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, April 30, 2013

A new normal

Cleaning house has been going....
I'm not sure if I can say well (yet), but I think it has potential.

It has involved a number of emails back and forth with our nurse. And some trial and error. And a couple of very large blow-outs. You need to laugh so you don't cry blow-outs. All I could smell all day was poop blow outs. Funny, right?
(Maybe now)

So I knew that we were doing something wrong.
And of course I'm a little bit ... lets say independent ... in my thinking and questioning and knowing what I want and how I think I should do something that I want. Like the bowel routine.

In my last post I discussed various sources of information. So I thought that I would share what I learned.

Timing is important. Specifically if you rush it, you will have blow-outs.
The internet-only information said "as fast as he will tolerate". Our nurse says "at least 5 minutes". And there is also the time for fluid to work that is needed.
So a little bit of timing changes and no more blow-outs.

I also found a research article explaining the process of what they are doing at the Cincinnati Centre. It reviewed what goes on during the week you are in Cincinnati, which we aren't going to be doing, but I thought it would get some basics down.
It did give me some questions to explore (they don't use cones, but foley for irrigation). And it helped me to understand some of the physiology of the spina bifida bowel. I gave a copy to Nick's pediatrician because he didn't know that much about the bowel program.

I've been keeping track of everything so that I know what is going on. I think it's the nurse in me - I always have to chart! I have dates, times, amount in, timing and results (just a check mark).
I'm told it takes 6 weeks, we are about half way there and I've learned things. A lot of zero's on my chart have me sure we are on the right track.

I am excited. I am trying not to be excited. But I can see it.
Big boy underwear.
I've been looking at them in the store. Pulling some off the shelf and then putting it back. I never would have thought that the thing I wanted to buy most in a store would be size 3 boys underwear.

So here we are.
It has been a change in our routine to spend 1 hour in the bathroom.
I can recite the backyardigans dvd we play by heart. But Nick is tolerating it well. It provides some one-on-one time for the 2 of us. And this is just the new normal for us.

Saturday, April 20, 2013

Informing the Informer

As I am now a working Monday-to-Friday mother, my blog-writing clusters around the weekend, and if I have a couple of things I want to write about, then I'll stagger the posting through the week.

Well today is Saturday and I don't really have anything to write.
And then I was looking through some of the blogs I follow and found this article.


It brought back some of the questions that came up from the medical conference that I went to in the fall. I thought that I had blogged about my feelings, but I must not have. It was painful and very hard for me to sit through that day. And I do not recommend to any parent to go to a medical conference about something their child has.

The months that have passed since the conference have dulled the feelings and emotions I felt, so I guess now would be the time to write about it.

This is a conference that was directed at physicians, obstetricians specifically, and geneticists, but as a nurse I could go as well. One of the topics to be presented was neurotube defects and current research and news. They were going to talk about the MOMS study and I wanted to hear what they had to say.
I thought I would learn something.

I didn't. Or at least I didn't learn anything about spina bifida that I didn't already know. But I learned something about myself, and about how neurotube defects are seen by the medical, specifically the obstetrical population.

I heard all the medical information, all of the pictures about what forms in the baby and what doesn't, as well as when ect. A couple of doctors that I knew talked. And one of the speakers (the one talking specifically about the surgery in Toronto, was unable to make it).
Dr Church, our developmental pediatrician from Holland Bloorview was one of the speakers. She actually made me cry. She talked about the medical issues that kids have to deal with, but she had a positive spin to it (of course she would - she actually sees these kids). What brought the tears was a comment about how our kids sparkle.
They had another mother come and speak to the theatre full of doctors ect and talk about her experience with her child who was born with a serious medical condition (not spina bifida) and she was very positive and made the point that even though there is a lot of medical information and concerns, it doesn't make a child any less special.

