First steps!

The day finally came.

The day that I knew would come once Nick gained confidence in his ability.

With his higher braces and some parent coaching to take it one step at a time, he did it! Independent steps!

Of course I had to get a video and make him do it again

I knew that he could do it!
Nick is so proud of himself as well. As long as he stops and stabilizes himself I think that he can keep going. But of course he gets excited and just wants to get there and just goes.

Being able to take these 5 steps opens up new things for Nick.
He can do a lot by reaching and walking and holding onto things, but by taking independent steps and being stable enough to take those steps opens up possibilities!

I am so excited!
6 years and his first independent steps!

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

Flushing... the real deal

We had our follow up clinic yesterday, 2 weeks after the MACE.

The clinic started off kinda of weird, when the resident came in to see us and seemed to be surprised that we had been discharged from the hospital and had surgery. Um, yes that is why we are here...

I probably should have told him to turn around, read the chart and then come in and start again...

But once our actual doctor came in (with the resident) we got all checked out. Everything is healing well. There had been some discharge that I wasn't sure if it was an infection, but they said it was all healed nicely.

We will follow up again in 3 months.

Then it was time to take the foley catheter out, and show the nurse that we can do it ourselves.

I have the advantage as a nurse (and catheterizing 4x a day for the last 4 1/2 years) so I wasn't that worried about it.

I gave Nick my phone and he took pictures the whole time.

I have about 100 pictures from his perspective.
But I was able to take out the catheter, put another back in, flush it and we were done.
It didn't bother Nick at all

Tuesday night when we got home, it was time.

No more tubes were left in.

I got all of my supplies together.

The foley catheter, 60cc syringe for the initial flush, lubricant and the tube flush. 

The tape was recommended to use instead of blowing up the balloon in the catheter to keep it in place.

They said that they had one patient where for some reason the catheter twisted back into the small intestine, and when they blew up the balloon it caused pain.

The first night we taped it in. I didn't realize how much Nick moves around on the potty until we needed him to stay still. And the catheter came out. Nick wasn't very happy that his lap started flooding with fluid, but it didn't hurt him. And it was a lesson learned.

I've been using the foley balloon (why else use a foley and not a straight catheter?) and Nick hasn't been having any pain, and it hasn't fallen out.

So to add to my list above, a little 3cc syringe to blow up the balloon. After the catheter is in, blow up the balloon, and remove the syringe. When it is time to take the catheter out, attach the syringe, deflate the balloon and take the catheter out.

Another thing that they recommended was to push the glycerin in first. That will irritate the bowel to work the fluid in. So I mix 10mL of glycerin with 10 mL of normal saline, draw that up in the syringe and push that through. 

Nick really wants to do that job.

It was recommended to go slowly when increasing the volume of the flushes. So we just increased slowly over 2 weeks until we get to 350mL (+10mL glycerin) on Friday. I make the normal saline myself (using tap water) and then it goes in over 15 minutes.
Nick got some cramping at the beginning, but it seems to have settled. I slow it down if he gets cramping, but don't go too fast.
It has been so much more convenient for me, and has gotten Nick interested. It is also faster.
He sits on the potty for about 45 minutes, which is much better than the 60-75 minutes we were at before.

Nick has been a bit hesitant when I put the catheter in his belly button. The lubricant is cold and it feels funny. But it doesn't hurt and he will let me do it.
In the morning I put the catheter in (no flushing) and at night the catheter goes in and we flush. We put it in twice a day to prevent the hole from closing (like pierced ears).

Everything is going so well so far.

Walking, Walking, Walking!

He is really walking!

I decided to give Nickolas a bit of a challenge when we went to a party yesterday.
We brought the walker in with us. AND we made him walk with it.

Made is a bit of a strong word.
Nickolas wants to walk with his walker now.
But usually before it was a hassle to bring the walker in, when we could just carry him to where he wanted to go to play with the other kids.

So I guess I should say that we made ourselves bring the walker.

The challenge - walk, in a crowd of people, people you don't know, in grass, and over bumps.
Challenge accepted!

It was 16 months ago that the idea of a walker was first brought up.

And 1 year ago that we tried out, and then brought home our first walker.

I remember I had dreams of Nickolas walking in the walker for Halloween. But even though things didn't move as fast as I had dreamed Nickolas still moved forward slowly, but surely.

We kept changing and challenging him.

And we worked with what he needed because I had faith that we would find the one.

Just before Nickolas turned 2, he took his first independent steps in the walker!

But the journey was not without hard work and some tears.

And the flexibility to change things up when we hit a plateau, or just wanted to find something that works.

And in April we had our very own walker!

I learned that we had to take some breaks from the walker. And I learned that I couldn't push it on him. But also that I could make my own adjustments - like when I put on the swivel control, so that even though it was harder for him to move, it gave him the ability to control where he was going.

