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Jacob Catoe
Blog
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Sun, 24 Sep 2006
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Our New York Trip
First of all, I want to say thank you to everyone
who has donated, you will never know how much it
all means to us. We did finally raise enough
money to go to New York for Jacob's first
consultation on September 14. Apparantly, based
on the MRI images, the doctors were expecting a
completely different child. Based off of the
images alone, Jacob should not be functioning
anywhere near the level he is. Basically, no
plans for surgery have been made, but we will
have to go back to NY in about 3 to 4 months for
a follow up. Jacob has 2 syrinxes( a buildup of
spinal fluid on his spinal cord). One of them is
pretty large and is consuming about 80% of his
spinal cord. This could be what is causing
problems with his breathing but they're not
exactly sure. They wanted us to see a
Cardiologist to have a heart catheterization done
as step 1 to either confirm or rule out the
pulmonary hypertension diagnosis that we got from
MUSC. Apparantly, a heart cath is the only way to
know that diagnosis for sure. He also told us to
prop him up at night because of his reflux
problems and that might help as well. Jacob also
has a tethered cord which means his spinal cord
is attached to a place in his back where it
shouldn't be. His is attached at where is opening
was originally in his back. The doctors really
don't want to do any surgery unless he starts to
go backwards in development because there is a
very high risk that draining the syrinx would
paralyze him. They have to put a hole into the
spinal cord and drain the extra fluid out. Plus,
if Jacob's heart is in as bad of shape as the
people at MUSC think it is, it wouldn't be safe
to put him to sleep. They have ordered him to get
massage therapy because they seem to think it
would help him. So, as for right now, we are
going to a cardiologist in October to see about
the heart cath and then we will go from there.
Our problem is that whether is does have a
surgery or not, either way the syrinxes could
possibly paralyze him. As he grows, the tethered
cord will pull the chiari down further and cause
more damage. We are just taking it one step at a
time. I will keep updating as I know more. Thank
you again to everyone that has donated.
Posted 19:43
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