There was a conversation during the conference about informed consent. With an argument back and forth about giving the diagnosis and making sure that parents are being given informed information. Some doctors people saying that giving just negative was enough, that is was true information, others said that it has to be combined with the positives and then there was the argument of how could you know either way. There is no such thing as a fully informed decision, and doctors are fooling themselves if they think they could provide such information.

And the doctor that actually gave me Nick's diagnosis was there. My heart was pounding and my blood pressure was rising and I knew that I had to stand up and say something.

So I did. I stood up and talked about how I received the spina bifida diagnosis when I was 20 weeks  pregnant. And we were told "this is what you child has, you have 2 weeks to decide if you want to terminate." That we were encouraged to terminate, that they said he would have all kinds of difficulties, and how Nickolas does have everything that Dr Church said comes with spina bifida. But he is happy and 3 years old and not anything like what you (as in the doctors) think he is.
My voice was breaking and I was crying a bit.

And I felt like a total idiot.
But Satisfied that I had made my point.
I told everyone at work about how stupid I felt almost breaking down in a room full of people. I think It was worse in my head than it actually was. And I will never see any of those people again.
And I got to feel good about what I did, and hopefully someone will rethink their approach.
Of course I vowed never to go to another medical conference like that, unless it was directed specifically to parents.

So back to the article that got me thinking about that day.
http://bloom-parentingkidswithdisabilities.blogspot.ca/2013/04/is-selective-abortion-for-disability.html (In case you didn't read it the first time)

The article has a number of points in it, including the perception of parents who chose on a selective abortion becaue of a prenatal dianogsis. But I am not raising an abortion issue. I am raising an information issue.

Doctors actually believe that they are giving parents all of the information to make an informed decision when they tell them about all of the medical problems their child may face. They truly believe that combining this with information from families who have faced the same problems would be biased (and their are not-biased, even though many obstetricians have never seen a child with said diagnosis). Not all doctors of course, but a surprising number of them.

The article by Andrew Solomon, published this month in the New Yorker; Medical progress, social progress, and legal regression talks about abortion, both the blog and the article brought up a lot of different points, what really hit home was about how doctors are actually giving the diagnosis and thinking that women are making a choice. A quote from the article
I do see a problem, however, in the speed with which women who have no prior exposure to the conditions in question are expected to make these decisions. Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child. It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement.
I have said all along how happy and thankful I am that I felt confident and comfortable enough in myself and my knowledge to listen to myself, to explore our options and make an informed choice. Along with Kyle of course. How if we had made a quick, scared decision we would regret it, and we would be missing such an integral  and positive part of our lives.

I'm glad that other people are recognizing that there is a need for informed choice, or at least for doctors to recognize that they are not providers of all of the information parents need. That it is not just us parents that are saying it.

Another aspect of what both articles talked about was the perception of physicians about parents choice. I am not going to address this, and I find it very depressing that someone would think that we as a family are less deserving of support because we chose to have our child. That is too much to handle at the moment. I would hope that at least the 10 obstetricians that I see every day and know me and Nickolas are able to provide a more informed picture to parents receiving a diagnosis.

I recognize every day that my life is better because we have Nickolas. We appreciate things, I have a new perspective I might not otherwise have had. And  I have no problem talking to a room of 90+ people, that fear of public speaking went out the window about 3 years ago!

I feel that a follow up letter may be in order.


Friday, April 19, 2013

Cleaning House

If you don't care about poop - you might want to skip this post.

Tonight is the night for us to take the next step.

In the journey of spina bifida, continence seems to have the most impact on daily life. Not mobility, not if someone is walking or not, talking or not. It's pooping and diapers and bladder issues.

 Because that leads to social issues. I remember that day in the office, when I was questioned about keeping the pregnancy and hearing "diapers for life". And I thought we can handle that - and we can. But do we have to? Or can we have social continence. This means that we do things so that socially, when we are out of the bathroom, Nick won't have to wear diapers.