Nickolas finally realized that he could do it!

And that's my recap of Nick's walker journey!

"I did it!"

That is what Nick told me when he was walking in the backyard with his walker!

It was also what he said when he started walking instead of crawling to get around the cottage this past weekend!
"I did it!"
I've never been so happy!

Nick got to be up and play with his sister and cousin, on his feet. Eye level
Beleive it or not, he liked this - this was him 'running' in the bubbles.

Nick is starting to learn he has the ability that I have beleived he has had for months!
But he is definately still a mommy's boy!

Thought I'd share this clip - Nick going down a wheelchair ramp for the first time!

Spreading our fins!

Nick has been exploring his independence

Swimming/crawling by himself in the lake

Taking a spin in the boat (while docked)

Playing on the boat

But the best part of Nickolas finding his independence - is that he has realized that he already has the tools he needs to work with his ability to get moving.

Instead of crawling to go where he wants - he started to go to his walker, and then walk to where the watned to go!

A story of a wheelchair

  Nickolas got his set of wheels this week.

It is orange, and is brand new. It has brakes that work, spolk covers, higher sides so Nick doesn’t’ slouch and stroller handles. It also has cable ties or something for riding in the bus (I'm not quite there yet - but we're still looking at 2 years before we get there).

Nickolas wasn't too sure about what was going on at first.

I personally thought it was so cool to see with without the wheels on!
The orange looks more red in the picture. But the colour is great!

Nickolas and I had a whole conversation about his new wheelchair.
I told him that we were picking up his new orange wheelchair.
"No blue"
"No orange"
Reaching down to touch the blue loaner chair "No blue"
"Well, tough honey, your new chair is orange"
(But your walker can be blue)

A little bit of blackberry distraction while they made some final adjustments.

Nickolas quickly found the joy in bouncing hi wheelchair off of his father.

Mommy, I'm going to get your next!

And we were done.
On our way home with Nick's very own wheelchair!

I was so excited!
Kyle was so exicted that it had a tall stroller handle that was easier on his back!
I never thought I would be this excited with our very own wheelchair.

On the day of Katheryn's party we decided to bring it into the house to show everyone how he is using it.
Nick ha rediscovered his Build a Bear in the wheelchair - he's always moving it in and out and wanted to play with it while he was in his chair.

The weekend was so busy (Easter, birthdays, birthday parties and family dinners) we didn’t get a chance to take the chair out anywhere. So I was OK with it being in the house quickly during the party.

We didn’t go anywhere Sunday (stayed at home with easter eggs and chocolate) and both Nickolas and Katheryn wanted to roll around in the chair.

Kyle and I talked about letting Katheryn use the chair. I didn't want her to see it as a toy, Kyle thought it would be a good idea for Nickolas to see Katheryn in the chair, that it was fun to use and how to use it, that it will move without anyone elses help.



Kyle's reasoning won out - he was right (yes that is now in the permanent blog record).

I’m not sure how I feel about having the chair in the house.

OK I lied. I do know how I feel about having the wheelchair in the house. It is one thing to have Nickolas at 2 years old be in a wheelchair when we are out in public – it’s a stroller replacement, it is his tool for independence, when we are out of the house.

In the house he is looking at independence another way. We are working on his walking, using his walker. I don’t want him using his wheelchair instead of walking with his walker, or even holding our hands.

Even though Nickolas using the wheelchair in the house gives me a heavy heart, I can see how it has provided an opportunity for Nickolas to get to know his chair. In a way that he can’t when we are out and aobut and have tasks to do. When we don’t have the time for him to explore. And when I am right there.

In the house he has freedom, in the house he has time and opportunity to explore his abilities in the chair. It doesn’t hurt when it gives Nickolas a vantage point that he hasn’t had before. The opportunity to get into more trouble.

He enjoys it.
I hope not too much, because that sucker went back into the car this morning.
But I love to see the look on his face as he realzies the full potential of what being in a wheelchair gives to him.

Take That spina bifida!

Thought I'd start off with a bang!

That is Nick with his new walker - the newest one (and the winner).
And that is Nick walking independently with it. I'm not helping his feet or moving the walker. He is doing it ALL BY HIMSELF! And we were all there!
And he was happy!

So Take That! Spina bifida!!

Of course it had to happen when Nick was wearing his new Take That! Shirt. We wore it to our spina bifida group and showed it off. It was the fundraising brainchild of Colleen (Nate's mom) along with the facebook group.

Big Boy (tear!)

I know a little boy who is going to be 2 years old soon (2 weeks - eek!)
So Nick wants to show you what he got!

And when I see him on Katheryn's bed and how much he loves it, we knew that it was time.
The time for the Big Boy Bed.

