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!

Sunday, December 25, 2016

Merry Christmas!

Merry Christmas!

Of course it was time for matching PJ's!
I think they turned out great. We tried a family photo, but it didn't turn out (I think we need to teach the dogs to take pictures)

Everyone was spoiled!

I had just gotten off of work (I was working nights for Christmas) and we all got to open our presents together in the morning

Of course, with all of the presents and loudness and fun, I was just happy we were all together!
Merry Christmas!

Friday, December 23, 2016

Christmas Crafts and Ugly Sweaters

We decided to do do some crafts for teachers gifts this year.
I had seen some pictures on facebook about these tea-light snowmen and thought it would be a great idea!
So I bought lots of supplies, and tea lights and ribbons and let Katheryn do whatever she wanted!
We did use white glue, but I reinforced everything with a glue gun.

We had some sparkly candles and beads and ribbons. Katheryn made one for her teacher, her choir teacher and her science/gym teacher. And kept one for herself.

Nick thought this was a great idea too. But I got to thinking that it would be easy to make some Avenger/Star Wars snowmen!

Nick helped paint them, and put them together. He picked which one each of his EAs, teacher, gym/science teacher and bus driver, and kept a Captain America for himself as well.

Because I was in the crafty mood, and the glue gun was already out, we had a lot of fun when it was Ugly Sweater Day!

Visiting the Value Village and the Dollar Store and ta da!

The kids were so excited with how it turned out!

Nick's was a little heavy, and the nose was supposed to glow, but he was happy with it!

Thursday, December 22, 2016

All ready for winter!

A month ago when we got our first snow fall, I ordered a lap cover for Nick in his wheelchair.
The day of Nick's school trip in the forest (I don't have any pictures, but Nick said they had a special sled for him, and he fully participated and had lots and lots of fun), the cover came.

This is exactly what I ordered:

It fits well on Nick's lap, and I fold the excess underneath his feet.
It is fleece lined, and keeps his legs warm and it is waterproof. So it does exactly what it is supposed to do.

It does have some room for improvement. The sides rub against the wheels of the chair. So I am always pushing it underneath his legs. There are velcro straps that attach in the back
 but I find the back part bulky. But it fits well over his winter jacket.
And it has to come on and off every time.
If there was a way for it to sit flat on the seat of the chair, and Velcro under the seat, and then come forward to be zippered over the lap I think it would work better.

The Woodpecker version is set up like that; instead of covering over the lap, it covers under the lap and zips at the front. Then you can just get in and out of it, instead of always taking it on and off. But it is also twice as expensive. And I worried Nick might get too hot, with the fleece covering his back.

We have gotten a lot more snow this year, and we are all excited for a white Christmas!
Katheryn loves climbing on all of the snow banks

Nick wanted to get out and place in the snow when he got home from school today. So put his snowpants on over his winter jacket and threw him in.

It was nice having all of the snow in December, when we still enjoy it. Instead of February when we are waiting for spring to come.

Sunday, December 18, 2016

Sledge Hockey with Katheryn

We had a new sledge hockey player today!

Katheryn had the opportunity to get out and on the ice with Nick.
Nick actually did better with Katheryn on the ice. He certainly liked showing off!

Thursday, December 15, 2016

Family Vacation!

We decided to surprise the kids with a little family vacation to Great Wolf Lodge!

Katheryn was worried about Twinkle, our elf on a shelf, so he came with us!

Of course we had to get a room with the bunk beds. Both the kids love them, but Nick never wants to go on the top bunk. He just likes sleeping in the same room as his sister

We decided we were going to try out the MagicQuest game this time.
Nick had fun, but he got really tired (I think we'll need his wheelchair next time).
But Katheryn had a blast running around!

We went for 2 nights/3 days, but I didn't take all that many pictures while we were there.
One morning at breakfast we decided on some selfies!

The have this giant gingerbread house in the lobby. And it is an actual gingerbread house! You can actually book to eat your meal there.

We also got to meet Santa and Mrs Claus (and this is inside the gingerbread house)

I only have pictures at the pool the last day (I didn't bring my water camera).

