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 16, 2014

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)

 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.


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

So that was week 2!

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