You know, the one where they have a little more freedom. You can't just pull up the side rail and walk away, tell them to sleep but know that he won't climb out of bed. Nope, Kyle and I thought it was time to give Nick a little bit more freedom. To show him that he could climb out of bed if he wants to. A little independence.

Sometimes I feel like I'm the only mom who wants my kid to get into trouble. Yes climb out of bed in the middle of the night, yes grab that toy you want, yes hit your sister back (oops did I just write that).

So the Big Boy Bed is kind of major.

Katheryn thinks the bed is great! She gets to climb into bed with him, she gets to bounce on the bed with him. And he gets to bounce on the bed with her!

We came up with the best idea! How to let Nick enjoy his new bed, but still give him the freedom to get in and out with his limited mobility?
2 levels of bed. The top mattress is a twin/single. Which gives Nick lots of room. Then the foundation or boxspring is a double/full. So Nick's bed has a step! A built in step.

We actually had to order the mattress and boxspring separately so when we had the mattress we just put it right down. But we got the boxspring all set up - it looks great!

We are working on getting him to back down the step (with the plain mattress he was going down face first). And I'm hoping that the conductive education and working with the plinth (the wooden table) he is getting comfortable pushing down like that.

So far, so good. Nick has been sleeping well in it. We even let him sleep in extra the first morning so that he could wake up and get himself out of bed!
He's such a big boy! (tear)

That word

They have used that word with my child. They are starting to think that it is time. It caught me completely off guard.

A wheelchair.

For my child.

My child in a wheelchair.

Yes I know why, I do. Independence.

But it’s still a shot in the gut, a slap in the face, a slewfoot. Can we give penalties and take 2 minutes? (Yes hockey season has officially started again – and my Maple Leafs are 2 – 0).

I see other kids in wheelchairs and the independence they gain. They don’t have to be with mommy all the time, they want something over there? They can go and get it. I know he will love it. I know it will be great for him.

I know all of these things, but for me, today, right now. It’s a wheelchair. For my child.

So let’s step back a sec.

Where did all of this come from?

On Thursday, we had our mom and baby sb group. We came home with a  castor cart (sorry, his jaguar). But before that Nick had been fussing, he is cranky and not feeling well. So I put him in his stroller hoping he’d fall asleep.

Now, Nick is a big boy. He is tall, he is big for his stroller.  He is also almost 2 years old. Do 2 year olds want to go wherever their parents want them to go? No way! They want to do things their own way, make their own mistakes and figure things out, on their own.

So put this all together, and the OT and PT at the baby group felt that it was time.
I am so lucky that I was a little pre-warned. Another mom heard what they were saying and warned me. Our group is 1 hour of parents, kids and therapists, then 1 hour of the parents leaving to talk about a specific topic. So at the end of the group when we discussed that when we meet next month we’ll look at getting him a wheelchair (it just makes me cringe writing that) I was a little bit more prepared. No tears, no sad face, I could put on my analytical, I understand and agree, face and not my emotional, mommy screaming not yet, face.

It was one day at group this year (When Nick was 18 months old) that it even occurred to me that he would need a wheelchair as a child. In my mind I was thinking 3 years old. That was my plan in my mind. That was my timeline.

I spent the entire drive home going over and over with myself why this is a good thing. Why this is actually a blessing. So I was prepared when I brought the topic up with Kyle. I was prepared when he asked the question that has been haunting me.

“Doesn’t it feel like we are giving up on his walking?”
No. Never.

I will Never give up on his walking. This is not about walking. We will still work just as hard on his walking, his walker, his mobility. We will concentrate on physiotherapy and conductive education and anything else we can get our hands on just as hard.
But, this is about his independence. Those times when he is in a stroller, just sitting there, being pushed around by mom or dad. When if he had his own wheelchair (smaller cringe) he didn’t have to rely on us. It would only be in replace of the stroller. It would not be in the house.

When we go to the mall, when we go to the park, when we go to the zoo. Can you just imagine how much fun he will have at the zoo?! Going where he wants to go, instead of being pushed around all day in a stroller or a wagon. I can’t wait!
Wait a second, did I just say that? I can’t wait to get him a wheelchair. I can’t wait for a wheelchair to give him independence. Did I just type/say wheelchair without the cringe? I want what is best for my child, and even if I have some hold-ups about a wheel chair – he won’t. He won’t see it as something negative (unless I tell him it is). He will see it for what it is – freedom.

Here are some kids that have really inspired me. And I don’t think I would be so calm about the wheelchair if they hadn’t gone first.

Kingsley
Carson (he is just a day or 2 old than Nick)
Alex
And I can look at some of the older kids
Like Caleb
And Madi

I am missing so many more. But for family and friends who want to see what a child in a wheelchair looks like, can look back. Because it is not sad faces and sickness. It is smiles and freedom all around!