We talked with Brayden’s neurologist today, over the phone. Dr. Change spoke to a few issues that she saw on the MRI. I will do my best to explain. I have taken sections from a website to help with understanding.
Brayden is dealing with:
1. ACC – Agenesis (absence) of the Corpus Callosum
This means he does not have the part of the brain that connects the two hemispheres. It serves as the communication between the parts of his brain. The corpus callosum appears to be completely absent.
With ACC, developmental delays are to be expected.
2. Not much white matter in any part of his brain
“The white matter is the tissue through which messages pass between different area of gray matter within the nervous system. Using a computer network as an analogy, the gray matter can be thought of as the actual computers themselves whilst the white matter represents the network cables connecting the computers together.” Brayden’s brain is showing defective myelination. “Myelin made by different cell types varies in chemical composition and configuration, but performs the same insulating function.” The myelin is white looking thus being called the white matter. Brayden does not have a lot of these myelin cells.
Brayden’s brain is not making connections (processing and sending the messages) that are needed. His brain is not laying the ground work for his brain cells to be sending the information around. Brayden’s development, and how much development will take place, is very much in question.
Explanation for what should be happening but Brayden’s brain is not showing much evidence of this:
In the first 10 years of life, your child's brain will have made billions and billions of connections. The connections which are no longer needed will wither away. When a child is a fetus in the womb, the toes and fingers are webbed, and then the webbing dies away as it is no longer needed. The brain develops in the same way: many connections are formed at random, but only the connections that are used will actually remain.
The first year of development is very rapid - any parent will tell you that! You see phenomenal changes in a child: in its behavior, its understanding, and in the way it interacts with the world in the first year of life. After that first year, the brain looks like the brain of a normal adult. By about three, the brain has a thousand trillion connections. From about the age of three to 10, the child undergoes very rapid intellectual, emotional and social development. Think about some of the children you know, and you can see it happening in them.
3. Occipital lobe did not develop properly
The occipital lobe is the part of the brain that is responsible for vision. Brayden’s lobe is completely smooth, it should be wavy, folded in and out (just think of what a brain looks like from your high school biology class).
This is part of the explanation as to why Brayden has not made much progress with focusing and tracking things visually. He makes brief eye contact and then goes on. The doctor expressed concern about him ever being able to fully see.
This is a quick and very elementary explanation, even though the email is quite lengthy, sorry. We are just being to understand the big words, let alone be able to properly explain them. We will be going to the neurologist next Wednesday to look at the MRI and discuss things further. Brayden may also have some blood work done at that time. Brayden is doing better with the seizure medication. Dr. Chang also continues to say that it is great for Brayden to be eating and growing so well. Dr. Chang will be reviewing the findings with other neurologists.
Please pray for us. My hands are shaking as I am typing all of this. We know that we will have lots of challenges in the future. We love Brayden so very much, we want to give him all of the best. Jeremy reminded me several times today, that God does not make mistakes and that He designed Brayden for a specific purpose. Something that is always easier to say when outside of the circumstances. Now that we are in the midst of it, we know that only the Lord has control and knows what the future brings. I just pray that we can take a deep breath and rest in Him.