Renovations

Since I wrote about making our house more accessible last December, Kyle and I have had an ongoing wish list of things that we want to do to make the house more accessible.

• Open up the entry way into the family, taking down the half wall
• Raising the family room floor so that Nick can easily bring his walker into the room
• I really didn't want to do this. The step down was a feature that I liked in the house. And it was going to cost a lot of money
• So we had a second idea
• Make a ramp into the family room (needed some space to do this first)
• Make a ramp (or something) into the backyard
• Take out the front hall closet in the foyer. This will give Nick lots of room to move his walker around and open up the front hall space.
• Put handrails on the walls up the stairs to let Nick hold on both sides and walk up the stairs
• Put a doorway from our front hall into the garage
• Add a platform in the garage
• Get a porch lift and install it inside the garage

This was kind of our list of stuff we wanted to do.

It will open up the house and give Nick total accessibility to take his walker anywhere on the ground floor, and out into the backyard. And it will give some maneuver-ability in the front hall.

We got some quotes for some of the work and were shocked at the prices. Thousands of dollars just to put a door into the garage! We wanted to get some other opinions about how much some of the work would cost, because it seemed exorbitant to us.

Kyle and I have still had differing opinions if we want to access the March of Dimes home and vehicle modification grant, this is $15,000 lifetime maximum for home modifications. I didn't want to limit Nick's availability to money that we spend when he is only 5. I wanted to see how much we could do ourselves, and maybe try to apply for money from Easter Seals (max $3,000) annually and see what we could pay out of pocket ourselves. So then we had to step back, and put thinking on hold.

Then Kyle got laid off (which is part of his job and not unexpected)

We had a wish list and Kyle had some time.

So I came home one day to find this...

Kyle took down the half wall and now our dining room and family room were completely open

Nick loved it, and it opened the space up

We had to move some of the furniture around for awhile, but the kids loved this new seat that was just their size!

The next week was time for the front hall closet.
This is how much space we had

Again, when Kyle knocked down the walls it made more space

That was it for renovations for a bit.
But Kyle has a lot of plans for the week that we are in Florida!

This is our wishlist right now:

• Open up the entry way into the family, taking down the half wall
• Make a ramp into the family room (needed some space to do this first)
• Make a ramp (or something) into the backyard
• Take out the front hall closet in the foyer. 
• Put handrails on the walls up the stairs 
• Put a doorway from our front hall into the garage
• Add a platform in the garage
• Get a porch lift and install it inside the garage

Easter Seals Telethon

It was the Easter Seals Telethon this weekend and we had the opportunity to participate!

We are in the Durham and Kawartha Lakes Easter Seals jurisdiction and part of Peterborough Easter Seals. Last year during Easter Seals there was a request sent out asking for anyone interested in talking about their experience during the Telethon. Nick was not interested last year and was nervous.

This year when the same request went out, I talked to Nick about it and he was interested. So we said yes. In the lead up to the Telethon we had the CHEX interview, and we also had 2 interview slots for the Telethon.

The day of the telethon Kyle wasn’t able to come, so it was the kids and me. We watched the telethon on TV for a little bit until it was time to go. I had the kids all ready in their Easter Seals shirts for Woodeden.

 I wasn't really sure what to expect, which is why we watched some first. And I hoped that Nick would do some talking. The host was great, she talked with Nick first and connected with him about Ninja Turtles.

We had a couple of minutes with her before we were live on air. I did most of the talking and we also did a shout-out to Kyle who was at home

It was very interesting to see behind-the-scenes of a tv production.

And to see what we had watched on our tv and what it looked like in real life.
Our second interview was here, right in the middle, with all the bright lights and cameras on us.

The kids had fun in the kitchen. That was our base.

They had a garage area, but it was loud and cold and neither kid wanted to be in there.

We also spent a lot of time walking (and running) in the halls. And Nick charmed everyone but pretty much running everywhere. He didn't knock anyone over, and everyone was impressed with how he moves in his walker.

We also got to meet a new friend.

One of the Easter Seals ambassadors was another boy, Aidan, born with spina bifida. We got to see his story and his interview with her mom (that I have met before and know online) and family. I think that it helped for both kids to see there are families just like ours.

Aidan was so well spoken and it was funny that both boys were dressed the same (with different camp names). 

Nick has been feeling different lately and has been asking a lot of questions about why he pees differently and poops differently, why he has a shunt and needs a walker.
It was nice to be able to say to Nick that the boy he met was just like him. He has spina bifida, he has a tube in his belly, and pees the same way as Nick. We saw Aidan using his wheelchair, and Aidan told Nick how well he was moving in his walker.

 It was a great day out and opportunity. And I look forward to being able to go again next year! And have more camp stories to share.

Birthday Party

Katheryn had her birthday party this weekend.
She had a number of choices and picked Neb's Fun World and bowling. (She originally wanted swimming like Nick's party, but I didn't feel comfortable watching kids I don't know in the pool.) It was my first... I mean Katheryn's first... friend birthday party.

So she picked 5 friends from school (which turned into 9 friends from school) and family and friends and we had 16 kids for bowling. We had 3 lanes and so divided everyone up.

Family stayed in one lane and then friends were in the other 2 lanes. We had girl friends and boy friends and there were some friends who didn't want to play together (my first clue that there might be drama)

I assigned adults to every lane. One parent stayed and everyone else dropped their child off. It wasn't until the last parent asked about leaving a phone number that I realized that if anything happened to any of the children I had no way to get a hold of anyone.
I also had my list to keep track of who was there, and then cross kids off after they got picked up.

