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!

Monday, June 30, 2014

Spina Bifida and Hydrocephalus Awareness: Week 4

It is the final week of awareness. I'll admit there were some days that I couldn't think I'd come up with 30 different things to talk about. But after a while it just flowed.

Spina Bifida and Hydrocephalus Awareness: Day 24
Social relationships are also important within our big family of spina bifida moms.
Just as it is important to have someone to talk to and be just a regular mom, it is also important to be able to talk to someone who just gets it.

There are a number of outlets for this. I was lucky that there was a parent-baby group for the first couple of years when Nick was younger (until they cancelled it) to actually get together in real-life. Social media has replaced a lot of that personal interaction, but it still has a group of people who just get it.

Baby Center has a group Spina Bifida Kids, there are a bunch of facebook groups (including Living with Spina Bifida and Take That! Spina Bifida) and of course my own group Our Lives, with spina bifida for family, parents, children and adults with spina bifida who live in Ontario. And I can’t forget all of the blogs that are out there (including my own).

During the first couple of years after D-Day I scoured these blogs and groups and tried to find what life would hold for us. Until we just started living our own. Now I use these groups because somewhere out there someone has the same thought as me, or are thinking of the same surgery, have the same concern, or just want to vent. It is for those questions that you want to make sure you have all the information before you get the doctors opinion. As well it gives me the opportunity to give my own experiences to others.

Spina Bifida and Hydrocephalus Awareness: Day 25

I talked about Hydrocephalus and a shunt waaay back at the beginning of the month. But what is a Shunt?
If hydrocephalus is too much cerebral spinal fluid in the brain, then is there a way to take that fluid and put it in part of the body that can absorb it?

The VP shunt has been used to treat hydrocephalus since 1949, and the valve in the shunt was designed by a father (John Holter) of a child with spina bifida and hydrocephalus who just needed to DO SOMETHING, and thought that he could. And he did, creating the Spitz-Holter valve, a design that is still used today. This father continued to manufacture the shunts by hand, supplying over 500 a year.

 The shunt is 2 catheters and a valve. One catheter is inserted into the brain (into the ventricles) to take the fluid out, then through the valve (that is located against the outside of the skull) and takes the fluid through the other catheter, down the body, (under the skin) into the peritoneal space in the belly.

There are times the shunt stops working (called a shunt malfunction) for various reasons. This is an emergency as the fluid that is normally being drained is now building up in the brain. If this happens then it needs a shunt revision.

Symptoms that we are always on the lookout for a shunt malfunction includes
·         Headaches
·         Vomiting
·         Excessive sleepiness, can’t wake up or stay awake
·         Irritability
·         Vision problems
·         Changes in eyes, including crossed eyes, uncontrolled eye movements, sunsetting of eyes
·         Seizures
·         Personality changes

The shunt is not a cure for hydrocephalus, just an ongoing treatment.

Spina Bifida and Hydrocephalus Awareness: Day 26

Today is Nick’s last day of school. So I’ll talk about learning and that spina bifida and hydrocephalus are associated with learning disabilities.

Just because there is an association doesn’t mean it will happen, but being aware of different ways that our kids might learn can help to make sure that Nick succeeds. Anticipating.

I have a whole book all about this (thanks to SB&H). So there is a whole range of different things and areas that Nick may or may not need help with over the next years.

Information processing is the area that kids with spina bifida and/or hydrocephalus may have problems with. Numbers and symbols, visual-spatial processing, making connections and organizational skills are all identified as areas that may be difficult. Kids with spina bifida seem to have a cluster of strengths and weaknesses identified as ‘non-verbal learning disorder’ (NLD).

Knowing that these are areas that may cause some frustration and trying to problem solve how to help Nick learn. And more importantly identifying strengths and working on these.

We are just at the very, very beginning of our school-learning adventure and I’ll probably know a lot more over the next years.


 Spina Bifida and Hydrocephalus Awareness: Day 27

We had Nick’s neurosurgeon appointment this week. To review our yearly brain and spine MRI and to look for or rule out tethered cord.

Tethered cord is the next battle to watch out for. Usually is will occur around the age of 5-10. The spinal cord usually floats free in the spinal column, protected by all of the vertebrae bones in the back.

 But with spina bifida, the spinal cord is held in place by the scar tissue that is created with the original myelomeningocele repair. So as the child grows and gets taller the spinal cord is held in place (tethered) by the scar tissue. This causes it to be stretched and damaged or have limited blood supply to the cord.

There are a number of symptoms for us to watch out for. They aren’t necessarily obvious, but sneaky signs that you might not notice from day to day. These include a change or decrease in sensory, muscle weakness, pain or a change in bladder and/or bowel function.

