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