4/27/05 Update

Not much change in Kenn.  On Friday 4/22, Jeremy
went to Juneau, to be with his dad when they took
him to have a swallowing test done. 

They wanted to test him to see if when he was given
something to eat or drink, did it go down to the
right place instead of into his lungs. 

They gave him an ice chip and this did end up going to
lungs and he doesn't cough each time this happens. 

They say it is possible he has had a relapse in
swallowing since the time he had stuff come up while
at Sacred Heart, so they aren't going to feed him any
thing right now that needs swallowing.

They will be testing him at a later time with the
swallowing test. 

The speech therapist is also trying a glycerin stick
that is frozen and has lemon on it.  She also has said
that his gagging reflex is not as good as it should be. 

She said he swallowing more when she uses this lemon stick,
which is good.  His swallowing is getting stronger. 

He does seem to focus a little more at times.  Some days
it's better than other days.  He is moving his left arm
more and they are working in therapy with this arm to
try to get him to move it for them.  His right arm they
aren't sure what is  just involuntarily or what is him
really moving it. 

I talked to the speech therapist there and this is what
she has told me.  This Friday afternoon. 4/29, I have a
meeting with the staff at Clearview to review things on
Kenn. 

They say it is still early to tell what his responses
will be to therapy.  I went to court today, 4/27,to obtain
legal guardianship for Kenn, which was very emotional, but
now there won't be problems making the decisions for him