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!

Tuesday, May 31, 2016

Questions Answered and a Plan

We have had more appointments for Nickolas so far this year than we had all last year (and last year our SB clinic was divided into 3 days). Katheryn has been feeling the difference and has asked to come to an appointment with us.

We had warned her that it wouldn't be all fun and games. That there would be lots of boring waiting.

We were going to have a busy day. With neurosurgery, ultrasound, urology, bloodwork and visiting another mommy and son at Sick Kids.

We made this appointment with neurosurgery to review all the questions I had for Nick's upcoming surgery. I haven't been having so much second thoughts about the surgery as much as questions about the surgery. I can see Nick getting tired more easily as he continues to walk so well with his crutches. But I have also seen his legs do some funky things to do this. Instead of just turning his foot in, he is turning his leg in and moving his leg from his hip.

We met with a fellow first who went through an assessment of Nick and asked some questions before Dr Rutka came in. When Dr Rutka came in I went through all of my questions written down in a book on stick-it notes.

First of all he is not going to do a spinal shunt. There will be nothing left inside Nick. I think I heard this the first appointment, but obviously I was wrong.
  • This is an example I could find online. Nick's cyst is a lot lower down than in this picture, below his shoulder blades. The cyst is within the spinal cord and is pushing the spinal cord out of place. The mobility difference that we are seeing is because of this.

Dr Rutka explained to us what he will be doing for the surgery.
He is going to fenestrate the cyst. Pretty much this means put some holes in it (in medical talk). This will allow his body to absorb the fluid.

For the surgery he will remove 2 of the spinal processes (the pointy part of the back) to get access to the cyst. But he will put these back, he called it an laminoplasty. And then it will heal.
The bones of the back are meant to protect the spinal cord, and the spinal cord is what he needs to access.

He will have about a 2" scar in the middle of his back, between his original scar and shoulder blades. And he will use absorbable sutures (not staples) so nothing has to come out.

We also talked about tethered cord. He felt that tethered cord surgery was not necessary at this time. He said that tethered cord was a much more invasive surgery and he wanted start with the least invasive option at this time and reassess after 6-12 months.
That made us feel a lot better.

Some of the other questions we got the expected answers. Miss the week of school, no swimming for 6 weeks and hospital stay for 3-4 days. He said home Mon or Tues (which is longer than 3-4 days, so we will have to see), but Nick has never gone home on the earlier days or expected discharge.
It all depends on how he is doing. There are risk of complications as well, including infection and leaking.

Katheryn and Nick spent all the time playing with all of the toys and having a great time.

We also talked with the surgical nurse about what we needed to do before surgery as well. I knew we needed bloodwork done. But when we had surgery other times with urology we also had to have an anesthesia consult and sign off by his pediatrician. She said they really only doing it if there are multiple disciplines involved.
So what this really means is that urology cares about neurosurgery (and wants everything signed off), but neurosurgery doesn't care about urology. Very simplified of course.

We had to hurry to get to his ultrasound appointment, but surprisingly we made it on time.
Nick was very interested in the ultrasound. He asked if he could see what was in his belly button. So after they looked at his kidney's we looked at his belly button. We couldn't really see the MACE, but we could see how bowel moving, and I teased him that I could see his Ninja Turtle cereal moving around in there.

Urology came afterwards. We had hoped to talk with the urology NP to come up with a plan for our hospital stay, but she wasn't there. We met with Dr Lorenzo about the Botox, he agrees that it was the deflux failing in April. But we have restarted the gelnique and he has been pretty dry again.
So at this time we aren't going with anything else surgical with urology. But in the future may be some other ways to tighten the bladder neck (which I have always believed is the problem).

Then it was time for some lunch!
I don't think that we convinced Katheryn that appointments are very boring...

Finally Nick had to get his blood taken. He was the most nervous about this. He has been asking questions, like how much blood with they take, and will it hurt. But he was very, very brave. He sat on my lap and I held him. His whole body tensed up when the needle went in, but after that he was very good. He even took a peak at it! It was only at the very end that he said that it hurt.
I told Nick how brave he was. But he told me he wasn't brave at all, because it still hurt. I gave him a huge hug! He was so brave!

After all of our appointments, it was time to make it home for a family nap!
But we all feel better about the surgery and our plan.

Friday, May 27, 2016

One Hour

Every night we have an hour of time we need to fill. This is time that we take Nick away from whatever he was doing to get ready for bed, and includes his bathroom routine.

This is our routine, he knows that at 8 at night it is time to get upstairs. That doesn't mean he still doesn't fight us about it. We used to watch movies for the hour. It kept him distracted, but didn't really add any value, especially when he needs help with school.

So instead of putting on movies every night we look for some other things to do for fun.
Like shooting people with water, wearing Elsa gloves for some reason (or just because it is fun)

And Nick has been having fun following the directions to put together lego (something he wasn't interested in doing before).

Nick has a huge imagination. And he will always find something to distract himself with. If he doesn't have toys to play with (and we have a collection of mini action figures) he will play something with his hands (usually Ninja Turtles, Avengers or Star Wars, or a combination of all 3).