Which has led to me pushing (pretty early) to work on getting him clean. Starting with a potty over a year ago. And progressing through the different steps (starting from 6-9 months old)
  • Diet (I had a great dried fruit combo that kept Nick regular when he was a baby), and staying away from cows milk (he still drinks almond milk or goats milk).
  • Oral laxative (PEG flakes) that we put it in his oatmeal every morning, and we can adjust it up and down depending on what we need. Right now we are at 1tsp every morning (but have gone up to 3Tbsp when we really need it)
    • We have tried some other medications lactulose (didn't like it, didn't work, it was a liquid and he needed to take it too often for it work into our lifestyle)
    • Senna we haven't tried. I've heard very negative things about senna and want to stay away from it for now
    • Omega-3 and probiotics, we used this as a supplement for a while and it made a huge difference, but we still needed the restoralax. We are on a break right now, but I find it makes Nick smell like fish for a while. Will probably start it again soon
  • Stimulation. I won't describe it, I'm sure you can figure it out.
  • Suppositories. Again medication, or just glycerin (which did nothing for Nick) that we  have been trying for a while. We've tried it and have found that it is great for preventing him from being constipated, but it just isn't working for getting him clean.
  • Enemas. Using liquid (with or without something added to it) to clean out the colon more completely than the suppositories will do. The more comes out at one time with the enema the less that can come during the day. That is how he is clean.
    • There are different types of enemas.
    • A regular tip enema, but I found that using this (like a fleet enema) doesn't work. Nick doesn't have the muscle control to tighten around the tip, so the fluid doesn't stay in, which is the whole point. So this hasn't worked for us
    • A cone enema, is our next step. It is typically used for cleaning out colostomies. And it is cone shaped to fit into the hole of the colostomy, but we are using it for a different reason. The cone shape means that we can create a stopper without the muscle control. So the fluid that goes in, stays in to work, and when the fluid comes out, so does all of the poop in the colon.
  • Surgery. This is the final step. But we are not there yet. There are 2 different types of surgeries, which we will explore more when the time comes. But it takes the enema solution and starts at the top of the colon, around where the appendix is, and cleans the colon from that point and down. It seems to me to be the most effective way, but also the most invasive - because it involves surgery.

We have also been doing (for a while) some other things to maximize our results.
Bearing down, have you ever tried to teach someone how to do this? Think about it for a sec, if it doesn't come naturally, what do you say? I feel like I'm at work some days (helping women have babies). Some things that have worked for us is laughing and lifting his bum off the toilet seat.
Positioning. We have him sitting on the toilet (gravity) with a stool to keep his knees above his hips to help.
Timing. You bowels are most active about 20 minutes after you eat. So putting Nick on the potty after dinner has worked well.

So we put all of this together, did a lot of Internet searches, talked to people and got our medical opinion. And we started day 1 of a bowel routine with a cone enema.

There are a number of different websites we used, but the one with the best step-by-step instructions was from here http://lifestyleaccelerator.com/myblog/health/bowel/ and she actually has a video to go with this. http://youtu.be/_hINaZkGWwg

Then I had to figure out what to actually purchase.

We ended up with the product from Hollister and I searched to find the best deal online at Canmeddirect What we needed was a kit with the bag, the tubing and the cone. About $50.

It took over 1 week to determine if what we purchased was latex-free.
Nothing on the packing says anything about latex, which I was very surprised by. And when I looked in the Hollister website, I found their response was very confusing.
The specifications for Hollister ostomy products do not include natural rubber latex as a component. The specification for products and packaging do not include natural rubber latex as a component, and our component suppliers do not add natural rubber as part of their production process.
 So of course I put the quote on facebook and got every one's opinion. Which is that legally companies are no longer able to say "latex free" so this is the wibbly-wobbly way of saying that it is latex free.

So. With my head full of all of this information, all of my supplies present and accounted for, our bathroom appropriately set up (we put a hook on the wall above the toilet to hold the bag), I printed out all of the directions I could find. Had directions from our nurse for the type of fluid to go in the bag (I have seen a wide variety of different recommendations for fluid).
I also had a bag of toys, a dvd player and some books ready to distract Nick to sit on the toilet for 30 minutes. And we talked about it.

