Before the Birth
   Background
   The Diagnosis
   Doctor Switch #1
   The Tests
   The Roller Coaster Ride
   Doctor Switch #2
   The Final Switch and Hope At Last
 
Updates After Owen's Birth
      The Birth
      At the Hospital
      Home At Last
      Shunt Replacement
      Progress (5/3/2007)
      Progress (8/4/2007)
      Progress (10/28/2007)
 
 
      Progress (11/26/2007)
      Progress (12/6/2007)
      Progress (1/21/2008)
      Progress (2/20/2008)
      Progress (3/20/2008)
      Progress (4/14/2008)
      Progress (5/9/2008)
 
 
      Progress (6/2/2008)
      June 2008 Infection
      Progress (8/17/2008)
      Progress (9/12/2008)
      Progress (9/16/2008)
             
 
Progress - August 4, 2007
Things have been going well since our last update. You can see some of our projects on the Info - At Home page. I modified a bouncer for Owen to be able to get some freedom of motion and to start bearing weight on his legs. Last month we took Owen to see a neurologist for the first time. Several parents had suggested that we should take Owen in earlier rather than later so that the neurologist would get a chance to know him right from the start. The neurologist gave us all thumbs up and said that since there had not yet been any evidence of seizures, that we were not likely to see them as they generally start very early. He is going to see Owen every six months just to keep up to date on how he is doing.

In early May Owen got his first MRI since he was born. CT scans are quick things that only take a minute or two and they are only actually taking pictures for a few seconds. MRI's are a bit more involved. It takes about a half an hour to take the pictures, during which he has to remain perfectly still. Eight month old babies do not sit perfectly still for a half an hour (or even half a minute!) so they have to be sedated. They drink a liquid and then get very sleepy. They aren't actually knocked out with general anesthesia, they are just very, very calm. Also, Owen has a programmable shunt, so the magnet in the MRI resets his shunt to the lowest setting. They have it all set up so that someone is there to set the pressure back to where it belongs as soon as the MRI is done. As long as the child is laying down during the MRI (and they are) you don't have to worry about overdrainage if they get there and change the setting immediately following the MRI.

The MRI was lots of good news. From the picture it was clear that the cerebellum was completely intact. You can't see soft tissue structures on a CT scan, you can only see the boundaries between where there is fluid and where there isn't fluid, or where there is bone. On the MRI we could see the actual structures of the brain. Lack of damage to the cerebellum is good news because it means that he shouldn't have problems with balance or other motor control. There is one part of Owen's brain that did not expand after the shunting, which the neurosurgeon said is the area that controls vision on the right side of the world. He also said that there was no way of knowing if it would actually cause a problem for Owen though, because most visual neural pathways are built after birth (and therefore after shunting) and quite often the brain will simply re-route those functions elsewhere. He is too young to be able to do any testing on him to be able to tell if there are areas where he can't see. Everything else looked good, so all in all, the news was very positive!

We also took Owen to see a pediatric eye doctor. Owen's left eye does not track the same as the right eye. His left eye tends to not want to go all the way to the outside. We also found out that there is a very real possibility that the pressure from the extra fluid in the brain can damage the optic nerve. Thankfully the doctor said that the optic nerve looks fine. He also said that Owen is too young to worry too much about the eye not tracking correctly. We're going to take him back in three months to see if it has improved any.

We took Owen on his very first real vacation. We went to a family reunion in Pennsylvania, and then went on to New York to visit his grandparents and great-grandparents. He did such a wonderful job. So many family and friends had not yet had a chance to meet Owen yet, it was wonderful to finally get to introduce him. He has come so far. When we first brought him home he could barely make it the three and a half hours home from the hospital. I had to hang over the back of the seat and hold his head up for the last hour of the trip to keep his oxygen levels up and we had to stop so many times that the trip took almost six hours. On this trip he made the twelve hour drive all in one day with only four stops.

Owen has become very vocal. Below is a little video of Owen in his swing. He has learned to pull the little fishie to make the music play and he loves to babble.
 
Owen in His Swing
 
I will close with another picture of Owen and his big sister Sammy, taken July 6, 2007.
 
 
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