What is Spina Bifida

Before Carson was diagnosed with Spina Bifida I had no idea what it was. I had heard of it but did not understand it at all. Now I know, Now I have way tooo much knowledge. LOL. So quickly and as best as possible I'd like to explain to those who may not know.


Someone born with spina bifida has an opening in the spine. A healthy spine is closed to protect the spinal cord, a bundle of nerves that sends messages back and forth between your brain and the rest of your body.
During pregnancy, the spine and spinal cord are developing. But sometimes part of the spinal cord and spine don't grow the way they should, leaving an opening where the spinal cord may protrude outside the body. When this happens, a baby is born with spina bifida, a term that means "split or open spine."
Because of the opening in the spine, the nerves of the spinal cord may be damaged. There are different forms of spina bifida

occulta , the opening in the person's back is covered by muscle and skin and the spinal cord is usually normal. There may be some problems with the spine, or there may be no problems at all.

Another type of spina bifida is called meningocele. This involves the meninges, the membranes that cover the brain and spinal cord. Meningocele is the name used when just the meninges — no nerves — push through the opening in the vertebrae. The meninges form a fluid-filled sac that is usually covered with skin. The spinal cord is normal and a person with a meningocele usually has no problems. A person with meningocele will need surgery to prevent any nerve damage later.

The last one I will discuss and the type which Carson has is myelomeningocele, from words meaning "spine" and "swelling." In this type, the baby is born with a sac protruding from the opening in the spine. This sac contains nerves and part of the spinal cord. About 1 in 1,000 babies born in the United States has this type of spina bifida.
 
Because the spinal cord hasn't developed normally and some nerves may have been damaged, a person with myelomeningocele will have some paralysis, as well as a loss of feeling in their legs. The amount of paralysis will vary, depending on where the opening is on the back. The lower down the back the opening is, the fewer nerves are affected and the less paralysis there is. This is why some kids with spina bifida can walk and some can't. Often in the spina bifida realm we will discuss where the level of spina bifida is. This means that we are referencing the point on the spine where the opening occurs. Carson's level is L2. This is Lumbar number 2. Carson's legs are affected in their entirety and he does not have movement or feeling throughout his legs (mostly, sometimes we feel that the nerves do fire but very minimally).

Just like fingerprints though each person affected by spina bifida is differently affected. Two individuals who have the same level may not have the same function or the same amount of damage. It all comes down to nerves and they seem to have their own ways in the matter. :)

That is the very basics of Spina Bifida. In tomorrows  post I will discuss a few more of the affects and the conditions that are common in spina bifida.

But before I let you go heres another cutie born with spina bifida.....

This is Carson's buddy Annabelle- we call her Belle. :) Belle, as you can see is adorable. I have never seen her without a smile on her face. She just recently turned 2 and is such a sweet-  hearted little lady. This family is one that I have had the pleasure of personally meeting, and am always encouraged by their determination and strength. Belle has faced some very serious challenges and is a little hero in my eyes. If you would like to know more about Belle you can follow her blog.
http://babygirlsummers.blogspot.com/

Some buddies

Here are a few more of our wonderful Spina Bifida buddies. I asked each mommy to send me a picture of their child and then describe their child in three words.

                                                                Loving, Handsome, Adventerous
                                                                            Christian
- I'm adding absolutely awesome. Christian is five years old and has far exceeded expectations. His sweet spirit and determination give those of us with younger children so much to look forward to, and so much hope.

                                                                       Jet - The great!

                                                                    Funny, Flirty, Fearless

Jet is a happy, healthy little boy who just turned 2 in May. He's walking unassisted, has a VP shunt named Rocco, enjoys watching  Curious George, and has a crush on Cinderella. He's on a strict diet of grilled cheese and chocolate milk and just got his first pair of  SMO's so that mommy will quit woryring about him running around on  weak ankles. ;) He's our miracle boy, our sunshine through the clouds,  and the cutest little thing in a tie this side of the Mississippi. Read more about his story, our family, and our journey with SB on our
blog - www.babyboypenny.blogspot.com. :)

 

When Carson was first diagnosed with Spina Bifida I grieved as if I had lost him. I was so confused and so unaware of what Spina Bifida was. Hearing the words "Your child has a major birth defect" are hard. As I learned about it through Google I only became more frightened. By God's goodness I found a group of moms who had children with spina bifida. These ladies had blogs. Blogs with pictures and stories about their own children living with spina bifida. Like a sponge, I soaked up blog after blog. I spent hours reading (I didn't have the business of having  kids in the house then...lol ) and then more hours telling Bob all that I had found. What gave me the most hope and the most strength was their sweet and precious faces. They all looked so normal, which honestly shocked me. I expected this major birth defect to look different. But rather, little boys played baseball, ate ice cream, played with trains. Little girls wore princess outfits, and had their nails painted. It comforted my heart in a way that I can't describe in words. I spent seven weeks waiting for Carson to arrive and in those weeks I studied, and learned as much as I could about what we would be facing ; and I met friends who would help heal my heart. 

One of our first photos

The first time we met

 

Vacation Part 2, Meet a cutie

In my last post I only made it up to day 3 in our vacation ---- there is soooo much more!!!
On day 4 we went to the grand land its self--- Magic Kingdom. By this time Carson just absolutely was so in love with everything Mickey Mouse. It was sooo cute and so great to see his excitement. Every Mickey he saw came with squeals and glee. :) until we saw the actual Mickey or any life-size characters and that was just not cool.

Waiting to ride the boat over. 

My cutie nephew

Me and Charity :)

This was probably mommy's favorite part. 

Everything is bigger at Disney

including smiles

Donald Duck tried so hard to make Carson smile. 

Even blew us kisses. It was really neat there were about 100 people in our area and D.D. Keyed in on us.
I was wearing my Redefining Spina Bifida shirt. He pointed at it and gave me a thumbs up. :) 

Still watching the parade with alot of questions. Why is Goofy holding me? 

Just too cute!!!

We had a blast!!! The best part was of course being together and spending some family time.  We are so
blessed and so thankful for our boys.

My brother Cody is in the middle. :) 

Carson's favorite part of all of Disney might have been this balloon. He would not let it go and played with it all through our vacation. 

 On Saturday- Day 5    We stuck around in Orlando for a few more hours and hit the Hollywood Studios Park

Meeting my heroes. 

Pizza Planet

We watched a Mickey Mouse Clubhouse puppet show. 

Then we hit the road and headed to Tampa. And there is lots more to come.

Sidenote!!!!!!!! 

 October is National Spina Bifida awareness month. Although I am catching up on our vacation..... I intend to include in this months posts some pretty amazing things to talk a little more about Spina Bifida. I want you to see what it means for us and for the others that we know living with Spina Bifida. When Carson was first diagnosed I thought he would miss out on so many opprtunities. Often times Drs. give you a very negative outlook on the quality of life that these children will have. They are so wrong!!!!!! 

A life with Spina Bifida is joyous and full of fun. We just went to Disneyworld. 

So Here's my first little cutie..... eating ice cream! 

 Arwen- She is 1 year old.

Yum Yum Yum