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!

Saturday, January 23, 2016

Helping in the kitchen

Nick has wanted to help more in the kitchen.
So we decided to start with his favorite food. Meatloaf!

I tried to get his hands all in the meat. He didn't really like it and wanted to go back to using the spoon. Nick helped with everything (except loading into the oven)

Nick was so proud of himself and ate everything.
He can't wait to do it again!

Thursday, January 21, 2016

Our Sammie, Resting in Peace

In 2006 Kyle and I started our life together, bought our house and once we got grass we brought home our first baby.

Samwise, our Sammie was a Bernese Mountain Dog, which met both of our requirements; a big dog and good with children. And Sammie gave us both for almost 10 years. Yesterday, our Sammie left us very suddenly and very peacefully. He went out into the backyard and never came back, and we found him lying in his favorite spot.

Sammie was a gentle giant. He didn't actually realize that he was a big dog. He thought he was a lap dog and would climb up wherever you are.

 Sammie loves sitting on your feet. When anyone came to the door he would jump up at the door until they came in. Then he would swing his bum around (taking you out in the knees) so he could sit at your feet and look up at you.

He also had excited pees. And he was always excited to see you when you got home. So as soon as you got home you couldn't touch him (or he'd get excited and pee) you had to put him straight out. And once he came in you could give him all the love!

He did get into a fair amount of trouble. Including eating our wall. Not just once or twice. I think I patched it up 3 or 4 times before I just left it half eaten until he grew out of that stage.

Sammie also was used to the comforts of life. Not only did he get up on the couch, but he also required pillows. When he was starting to get arthritis and had difficulty getting up from the floor, we got him his own dog bed, but he didn't like it and never used it.

Once Katheryn came home Sammie fell in love and became her big furry protector.

And Katheryn loved him. She wanted to be everywhere he was.

Her favorite thing was the climb all over him

And when Nick came along, he just added one more to his fold.

When Rory first joined our family, Sam wasn't too sure about her.

But Rory brought a new bounce to his step and she tried to be as close as Sam would let her be. She is missing her buddy.

The kids are upset, Katheryn as the oldest is understanding death more. And they understand they won't see Sammie again, but we can talk about him and remember him.
We found one of the kids old stuffed toys of Sammie and put his collar on him. We got a name tag printed as well and Katheryn hasn't let the stuffed Sammie go. She has brought it to school and carries it around with her, and even sleeps with him.

Sammie gave us almost 10 years as a loving and loyal dog. He loved his other family dogs. He was a beautiful dog and we have a huge hole in our hearts.


Sunday, January 17, 2016

Awake MRI

Yearly MRI's are not anything new to us. We usually travel down to Sick Kids every 2 years for a sedated MRI.
I think that Nick has had 4 or 5 MRIs (not including the one in utero). He had one just after he was born, I remember them wheeling him down in his bed. I think he had another one in 2010, but I can't actually find the post for that one, so maybe not? Nick had regular MRIs done in 2011, 2012 and 2014. These are all to look at his brain and spine. And we have been (knock on wood) so far, so good.
All of these MRIs involved sedation.
Because Nick was young, and it is important to stay perfectly still while they take pictures, it is standard to use sedation and have the child go to sleep with general anaesthetic. This makes the MRIs more involved (and riskier, with the risk of general anaesthetic). It also involves some sort of recovery, because general anaesthetic throws your body off.

When we had our last neurosurgery consult and Dr Rutka ordered an MRI, I asked about having an unsedated MRI. I was told they usually start doing this at 6 years old. Nick is 6, so I wanted to try. I think that he will be able to stay still long enough.
If he is not able to stay still, we will have to reschedule the MRI on another day.But I thought it was worth a try to be able to skip the general anaesthesia.

I have had an MRI myself (when I was pregnant with Nick) and so I know what it is like. I remember needing to stay perfectly still. It was loud and there was a speaker for the tech to talk to me. I kept my eyes closed the entire time because I knew that the machine was a couple of inches away from my face. And to keep myself calm and to distract myself I sang (in my head) the entire Act 1 of Phantom of the Opera. The MRI took about an hour, and so did Act 1.

Keeping my own experiences in mind. I wanted to find a way to prepare Nick for the MRI. When they called us with the appointment day and time, 545pm on Feb 4th, I asked about preparation but they didn't really have any suggestions other than to search for youtube videos. (Which I was surprised about, that Sick Kids didn't have their own video like other hospitals).
I am most worried about how Nick will react to the noises. As loud noises bother him anyways.
This video has some examples of some of the noises.

