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 9, 2014

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