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!

Friday, July 31, 2015


We are starting to get into our clinic-heavy time of the year.
Our spina bifida clinic has been divided up into individual appointments, which makes a very long day into 2 long afternoons (which are on a Friday of course).

We had our appointment with Dr Church, Nick's developmental pediatrician the first week. It went well, he is doing great (of course). We talked about Nick's MACE, which is working well, and his bladder leaking, but our urology appointment was the following week. Dr Church (who we love, and who also has spina bifida) says that since we have bowel continence, we should try what we can for urinary continence. We are close, but not there yet.
We talked about the increased bracing, which we will follow up with, with orthopedics in the fall and neurosurgery next month.

We talked about Nick's diet and fluid intake, skin integrity and any other concerns. Nick has been getting so much better with drinking water, which has helped with the overheating he used to get (and switching from oral ditropan) Nick got to steal some of my iced cap after drinking his water.

We also talked about self care and independence. At 5, almost 6 Dr Church felt that he was old enough, with enough dexterity to learn how to self-cath. So that is our goal to be ready for the start of school. Nick was very receptive to the idea and solemnly told her that he would learn. My concern was about bladder infections. But she said that we can tolerate a couple of infections for him to get his independence (and we haven't had a UTI in a long time)

That was one appointment down. Everything is good.

I wasn't able to go to the next one, the urology appointment, but Kyle was there and I gave him a list of stuff that I wanted him to ask. To get that bladder leaking figured out. Botox is on the top of my list, or maybe increasing the gelnique?

So Kyle went with Nick and we came out with a plan. The 2 treatment options involve general anesthetic. Which is more invasive than I thought it would be. The options are putting in a bulking agent, to bulk up the ureter so it doesn't leak or botox that will relax the bladder to keep it from spasming.
Both are options that do different things for the same symptom.
The other option that we have is do some tests to see why we are still getting leaking. This, of course is what we want to do. Why treat blindly when we can try to determine what the best action is.
So in the fall we are going to do a VCUG and urodynamics study and then come up with a plan after that.

We also asked about increasing the gelnique (which is a bladder relaxant) but urology said that he was at the upper end of the dosage. So that's not an option.

I'm hoping we can have the tests scheduled in September so that we can get our plan in place. And then the last part of our clinic in the fall.

Tuesday, July 28, 2015

The SB way to measure growth

Forget ticks on the wall, this is how I can see how big my boy is getting!

Maple Leafs, Backyardigans, Pirate Mickey, Ninja Turtles (my favorite) and Avengers!

Monday, July 27, 2015

New Braces

So the day had come for us to see our new braces!
I am having very mixed emotions about these. It is always exciting to get new braces when Nick starts outgrowing his. But the recommendation is to increase his bracing to 2 KAFOs. Which means that he will have 2 braces that go above the knee.

This gives his knees extra support and will make his stance stronger and stable. It is what he needs.
The mixed emotions comes in that he does need more bracing, more awkward bracing, more bracing that puts him one step closer to not wanting to use it as he gets old, one step closer to using a wheelchair all the time and one step away from any possibility of independent walking.
Of course the truth of the matter is that this is not new, and I can see with my eyes that he needs to the extra bracing.

The day came to pick it up. We went to a new orthodics place connected to Grandview. It is Called Design Prosthetics Orthotics and we have had an amazing experience with them!
We had our appointment to pick up the orthodics. We went to their office and the kids played in their gym with all kinds of toys.
Then it was time to try them out!

The braces have some neat features!
The K part of the braces slides into the bottom. This gives us the best of both worlds. The support of the K, but the ability to have the shorter brace when we aren't doing much walking.

The knee also has the ability to lock, which would make him much more stable and functional in specific instances, but still maintains the ability t o bend and be unlocked.
Nick liked them!
I can't believe how tall he is standing! And straight.

Our Orthotist, Eric, still had some adjustments to make, but the workshop was right in the office.
This is different from when we got our orthodics from Grandview before. And any adjustments had to be made out of the office and it would be a couple of weeks to be returned to us.

But Eric knew what he wanted the braces to do and could make all of the adjustments for us today

While we waited we got a tour of the workshop

This is a copy of the cast of Nick's legs and knees that was done last month. It gets mounted so that they can work with it.

And a bunch of other samples that they are working on

He shows us the material they use to make the braces

And samples of different colours. They had a sewing station as well

And finally we checked out the grinder. Nick got to turn it on

This is an example of one of the rejects

Then it was time to test them out again!
And see Nick standing up so straight!
No more knees turning in and feeling unbalanced. Nick felt very comfortable in them

Everyone is very excited with the results!

And the smile on both of these faces helps to over-ride my negativity.
And seeing him so stable and upright actually makes me more hopeful that he will do anything he wants!

Saturday, July 25, 2015

Learning Independence

We went to the first half of our SB clinic last week and met with Dr Church, Nick's Developmental Pediatrician, who we absolutely love!

