April 4th, Uma Update

Hello everyone...here are the latest Uma updates...from my mom and from John...much love to all of you...xo, erik

UPDATE FROM MY MOM:

I spent a few very special hours with Uma today, and it was wonderful to walk in and see such an enormous difference in her since my last visit a week ago. I know she is very frustrated with what must seem like incredibly slow progress to her, but the fact is, she is making dramatic steps forward. When I arrived, she was heartily eating a very boring meal of pureed food. Even though the food wasn't exciting, it must be thrilling to be getting back the capability of eating rather than having liquids poured into you through a stomach tube. And she will probably begin eating solid foods this week, so please visualize her swallowing with no problem and convincing the doctor that the stomach tube can be removed.

I shared a guilty pleasure with Uma today--watching soaps. I got a big smile when I teased her about getting me hooked on soaps. It is so easy to get caught up in the problems of those beautiful people on the screen. They are so beautiful that you can't help but enjoy their suffering. For Uma right now, just watching is part of getting back a sense of normalcy in her life, because she has long been a soap fan. We enjoyed a relaxing hour of TV before the occupational therapist arrived. One of the big focuses today was trying to help Uma strengthen her right arm. She got very frustrated when she was unable to move it, but then the therapist explained that just leaning on her right hand would help strengthen her muscles--that this is a beginning, and many patients in her condition have recovered the use of their arm. Uma seemed to be reassured by that. Her therapy also included a bit of cleaning in the kitchen, and she did a great job scrubbing the countertop. The occupational therapist works on helping Uma function in many practical everyday ways that will help her to be independent when she leaves the hospital. Uma seems to be responding to this therapy very well--a sign of how eager she must be to get home.

Next she spent an hour with the speech therapist, who had her counting and working on pronouncing words. The therapist explained that Uma is probably not able to understand complex sentences right now, but does grasp key words. So we can learn to emphasize the main idea of a sentence and keep it short when we speak to her. She does seem to understand a great deal of what is being said to her. She is also gradually finding more words to express herself, but the inability to put her thoughts into words is probably her biggest frustration right now.

John is keeping a detailed diary of her day-to-day activities and visitors are adding their messages to this journal. It's becoming a beautiful record of her recovery, and it's very helpful when the nurses come in and ask questions about Uma's activities. One nurse today said she's never seen a patient with so many visitors. And all the therapists comment on how incredible John is. He certainly has their attention--they know he's closely monitoring everything that happens, or doesn't happen, and I'm sure that's making a difference in her care.

In the midst of all of the hard work Uma is going through, and all the frustration, there is that beautiful smile. Her sense of humor is very much intact, and what a joy it is to see her face light up when something amuses her. That, more than anything, tells me she is farther along than we can even see. Each day is filled with small steps forward that will all add up to big steps down the line. It is a privilege to be a part of Uma's journey. I so admire her courage.

*

[a note from Erik: When Uma's finally able to use the internet again and she starts reading these updates, she is going to be so pissed that my mom outed her as a soap lover. But then again, I don't think she was ever very good at keeping that info in the closet. So maybe she won't be pissed. Either way, it'll be exciting that she's on the internet away, snooping and such, so I'm cool with her being pissed about the whole "out as a soap lover" thing.] [Also, while we're on the subject of loving soaps, I'll come out of the closet too and admit that Uma got me hooked on One Life to Live. Ohhhh the travails of Todd, Blaire, and Star will never be boring, no matter how many times Todd betrays Blaire and Blaire takes him back again.] [If you're also a closet soap lover--god, that phrase makes it sound like you like soaps that clean closets, not secret lovers of soap operas--anyway--if you're also a secret lover of soap operas, then take comfort in the fact that you're in good company, and next time you watch your soaps, visualize Uma curled up on her couch at home, fully recovered, enjoying those ABC soaps completely openly.]