I told Nick that we were doing something different today to help him poop. He was positive about it (which is good considering he hates when I have to help him poop).

And it went well.
It didn't bother Nickolas at all. He wasn't bored sitting on the potty and we got results. It wasn't messy, no leaking around the cone and it was easy.
After 30 minutes on the potty the diaper went back on and we were ready for bed.

I'm chalking it up for day 1 success.
But just because day 1 went well doesn't mean anything. But I'll still celebrate today's success!!

I also shared my knowledge on my "I want to learn about spina bifida" blog too!

Tuesday, April 16, 2013

What's New at SB&H?

You might recognize a face on the home page of the Spina Bifida and Hydrocephalus Association of Ontario.


Or on the facebook group page...

How lucky I am to see that face every day!

Saturday, April 13, 2013

A growing boy

You know how you don't notice something that is right in front of you ever day.
Looking over some pictures from last April something very obvious jumped out at me!
April 2012
April 2013

My little boy is growing  up... literally!

Wednesday, April 10, 2013

Campbell's School

We found out this week that Nickolas got accepted into the Campbell's School in September.

This takes a huge load off of my shoulders!

All the worrying about how to make the school identify and care about Nickolas' needs, make sure the school or classroom at least is completely accessible. What is a IEP, what school boards have to say, special needs teachers and legislation.
The resources and information that I poured over in November.
I don't have to do it all by myself now.

This is what the school does. This is the type of school for parents to transition.
They know the information, they know.
The classroom is accessible, the whole school is accessible. (Even if they don't know how to spell Nickolas)

All of that is a bonus.

Now we can just concentrate on the learning.

I have been happy that Nickolas got into the school. I have heard very positive things about the school. It will be so great for him, it is the place where he has the most conducive environment, with the most opportunities for him to reach his maximum potential.

But the kids will be separated for this year, be in a different school with different teachers, it makes me sad. It is so great that both kids are only 1 school year apart, and they won't get that for this year, which makes me sad. But it is only a single year, in 14 years of school that is ahead of them.
There are things about spina bifida that make me sad/mad and the need for my kids to be separated for each to have the best opportunity is one of those things.

But it is one of those things that just come with the territory. And so I look past my feelings and look at what is the best thing. And it is Campbell's School, without a doubt.
So I am happy that he got in. I am so happy that we have this opportunity, that it is even an option.
And that with this opportunity we can take away the fact that spina bifida and hydrocephalus creates challenges and focus solely on education and learning, along with socialization and therapy.

So in the end, I'm happy. We all are.

Monday, April 8, 2013

Spina Bifida Clinic - Carry On

We had our spina bifida clinic this week.

It has been almost 14 months since our last full appointment, and even though most things have stayed stable and relatively in control, I still was ready for this appointment. I had a couple of focuses - school and poop. And we had a whole group of families who were going to be able to meet up at lunch!

Nick got his game face on!

We had him walking around in his walker the entire time. Showing off to everyone who got to see him grow up until our baby group ended in last spring.
I had some things that I wanted to focus on.

Number 1 - I want a bowel routine. (Skip ahead to Number 2 if you don't want to talk poop). Something effective, something that will help us get out of diapers. Something that is not suppositories (which we have been trying for the last year). I have been trying to get a routine for almost a year! I talked about it in this post last May. And we have (knock on wood) solved our constipation problems and want to work on our clean-out issues.
The advice that we got was to continue with the suppositories, that it will take weeks to get results. To be consistent. To time things appropriately (sit on the toilet 20 minutes after eating, knees elevated).
We have been doing this. For a year. OK so we haven't been that consistent in the last couple of months, because it seems to be messier for the day after we do this, because it seems to work well for consistency but not for routine.
And even though I trust our nurse Julia and value her expertise and opinion, I also trust my own instincts and believe that we are past this point and should be trying something new.