Nick and Kyle stayed in the big pool most of the day.

Katheryn and I would go out and explore different slides. We would go on the medium slides and race each other down. And we went on the big Wooly Mammoth slide multiple times (and a lot of begging), but I couldn't get her on any of the other slides.

BUT I did get Kyle and Nick on the Wooly Mammoth slide, 1 time. We carried Nick and waited in line to get on the slide, and then when we got to the top, they told us because of Nick we could have skipped the line.
But Nick wasn't interested in the slide again.
But I did get 1 great picture!

But the kids had lots of fun in the water. We would spend a couple of hours in the pool before getting out and doing 'land' stuff (MagicQuest, the arcade, bowling... which sucked... visiting the gift shop, or just relaxing in our room)

Of course once we left the kids were asking when we were going back again!

It was a wonderful winter mini-vacation!

Friday, December 9, 2016

Spina Bifida Clinic

It was time for spina bifida clinic again!

Nick got to show off his crutches skills!
And of course impressed everyone!

Clinic Day is usally a long day, and so we came prepared to spend the day in the waiting room. But we actually spent most of the day in an exam room. So we could spread out our stuff.

We saw physiotherapy, who was very impressed with his walking. And orthopedics. He got the all clear for scoliosis. Nick has had a bump at the bottom of his cyst scar, I find it there sometimes and then not there at other times. I asked if I should be concerned from an orthopedic standpoint. But he didn't think so.

We saw occupational therapy. I had some questions about Nick's wheelchair, and the possibility of how to look at getting the FreeWheel. There isn't any funding for it anymore. So we'll keep that in mind when we are looking to buy it. She had some suggestions for the wheelchair, but we will follow up on them with Grandview OT. We also talked about Nick's computer and some suggestions for programs to help with typing.

One of the things with the SB clinic, is that you get to see everyone, but you need to also figure out who to talk to, to get some answers. Or at least know that you are on the right path.

When we met with urology we talked a lot about what we have been doing. After Nick's spinal surgery the urology issues we were having improved. Botox right now is another option, but not something we want to explore right now.
But the thing that got me excited was that I FINALLY had someone to recommend and actually suggest putting the PEG in our solution at night! I have asked this many times and have been told no.

We also met with Dr Church. She is my favorite doctor! Not only is she passionate about caring for Nickolas, but she listens and respects me. Both as a mother, an expect and a nurse. In fact, she sent her residents out of the room at the end of our assessment so that we could chat.

During our appointment we talked about Nick's overall health. She asked about school and Nick's IEP, I said that seems very basic to me, and I'm not sure what to do about it. I never even thought about his IEP or I would have brought a copy with me.
So I'm getting a copy of Nick's psycho-education assessment and his IEP to see if there are areas that we are missing that we can help assist him in his learning.

Overall it was a good day. Nick is 114.6cm, which is 17%ile, and his weight is 22.5kg, which is 42%ile. So he is shorter, but we know that this is most likely, and his weight is ok, if a little under but not concerning.

We go again in a year, but everything is looking good and stable.

Sunday, December 4, 2016

Christmas Tree Hunting

Nick decided he wanted to walk with his crutches for Christmas Tree Hunting!

And when he got tired, he always had Daddy's sholders!

Or Mommy's

We went to the same Christmas Tree Farm for the last couple of years. But this year we really had a hard time finding the right one. They just weren't tall enough for us. But we were here and we were not leaving without a tree!

They had a wagon ride my parents and the kids went on while Kyle and I kept looking

We finally found one that we all agreed on

The best part for the kids were the popcorn and hot chocolate afterwards

And Papa and Nick had some popcorn fights!

We got the tree up and lights right away

And the kids were both very excited to decorate the tree...
And different from other years, they actually did decorate the tree!

Nick worked on all of the lower pieces (and practice standing)

And Katheryn used the stool to get the middle parts

And Katheryn collected and handed out all of the ornaments

I got the top parts

The tree turned out perfect!