We are done, on the way home stopping to get pedialyte from the CVS, and listening to the little man cry a very drunken-sounding cry in the back seat. We’ll hopefully know more info by tomorrow! Thanks for praying!
The Results are in!
We just heard back from the geneticist with the results of the MRI. My son has a partial corpus callosum.
Don’t know much more than that, as of yet, and we will be meeting with both the geneticist and the pediatrician on Friday of this week to learn more about what all of this means.
As of right now, what they have told us is that it will more than likely not manifest any symptoms or developmental issues until later in life (high school age) and then it would be a difficulty with more abstract reasoning.
So far I don’t think I have really engaged with the diagnosis. It is good to know, I guess, but it really doesn’t change anything. It’s not like we are gonna have to open up his head and put an after-market corpus callosum in there. He just doesn’t have all of it. Nothing we can do about it.
Of course, now this diagnosis has set into motion a whole bevy of other testing to see if he has other syndromes and issues that are often coincidental with corpus callosum disorders. So, some blood tests are next, which they will take care of on Friday.
If any of you are interested in researching more about corpus callosum disorders, check out http://www.nodcc.org/
Thanks for the prayers. Pray with us that we would rejoice in God in the midst of this stuff. He hasn’t taken His hands off the wheel.
For the confused…
After talking to some friends on the phone and having to consistently explain the same things over and over, we figured we haven’t clearly articulated all of this craziness with our son. Here’s (hopefully) a post to put everything straight.
The main thing to clarify is that we have been dealing with multiple (and at times unrelated) diagnoses. The first is craniosynostosis (premature closure of the bones in the skull). That one is the one we are going to have to have surgically fixed. The second, unrelated and untreatable, is a diagnosis of Dysgenesis of the Corpus Callosum (DCC), which means that there is a malformation of the corpus callosum, or the part of the brain that connects the left and the right side. This diagnosis doesn’t change, and is unrelated to, the first diagnosis; so we will still be going to surgery (we find out more about that on Tuesday of next week) in Winston-Salem.
Jacqueline and I have been studying up on DCC, and what that means, so that we have the right questions to ask the doctors. It is a fascinating thing to look into studies on the brain and how it works, because it becomes plainly obvious that even the brightest and most educated neurologists are barely wading into the kiddie-pool when it comes to having probed the depths of how the brain works. With the advent of neural imaging such as the MRI, we (and by “we” I mean doctors representing humanity, not so much a group that includes myself… I’m a campus minister) are just starting to be able to figure out the basics.
As far as pop culture goes, a representative of a person with a corpus callosum disorder is Kim Peek, the inspiration for the character Ray Babbitt in “Rain Man.” Kim doesn’t have a corpus callosum at all, and has some other brain anomalies that Benjamin doesn’t have, but I thought he was an interesting example.
Carolina Blue blood
It’s a metaphor, don’t panic. His blood is normal colored, but hard to get to, it turns out. The pictures below were taken during the first attempt to draw blood. We didn’t get enough, so now we are waiting while they find a nurse who can draw blood from his ankles. I think it’s because the lady we just had was wearing an “I Love Dook” pin (she spelled it differently). He didn’t trust her with his blood.
This blood will be used to find out if he has any chromosomal abnormalities, and to do some DNA testing (for when we go on the Maury show). In reality, they will just be to find any other potential problems that could show up in a DNA test. Now he’s got some little ankle warmers on, getting ready for round 2.
Better luck next time.
We ended up leaving without getting all the blood they needed, because it would have been too emotionally taxing on us as parents to have had a round three. Jacqueline and I decided that we will wait until he is a little older with easier-to-find veins before we try that again.