There is surgery to untether the cord. Surgically loosening it from the scar tissue. This won’t improve any function that has been lost, but it will prevent further loss of function. But doing surgery to untether from scar tissue will actually create more scar tissue. Then that scar tissue will tether so another surgery will create more scar tissue and it is a cycle.

So it is a fine line between maintaining function and preventing surgery and scar tissue.

We got the all clear by our neurosurgeon this week. But it is still on our radar.

Spina Bifida and Hydrocephalus Awareness: Day 28

It is in one month that Nick is going to have surgery. It is bowel surgery, because while I’ve talked about a lot of the issues regarding spina bifida this month, I didn’t really touch on the bladder or bowels. The nerves to the bladder and bowels are damaged.

The bowels don’t really want to work. So we have a lot of constipation and continence issues. We have been treating this for the past 4 ½ years and tried all kinds of options. The surgery option have been reached after a lot of trial and error and consideration. It will have a profound impact on Nick’s daily life and independence.

 The surgery is called the MACE which stands for Malone antegrade colonic enema. It allows a catheter to go into the belly button, through a one-way passage (stoma) created in the appendix (which is attached to the colon) and allows enema solution to be given directly into the top of the colon. When the catheter is removed the belly button looks like a deep belly button. After it is healed, it doesn’t need anything to cover it.

This way of giving an enema (as opposed to the traditional way) is more effective in preventing constipating and improving continence as the colon will be empty and prevent accidents through the day. It also allows Nickolas to gaining independence to be able to do this himself.

 We are 1 month away, I’m nervous about what it will be like for Nick having surgery, anxious for the recovery to be started and then finished, but know that this will go a long way in Nick’s quality of life.

Spina Bifida and Hydrocephalus Awareness: Day 29

Latex allergy is one of those funny things with spina bifida. There is something about having spina bifida that makes people prone to having a latex allergy.

Historically they thought it was because of the early exposure to latex through surgery, but even after ensuring latex precautions immediately (I insisted on latex free from delivery) severe latex allergies develop. So we treat Nick as if he has a latex allergy.

Natural rubber latex (not the fake stuff) can cause severe anaphylactic allergic reactions at some point of exposure. The more exposure, the more likely to develop the reaction. Natural rubber latex is in a bunch of stuff, including many of the ‘all natural’ products. It in a surprisingly number of regular use items.

Our biggest worry and no-no is latex balloons and latex gloves. These are made by pouring latex into a fine coat to make the stretchy, rubbery surface. When balloons are popped or gloves are removed it releases latex into the air.

As well anything that goes into the mouth (i.e. dental products, pacifiers, nipples) or remains on the skin (i.e. bandaids) or that is obviously rubber (i.e. rubber bands) are not in the house.

Spina Bifida and Hydrocephalus Awareness: Day 30
I thought I would end my month of awareness with a PSA thanks to a fellow SB Mommy Joanna.

And that is it.
I hope over the month that I have helped to increase awareness and helped you to learn something you might not have know.
And at the end of the day, even with all of the medical stuff and concerns, this is what spina bifida looks like.

Not because he was born with spina bifida or in spite of being born with spina bifida. But because he is Nickolas, a little 4 1/2 year old boy who LOVES AND LAUGHS.


Friday, June 27, 2014

School Years

What a great year!
Nick in September, 2013
First Day of Kindergarten

June 2014
Last day of Kindergarten

Katheryn on her first day of Senior Kindergarten
September 2013

Last Day of Kindergarten!
June 2014

Thursday, June 26, 2014

Last day of school

Today is Nick’s last day of school.

School has been good this year. I was worried about it, about giving up control and trusting someone else to do it.
I spent 4 years being in charge of everything, spina bifida related especially, and then you send your child off to school and give some of that control over. School involves a lot more than just putting your kid on a bus and waving good-bye.

There were all kinds of considerations and worries that I had in September. The bus was my first challenge to get over. Your child must be able to get up and down the stairs independently to ride the bus without a wheelchair. So Nick took the wheelchair every day (even days I forgot it in my car after a night shift and I have to take him in myself).
In the end his bus driver was amazing and I wasn't worried at all.

Then is the question about mobility in the school. How will your child move around the school? Is the classroom accessible? Is there enough space for a walker or wheelchair to move around? Now the bathroom question. Catheterizing, who and when and how are they trained to do it.

Again, Campbell's is built for kids with walkers (and more) and has all the space needed.

There is the social aspect of schooling, including the fact that your child might be the only one with diapers. Can he keep up with his peers? Will his classmates be accepting? Will you child be social or shy? What/who assistants does Nick need to have in the classroom? And therapy. Nick continues to have his 3 therapies (OT, PT, ST).
The social part we had more trouble with, especially around the diaper issues.