Number 2 - I want to be as ready for school as we can be. And I talked about my concerns. A lot.
We talked about how far he has come in the last year. I sometimes forget that 18 months ago he wasn't talking at all. And now he talks as well as Katheryn.
But I'm worried about his learning. I am always aware that spina bifida makes him more likely to have learning difficulties (but I'm not sure what that looks like yet). And I'm worried that some of the things that I'm seeing now with his learning are more spina bifida/hydrocephalus related and less 3 year old/boy related.
Specifically that he is counting, counting numbers and counting things (to about 15 - which he has been doing for a while) but he isn't able to recognize numbers, or letters. We've been working on it, but he isn't showing any progress with recognizing numbers or letters.
I'm not sure if it is how I am approaching it - "Nick what letter is this" and he freezes. Or that he just isn't getting it. I've started pretty simple. When he does reply he usually says "A" or "4" for almost everything. Or just doesn't say anything at all.

We talked with the clinic psychologist as well, about school needs and expectations. But at the moment we still don't know what school we will be going to (but since we haven't heard and it is April, we are hoping that means yes to Campbell's). So we will follow up with her in the summer some time.

Number 3 - I wanted the opinion from physiotherapy about forearm crutches. Pretty much she blasted that idea out of the water. (This is the same physiotherapist that told us that Nickolas functioned at the L3 level, which I have never believed.) And it is not the physiotherapist that we have seen primarily at Bloorview, so I'm not actually confident that she is aware of Nickolas' potential. So I won't always agree with her opinion, but still listen to what she has to say.
Kyle and I have been thinking of fore-arm crutches for Nick, to make something that going around the classroom easier and less bulky than the walker. And last summer he was doing so great with the canes that I have been looking on and off for some canes for us to purchase. But somewhere along the way the idea of the forearm crutches came up.
After we got over the initial strongly negative reaction to discussing crutches, I actually heard what she was saying. The base of a crutch is one point, whereas the base of the cane (quad cane) is 4 points and a stronger base. But he has to have pretty good balance for it to be effective for mobility. Right now his walker gives him the ability to stop and rest when needed, and this isn't there for canes. He must be stronger and more solid to use something that is not the walker.

We went through all of this before lunch.

And lunch was a very important event for us.
Because we had a date.
Through the facebook group we discovered that 4 of us families were all going to be a Bloorview for clinic on the same day. So we all exchanged numbers so that we could connect. There was actually a whole lot of people that we knew that day. Unfortunately our times didn't meet up with Stefanie and her son, but we did get to have lunch with little Alejandra and mom, and also meet a little girl who I knew before she was even born, and her parents! Another family who I have talked to online was also there to meet for the first time in person.
This was our lunch group:
Josh, Amberly and Claire, Antonella and Alejandra, Nick, me, and Kyle - and in the corner (no realizing she was in the picture) is Shauna, who tries to be at all of clinic groups. As a representative of SB&H.

We hurried through lunch, to wait and wait and wait in the waiting room for our afternoon appointments. During this time we got to connect with some other families we knew from baby group. And see how much everyone has changed!
Nick had a lot of fun playing with another little girl on the carpet. They were chasing each other around, she is walking but spent a lot of time crawling on the floor with Nick as well which he really liked!
Nick gave up on his walker to crawl around on the floor. Or what he is doing in this picture - which is raising up on his knees. He has been spontaneously doing this for a couple of weeks, getting stronger and stronger! (And higher than in this picture)

The end of the day was spent with the docs. They didn't tell us anything that we didn't already know. Orthodically he is great. (I can a concern about his legs bowing a bit, but the bone doc said it wasn't anything to worry about - so I won't).
Urologically we got a lot of information from a surgeon. Because that is what he is. He spent the entire time talking about the MACE surgery versus a caecostomy button and explaining the 2 different procedures.

