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.
Democratic National Convention (and other ways to increase the traffic to your blog)
There has been much hullabaloo over Donald Miller closing out a night of the Democratic National Convention in prayer recently. Conservatives are throwing stones, saying that the DNC is just catering to the evangelical vote, and Liberals are praising Miller for bringing balance to the force, or something.
I’d like to imagine how Jesus would have prayed, were he asked to, at an event like that. Here we have a massive room full of people passionate about their cause, arrogant about their ability to win an election, and gunning for the opponent. (Also a pretty accurate description of the Republicans, by the way) Without fail, Jesus knocked arrogant zealots off of their little thrones each time he encountered them in scripture. Think of the “rich young ruler” in the gospels. He showed up boasting about how good he was, and Jesus made him very sad. Think of the Pharisees. Jesus regularly ridiculed, rebuked, and otherwise yelled at them.
So I can’t help but imagine Jesus’ prayer at the Democratic National Convention. He’d have probably had his microphone turned off. People using his name to get votes? People who do not care at all about repenting of sin and the work Jesus did in his life, death, burial, and resurrection, but would invite him over so that others would vote for them? I shudder to think the blistering monologue that would result.
Let me reiterate that I think this goes for both sides of the aisle. Republicans are just as guilty. I can’t think of the last time I’ve heard humility from anybody in the discussion, including myself. When we start talking politics, we very quickly become players in a chess game. I have to find the weakness in the other team and expose it. I can’t come across as weak or like I don’t have all the answers. We must demonize the other team and glorify our team.
Imagine if a politician were to say “hey, we are both after the same thing. We are after justice and peace and harmony and restraining the forces of evil in the world. Let’s figure out a way we can best do that, and stop taking cheap shots at the other guy. And let’s not forget that government is not there to solve our problems. It’s there to protect us from ourselves and others who would try to take away our freedoms.
Don Miller, I applaud you for having the guts to use the name of Jesus in a prayer on national television, and before a largely secular and humanistic audience. That was a bold witness for Jesus. But I can’t help but think Jesus would have ruffled more feathers.
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.