Everything is going well, but we left with a couple of goals. One was for urology (and I will update that next week). But one of our goals was for Nick to gain more independence.

And that means cathing himself.
Let me step back for a second to explain what this is (just in case you don't know)
The nerves affected by spina bifida include the nerves that go to the bladder. Nick's bladder isn't able to empty itself (except for spasms) and we have been emptying it for him with a catheter. The nerve damage also means that he doesn't feel his penis or his bladder. Which is good in that catheterization doesn't bother him at all.

This is something that we have been trying off and on. We were making some headway in January where Nick would actually touch his penis. This might seem very basic, but it is a very big deal for us.
You know how you hear that boys when they are children are always touching themselves? Not even a little bit. He doesn't feel it is part of his body. When I try to get him to touch it, he makes a face and scrunches up his fingers like he just touched something gross.

In January we started slow. But when he stopped wanting to help I didn't want to push him.

When we saw Dr Church she thought that it was time to seriously try again.
Nick has the dexterity to do it. We talked to him about and he said that he wanted to learn how to do it. I was concerned about a bladder infection, but she said we could tolerate an infection for him to learn how to cath himself.

It took 2 days (4x a day) and Nick could do everything himself. Start to finish. He needed a bit of help organizing himself. And I kept having to stop myself from helping him too much.
Nick's aim isn't perfect (and makes me cringe sometimes) but he wants to do this! But he does get frustrated if he keeps missing.

I am amazed at how quickly he picked it up. But I guess he has seen it happen at least every day for 2081 days... That is lots of time to learn.

Nick was so proud of himself when he did it "All by myself!"
And I was so incredibly proud of him as well.

This is also a great step towards independence. It means that when he is at school his EA can assist or observe his cathing, while he can do it all himself. One step to be more ready for grade one

Monday, July 20, 2015

Minion Tires

So if you have a bunch on old tires hanging around your cottage, and want to make something crafty this summer, hmmm what should you do?

Well, my mother in law and I had an idea! (Facebook/Pintrest may have helped too)

So we collected the 7 best tires and cleaned them 

We got some special primer that would stick to tires, and be good for outside.
We put a strip of tape around the middle of two of them (covered one of the centre treads)

We stacked them up so see how they would sit

The kids took some time out to watch us

Then we painted them and let them dry. They needed 2 coats to cover them, and we had to paint-brush paint. No spray paint.
We used regular house paint that would be used outside. We painted them separately, and then stacked them up to get all the middle parts. Only the tops needed to be painted fully, the middle ones didn't need everything done.

Then we stacked them up so we could get a good view
And you could see what we were making

The little one had 1 blue and 2 yellow, the larger one had 2 blue and 3 yellow. The bottom yellow is painted with blue for the overalls.
The tape is removed to show the black underneath. And we taped on some eyes (to practice) and a mouth for the big one.

The next day we did some touch-up and finished the eyes (and the pupil is actually a bolt holding it in place).

It was a lot of fun making our minion tires. The kids had fun watching us (but they didn't help, this was a grandma-mommy project). Now they we have done some of them (and have more tires left over) we might make it a project for the kids the next time.

Saturday, July 11, 2015

Cousins and Cottaging

This summer has started off with a lot of fun and crafts! And time at the cottage.
I think we are spending almost all of our time off up at the cottage (the house is a bit of a mess, but the kids are happy)
The kids got together with their cousins to make some art!

This was the finished product.
The idea of it was to cover it with varathane and keep it by the campfire. Good idea in theory, but the varathane wasn't enough protection and a lot of the paint washed away. But everyone still had fun. And we will have fun the next time we try too

I think that the kids are enjoying their summer vacation!

It was raining, so we had lots of crafts to do as a back-up

And we made some cone-smores in the oven (instead of the promised campfire)

Great idea (thanks facebook/pintrest)
Fill a waffle cone with chocolate chips and mini marshmallows

Wrap it all with foil

Then you put it in the over for about 20 minutes o that everything melts (at about 300)
(I did find out that if you put it into the fire, put it on the outside and let it melt slowly, instead of putting it directly into a burning flame and opening up a mass of black sooty mess)

It was a huge sugary success and the kids loved it!

Finally the sun came out and we were able to have fun in the water!

The lake is shallow, so Nick can actually walk around using a tube as a water-walker

We had some beautiful sunsets

And then some campfires

With sparklers

And a couple of mommy-selfies

The kids didn't want to go in. They said that they weren't tired... until they fell asleep

As long as the sun was out everyone spent the time at the lake

The kids were playing super-hero'

And we made up a water game of hockey-golf-soccer

Or was it basketball?

In between all of the fun we still got Nick to do some work and try out his crutches.
He is slowly starting to get more comfortable with them

This is only the beginning of the summer! We are expecting lots more fun for the kids over the next 2 months!