In the end Nick had 3 really great friends that he talked about all the time.

And today is the big day.
Graduation Day

Because not every child is returning in the next school year. The last day of school is a graduation for all of the kids.

And Nick walked all the way up with his canes for his certificate
Nickolas was very proud of himself!
And even though he is returning next year it was great to see him so excited about graduating into SK.
He said good-bye to all of his teachers and his friends.

But it was hard that he didn't really get that he might never see his 3 best friends again. But next year will bring new best friends, and grade 1 will brings friends in his home school.

We were teasing Katheryn that since Nick finished on the Thursday, and she finishes tomorrow on the Friday, that they are both SK's now.
She didn't think it was as funny as Kyle and I did.

Now it is getting ready for all of our fun and excitement over the summer

Monday, June 23, 2014

Spina Bifida and Hydrocephalus Awareness: Week 3

This is the 3rd week of awareness. I didn't realize at the start just how difficult it would be to come up with 30 individual topics. But I still came up with stuff to talk about every day (and I combined 2 days because I was going to talk about the healthcare centres in one day, and doctors on the other day).

Spina Bifida and Hydrocephalus Awareness: Day 17
Siblings. Spina bifida has an impact on your family, both your life and your children’s. There is an impact on any family when a new child is born.

 We were told to consider the impact having a brother with spina bifida would have on Katheryn’s life. And when I was pregnant that was one of the hardest things. Katheryn was still a baby (there is only 19 months between them) and I worried SO much that I was taking away from her.

Now I can laugh at myself. There was no taking away from her. There was adding… multiplying! Nickolas has had a profound impact on Katheryn’s life. Not only are they always laughing and giggling away (when they aren’t yelling and hitting and teasing each other), but I can see how great they are for each other.

And if you want to see how sibling life is like in our house, this video from last year is priceless!

Katheryn is very in-tuned to the needs of people around her. Whether it is someone needing help on the playground, waiting her turn, carrying canes and crutches and backpacks, helping someone who fell down or getting help from an adult... Katheryn helps Nick, sometimes too much (like pushing the wheelchair when Nick is supposed to be moving himself), but doesn’t complain and likes helping.
She is getting older and understanding more what spina bifida is (and very excited for our walk on Saturday). It is a balance of everything in life, that our world does not revolve about spina bifida, and just because this is what Nick was born with doesn’t mean he is any more or less special than Katheryn. So spina bifida and hydrocephalus awareness today is all about Katheryn!

Spina Bifida and Hydrocephalus Awareness: Day 18 and 19
We have been lucky to have reasonable access to a number of different healthcare centres and physicians that gives Nickolas all of the care he needs. I thought I’d combine the 2 days and talk about the hospital and doctors who are involved after a spina bifida diagnosis.

 We started off with Mount Saini, and their genetics clinic and their pregnancy clinic. It was the genetics doctor who was the one who organized everything for us in those first couple of days, to give us all of the information to make an informed decision. At the pregnancy clinic I was followed in combination with my own OB for all of my prenatal care for us and got us Nick was transferred out as soon as he was born though.

Then came Sick Kids. A world class hospital. Nick sees his neurosurgeon, Dr Rutka, through Sick Kids. For those first 2 weeks that was where he got all of his care, including the initial follow up with urology and plastics (for his scar). We still see neurosurgery every year for a check up and MRI.

Next was Holland Bloorview Kids Rehabilitation Hospital, we started there at 2 months old. This is one place to see everyone in clinic days. These days include Dr Church our developmental pediatrician who runs the clinic. We love her! We also see urology, orthopedics, psychology, as well as nursing, physiotherapy, occupational therapy and social work. These clinic visits are now yearly and include bladder x-rays and ultrasounds while we are there. We’ve also seen ophthalmology at Bloorview as well. We were seeing orthodics for the first 2 years as Bloorview.

At 1 year we got picked up by Grandview Children’s Centre in Oshawa (there was a yearlong wait list). There is a developmental pediatrician, as well as the therapist that I’ve talked about Day 12. We’ve started to go to Grandview for orthodics last year as it significantly cut down on our travel times and we found the care comparable.

To round out the picture Nick also has a family doctor (who we hardly see) and a general pediatrician, Dr Montgomery who keeps us on track and we see every 6 months. And we have recently started going to a kids dentistry clinic as we have found Nick’s teeth have developed a significant  number of cavities.

So if you are keeping track, that is 4 healthcare centres (and 2 additional individual clinics) and 13 doctors and all kinds of therapists. It may seem like a lot, but really it makes about one really busy month once a year.

