Today's Uma Update

AN UPDATE FROM MY MOM:

I visited Uma back at the rehab facility today, and it was wonderful to see her doing so much better after the shunt procedure. She seems to be a lot more comfortable, and that must be a huge relief for her. I spent some time reading entertainment magazines to her--well, mostly looking at the pictures--and a couple of times she took the magazine out of my hand and held it closer to get a better look. She seemed a bit tired--who wouldn't be after what she's been through the past few days--and almost fell asleep but then more visitors arrived, and she seemed to lose interest in a nap. First John's parents came in, and Uma gave Norma a lovely greeting--she not only smiled, but reached out her hand to greet her. Then Nancy, a friend from high school, arrived, and Uma gave her a beautiful smile, too.

Uma can't speak yet, but she says so much with her eyes. She doesn't seem to miss anything that is going on around her. But she does lose interest sometimes. It's hard to participate when you can't speak, so I think she has resigned herself to being an observer for the time being. I have a feeling that won't last long, because the rehab therapy is going to make demands on her and I believe she very much wants to meet those demands.

It is so amazing to watch Uma and John together. John draws her into his loving gaze and she just melts. They are so in love, and it is such a beautiful thing to see how Uma looks at him. Just look at this photo that I took today and you'll see what I mean. Love is going to pull her through this and bring her back to John and to the life she once knew. And that love is coming to her from more directions than she can imagine, with tremendous power to support her through the very difficult challenges ahead.

UPDATE: I just received John's update, here 'tis:

hi everyone,

Today was a very good day in so many ways.......

Prakash and Nava and Sissy and my mom and dad, and
Bart DeLorenzo and Uma's friend from high school,
Nancy visited and, of course, Erik's mom Sherry
visited and, once again, brought me lunch - which
ended up being lunch and dinner.

I arrived at the facility at 10 am and they had Uma
out in the hallway on a wheelchair. They do that with
some patients thinking it will be stimulating for
them. They don't know Uma. I've rarely seen her look
that unhappy. I immediatlely hugged her (she did NOT
smile at me, as usual) and asked her if she would like
to go back to her room. She nodded (!). We took her
back and THEN she smiled at me. She doesn't like being
put on display like that - which is how she would,
most likely, interpret that - with the whole
sing-songy-right-up-in-your-face-as-if-you-were-five-years-old-AND
DEAF, "HI UMA! HOW ARE YOU TODAY?!' from every nurse.
I know, I know, it is SO well-intentioned and probably
good for many, many people but, I'm telling you, not
for her. She is a very independant and proud person
and this may actually hinder her progress at times.
She may think she doesn't need to practice some
things, assuming she can just do them like before.

So we ended up changing rooms for reasons I don't know
but it's a private room which is nice for her I think.

The occupational therpist said she did "a LOT better
today than before" the revised shunt....I watched her
truly help a lot in dressing herself and she did very
well seated in the wheelchair and washing her face
with a washcloth and washing her hands with soap and
water.

The speech therapist began testing her with a speaking
valve in her tracheostomy. She did not speak today and
may not for awhile. Think about having a large tube
down your own throat for over 40 days and nights and
then having someone ask you to speak. Good luck. She
also did better with the ST than before.

We ended the day wathing Sex and the City episodes on
my laptop. There is only one headphone output so she
listened. The last time we did this was the last time
we were at this facility and she was somewhat into it.
She didn't really respond that much to it but didn't
push it away either. This time she was really into it
and, as soon as the opening credits began, she smiled
and opened her eyes bigger. I asked her if this was ok
and she nodded a few times. I was able to sit right
next to her and put my face next to hers and hold her
hands and arms etc. It felt a lot like home.

There came a point when she began to cry. Nothing in
the dvd indicated a crying response so I stopped it
and took off her headphones. I asked her if she was
sad and she nodded. I didn't ask her what she was sad
about. Instead I went through a list of absolutely
everything I could possibly think of that she would be
able to do again with time - acting, reading, talking,
using her arm, going home to watch Sex and the City,
having me cook for her and bring her wine, having her
cook for me (this brought a smile) etc. ....didn't
take long before we were back at the dvd. Later when
the final crawl came she was squinting her eyes at the
screen and began to cry again. I may have put two and
two together here and asked her if she was sad - again
a nod- that you can't read? - nod. More
reassurance......another episode of Sex and the City.
The last two episodes she watched alone as I had
retired to the foot of the bed - my feet on a chair,
my body on my right side with my head at about her her
hips on a pillow with her left hand alternately
holding mine and stroking my hair. I slept well for
that hour.

Tomorrow is another day but I feel better now. There
are going to be challenges and questions and the fear
of shunt problems (for the rest of our lives
together), but we literally are doing everything you
CAN do for her condition.

At this point I would ask you to pray for her spirit
to keep doing all the little, seemingly stupid,
exercises the therapists need her to do. When she
realizes what condition she's in and that these steps
will bring her back I believe she'll do extremely
well. She has great weakness and non-control on her
right side, especially her arm and hand. She tires
easily still. She has trouble with very basic things
but shows promise. It's going to be a very long road
for her but she has as much chance as anyone if she's
medically sound.

All my love and respect,

john