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 

https://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=37416

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

Spina Bifida and Hydrocephalus Awareness: Week 2

To continue with the week I was looking for more interesting topics, and of course those with pictures as well.
I didn't start off with a massive organized plan where everything would flow together and it would provide you with a progressive picture of what spina bifida looks like. I knew I wanted to have something new every day, and a lot of the time I just came up with the topic that day or the day before.

Day 10 came from a friend at work who asked if I had seen this guy on Nitro (that does bike stunts and stuff). That of course gave me a great idea for a topic that day.

Spina Bifida and Hydrocephalus Awareness: Day 10
 Extreme sports. Those of us in the spina bifida community all know Aaron Fotheringham and what he does on his wheelchair.

 

 There are even some very brave mothers who have one of these wheelchairs (and helmets) for their kids. I'm not this brave yet, but it's nice to know that if Nick wants to start sending his chair down ramps to do double backflips, he can. Or at least keep trying, keep falling and keep getting back up.

 There are so many videos out there. These are some of my favorites (check out at least 1)

https://www.youtube.com/watch?v=jCgUOFHXBOw
https://www.youtube.com/watch?v=AUUVfPy0UgI
https://www.youtube.com/watch?v=z43PXkvVC5c

 And there are a ton of pictures too

http://www.aaronfotheringham.com has a ton of stuff on it too!

 After posting this, I was showing Nick videos of some of the stunts. He was really impressed, but I kept showing him videos where Aaron wiped out, and he got bored before we got to the one that he made the jump.

Spina Bifida and Hydrocephalus Awareness: Day 11

 Every child born with spina bifida and hydrocephalus have scars. There is no choice, no alternative, no non-invasive, non-scarring treatment.

 

A scar is a sign of strength. It is a permanent mark for everyone to see that shows that you and your body fought, overcame and healed. Even if the scar was created when you were less than 24 hours old. And involved major surgery.

 Nick has 3 scars, the large scar on his back, the semi-circle scar on his temple and the small scar on his belly. The first is from his myelomeningocele repair, where the created a skin flap to help to cover the 3cm, oval lesion (hole) that was on his back. Plastic surgeon and the Neurosurgeon were both involved in that surgery, and it is a beautiful scar. It is large than other ones I’ve seen and looks like a ‘N’ that starts at his hip. The first line of the ‘N’ got infected and looks different from the other parts.
 

Nick had a big dressing on his back, with home care involvement for 6 weeks. But other than the initial infection it healed beautifully. The other 2 scars are from his shunt. The one above his temple is where the shunt is placed, and the one on his belly is where the shunt tubing ends. The head one is covered by his hair usually (though it did get A LOT of looks when he was a baby), and the belly one is coarse. I mean that you can see the suture needles holes, and it is right front-and-centre belly, it is about 3cm in length.
 With one more surgery on the horizon, I’m not sure if we will be adding another scar to Nickolas. But all of his scars mean strength. They are beautiful; they are part of who he is.

 

 

Spina Bifida and Hydrocephalus Awareness: Day 12
Spina bifida involves a number of different therapies and a team of therapists. We have a physiotherapist (PT), occupational therapist (OT) and speech therapist (ST). Nickolas has needed help from all of these so far, and has done multiple therapy block (8-12 weeks of one hour every week, followed by 8-12 weeks without therapy).

We have also sought out other therapies as well, free opportunities, private physiotherapy and conductive education (which I will discuss Day 13). Nickolas spent years HATING therapy. He would cry and scream and not want to work and do anything, and I would spend a lot of those sessions making him continue to work even with his crying and screaming. He did work, he just didn’t like it.

About 2 years something changed and while he might not LOVE therapy, he doesn’t hate it either.

Physiotherapy involves working with the large muscles to move. Walking, standing, kicking, going up and down stairs, moving are all goes that we have. Doing the big things. And a lot of core strength, because with the core will come everything else.

 

Occupational therapy involves working with the finer motor skills with activities of daily living. This includes feeding (which we haven’t had any problems with) but using your hands and fingers. You might  not think that spina bifida, that effects lower legs would also effect that hands, but it does. It has to do with the tone of the muscles. So it took therapy to strengthen Nick’s hands and fingers. We didn’t use OT as much when Nick was little, but now that he is in school, they are the go-to people to help him within the school. And when we look at making the house more accessible, they are also on our call-list.

 

The therapists together help with the walker, what will work for him. Allow Nick to move around, OT helps with the wheelchair and other seating issues if we need it.