Spina Bifida and Hydrocephalus Awareness: Day 20
When talking about awareness there are many different colours that signify to people that you care about something. And I thought that today being the opening ceremonies for world pride. Talking about colours would be fitting.

 Spina Bifida and Hydrocephalus awareness is traditionally yellow, and in some places teal.

So when you see me and wonder why the yellow nail polish and yellow socks, or the yellow ribbons on my car or front door. Yellow is the awareness colour for spina bifida

Spina Bifida and Hydrocephalus Awareness: Day 21
Awareness is putting yourself out there. So that is what we did today. We participated in our 5th annual Spirit Wheel Walk Run for the Spina Bifida and Hydrocephalus Association. This event is organized every year through the month of June by different families in Ontario. That means that instead of one big event that not everyone can make it to, there are dozens of smaller events that are family friendly, personal and everyone who can make it attends.

Our walk this year we met a number of people who had questions and I had some pamphlets all ready. We also met another family who just happen to be at the park and their daughter also had spina bifida. And for our walk this year we had Nickolas, a friend from work and her husband who were all born with spina bifida.

We spread awareness in Oshawa yesterday, a couple of people at a time. And of course everyone who has followed these posts here on facebook!

Spina Bifida and Hydrocephalus Awareness: Day 22
Today is our anniversary (15 years) so I thought I would talk about relationships. The parental relationship… I am years away from thinking about Nick’s romantic relationships.

There is research out there that says that when you have a child with a disability that your relationship has a higher chance of ending in divorce. There is also research out there saying that when you have a child with a disability you have higher rates of depression. It’s a little bit scary to think that just having and loving a child with a disability has shown to have negative effects like this.

Having that knowledge is half the battle. Taking time for yourselves and recognizing that this time is important and enhancing the parent-child relationship as well. There are so many decisions that need to be made, and two parents to make the decisions right from D-Day. And that relationship and decision making (at least from my experience) helps when things get overwhelming.

Spina Bifida and Hydrocephalus Awareness: Day 23
Relationships in general are important. Social relationships and social groups.

When Nickolas was a baby I joined a mom and baby group through Durham Public Health, and it was one of the best things I did. Because Nick was still a little boy first.
It was a time to meet other moms and watch out children play together, talk about mommy things, make baby food, do stroller-fit, aqua-fit and baby salsa, and kinds of other things for new moms and babies to do together.

During that first year this social group was a life saver. After my maternity leave finished our group drifted apart with the idea that we would always connect again. Unfortunately we lost a very important member of our group last year. But the help that being just a mom of just a baby was invaluable.

One more week of awareness to go. I hope that it has brought more awareness and helpful information this June

Saturday, June 21, 2014

Our 5th Annual Spirit Wheel Walk Run

We had our 5th annual Spirit Wheel Walk Run. I think that it was successful. And we actually had 3 people who were born with spina bifida with us (and met a 4th person at the park, spontaneously as well). Charmaine and her husband Anthony were both born with spina bifida and their daughter (who does not have spina bifida) were able to join us this year.
As well as 2 conductors from March of Dimes (and their big dog) came out to join us as well!
Nick was very excited to see other people using a wheelchair and crutches "just like me"
We had about 25 people who came out. One of the better turn outs from other years. 

We have a very laid back wheel/walk/run. We take a group picture, start walking, take some more pictures

Here are the 2 conductors from the conductive Education through March of Dimes. They hadn't met Nick, but heard about the walk and wanted to come out and support us

Even my brother-in-law with his hurt back walked for abut 5 minutes

And Katheryn was attached to Hannah

And Nick liked wheeling with Anthony.

 We got our family photo at the half-way, turnaround time.

Then it was on our way back for the picnic and splashpad.

Fun, family friendly and no big fuss.

We had a couple of picnic tables set up (but our stay-back helpers, my mother-in-law and uncle-in-law), we put out our banner and get down to chatting!

  The kids had fun in the sun and the splash pad

This was about as close as Nick wanted to go in the water

But Katheryn was all about getting wet!

  This was the park where another little girl born with spina bifida was there enjoying the park with her family. The family came over to Charmaine and was talking to her and we all found out we were all part of the spina bifida family.
I had some cards and a pamphlet I gave her mother. I love connecting to people like that
We did have some people stop and ask us questions on the walk. I had some pamphlets all ready, and I really think that we educated some people today!

For the fundraising aspect of it, I think we met my goal of $1000. I don't have a grand total yet, I'll tally it all up in a couple of weeks. But you can donate up until the end of July 

Another great year of showing off my kid and saying that This is what spina bifida looks like!