The surgery is now going to be on the 17th, with pre-op stuff taking place on the 16th. That’s great news. Less waiting before it happens.
clarification
The surgery was moved up, not because of any problem with the case, but because there was a conflict with the neurosurgeon. So it’s nothing but good news!
Thanks to those who asked!
The Short Version.
My friend Mike called me the other day, and said “I went to your blog, but dude, there’s a lot of stuff on there. Give me the short version of what’s going on.”
From here on out, you should be able to visit this specific post (bookmark it) and when something happens, we will update this post. There is also a link to it on the top right.
UPDATED September 19th.
Our son has two medical issues going on. The first is craniosynostosis, or the premature closure of the bones in the skull. There’s a cool video of his little skull here. We just had surgery to fix that, on September 17th. The surgery and recovery stories are posted here, in chronological order.
The other issue is dysgenesis of the corpus callosum. That is medical-speak for the fact that Benjamin doesn’t have all of his corpus callosum, which is a part of the brain that connects the two halves, and helps with complex or abstract reasoning. Read about that diagnosis here and here. This diagnosis is not fixable, and just means that we will have to closely monitor his development and help treat symptoms if and when they occur.
The latest, as far as we are aware.
Not much LB news (short for Little Ben… our friends Jonny and Sarah have begun calling him LB, and I have found myself defaulting to it) to speak of this week, since we are in the medical equivalent of circling high above the airport waiting for clearance to land, with his sugery coming up next week.
But yesterday we got a visit from Child Developmental Services, represented by a pleasant lady named Heidi. She was referred to us by our pediatrician, and her role is to come and introduce us to the early intervention program, where we can start early noting any developmental issues that may result from Benjamin’s Corpus Callosum disorder (if none of this makes sense, click on “The Short Version” at the top right to be brought up to speed).
It was a good appointment, and we were encouraged that she seemed to think that he is progressing at a normal rate developmentally at this point. We knew that, but it is nice when an expert tells you what you already knew. After all, they see tons of kids, and I just see this one, and I am seriously biased.
We are gearing up emotionally for the surgery on Wednesday. Pray for us, as Tuesday will be a really long day of learning and pre-op stuff, and then Wednesday will be a rough day and the beginning of rough days for a few thereafter. Pray that Jacqueline and I would hold tightly to each other through this (metaphorically and/or privately… it would be odd to walk around in a constant state of hug… and I am not a fan of Public Displays of Affection in general). Seriously, though, these are the types of things that take marriages down with them, and I am keenly aware that our marriage is not above it. Pray with us that we would hold tight to Christ and to each other.
This post is unfiltered. (more about our filtration system)
Sleep-Redecorating.
Some people sleep-walk. Pretty amateur, if you ask me. I take it to the next level and icorporate useful activities with my unconscious meanderings. I am the Michael Phelps of sleep-activity.
Last night, for example, Jacqueline got up to take care of Benjamin at some point, and when she came back, I was taking the sheets off the bed. Walking? that’s easy. Try doing laundry in your sleep. When she asked me what I was doing, I said “just trying to help…” and got mad when she made me stop “helping.” Eventually I went back to bed.
I have a long career in sleep-activity. In college, my roommate Matt woke up one morning to find me comfortably asleep on the couch underneath my lofted bed. I had taken the sheets off of my bed (which was tough to do awake) and neatly tucked them into the cushions of the couch.
But the glory days of my sleep-activity were back in the mid-80s. I would “wake up” and walk across the room to the “toilet,” which happened to be whatever random peice of furniture I got to in my bedroom, and pee in/on it. This included peeing into a drawer full of my neatly folded clothes, and (on a seperate occasion) peeing onto the antique cedar chest in my room. We’ve still got that chest, and it still has a spot on it where you can clearly see the pee-stains. Good times.
I’m working on more extreme forms of sleep-stuff (incorporating flaming darts, penguins, and hot pockets into my sleep routine as we speak), and petitioning the X-Games to make it an official sport. Then, the olympics.