 

But therapy is more than just a bunch of therapists and exercises to do. It is looking at everything we do during the day and try to figure out how to make it into therapy. Some days it feels like all you do it therapy, and other days it feels like you don’t do enough. But Nick keeps working and keeps moving towards maximizing his abilities every day

Spina Bifida and Hydrocephalus Awareness: Day 13

Having a child with special needs means always looking for create ways to maximize your child’s potential, to push that extra bit… because you know that they CAN. And acting as your child’s advocate.
Having a child who hates therapy made it very hard to help Nick to realize that we were asking him to try to do something that he can do. I heard about something called Conductive Education and wanted to try it.

 

 March of Dimes in Toronto offers Conductive Education. I love it! And Nick really enjoys it, and get SO MUCH out of it. What they do is use a holistic perspective to look at how to help Nickolas identify what he can do and how he can do it, all with an educational twist. And lots of songs.

 

 

There is no “he can’t do that” it is about “lets see how he can make this happen”, or “lets see how his body identified this feeling”. And always challenging. Every day involved working through a story or a theme, and then taking that theme and applying it to work.

 

http://www.marchofdimes.ca/EN/programs/CE/Pages/ConductiveEducation.aspx

Spina Bifida and Hydrocephalus Awareness: Day 14

Nerve damage, I have mentioned that the myelomeningocele lesion causes nerve damage. But what does that actually mean? What do nerves really do?
  

Well, they do all kinds of things. They tell your brain what you are feeling, and lets your brain tell your muscles what to do. With spina bifida, because the damage occurred during development some nerves work really well, some don’t work that well, and some don’t work at all. It isn’t like a spinal cord injury where you can point to a spot and say… from that point down. The vertebrae in the spine are associated with specific nerves that go to specific parts of the body. The vertebrae, from the head down are: Cervical C1-8, Thoracic T1-12, Lumbar L1-5, Sacral S1-5.

 

You can have a stronger and a weaker side, you can have some feeling in a part you don’t have muscle control over. Dermatome is the area of sensation, and the nerves supply from the front of the leg, to the bottom of the foot and up the back of the leg. Nickolas has sensation around S1; so he can feel down both front of his legs, decreased at the bottom of his foot and up his calf, and nothing the back of his thigh.

Myotome is the muscles that are controlled by the nerves. Different groups of muscles get information from multiple nerves. But when therapists are looking at function, it isn’t just if a specific muscle can move, but can it move against gravity or against a force. There is still some debate regarding what muscles Nick is able to use. Most likely somewhere in the L4 range.

 

You learn very early on what you letter and number combination is, and it takes some time to realize that it doesn’t really matter.

Spina Bifida and Hydrocephalus Awareness: Day 15

When you get the spina bifida diagnosis and meet with all of the doctors, there are lots of questions about walking. And they give you this chart, with the level of spina bifida and what your child will be estimated to use to be able to walk, assisted or unassisted.

I remember studying this chart and looking at where the dreaded wheelchair comes in. The wheelchair is no longer dreaded, and Nick is doing great with his walker and canes for the day. This chart is used very commonly when the baby is young or not born yet, it is a prognosis. It is not written in stone, and by the time your child reaches the ages to need different walking aids you spend more time looking at him (or her) that you do studying a chart. But for new parents who are thinking of what the future holds, this chart gives a tentative prognosis.

 

 

Spina Bifida and Hydrocephalus Awareness: Day 16

Folic Acid. I’m going to talk about folic acid because it is important, it is a vitamin that can help to decrease the chance of a neural tube defect (including spina bifida).

It is recommended for every woman to be taking at least 0.4-1 mg folic acid supplement for at least 2-3 months before getting pregnant, and to continue through the pregnancy. Any woman who is high risk (including a family member who was born with spina bifida) should take between 4-5 mg folic acid at least 3 months prior to pregnancy and through the pregnancy.

 

Folic Acid is a B vitamin (B9). Found in leafy green vegetables, fruits, enriched breads and cereals as well as dried beans, peas and nuts. Folic acid fortified flour and grains has been introduced in Canada. Prenatal supplementation and diet fortification have contributed to the current incidence of spina bifida 1 in 1300.

 

Folic acid is a tricky topic for us SB moms, many of us (myself included) were taking the recommended dose (of someone not high risk) prior to getting pregnant. And yet our children were still born with spina bifida. Folic acid, helps to reduce the risk … it doesn’t 100% prevent. So playing a blame game, like asking “why didn’t you take folic acid” is not helpful. If we were taking folic acid then it’s like we should have known to take the mega dose, and if you weren’t taking folic acid then you feel that it is your fault. It isn’t. Period.

Folic acid is great in that it has been identified as decreasing the incidence of spina bifida, but not completely preventing it. Because spina bifida and folic acid are linked the spina bifida associations run ads to promote folic acid awareness. It is kind of a kick in the face for us SB moms, but is important to educate the general public

http://www.riddingfamily.blogspot.ca/search/label/folic%20acid%20awareness

 

So that was week 2!

