Monday, August 04, 2008

Update on Riley

We had an appointment today at Children's Hospital with Dr. Richard Ellenbogen, who, among other things, is an expert with regards to what Riley has, Chiari Malformation. This appointment was to basically get more details about what's going with Rye and to confirm whether or not we need to have brain surgery for him.

Dr. E said Riley has a size 10 brain in a size 9 skull. He said the extent of Riley's CM (not Arnold Chiari Malformation, as we thought before) was pretty severe. He said that we could opt to not operate, but he predicted Riley would be in a wheelchair at some time in his life.

Think of where the brain meets the spinal cord (not the spine itself) as a cork in a bottle. That's kind of how Riley's brain is. It is down 35mm and, as a result, is blocking the flow of spinal fluid. There is some discomfort associated with it as well, especially if he's straining himself (think heavy lifting, etc). The blockage also creates syrinxes (cysts) in his upper/mid back, which, if left untreated, can grow in size and cause big problems down the road.

So what does all this mean? This means Riley needs brain surgery.

At this point, Marci and I are going to do the surgery and now, it's just a question of when. Waiting doesn't do anyone any good, it just allows Marci and I to put off the inevitable. We're thinking that if we have the surgery in the near future (within 2-4 months), that gives him almost an entire year to heal up before he heads off to kindergarten. Dr. E said that Rye should get most of his functionalities back (swallowing, talking, fine motor, etc). The only restrictions he'd have would be limited to things like football, where there are impacts involved.

In talking to the doctor, he was very confident that he could help us. He did say several times that Riley's condition is quite severe. He also outlined the inherent risks with brain surgery and though no one likes to hear about death or infection and the like, the chances of those happening are pretty slim.

I feel pretty good right now, considering the circumstances. Marci and I are thinking about the eventual outcome, thinking about when I can share a bottle of root beer with Riley, thinking about other people being to understand him when he talks, thinking about him leading a normal life.

After all, isn't that all anyone wants?