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.
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