One hour of every night is an opportunity we are trying not to waste.  Sometimes it is the only time of the day that I get to see the kids (because I don't get home from work until late). And sometimes the movie or game or activity that Nick had to be pulled away from is replaced with another movie or game. And sometimes it is the time of day we can do homework without being distracted.
Either way it is one hour of the day that Nick needs to do. And finding ways to balance what he needs to do, with what he wants  to do is important.

Monday, May 23, 2016

Long Weekend and the Lake

The first Long Weekend of the summer!
The kids are very excited to be up at the cottage. It has been a couple of months since we were here last

Of course the first thing they wanted to do was to go down to the lake!
At first it was just going to be putting our feet in. But that didn't last long

And pretty soon everyone was in the lake
... well not everyone

The water was cold, and while it was sunny there was still a wind.
Nick didn't last as long as Katheryn did

Nick liked pretending that he was the emperor, and he was shooting lightening at me!

Rory liked it by the lake. And stayed close... most of the time

The kids went in the lake every day of the weekend.
I would get my feet wet, but that was about it

They had lots of fun going out deeper and deeper

These 2 water bugs had all kinds of games that they were playing together

But they  had lots of fun in the water!

They could only be in the water about 1-2 hours of the day.
But there was lots of other ways to have fun

Like waking Daddy up

And trying to lift him up

And I made up a scavenger hunt

They had lots of fun running around the property looking for everything (and the stick as tall as Nick was doubled as something else later in the night)

Katheryn was really proud of all of the things that she collected

Her favorite was the pebble as small as her nail

Nick's favorite was something that is a funny shape

Another favorite activity of the weekend was the bonfires

And of course roasting marshmallows (with sticks as tall as they are)

Everyone wanted to roast their own marshmallows (and that fact that I kept setting my own on fire had nothing to do with it)

And Nick had his in some messy S'mores

Of course they aren't tired! They are wide awake and want to stay by the fire!

We had another fantastic Victoria Day Weekend!

Wednesday, May 18, 2016

Second Thoughts

When we first decided on surgery I felt like a weight had lifted. We had a plan.
But that lasted, maybe a couple of hours.

Then all these questions started flooding in.
What does surgery mean? What will he be doing? Not specifically, but what does he mean by the shunt, is it permanent or will it be removed? Where does the shunt go? What is the recovery like and what kind of incision is there?

I posted some information on one of my parent groups and that just created more questions!
I had a couple of people respond with their experiences with a spinal cyst; decompression surgery, spinal shunt and/or tethered cord surgery  (and they were the choices given by Dr Rutka).
And none of those things I really wanted.

Decompression and Tethered Cord surgery are things that I have learned about spina bifida through the years.
  • The thought of a decompression makes me feel sick. A decompression will treat the chiari malformation by removing a part of the skull. And I don't really think that is the issue. Except that most of the things that discusses a syrinx is paired with chiari malformation.
  • Tethered Cord surgery is something that has always been in the back of my mind. The spinal cord is caught in scar tissue from Nick's original surgery to repair his back when he was born. As he grows bigger and taller the cord starts to get stretched and damaged. Surgery will release the spinal cord from the scar tissue. But any surgery creates more scar tissue.
  • Spinal shunt is what we said we would go forward with. But what is involved in a spinal shunt? Of course I googled it. But I don't want to make decisions on google. So I emailed our nurse a bunch of questions and she made us an appointment to talk with Dr Rutka again.

After talking with some of the parents I am wondering if we should look at tethered cord surgery as well? I don't want to do anything if we don't need to. But I don't want to not do something that maybe we should do.

It is so hard to be a parent right now!
Wondering if we are making the right decision. But then I think about how this has been a concern we have had since last summer. When Nick needed to have higher braces and we talked to Dr Rutka about that. He ordered the MRI, which we got in February, results in March and here we are in May.

Nick's need for higher braces is still there. The independent steps he took in November is still missing. Even looking at the picture above. He is needing to bring his knees in to balance himself. I can see him moving better and getting stronger with his crutches, but I still feel that he is losing something.
He also has started to feel his feet again. I think part of it is that he doesn't want surgery, but part of it is that he has more feeling than a couple of weeks ago... at times. At other times (like when his feet are cold) he still doesn't feel it. Kyle and I have both been testing them. There are times he feels them, but there are also times he doesn't.

I still have questions and options. But we have another appointment with Dr Rutka at the end of the month. I am planning to be fully prepared with written questions to ask, and Kyle will be there.

We also have a surgery date. June 16th.

I spent all weekend covering my shifts at work. As well as worrying and wondering. Wanting to know information, but trying not to just google everything. And a syrinx is considered to be a rare medical disorder, secondary to something else, so it is difficult to find valuable information.

It has been over a week since we made the decision for surgery and got the date.

I have felt stressed and anxious. Up until Monday all I could think of was the surgery and the choices and what to do. I thought about it, I dreamt about it. But I've been trying to distract myself. Breathing exercises and my new mantra

I have been feeling better about it the last couple of days. One reason is  because I couldn't keep going on like that. And there isn't anything that I can do. I have to trust that we will make the right decision and trust in our neurosurgeon.

And blog. Which usually makes me feel better

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


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.