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...
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.
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
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.
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