Nick knows another boy, a couple of years older than him, who had an MRI done recently. So he was talking with Nick about what to expect.

I have also been looking online for some resources.
This link: http://www.texaschildrensblog.org/2013/04/preparing-your-child-for-an-mri/ has a child life specialist who talks about the MRI, it is similar to the above video, but I don't find the noise to be as clear.
Some other resources that I found are:
Specific for Brain: http://kidshealth.org/parent/system/medical/mri_brain.html?tracking=P_RelatedArticle
Specific for Spine: http://kidshealth.org/parent/system/medical/mri_lumbar.html?tracking=P_RelatedArticle

While I am discussing MRI. I also want to understand what information we are getting from an MRI. An MRI is considered to be safe, and does not involve any radiation. Instead it uses magnets and radio waves to take pictures that can create a 3D image of the body. It is important to stay still while the pictures are being taken so that it is a clear image.

The MRI of the spine looks at the bones, spinal cord, nerves and disks. The MRI of the brain can ensure that the shunt is working, but also give a clear picture of different structures of the brain.

So we are hoping for a successful non-sedated MRI which will show that everything is stable. My concern (which is always my concern) is that the change in bracing and the weak knees is a sign of tethered cord and that there is something going on inside that we can't see.

Friday, January 15, 2016

Winter and Recess

Winter started in full force when the kids returned from winter break. There was snow and ice and it was cold. Often Nick will come home and tell me about his recess and who he played with and what they did.
The first week of January he didn't have any stories. He just said he stayed inside.
Trying to ask Nick about why he didn't go out for recess he said he didn't know, and then it was that there was snow, or the gate wasn't plowed.
I spent some time back and forth with his teacher about why he wasn't going outside for recess. I was upset that he might be excluded from normal school activities like recess.

 There were a number of different reasons. First is the time of getting him ready to go outside takes longer than the other kids and it cuts into school time. Second is that they are worried about him falling on the ice. Third is that he gets cold easily

After discussing I understand. I don't want him missing classroom time to get ready, on top of his cath time. So he will be going outside with has classmates at lunchtime recess and for the short recesses he will stay inside and get to pick a friend to play with him.
I did say that if they are worried about the ice and his walker, then he can go outside with his wheelchair. As well instead of getting his snow pants on, he could cover himself with a blanket and sit in his wheelchair.

We will see what we end up with. But I want to hear more stories about his friends.

Tuesday, January 12, 2016

Bladder plans

We had our follow up with urology from October.
We left at that time with a plan to increase cathing time and to record outputs. I didn't really want this to be the plan at the time. I wanted more action, to actually do something to prevent leaking instead of emptying more often.

The increase in cathing time we were not that great with, but most of the time we were about every 3-4 hours. At school it increased to every 2 hours; which means he is out of class for 45 min a day (3x 15 min). And we were still getting some leaking. Over Christmas break I recorded all output to have some data to bring.

I brought all of our information for our urology appointment. We met with Dr Lorenzo's nurse practitioner Abby and she spent a lot of time discussing options with us. Because Nick is leaking probably about 80-90% of the time.

So some of our options are medication increase or changes.
Currently the only medication Nick is taking is called gelnique daily and restoralax once a week.

Oxybutynin is the medication of choice for neurogenic bladder. It is an anticholinergic medication and relaxes the smooth muscle of the bladder.

Gelnique is Oxybutynin in gel form. It is topical, which means we put it on his skin and it gets absorbed.  Because it is absorbed in the skin and not in pill form we have noticed a decrease in side effects such as flushing, over heating, constipation.
Because we are currently using this already, the option we discussed is increasing the gelnique. It is expensive, and the more you increase the dose the increased chance of side effects.

Another option is to try oral medication.
We have used Oxybutynin in a liquid form (one of the reasons Nick has had so many cavities). But at 6 he might be able to tolerate a pill form. But the pill form increases side effects. My worry is that we are really good with our bowel routine. And I don't want to mess that up. Currently Nick takes one medication a day and one medication weekly. To take oral oxybutynin he would have to take this medication 3 times a day, and we would have to offset the constipation with medication daily or every other day.
This isn't really something we want to do right now.

