Katheryn's First Communion

Katheryn had her first communion this weekend.

I hadn't at first realized how elaborate some of the dresses are. Like little wedding dressing (which I guess it the point). As someone who never did a first communion, this was new to me. I have attended lots of Catholic masses and I know the concept.

Similar to my own wedding dress we wanted a dress that was simple, tea length (below knee) and twirly. Twirly was a must.

Katheryn was very excited. She had been learning about First Communion all year. She was one of the children who got to bring  the wine up. And she even answered one of the questions the priest asked during mass!

The priest went through some of the different ways to accept the Eucharist. I remember when we were kids they could only take it on the tongue. (I think some priests got bitten and now it is a choice)

Afterwards we got some pictures.

Nice and cute, kids together

 Funny picture with mommy (My favorite picture)

Funny picture with Daddy

The kids love doing the funny pictures. It lets me get all of the nice pictures

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.

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.

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!

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