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, November 28, 2014

All I want for Christmas

Christmas is coming and it's time for the kids to write their wish list for Santa

Katheryn got to practice her writing

And we decided to try something new with Nickolas.
After Nick's report this month I decided that instead of making Nick spend all of his time writing out what he wants, we would type it out.

So he had to type every single word on his wish list
We spent time sounding out and looking at what was written in the flyers and then he had to find the right key on the keyboard.

Katheryn wanted to type out her list as well, so after she wrote it she got to type it as well.

Once that 'work' was done, it was time for play!

That ran around the house like this for about an hour!
Hearing the giggles and laughter from these 2 made my wishes come true!

Saturday, November 22, 2014

School Report - Katheryn

We got Katheryn's school report.
This brought no surprises to us. Everything was good. Meeting Expectations. Nothing was "Exceeding Expecation", but we get the impression that her teacher doesn't really give out this grade.

Some areas for her to work on (surprise, surprise) was paying attention to her own work and listening in class. Nothing that we haven't seen at home. Katheryn really likes to know what is going on (don't know whwere she gets that from) and helping

All of her work that comes home is correct.
Her reading is fantastic, she answers all of the math questions we give her. She is inquisitive and likes school.

For the parent-teacher interview Katheryn is reading at the top of her class, with only one other boy reading at her level.
Just this week Katheryn completed her level 23 book. But they don't have higher level books. But Katheryn had pretty much read any book she picks up (which is interesting when she is reading over my shoulder)

I'm wondering if the fact that within a week we had 2 parent interviews, one that was great and one that was surprising just made Nick's that much more surprising.

Friday, November 21, 2014

School Report

We had a parent-teacher interview this week.
I didn't really think that much about it. Go to school, see how Nickolas is doing. No big deal.

Except that I kinda feel like I was punched in the gut.
Nickolas is in Senior Kindergarten, getting ready for grade one next year.
He is learning his letters and counting, even some basic addition. Reading his book at home and recognizing his sight words. I thought he was doing good.

His teacher showed me a video. In it he was talking to another boy about what they learned about an apple. The different parts.
On the video he wasn't able to do it.
This was something that they had learned, and he wasn't able to talk about it.

We talked about his letter recognition. She said that he lost some of his letters and sight words over the summer. I will admit that we didn't work on them. Instead we went to camp, had surgery and recovered. Should we have worked on letters? I guess so

There are still letters that he doesn't recognize, specifically "G, H, b, g, h, p, q, u, y"
He doesn't draw. He still prefers to scribble instead of actually making shapes. I have this picture he drew a month ago. But it is one picture, the rest of his pictures are scribbles.

I came out the interview discouraged.
How far back is he?

What can I do to help him? Is this part of it? Is this part of spina bifida?
The difficulty learning? Is he showing a learning disability?The ones they talk about at conferences, related to spina bifida/hydrocephalus. They talk about IQ and standard deviations below average. Is he showing that?

But he isn't. He is smart. He loves to read, he has some difficulty but he will still try (with encouragement). He counts, and he sings. He writes his name, he will tell me sounds and numbers.
When we got home, I pulled out an apple for him. He did tell me about the apple and some of the parts.

I talked with his OT about the writing and letters. She said that he works so hard on making the moves for writing when he has so many thoughts he wants to get out. We talked about a laptop as an educational aid. So he can show off his knowledge about letters and numbers separate from the skill he is still working on to write.

Nick got his report card as well. Personal and Social development, he got 2 out of 10 marked as an expected level, the rest developing. Nothing under science and technology, half of the arts, for language, another 2 out of 10 items.
Kyle told me that developing is what he is supposed to be doing. That it is too early to start worrying and getting upset. And it gives us areas for improvement

But I still have this heaviness in my heart when I hear about the limited progress he is making in school activities. With the physical, the mobility and the bathroom issues does he really need to add intellect to this list of things Nick has to work extra hard.
Can something come easy to him? Easy like it is to everyone else?

Wednesday, November 19, 2014

Snow Fall

The kids were very excited to enjoy the first snowfall of the season

Nothing like Buffalo, but enough to cover the ground in white and catch some flakes on the tongue.

Sammie loved it!
The kids were eager to be put to work. Katheryn really wanted to shovel the driveway

And Nick wanted to help too

About 2 minutes after these photos were taken Katheryn and Nick were done with working and wanted to throw some snow balls!

Friday, November 14, 2014


Nick finally had his Dentist consultation at Sick Kids. After our appointment in July, I waited until Nick was all recovered from the MACE before making another appointment to try again. The next appointment we could get was October 1st. 