This is a surgical procedure that gives us (and in the future Nick) the ability to clean out the colon from the top down (antegrade enema). So that enema solution can go in the top of the colon through a stoma (hole) from the outside of the body to the inside. It is supposed to be a very effective way to achieve social continence and is more effective than the bottom up (retrograde enema) approach of regular enemas. 
There are 2 different ways to do this, 2 different types of surgeries. Including a simple radiology procedure to put in a tube from the outside to the colon (like a g-tube) - the caecostomy. Or a laproscopic surgery to use the appendix to make a natural tube from the belly button to the colon  - the MACE.

It gave both of us an opportunity to ask questions, get answers. I have looked extensively into these surgeries and made my decision of what I would want (MACE) but Kyle hasn't. And while the doctor said we could do this at any age, I'm not ready to put my son under the knife until I am confident that we have tried every other option there is out there. It also gives us an idea of the procedure to follow once we make the decision that it is time. In my mind I'm thinking 6 or 7. But the idea of an elective surgery for my child still makes me a little sick.

So that was our clinic visit in a nut-shell (like a coco-nut). I hadn't expected to write so much.
Clinic didn't have any big news, it was pretty low key. It mainly reinforced things that I already had in mind and gave us a plan.
Good thing nothing major happened, because this visit actually fell on Katheryn's birthday. And our day was jam-packed full of birthday-traffic-clinic-traffic-birthday-dinner-sleep.

Hopefully we will have an uneventful (but community filled) clinic visit every year!

Saturday, April 6, 2013

A Butterfly Birthday

Katheryn turned 5 this year.
And that is a pretty big deal!

A couple of months ago the planning started, and Katheryn said she wanted to have a butterfly/fairy party

We have started a tradition of dressing up for birthday parties (of course what is more fun than that?!)
And Katheryn really enjoyed her tea party birthday last year.

She had a couple of wishes for her birthday. She wanted a pinata (done) and a bouncy castle (unfortunately I had to nix that idea)

 The pinata was definitely a hit (not literally).
I had no idea that they made ribbon pinatas and was worried about giving a bunch of kids a big stick. Luckily I have a friend who knows about these things and each kid got a ribbon to pull.

 And then the collecting began.
The older kids (who cared the most about what was there) got the most.

But everyone left with a loot-box of toys

After a candy-filled Easter last week, there was only the minimal amount of candy. Most of it was little toys and stickers, glow sticks, dinos, princesses ect.

 I got a nice mom and Katheryn shot! With both of us looking and smiling.

Katheryn was full of smiles all day.
And had a lot of fun with everyone who came.

Everything she got she was thankful for, she opened and looked at all of the cards. Every times she opened something she said "Oh wow"

She loved the butterfly cake, and blowing out her candles. For the first time she really enjoyed a house full of people singing happy birthday to her!

And of course the house full of butterflies, fairies or other bug-creatures.

The fun-filled day ended with the kids asking to go to bed, but first we had a get a quick sibling picture (complete with rackets that they did not hit each other with - this time)

Happy Birthday baby girl! 5 years is a such a great milestone!
So much has changed in the last 5 years and you have brought such joy to all of our lives. Our lives have completely changed and life is so much better than we ever could have imagined it to be.

Tuesday, April 2, 2013

Doctor Nick is in

It's time for a check-up!

Nick was a very gentle doctor, and did the full medical-kit with his cousin.

 Then cleared everyone for play!

Monday, April 1, 2013


Any time there is something to dress up for, I am always hoping to get some pictures of the kids together.
First we had to practice the squinty-eyed smile!

Then the laughing face - everyone say "bunny poop"

And finally success! Two kids, looking at the camera, eyes open, what could pass as a smile on both faces.

 And I think that I matched them pretty well too!
For both family days!

They were actually pretty good posing for pictures this weekend, they always wanted to see how the picture turned out afterwards!

We had smiles all-around this weekend, in front and behind the camera!