Oxybutynin can also be crushed and flushed into the bladder. This would be similar to the oral dosage (3x a day), but with less side effects because it is right at the source. It is time consuming and can be messy. In the end, Dr Lorenzo didn't recommend this.

There are other medications called Detrol. I don't know very much about the medication, other than it is used as an alternative to oxybutynin.

Then we discussed other options.
These are more invasive options and now the question is, what is more invasive? Putting a variety of medication in your body on a daily basis at a dose so that it will work. Or trying something else.

The other option (and one we are going forward with) involves general anesthetic in the operating room for the purposes of a cystoscopy. A cystoscopy in adults does not need general anesthetic as it does not involve any actual surgery (like incisions and stuff). But in a child, they do it with the child asleep. (Similar to when Nick needed general anesthetic in the operating room for his dentist work last year).

A Cystoscope is a tube that goes into the urethra and into the bladder, the tube has a light and a camera and things (like a needle) can be passed through the tube to inject into the bladder. 

The cystoscope allows the doctor to inject Botox into spots in the bladder. Botox is also known as botulinum toxin, a name that makes you take a step back. We are giving our child a toxin?! It is of course known most commonly for cosmetic reasons, by weakening facial muscles and smoothing wrinkles. But that is exactly what we want to do to the bladder.
Botox treatment for urinary incontinence due to neurogenic bladder in children is an approved use. It does exactly what it says it does. It paralyzes (relaxes the spasms of) the bladder muscles by injecting into the bladder in multiple places. This is done through the cystoscope.
The effects of the Botox is temporary and will need to be repeated. When discussing it with Abby she said about every 6 months. But as the effects of the botox starts wearing off then we can start looking at medications again.
The botox injections means that all other medications can be stopped while the botox is working. I personally used Botox injections to treat my hyperhydrosis (excessive sweating) and found that it worked perfectly for 6 months, and the following 6 months it still worked but not perfectly. And by a year I was back to where I was.
Most of the side effects of the botox (difficulty urinating) we already cath, so it is not an issue. But infection is the most common side effect. I have seen some studies that recommended antibiotics.

The other option that we discussed was a Bulking agent. This means an injection (through the cystoscope) of a bulking agent, such as collagen at the bladder neck to make the bladder neck tighter. This means that by moving around and being more active (like at school) the bladder won't leak. We talked about this with Abby. She said that if it looks like the bladder neck is open a lot, then they will do the bulking agent. This isn't something that would need to be repeated. If it isn't open and leaking, then they won't do the bulking agent.
I would hate to do it, and inject something and then not be able to advance the catheter. Because we still need enough space in the bladder neck to advance a catheter.

So these are all of our options.
I spent a lot of time talking back and forth between medication and procedure (I don't really want to use the word surgery). But we left with a plan.
Temporarily increase the Gelnique to 2 packs a day and wait for a operating room time (hopefully within 3 months). That way we are doing a little bit of both options. Try medication for a bit while we wait for the procedure (which we can cancel if we want to).

One of the funny things about the appointment is that everyone kept apologizing for taking so long. It took us 2 1/2 hours to get to Sick Kids for our 1030 appointment, we waited about 20 minutes in the waiting room and then just over an hour for our appointment. I laughed and said that it took longer to get here! Then it took another 3 hours to get home.
We do take public transit (Go Train and Subway... except our stop for Sick Kids isn't accessible), and we walked back down to Union Station and stopped to eat on the way home. This is why an hour appointment takes all day

Sunday, January 3, 2016

Starting 2016!

We brought in the new year with lots of fun in the snow!

It has been a great annual tradition to go up to the cottage and celebrate New Years (Kyle and the kids started without me, because I had to work New Years this year).

This year it was perfect snow for some sledding.
Nick would go down the hill on a thin sled, and then we would pull him up with a second sled

Rory had fun chasing the kids down the hill.

Sam spent his time just barking at the kids sliding down!


Nick spent more time out in the snow this year than he has in the past. But he does get cold faster (between sitting on the snow and not moving around that much). He uses his walker in the snow, but usually just waited at the top of the hill until it was his turn again

The kids were very excited when I said that I wanted to try. And Katheryn wanted some terrified pictures

Don't let all the snow fool you though. The lake isn't anywhere close to being frozen!

On our last night the kids wanted to do some night sledding
But it was really dark at the end of the run

They had some snow ball fights

And we had a fire (but no marshmallows)

And I enjoyed my own New Years celebration in the snow