latest Uma update from John (7/12/07)

FROM JOHN (7/12/07):

hello again everyone,

i've been busy! but i've been thinking about how all
of you prayed and thought and meditated and walked and
vandalized and wrote and donated and called and
visited and cooked and cleaned and walked and
tried.....and i feel like i really need to tell you
all what's going on with uma on a regular basis.

life is very strange compared with what i've been lead
to believe it 'should' be. it is what it is i guess
and you react as best you can to what is in front of
you. for a long time i thought the adjustments to our
new life together would be more difficult for me than
for her but the more aware uma becomes of her
situation and the more she can actually do the more
she is prone to being depressed or resigned to her
current abilities. getting her to do things for her
own therapy on a self-motivated basis is not so easy.
the great thing about her is that, if you do give her
a task, she will do it all the way and won't stop
until she can do it right. when i said this was going
to be a long, long recovery i truly meant every word.

today was the last day for a while that our home-based
physical therapist (robbin, the associate professor at
usc) will come over. she is due to deliver her second
child on july 20th so.....you know....time for a
break. i've recorded a lot of video to use as
reference for our home program. i feel confident now,
after 2 months, that i can duplicate the exercises.
part of this confidence comes from the fact that uma
doing so well and can respond to commands and
understand the reasoning behind subtle changes in,
say, position or muscle/movement emphasis.
we continue to go to a hospital-based speech and
physical therapist each three times a week.

a typical day is - get up about 8. uma dresses herself
while i make breakfast. we eat, usually while watching
a tv show she likes (dawson's creek or something like
that). i put in her contact lenses for her (but she
has to say, "contacts" before i do it and this is a
very hard word for her right now) and tie her shoes.
she gathers up her purse and we go to glendale for
therapy. there she spends a couple of hours back to
back with speech and physical therapy. both therapists
are very happy with her progress.

much of the speech therapy revolves around reading and
comprehension. there are flash cards with pictures to
name-many of which she can name already without any
cue-ing- and very short stories to read and answer
questions about. she can't actually read aloud nor can
she yet say any of the words individually that she
sees on paper but she somehow gathers the meaning of a
sentence and can refer back to it when answering
written questions about the content of the story. she
'says' she feels like it's cheating because she gets
to look at the story text while answering the
questions but, in the end, it's all reading and
understanding and that's what we want. but that shows
her spirit - she wants to do it right.

physical therapy usually begins with the stairstepper
- up to 85 pounds the other day - for ten minutes. the
last time she did the stair stepper she held on to the
railing with both (yes, both) hands. no tape, no
cloth, no assisting. this happened on a day when she
also made a lot of headway in the 'weight-bearing'
positions they want her right arm to be in. the more
weight her arm/hand can bear, the more it will wake
the brain up in that area......then she will walk
sideways, backwards, up and down a small staircase,
etc.....do hamstring lifts with ankle weights or
repeatedly lift her right leg out and balance - lots
of different leg excercises. then there is right arm
stuff including massage and movement. (i'm hoping to
get together a myspace page detailing a lot of this
activity and uploading videos of her progress - she
said that would be ok with her). last evening in our
tiny little pool she was sitting on a lawn chair and
raised her right arm up on it's own to land on the
armrest, and, with help from her left hand, spread her
right fingers out and over the edge of the armrest.
this is the first time she's done anything like this
herself. that she'd be interested in it, think of it,
and be able to do it is a great sign and is also a way
to bear weight.

....then we would come home, i'd make lunch, we eat,
usually i do the dishes and then we begin a routine
that takes up about 25 minutes an hour each hour until
dinner. this routine varys from hour to hour but
includes speech therapy from her work book - reading,
alphabet flash cards (she can do A, B and C
consistently so far), pointing to objects in the room,
mimicing me while i say, "poe, toe, boe, woe, no, low,
so, zoe, koe" etc. - some of these are easier than
others for her. it also includes upper and lower
extremity stretching and range-of-motion, standing and
seated calf and toe raises, isolated quadricep and
hamstring exercises using the wall and a basketball (
look for the video.....soon i hope), exercises for
external rotation of her arm, wrist movement, pushing
and pulling with various devices (arm stuff), etc.
then, every other day we drive down to the fern dell
at the bottom of griffith park and walk up to the
observatory and back - takes about an hour....come
home, hop in the little pool and talk.....she takes a
shower, i cook dinner, we eat and, pretty soon, she's
asleep. and the days go on like this. i'm taking a
lot of time off work the next few months so we can
intesify her regimen. she's ready, i can feel it. the
catch is that, the more she can do, the more she
realizes what she can't do. but, also, the more she
can do, the more she wants to work.

with days and evenings like this ( add in work,
cleaning the house, grocery shopping, laundry) and
you can see why it's been so long since i've written.
i'm sorry about that but i just get so tired at night
which is about the only time i can do it.

she can answer the phone now and have a bit of
conversation, too so, those of you who have her
number, give her a call and maybe ask her when you can
see her if you want. that would be great.

all my love,

john