I was in charge of the girl team, and the girl drama. I hadn't realized drama would start at such an early age (thinking more teens). But we had tears and it's not fair and she won't let her and she's not sharing. I think that I did well with the drama and everyone had fun.

Because it was a girl and boy party I also had girl themed and boy themed loot bags (and left overs for Nick's party in November).

Katheryn had a great 7th Birthday! And smiles all day

Our family on CHEX

A couple months ago our local Easter Seals chapter was asking for volunteers to participate in the upcoming Easter Seals Telethon. It was a general email, I got one last year, but Nick was too shy and so we didn't sign up.
This year I talked to Nick about it (it would means talking to a stranger and being on TV). And he said yes.

So we signed up for 2 sessions in the telethon this Sunday. I was contacted as well to see if we would be interested in doing an interview with CHEX TV as a special interest piece. I asked Nick and he said yes.

Our house continues to be a bit of a mess with our renovations (and having 2 kids and 1 dog in general). Someone suggested the school as a venue for the interview.

I left it to last minute (waaay most last minute than I realized right before Easter weekend). But we were able to get permission for filming from Cambell Children's School and Grandview Children Centre.

I tried to prepare the kids ahead of time about Easter Seals. Nick doesn't remember camp at all, (he was 3) and so we looked over my blog posts from 2013 and the pictures.
Day 1     Day 2     Day 3     Day 4     Day 5     Day 6

When everyone arrived Nick was in speech therapy in his stander. So we got a couple of shots of him doing speech therapy.

Then it was interview time. Campbell's did set aside a room for us, but the hallways are so bright and cheerful we filmed in the hall instead (making sure there were no kids in view). And we tried not to disrupt the school very much.

I got to wear a microphone as we talked. Kyle and the kids stayed nearby. Nick and Katheryn ran around in the hallway while the cameraman (?Paul) filmed some scenes.
I wasn't sure what questions Caley, the interviewer, would ask, and so I didn't prepare at all.
I had sent her some information about our family, spina bifida and Nickolas in general as well as some pictures and my blog link. It was very comfortable and not stressful, we did 2 takes of the scene in the hallway because in the background we accidentally may have gotten a picture of some kids.

I wanted to be realistic, positive and also provide information about spina bifida. I think I am much better in writing. It wasn't until until I watched the show later on that I realized I said that spina bifida happens at 12 weeks gestation (which is wrong, it is really 4-6 weeks). And on the fly I thought about saying something about folic acid. But didn't.

The kids in Nick's class went out for recess and so we moved the interview to the classroom. And it was time for the kids. Nick was nervous and in the final they did alot of editing. He gave a fair amount of blank stares to her questions (how did you like camp, what do you like to do in school, what do you want to do in camp this year?), but of course once Ninja Turtles are mentioned he perked up.
Katheryn rocked it of course. We weren't sure if we should let her play hooky from school, but it was perfect that she had the opportunity to be there. And it makes her feel special too.

In the end it took 1 hour of filming and was fun for everyone. A positive experience that will hopefully be repeated on Sunday's Telethon.

The show aired that night. And they spread out the 4 scenes through the whole show. Our parts are at 1:40, 3:10, 19:13 and 34:10. I didn't give enough notice to family (I wasn't sure myself when it would air) so they missed it. But luckily they post it on youtube as well.




Of course we PVR'd it, and watched it live. The kids were not that excited to see themselves on TV. They actually were more excited today when I was watching it on my phone.

I am so happy that we had this opportunity. Not just to show off my own beautiful family, but to raise some awareness and positivity about Easter Seals, spina bifida and also Campbell Children's School

Thanks to everyone who made this possible!

Here is the video all peiced together as well:

Hoppy Birthday

Katheryn had a special 7th birthday today. It fell on Easter Sunday. So it was sharing the special-ness of Katheryn's birthday with an Easter Egg hunt for both of them.

So that tricky Easter Bunny hid all of Katheryn's presents around her room. She was very excited

Nick got into the fun as well and was right into the action while Katheryn opened her presents.

Everything kind of stopped once Katheryn opened her big present. A DS3. It was attached to her for the rest of the day

Then it was Easter Egg hunting.
Katheryn made up a note for the Easter Bunny asking if all of the eggs can be paired together. One for Katheryn and one for Nickolas.

 Katheryn is an Easter egg hunting machine! Nick is significantly slower, so it evens it out for everyone.

We have Katheryn's birthday party next weekend, but wanted to do something special for her. So we headed off to the zoo

She told everyone we saw that it was her birthday and she was 7 today. And she had a big Princess Birthday pin.

The zoo wasn't that busy, considering it was a holiday. There was a scavenger hunt set up by the zoo to visit different animals and get stickers.

We had to visit the polar bears, which is an old time favorite of Katheryn.

Nick liked the sea otter ("just like Marlene" from Penguins of Madagascar)

My favorite was the Komodo Dragon. We waited to see if it would start to breathe fire, but it didn't. The kids were not convinced that it was an actual dragon.

We got together for some photos.

And there was a Parks Rec beaver mascot for pictures.

After the zoo we went back to the house for an inpromtu party.

Complete with some purple hair chalk!

I didn't take any pictures, but we had family come over for a pizza party and cake.

Katheryn had a great birthday! (And the both enjoyed their Easter)
(Easter Sunday doesn't fall on Katheryn's birthday again until she is 18 years old, so I am glad that we made it special)