was are staying on 5C, which is the neurosurgery floor (of course) and where Nick went after he was born. Our nurse is one of the nurses that Nick had when he was born and a nurse I went to Ryerson with. So that was really nice.

Nick has been sleeping most of the day.
He will wake up and say he has a bad headache, and his back 'hurts when he is lying on it. So they keep changing positions. The PCA is working well because it is giving him a continuous very low dose and lets him give himself extra when he needs it (I think about 6 times)


Most of the time when Nick is awake he gives us a thumbs up. And then falls right back to sleep.

But Daddy has been getting him to drink some (he is a horrible drinker at the best of times)


So far he is slowly but surely gettingh better. The headache we are told is normal as his body is adjusting to the change in spinal fluid. His back is covered in a dressing and he is moving his legs in bed when we ask him to.
It has been a very long day.
We will see what tomorrow brings.


Monday, June 13, 2016

2016 Awareness Video

I haven't been doing as much raising spina bifida awareness for June this year. (I've been a little distracted).

But I have updated Nick's spina bifida video. I decided to go with a new look and a new song



Here are a couple of sneak peeks!





 




Saturday, June 11, 2016

Ballet Time

It was time for some Mommy and Katheryn time. This time we were going to the Ballet.
We got tickets to see The Little Prince ballet with my best friend Lisa and her 2 daughters.

Katheryn and I decided to take the train down.
She was so excited to be on the train. We moved seats 3 times during the ride!
We played handman on the ride there. Katheryn had lots of fun (and worked on her spelling)


We also decided to walk up from Union Station.
Katheryn said that the city looked like Paris! (Except for the CN Tower of course)
I'm not really sure where this came from other than Monster High. But she thought it was great


The Ballet was fun, it took a while for Katheryn to get used to the idea of now talking/singing. And there was whispering back and forth to understanding what was going on at the beginning. We were in the back row with 1 row people standing behind us. Towards the end of the show a lady in front of me kept turning back and shhing the kids and giving them dirty looks because someone in her row was tapping on her purse. 

And we found out at dinner that someone standing behind us tapped my friends youngest daughter on the head! We found this out later. She was furious that someone would put intentionally touch her child. Yes it was a ballet, but you don't touch other people! Keep you hands to yourself!
The 3 kids sat in between us 2 adults and they were very well behaved. It was the adults around us that I was very surprised in.


Afterwards we all went out for dinner and got to catch up and talk.
It was a great day out, and we are already planning our next date!

On the way out we saw a number of homeless people begging on the road. Katheryn asked for a loonie to give to one man. She was very proud of herself that she could help someone who asked.

It was really nice to be out with just Katheryn and give her some time along. We will do it again in a couple of months (and it's even better that I promote her love a theatre!)

Thursday, June 9, 2016

Getting Ready... 1 week away

We are one week away from Nick's surgery.
I have been trying different things to get Nick ready. But first I wanted to look over my own resources. I had a collection of booklets and the Sick Kids video when we were getting ready for surgery 2 years ago.

I also reviewed my blogging from his MACE surgery to see if I had any tips or tricks
  • surgery day - http://riddingfamily.blogspot.ca/2014/07/surgery-day.html
  • night and bleeding/pain - http://riddingfamily.blogspot.ca/2014/07/a-rough-evening.html
  • recovery/day 1 - http://riddingfamily.blogspot.ca/2014/07/a-new-day.html
  • visitors - http://riddingfamily.blogspot.ca/2014/07/visitors.html
  • discharge - http://riddingfamily.blogspot.ca/2014/07/we-are-outta-here.html
It helped me to remember what had worked and what hadn't.

I had printed out another workbook, but Nick wasn't interested in it.
He told me "Mommy, I just had surgery (botox). I know what to do" 

So we talked a lot about what to expect. And I had some props


He didn't want to have his blood pressure taken. But was very interested in the stethoscope.



We watched the Sick Kids video again



We have talked a lot about how I will be with him the entire time (except  during the operation when he will be asleep).

I have been making lists about what to pack. Including clothes for myself for 5 days, some food (so I'm not eating all cafeteria food) and entertainment for Nick.
I don't really know how to prepare Nick for afterwards, because I am not even sure.

Katheryn has been there when Nick and I have talked about what to expect. She had some questions as well. We are trying to keep her routine as normal as possible, so she will come to visit on the weekend and will stay in school. She wanted to come and stay at the hospital.

It has been a long journey to being 1 week away. Starting in being taken by surprise March 1st and almost on the road to recovery.

Sunday, June 5, 2016

Katheryn's First Communion

Katheryn had her first communion this weekend.
I hadn't at first realized how elaborate some of the dresses are. Like little wedding dressing (which I guess it the point). As someone who never did a first communion, this was new to me. I have attended lots of Catholic masses and I know the concept.

Similar to my own wedding dress we wanted a dress that was simple, tea length (below knee) and twirly. Twirly was a must.


Katheryn was very excited. She had been learning about First Communion all year. She was one of the children who got to bring  the wine up. And she even answered one of the questions the priest asked during mass!


The priest went through some of the different ways to accept the Eucharist. I remember when we were kids they could only take it on the tongue. (I think some priests got bitten and now it is a choice)


Afterwards we got some pictures.
Nice and cute, kids together



 Funny picture with mommy (My favorite picture)


Funny picture with Daddy


The kids love doing the funny pictures. It lets me get all of the nice pictures