Conductive Education Camp

Nick has been going to conductive education camp for the last week and a half.

He races up this ramp and has been very excited to go!

 

We made goals for the camp. I said that I wanted Nick to work on standing and balance and try out the forearm crutches, and continue to use his canes. The camp has group activities and some of the same activities focusing on letting the kids learn about their bodies and have fun and always challenging them.

 

For mobility Nick came in with his walker, and then the walker went into the hall and when he moved around, it was with his canes. When it was time to go home, the walker came back  out.

 

I was hoping that they would get Nick interested in the crutches. I had talked with some of the conductors and they had mentioned that the crutches forces the body to lean forward, and they want more of a straight back, which is why they focus on canes. Which makes sense to me.

They did try, but Nick still didn't really like his crutches. Taking off the arm part seemed to help, but he still wasn't that impressed (and told me so).

They also worked on challenging Nick with his canes. Starting with his larger based quad canes, then the smaller base HUGO canes, and also modifying the crutches for a single 'cane', which he actually walked with.

 

I didn't realize how big the quad cane base was. And of course the HUGO canes give him less support which he is totally ready for.

The just kept challenging him to help him to realize what he is able to do

 

 

Every day has a different theme and learning and singing and doing. It's learning and creating. Learning big stuff and small

 

Being silly while still learning. And Nick loves silliness!

Working on standing went amazing! He was doing 20-30 seconds of unassisted standing (and loving it) by the end of camp. We have one of these horses at home we pulled out to play with as well.

There is lots of opportunity for standing

Like when you are building an igloo.

 We talked all about igloos and the arctic on the drive home. The cold and the sleighs, what animals are there, where you live and how you dress

One of the great things about conductive education is that it isn't about what one child is doing independent from everyone else. It is also about doing things together in a group, learning and working together.

Friday was Nick's last day and they had a lemonade stand. The kids helped to make all of the signs, and made the lemonade and then sold it at the side of the road.

Nick got to be cashier part of the time (I love this picture, he looks so serious). They made $139

All of the hard work tired him out!

 

I am so happy he had the opportunity to participate in camp this year and hoping to do something in the winter semester.

Getting ready for surgery

We are 16 days away.
I'm trying to get us super-prepared, to just do something

Sick Kids has some great information and resources for preparing your child for surgery.
Now that school is done I have been talking a lot with Nick about the surgery.
He has been very interested in learning about his operation, so I've been feeding this interest

Sick Kids has a video that they recommend watching



The only thing was that at the end the little boy goes home after his surgery. So I had to jump right in and tell Nick that he will be staying for a couple of days.
Nick really liked the video and we've been comparing what will happen to him with the boy in the video.

I was also able to get a colouring book from work (Thanks Alex!) about getting ready for your operation. It is not specific to one hospital or another so it works out well. Nick has been colouring a page a night and we've been reading about what to expect. I wanted a book to use to talk about the surgery, but also something for him to do.

There are a ton of resources on the Sick Kids page
http://www.sickkids.ca/VisitingSickKids/Coming-for-surgery/Pre-operative-appointment/index.html

It has a resource about talking to your child about the surgery, by age group. I have been trying to follow all of the advice

I have been telling Nick what to expect, as much as I know. I don't want to scare Nick, but I also want him to know what is going to be happening.

We've talked about going to the hospital and the waiting room. Nick has picked a toy that will go with him (Tyrone), and I have said that I will be with him and waiting for him in the waiting room.

I'm not sure if I will be able to go into the operating room with him until he falls asleep, or be in the recovery room when before he wakes up. But I've told him that I will be with him, in the hospital with him the entire time he is there.
We have talked a lot about the lying down on the table with all of the doctors with him. He doesn't seem to be scared and will talk about the sleepy doctor.

With the recent MRI, Nick hasn't been that worried about the sleep medicine, we have an old mask for him to play with and prepare.

Nick did this maze to visit all of the places in the hospital, and we got to talk a bit more about that I will be staying overnight with Nick in the hospital so I am always there. He was worried he would be alone.

One of the things that I am worried about is pain afterwards.
We've been practicing some breathing and distraction, but really I don't know how he will be until we are there.
Sick Kids had some resources about helping your child with pain, so I got some bubbles and games and I've printed off some of the pain faces so that we can work on labeling his pain (Katheryn is really good using big and small).

These are some other colouring book resources.

http://www.hopkinsmedicine.org/johns-hopkins-childrens-center/patients-and-families/your-visit/abcs-surgery/surgery-coloring-book.html
http://www.childrensmn.org/web/forparents/042161.pdf

I'm waiting for some last phone calls, all of our papers say if we haven't heard by 1 week before surgery to call a number, so I'm just waiting for that call. One is for the actual time of surgery (I'm hoping for 8am so we are less likely to be bumped) and the other call we are waiting for is the anesthesia phone consult.
We had our pediatrician fill in all of our papers and fax it in. We also had bloodwork done.
Nick was super fantastic with the bloodwork. I got a new hand-sized Michaelangelo stuffed keychain with sounds effects that I gave him right before the bloodwork (literally as we are sitting in the chair).
Nick didn't really like what was happening, and kept watching and saying 'no, no, no' and then 'ow, ow take the needle out' but no crying and he didn't pull away or freak out. He was worried about all the blood leaking out though.
He was so brave!