Spina Bifida and Hydrocephalus Awareness: Week 1

My goal this year for spina bifida awareness month was to continue to raise awareness through social media. So I started June 1st to make some kind of educational post with pictures to help to explain to my facebook family and friends what spina bifida and hydrocephalus was.
So instead of doing it every day, Here is a review of the week

We started off easy.

Spina Bifida and Hydrocephalus Awareness Month: Day 1

June is spina bifida awareness month.
Spina bifida was just 2 scary words 5 years ago and now it is 2 words that aren't nearly as scary as they were.
Redefining Spina Bifida every day

 

Spina Bifida and Hydrocephalus Awareness Month: Day 2
There are different types of spina bifida. The type that Nick has is called a myelomeningocele. Which means that nerves and spina cord came through the opening in his back.
New word of the day... myelomeningocele...

Now say that 10x fast. Or just meet Milo, my ninja seal

 

 
Spina Bifida and Hydrocephalus Awareness Month: Day 3
Hydrocephalus occurs in about 85% of children born with spina bifida. Nickolas developed hydrocephalus at 2 1/2 weeks old and needed to have a shunt inserted into his brain. A shunt takes the extra fluid from his brain and puts it into his belly.

 

 The scar on his head looked really big when he was born, but now you don't even notice it

 Hydrocephalus can occur separate from spina bifida as well.

Spina Bifida and Hydrocephalus Awareness Month: Day 4

Spina bifida effects the nerves of the spine. When the baby is developing cells 'skip' a section of the neurotube and a hole is formed. (It is like skipping a tooth on your zipper). As the nerves and spinal column develop, there is part of the spinal column that is missing and the nerves push out into the hole (now called a lesion) and are damaged.

 

 But nerves tell your body what to do, how to move and what you are feeling. Nerves that are at or below the lesion are damaged. So extra help, therapy and/or equipment is needed to compensate and teach Nick what his body is able to do

 

 

 

Spina Bifida and Hydrocephalus Awareness: Day 5
This is what spina bifida really looks like Video 2014

Spina Bifida and Hydrocephalus Awareness: Day 6

Diagnosis of spina bifida can usually happen inutero, before the baby is born. There is a blood test, called the IPS, or the 20 week ultrasound (or later) may detect a lesion, or at the birth of the baby.

 

Nick’s spina bifida was discovered at our 20 week ultrasound, where they couldn’t see part of the brain (this is a typical ultrasound sign). A later ultrasound confirmed that he had spina bifida (and yes that part of the brain was there… called a ‘banana shaped’ cerebellum). Like almost 99% of other parents who received the same diagnosis as we did, our doctors talked to us about terminating the pregnancy.

Spina Bifida and Hydrocephalus Awareness: Day 7

Getting a diagnosis that your child will be born with spina bifida is scary. And it remains one of the worst days of my life. We received a lot of medical information about spina bifida from different doctors. That Nickolas will need help walking, probably need a wheelchair, he will need to always be in diapers and may have lower intelligence, he will need to spend time in the hospital, have regular therapy and have at least one major surgery, and life-long care and commitment. Many of these things are true.

 But what does spina bifida actually look like. What kind of child will we have? After diagnosis I spent hours and hours surfing the internet and looking at blogs and online support networks. And I saw  happy, smiling, normal children. We visited the children’s hospital and talked with doctors who work with these children, and heard about happy, smiling, normal children.

 

Nickolas has spina bifida, he has hydrocephalus and chiari malformation and neurogenic bladder and bowels. He uses canes, a walker, wheelchair and AFOs to move. He needs help with his bladder and bowels. Many of the medical things the doctors told us would happen, has happened. But this is normal life, we spend many more days and hours living our lives than we do dealing with spina bifida and medical stuff

Spina Bifida and Hydrocephalus Awareness: Day 8

Nickolas uses braces called Ankle Foot Orthodics (AFOs) to help him to move. These braces are hard pieces of plastic that are very expensive for being just hard pieces of plastic, but very inexpensive for the support and independence they give to Nickolas (and they are custom made by an orthotist).

 

Nick can stand on his own (holding onto something) and even walk in his walker without his braces on. But his ankles are weak and turn his entire foot in. What the AFO does it hold his ankle and foot in place so his muscles don’t have to work so hard to be straight. The support to the ankle goes all the way up to just below the knee.

 

 

Last year we have KAFOs (knee ankle food orthodics) on one leg, that also supported the knee and gave it a little bit of extra support. We took the knee part off at Christmas time, because if you give too much support the muscles can get weak.

