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.

Spina Bifida Awareness video - 2014

With the month of June, it gives me an excuse to update all of my awareness videos.
I updated the pictures of Nickolas now, and some of the 'educational' slides as well.

And yes the video still makes me cry

Spina Bifida Awareness and Spirit

It is June!
And with June come sunny weather, the end of school, thoughts of summer vacations... and Spina Bifida Awareness Month and our annual Spirit Wheel Walk Run

Come Join Us - 2014

I updated our pamphlet, not just with pictures of Nick but some of the content as well. And pictures that mimic the actual colours of the SB&H logos.

Pamphlet - SWRR - 2014

A new part of fundraising this years is the creation of a Canada Helps donation webpage. So it is very easy to donate to Nick's walk.
https://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=37416


There is always information in my Spirit Wheel Walk Run at the top of the blog. And you can look at group pictures over the last 4 years.


I have a goal of $1000 this year, but it isn't just about the funds, it is taking the month to create awareness and show off what spina bifida looks like!

Surgery Date

After two weeks (felt like forever) of waiting for a date I got the call. For the MACE surgery

We had wanted August. Nick has 3 weeks of camp in July that I didn't want to have to cancel, and then the cottage for our family reunion for the long weekend, and I have vacation time in August...
So August was when we were hoping.

I called the Nurse Practitioner as soon as I got home May 2nd (after hours of course), then called again on the Monday and talked with her. She said they were booking into the summer but someone else would have to call me back with the date.
I had a little bit of a freak out.

Fall means missing school, and at least another 4-6 months. I'm not sure I can do this for another 4-6 months. Accidents and inconsistency, not coming any closer to underwear. 60-90 minutes every night or evening and then still having issues the next day. And the waiting, knowing we were just waiting to start something that make take a while to work.

We made the decision and now I just wanted to do it!
Get it done and on the road to the tough recovery.

Last week I got the call.

July 28th

My first thought was that we couldn't do it. It was too early (yeah that thought actually went through my head... after worrying about it being in November).
But no. July 28th is good. It is great!

Number one is that it is a special day by itself. Nick's grandpa's birthday, and keeps them connected.
But it is also immediately after camp is done, with a good 6 weeks of recovery before school. It will cut Nick's summer in half, but the first half is full of fun.

Now it is just getting the time off of work to be with him.
As soon as I found it I contacted everyone to see what my options are. Taking a leave of absence for 10 days is my plan. Let's me be with Nick in the hospital, and extra time in case of complications (I haven't heard of anyone who had the MACE without some kind of complication, so I'm expecting something). And time at home for recovery as well.

So July 28th is the day.
68 days away.

We've talked to Nick about it.
He has been asking when we will put the catheter into his belly button.
We've talked about an operation and going to sleep.
Not sure what else I can do to prepare Nickolas. But we have 68 days to figure it out.