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, May 13, 2016

School Work

I have had this 'school' post in my draft folder for a while.

A little while ago Nick didn't want to go to school anymore. He said that it was too hard.
We talked about what was hard. And he was saying that everything was hard. This was a couple of months after his recess was limited to indoors for the short recess. But once the nice weather has returned he comes home with stories about who he played with all day. And while he isn't excited to go to school in the morning, he isn't upset about going anymore.

School is almost done for the year and with his surgery booked in June I think there is a good chance he will miss the last 2 weeks of grade one.

At Easter, Nick got a Star Wars Grade 1 Reading workbook. He was so excited and very interested in it. I wanted to get him the math version, but we couldn't find the grade 1 (but we got a grade 2 one for next year). If there is something he is interested in (and he loves Star Wars) then I want to work on that with him.


Nick has improved his reading over the last couple of months. He is more comfortable and confident in his ability to read. Instead of getting upset and saying that he 'can't' he is trying. He is sounding out words he doesn't know. He still gets frustrated and says he doesn't know. But he does know, and he does read the word.
He brings home a book every night to read at home, some nights the house is too hectic and we aren't able to do it, but most nights we get it read.

He is reading a level 10 (and ready to move up to 11 soon) and has worked so hard to get there! Now that he is progressing in his reading, he is excited to read his book!


Writing has to be the area that Nick has made the most progress. At the end of kindergarten writing was still very difficult for him and took a lot of time and energy. Nick has made incredible progress and his writing is better than Katheryn's!


The subject that Nickolas struggles with most, is math. This doesn't come as a surprise to us as math difficulties is very common in kids with spina bifida. He gives up and says that he can't do it. Nick is learning about coins this month, so I collected all of our coins and we talked about them and he could touch them and feel them and try to learn their names.
We also sing the Bubble Gum  song we learned in camp, to help him to learn names of the coins (only we need to update it with the Toonie and Loonie)


We also got a math game that we can play at night. He tried it in the store and liked it. It is adding numbers from 1-9 with a dice. The object of the game was to roll the dice and count to put your peg at the right number and it is a 2-4 person game. Whoever gets 3 in a row wins. it is a fun way to help to memorize and learn addition. (And on the back is the same thing with multiplication 12x12, with larger dice)


We started on his workbook at the beginning to review the year. We have moved onto subtraction in his workbook and he is having a really hard time. He is having a hard time understanding the concept of taking away without counting anything. So I was thinking, what is small that he can count that won't fall off of his table. Lego is the easy answer.


I think that Nick has gotten better as we've been working on everything.
We have an hour of one-on-one time most nights as we do his bathroom routine. Instead of watching movies, we've been trying to off-set it with working on school work, especially if we can make it fun work. Over the last month or so I have seen improvements and gain more confidence.

Tuesday, May 10, 2016

Neurosurgery

We had our appointment with Dr Rutka today.
We talked about the loss of feeling in his feet, but also about how well he is doing with his crutches. His shunt is doing well, but he has complained of quick headaches, which is new. They don't actually last very long, a couple of minutes.
But I also see that he is turning his foot in more, and his left foot is slower (but it always is). But he makes up for this with his walker and crutches.


But in the end he said we had a couple of options. Including surgery to drain the cyst, the fluid that is pushing against the spinal cord, and/or surgery to untether the cord. We decided on surgery to drain the cyst. This should start bringing back the feeling.

I forgot to ask (again) if what we are talking about is a syrinx, which is a collection of spinal fluid in a  cyst that collects inside the spinal cord and can injury to cord from the inside out. This is what I am pretty sure he is describing, but he never actually used that term.

We went into a different room to talk with the booking nurse and ask questions.
Nick and Papa found some things for distracting themselves.


I think he is a bad influence


But Nick thinks that he is the funniest!


We are looking at surgery in 1-3 months. He will be in the hospital for 3-4 days. Looking at healing, infection and pain control. It will be on the neurosurgery floor we have been to before, and I can stay with him the whole time.