 

 

So it is a balance between supporting what needs to be supported, and making the rest work harder. To make the AFOs, they take casts of the feet and create the hard plastic from that. The really cool thing about orthodics is that you can have any design on them that you want! Nick’s current one is Pirate Mickey Mouse (it is his 3rd pair).

Nick has to wear his AFO's through the whole day. He wears his shoes and AFO's from the time he gets up and dressed, until the time he is in his PJ's and ready for bed.

 

Spina Bifida and Hydrocephalus Awareness: Day 9

It is great that everyone is reading these posts and liking them. I love that I get the opportunity to increase awareness and provide some knowledge about spina bifida and hydrocephalus.

But what if you didn’t know me?

What if you or your family or friend called you up and said they had got some bad news, their doctor says that their baby will have spina bifida. That they don’t know what to do, that they feel so lost and just want someone who can help!

There is somewhere to go and someone who has been right where they are. The Spina Bifida and Hydrocephalus Association of Ontario is there to provide information and support to families. They try to connect new families, who are so lost and unsure with older families who know what living with spina bifida is like (either themselves or a loved one). They have resources to share with families to help them understand what living with spina bifida and hydrocephalus means. Part of creating awareness is also helping the association to help others.

The month of June is a time that families and friends come together to Wheel Walk Run to raise awareness and fundraise for the Spina Bifida and Hydrocephalus Association of Ontario. This event is organized by individual families throughout the month, with all proceeds going to the Association.

If you are interested in helping to support the Spina Bifida and Hydrocephalus Association to continue to support families like mine. Please take a moment to donate

https://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=37416

 

 

This was week 1, hope you found it interesting and maybe learned something.

Physiotherapy

Physiotherapy has been a challenge for us.

Maybe it is because Nick is getting physiotherapy through school and I'm not able to be there (but I  am welcome). So I don't see the day to day changes and actually see the progress he is doing.
I just feel that we aren't doing enough
I feel that we should be working more, but I am just so tired all the time I can't think about adding something else to our plate (which is not very full to begin with).
I've been looking at some more supplemental physiotherapy to go with the school program, but when I mentioned it to our PT at Bloorview she told me I should be looking at recreational activities instead.
It kind of seemed odd to me. Like she was saying, don't look at doing any more PT, it won't help, just keep him active. Like they are giving up on what abilities he can continue to gain.

I've been looking at recreation activities to sign Nick up for. In my head I want him to do something like soccer where he can practice kicking and walking in his walker. But I can't find it. Grandview doesn't have recreational activities for his age group (other than swimming).
I'm sure there must be something out there.
But I want it to be easy to find and not cost a million dollars, and fit into our schedules.

We have Nick signed up for a bunch of camps in the beginning of the summer (before his surgery) and I'm really excited to see what he will do with the conductive education camp.
And part of me is still waiting for that miracle.
That step on his own.

Physiotherapy has been the tool that we have been using for him to gain strength and ability and awareness of what his potential is. And it has been hard, and there has been a lot of fighting and crying. But we keep going so that for one hour a week I know he is working hard.
I know it isn't enough. And maybe if I hd pushed for more intensive physiotherapy earlier he would be able to take that step.
Maybe he would be strong enough
Maybe I failed him

As his mother aren't I supposed to provide him with all of the oppurtunities available to him
Work every single day, concentrated work.
Or has my laziness and spending time just sitting and watching tv cost him the opportunity to gain strength to walk?

Nickolas does not function at the level we expected. His lesion when we were pregnant was L5-S1, on actal delivery the lesion (hole) was at S1. Even his sensory (that I've been able to try out) is S1. But as he gets older and we learn his muscle stegth he isn't at S1, or L5 or even L4. L3.

At Bloorview this month the PT went through the information with me and what it meant. Being able to move muscles against gravity is what is functional, not just being able to move that muscle. And check marks down the side of the paper that labeled him at L3 function.

It still hurts. And I really try for it not to hurt any more. And maybe one day it won't. But I still remember the lists we looked at when I was pregnant. And looking at L5 and S1 and what that will mean for wheelchair and walker and community and home.

I've been looking at wheelchair ramps everywhere we go now. And thinking of Nick as an adult and how inaccessible to world could be, and how hard he will have to work to be able to ... just be able. And then looking at our own house, and realizing how inaccessible it will be once he is older as well.
You can't move a walker through the house functionally. Yes he can go up and down the hall and turn around but it's a lot of work. And we don't have ramps outside the house.

How can he live like that? Why does it have to be like this?

And I know that I am rambing, and I'm ending off with a different focus than what I started with. But physiotherapy is the tool that we have been using to give Nickolas the ability to gain function. But as he gets older and older I am worried he is reaching his functional potential and it hurts me.