New Braces!!!

It was time for new braces again!

I asked for another orthodics appointment in May because I felt that they just weren't high enough any more. After our appointment in December when they said he still had growth, I wasn't sure if I had to make my case or not. But there wasn't any problem this time.

 

As usual I came all prepared with what design I... I mean Nick, wanted.

He has been on a Teenage Mutant Ninja Turtle kick lately, especially Michaelangelo ("my favorite colour") so I found a whole bunch of different options and Nick got to pick what he wanted.

 

There was no question about what colour to do the background (after the while background of our backyardigan braces I also specify something)
They came out fantastic!

Nick started showing off as soon as they were on him.
He stood there (bum not touching), and stood there... and stood there....

And he is standing so much straighter!

We have a wearing schedule right now (1 hour on, 1 hour off, then 2 hours on, 2 hours off) for a bit until he gets used to them.

Nick wanted a picture of all of his old braces

I think he has grown a bit!

Fun with Katheryn

Nick has started Conductive Education camp for 8 days.
It runs from 9-2, so instead of driving there and then driving home (about 70-90 minutes each way), I decided to stay around town.
We are lucky that it is right around the corner from the Ontario Science Centre.
So while Nick has been at camp, Katheryn and I have been going and learning (along with my dad for 2 of the days)

We've been checking out all of the different exhibits, and doing a different one each time.

There is so many different things to see and do and touch and run and climb and play and make noise!

There was a waterfall in a rain forest

The rock climbing was Katheryn's favorite part of the human body exhibit (why there is a climbing wall with human bodies, I'm not quite sure)

I took this picture to try to show Katheryn where Nick's spina bifida is.

Katheryn didn't know what these were...

And we also had to check out the mom and dad specific areas.
Like playing with an ultrasound on a 'pregnant' belly

 

Playing with the stethescope

 

And connecting electrical circuits

 

But she really enjoyed being a shoe-maker

 

 

We divided the science centre into 3 days so we got to check out everything. Katheryn has had as much fun with the Science Centre as Nick has had with camp.

 

 

And it also gives her some mommy time after we've spent so much time talking about Nick's surgery.

 

 

 

My Dad found this model of the digestive system and of course we had to look for the appendix (it is the grey thing right above his thumb... and it is upside down)

 

My Dad also came for 3 of the days, and I think that he liked the days with Katheryn as well!

 

But it gave us a great start to summer vacation, letting Katheryn play and get her hands on all kinds of toys and learn new things

Surgery count down

We have 3 weeks to go.
21 days

I'm trying to get all of our ducks in a row and worried that I'm forgetting something.

We've been talking about the surgery and trying to access all of the resources that are available.

There is a video through sick kids about preparing for surgery
I got a colouring book from work that Nick has been colouring and reading. He is really enjoying it. He is asking all kinds of questions and we've been able to talk about the surgery using the book. I didn't find anything on the sick kids website about a book, so I'm so glad I got access to it (Thanks Alex).

I have work all figured out, so I have my days off to be with him, we have Katheryn all figured out and going to daycare and then a fun trip with grandma and papa.
I went shopping and picked up a bunch of Teenage Mutant Ninja Turtle stuff for Nick. He is obsessed with Michaelangelo. So I have a blanket and a pillow for his bed and new PJ's for the hospital. I also got 2 seasons of the new Nickelodeon shows (and the 80's episodes are all online).
We also have bubbles, which are supposed to be good for distracting from pain.

Today Nick went for a pre-op appointment and bloodwork.
I had a toy I picked up for him (a small stuffed Michaelangelo keychain that talks) that I pulled out right when they were ready to poke him.
Nick was so brave. He was scared. He didn't want them to poke him with the needle, but he kept still and squeezing that Michaelangelo and soon it was done. He was worried that it would bleed afterwards.

I was talking with Nick about something afterwards when he isn't feeling well. He gives me a look and says "Why won't I be feeling well?" Oh, um because the surgery will make him feel yucky for a while and then he'll start feeling better.
I just want to surgery to be done so then we can start on the healing and feeling better part.

On the weekend when we were up at the cottage and in the lake, it hit me that Nick probably can't go in the water for the rest of the summer. He has been loving the water at the lake so much. But it is only half of one summer. In the grand scheme of things it will work out.

There isn't all that much to do to prepare right now. I have papers that say someone will call, and if you haven't heard a week before surgery to call them. So it is just waiting.
We have the date (July 28th) but no time.

Now I'm just paranoid that someone will get sick! So everyone knows to use our handsanitizer all day.

Also, now that we are so close to having the poop part of it sorted out. Nick has been leaking pee. Not quite sure what that is about. I asked about it in my SB group and the first recommendation was the mitronoff surgery (the one they suggested we do with the MACE). But we went through all of the options before considering surgery for Nick and I am not ready to make that decision in 21 days.
We will at least have a consistent urologist for about a year or so, so after the MACE we can work on the peeing stuff (I'm thinking botox might be in our future) but for now 21 days until surgery.