Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Fiona’s Progress - Wednesday August 22, 2012




Fiona is better in some respects, and worse in others. Her sense of
hearing is pretty badly damaged. She can hear loud noises, so we turn
up the stereo pretty loud for her and she'll smile.  We have learned
that one of her favorite songs is the Miami Vice theme song.  Fiona
was losing weight, but we added some corn oil to her diet and she is
now gaining weight. We will have her brain checked later this month
and will then compare the images to the test results from April to see
if the lipid buildup has changed or stayed the same. She has pretty
much lost use of her legs - we just see them twitch now. She can only
move her legs while they are under water (like while she is bathing).
She can lift her arms to chest height, but then they fall back to her
sides. She cannot grab objects any more or hold anything; she used to
be able to pick stuff up and put it in her mouth. 
Fiona is much more  cognizant of her surroundings and of Paxton and me. 
She looks at us  more than ever and makes a lot of eye contact again and
is able to  show emotion, which she was not able to do 2 or 3 months ago. 
I can  talk to her from across the room and she’ll smile. I can even get her
laughing on queue now.  In short, regarding Fiona’s progress in
appears that parts of her brain have gotten worse and other parts have
improved.  Although we are always grateful for her improvements and
progress and saddened at any regressions, one fact remains, we are
joyful that Fiona is here with us today!
So that’s where we are.  We head up to the University of MN at the end
of August for 3 days of testing. Hopefully then we’ll have a good idea
if the medications are working.  I still cry through any major medical
procedure; I just can’t get used to seeing her little body go through
all these tests. You would think that after all this time I would be
used to it.  A part of me dreads the upcoming tests. I just so
desperately want to hear good news and am terrified of all the
possibilities…please keep Fiona in your prayers.

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