It was afterwards that I had other questions about what will they do with surgery. Will they do a shunt (which he mentioned in March). Will the shunt be permanent, how will it effect his head shunt? What about a decompression? What about tethered cord?


At the time, when we were meeting with the doctor it seemed like the surgery wasn't really a big deal. Except of course that it is neurosurgery, and of course that a 3-4 day hospital stay (which is a long time nowadays).
I went onto a couple of spina bifida groups on facebook and asked for any experiences and worried myself. Some asked about tethered cord and why not do tethered cord surgery. Why do surgery at all, and that the surgery was often used as a last resort. This is not what I was thinking.

So I emailed the nurse who went through the pre-op information and asked some of the questions.

I am freaking out just a little. A little bit of me is still calm because we have a plan.

Monday, May 9, 2016

Finishing up Physiotherapy... for now

When we started physiotherapy in February, Nick could go around Grandview in his crutches in 5 minutes. This week he did it in 2 1/2 minutes!
He has also done great with his reps for his leg weights, going to 40 reps and 3 lbs (and we started at 10 reps with almost no weight)

This is our last physiotherapy session for now. We had goals of increasing crutch use and comfort, working on the stairs. And gaining strength in his legs.


He is working hard on the stairs, still working on going up and down and getting the rhythm.


We are going to be working on this at home.



Katheryn really likes helping as well (not that she can be the spotter at home), she is great for getting him to want to go up and down the stairs.

So after all of that pesky work was done. It was time for the weapons to come out!
Lindsay brought 2 more of her ninja weapons as a reward  

There was wooden swords


We got Nick to stop cheating, and do it standing away from the bed


He is having so much fun with these wooden swords!


And then he would sneak his bum back on the bed


(I love this picture... even though it is blurry)


Leonardo is ready!


Katheryn got to try them out too
This is her fighting stance


And she was trying flipping and twirling the sword



Next Nick wanted to try to nunchucks


Lindsay showed him how to turn his hand and make them swing around


And how to use them for defense


But he is a boy, really he just wanted to swing them around


And Katheryn got to try and swing them as well


This block of phsyio is done.

I talked to Lindsay about seeing neurosurgery next week, and my conflict in that I am seeing some loss in function, but then he has done so great with his crutches! She said that the physiotherapy and working on his leg strength helped. That maybe if we hadn't done this block then we would see a more profound decrease.

Sunday, May 8, 2016

Mothers Day


For Mothers Day the kids each made me a card telling me why they love me.


A lot of Katheryn's is stuff that Kyle actually does (me too, but motherly Kyle). But I love her line "My second reason is well, you made me and if you didn't make me I wouldn't be here"


And I love that she signed her name as Kate.


Nick wrote his flower out as well. His writing has gotten so much better!


Nick also got to practice his typing.
This totally made me cry. Especially the "she likes the same movies that I like"


They also each made me a drink coaster for my hot tea.
I am the luckiest mommy!


And I think my kids get part of their crazy from me


Wednesday, May 4, 2016

Parasport - Track and Soccer

Parasports this month was track.
I wasn't really sure what they were going to do for track.

I have been trying to sit back and let Nick be on his own. Instead of having mom always there to help. So I don't have all kinds of pictures of what he was doing and learning.

But they did have these hurdles that Nick wanted to show me.
He could step on it to get over it.




When I watched him, I asked if he wanted his crutches. So I went out and got his crutches for him.





That pesky left foot had difficulty



Katheryn had fun with the soccer fields.
She kept running back and forth. I timed her, 13 seconds for the length of a soccer field.


She also had another sibling who was there that they played a soccer game together


And she had a great kick!



After a while the other kids got on the soccer field as well.

It is May the 4th today. So Nick had his choke hold all ready!


Nick did have a lot of fun with the soccer. Maybe we will look at doing something in the summer with soccer