A week or so before the appointment the dentist clinic called me and said that because of what happened before, they wanted him to be seen at Sick Kids. They had put in the referral in July, hadn't I heard? A couple of weeks of back and forth and eventually a letter came in the mail. We had our initial consultation. November 13, Nick's birthday.

So after a morning in school, Nick and I headed downtown to see the dentist. The destination wasn't the most birthday-friendly, but the trip was. Nick really likes riding the train

The dentist appointment was pretty basic. Nick was fantastic, not afraid, very calm and cooperating through the entire thing. We talked about our experiences with the dentist, our last 3 appointments to fix teeth with nitrous and sedation. We also talked about how Nick did not tolerate the visit the last time.  

Nick let them look in his mouth and we looked at his old x-rays. They printed the pictures, which Nick thought was great!

The dentist resident thought that we could fix the last 2 teeth with the least amount of intervention. A deep cavity maybe needing a root canal on the back molar tooth, and another one at the front. The dentist came and agreed, but wanted some recent x-rays to make sure we knew exactly what was going on in his mouth.

Nick decided to play a bit while we were waiting.
Pretending to spit in the bowl (he thought a spit-bowl was the funniest thing)

And he wanted to know what all of these things were, and what they were used for, and could he play with them. They found out that it was Nick's birthday, and gave him a lego box and some birthday stickers.

When it was time to get the x-rays done, that is when things started going downhill. He was good with the lead cover. But they couldn't get the x-ray tabs in. He just kept gagging and gagging (which is the chiari symptom). He did this before, but I was hoping it would get better as he gets older (we got the x-rays before with nitrous oxide, which decreases the gag reflex).

Even with the gagging, he was still good, and he let them try. With the gagging and the tears rolling down his face, he still let them try.
But we couldn't get the x-rays. So that changed our plan.

General Anesthesia. We have a 'surgery' date of February 2nd, first thing in the morning (the benefit of latex precautions). They have a 2 hour OR time booked, for x-rays, fill/fix whatever is needed for the teeth and a cleaning. He will then wake up from anesthesia and we can all go home.

I have had a number of people ask if we should be going to this extent for some baby teeth? Well the big one that needs to be repaired is on his big molar in the back. They think that this one is deep, and he will have these teeth for another 6 years or so.

We have tried just local freezing, nitrous and sedation and anesthesia is the final step. I knew it was on the table in May, and we tried all that we could to prevent it. Unfortunately we couldn't prevent it.

Once we get Nick's teeth all fixed up, we want to do our best to prevent him from needing it again. I also got a stern lecture about brushing Nick's teeth twice a day, including getting in the back. Even with the gagging that happens when I try to get to the back of his mouth.

I am really hoping that the oral ditropan is what caused the mouthful of cavities. I don't want every visit to the dentist end up in the operating room!

Thursday, November 13, 2014

Happy Birthday!

5 years ago we were waiting and wondering and hoping.
Waiting for the little baby that we only knew from ultrasounds, kicks and a doctor’s diagnosis. Not knowing and too afraid to look too far into the future.

And that little baby boy was born and immediately handed off to strangers

 and whisked away to get ready for some major surgery. With only a quick cuddle.

It was a week before I could hold him again, but it seemed like the days took forever.

And time has passed,

In 5 years that little tiny baby has grown into such an amazing child.

He’s a bit Ninja turtle crazed,

and loves to... laugh and learn, he is funny and shows such a love of life and all of those around him.

For the little boy who teaches me about life every single day.

Happy Birthday to my Nickolas

Saturday, November 8, 2014

Nick-angelo's Birthday Party

When it was time for planning Nick's birthday party he knew exactly what he wanted.
He only wanted a swimming party, and of course it had to be Ninja Turtle themed.

So we did both, Ninja Turtle Themed with an hour in the pool as well.

Masks for the kids (and maybe some adults)

Ninja turtle loot bags

 And a couple of games
Some bad-guys to knock down (with ninja turtle coloured Frisbees). I got old-ninja turtles and new-ninja turtle bad guys

Pin the pizza on the Ninja turtle

And a ninja turtle basketball game

We had some Ninja-Turtle food trays, and of course pizza

And a Ninja Turtle cake

Nick got to play with all of his favorite friends

Nick had a fantastic time. He got to run around and play (in his Shellraiser), go swimming, then eat pizza and cake and have everyone sing to him

And after all of that fun, he still got to open presents!

Surrounded completely by all of his friends, who each had a job to do, including present passing, card reading, music playing and garbage collecting

And everyone was excited to see what he was getting

Nick was loving it of course
(Ninja turtle Kraft dinner!!)

 Pretty soon 4 hours had gone by, and the party was over

Happy Birthday Nick!