*

UPDATE FROM JOHN:

hello everyone,

i honestly can't remember the last time i wrote or the
last time i was home. i've been staying at the
hospital over night and, since uma is now becoming
what they call a "fall risk", I've been finding it
difficult to go home.

the work she is doing is really good. she is improving
everyday in every area. today i watched her walk on a
treadmill with help from the therapists - but not very
much help at all. and then she walked back from the
physical therapy gym to her room - about 50 yards -
with her cane and a small brace on her right leg.

she has been eating orally since friday and had had
her tracheostomy "blocked" since monday evening. it
looks good for her to have the feeding tube taken off
late this week and possibly even the trach.

one of the problems with having been around there so
much is that i have, in effect, 'trained' the nurses
to rely on me to do all the transfers to the bathroom,
much of the maintenance of her airway, feeding, and
monitoring her. the other problem is that i'm now
needing to get away to work occasionally and also just
to get away. erik has been great, as usual, in helping
to get me some help during the weekdays and weekends
so that i can leave. but i have a specific request -
monday, april 9th i need to do a job that will take me
away from the hospital from about 3:30pm to 7:30 pm.
is there anyone who can come by then to make sure she
doesn't try to walk away (don't laugh - that's what is
meant by 'fall risk'.....she sometimes just tries to
get up from bed or her wheelchair and walk!)

also- along the lines of specific request - we're
looking now for world class speech and physical
therapists to augment the out-patient program she'll
be on. these specialists can be in the form of
private, in -home workers, or in the form of another
facility here in southern california. what we need
are recommendations from people who've had some direct
or even indirect connection to neurological or
post-stroke rehabilitation. the reason we're looking
for this is that the county system will only give us
so much per day and per patient on these crucial
issues and uma can accelerate much faster in these
areas even now. the work she is doing now is truly
great but we want to let her rebuild herself with no
limits if at all possible. please let me know and i
thank you in advance.

she is very clearly "in" her body - that is ....uma
exists much as she was before. the problem is that her
words don't work. she has aphasia. they are very, very
slowly coming back but the problem is that she still
has an expectation of using language....her
intelligence remains but her words are, for the most
part, gone. each day she seems to be able to follow
more of a conversation and more commands from staff
but she, as yet, can't SAY what she wants at all.
(except for 'i want pizza' which i taught her to say
when my sister sent one to the room. she tasted a bit
of it. funny how that phrase stuck with her so easily)

she can become really frustrated by this...to the
point of tears and real agitation. she can read quite
a bit and organize sentences via reading comprehension
but this has not yet translated into the spoken word
for her.

other parts of her mind seems to work very well.
sometimes something happens with us that is truly
funny - not like a joke or funny sound or accent or
sight gag but just an everyday occurrence .....putting
your arm through the wrong sleeve of a shirt etc. and
she laughs....no cues, no words. two days ago we
played the card game 'war' with the recreational
therapist. basically each player draws a card and who
ever has the highest face value takes the hand. uma
presented as someone with no problems at all. the only
sticking point was when there was a six and a nine
drawn in the same hand......she took a bit to
distinguish the two.

she had a cast on her right arm to reduce spasticity
and this now off. that thing weighed almost as much as
she did! and they've begun again with electrical
stimulation for that arm.

i just keep on it and keep pushing with all the
respect i can. we all get along very well with all the
staff and nurses. pretty soon there isn't going to be
anything for the nurses to do for her anymore. but the
discharge date is somewhat flexible - if she is doing
very well, they might keep her an extra week.

i saw the results of the follow-up ct scan yesterday.
her ventricles are smaller and look more like
ventricle are supposed to now.....sort of butterfly
shaped. they will most likely improve still. she looks
to have had a lessening of swelling and infarction but
these things did take place. techinically, after the
aneurysm, she suffered a stroke.

her character and stamina are amazing given what she
has been through. she really is the strongest person i
know. the challenges ahead for her are monumental. to
hear that she can now walk a bit, or eat some, or talk
some is very encouraging. to see it first hand each
day tells a story of many, many months and even years
before she is done working on this injury. every day
is huge - there's just no way around it. each day is
so large in every possible way for both of us. this is
the highest level of living i've ever experienced and
it can be grueling. it requires a level of stamina i
didn't think existed in me but, somehow, it's there.

i'm just thinking now of how many prayers there have
been from all those different people, many we don't
even know......it helps me to view this, as my father
said to try and do, as a gift. it's hard, believe me,
but i think this is the right path to take. how we
respond to these situations is the key to it all i
think.

i thank you all, in advance, for praying for her mind,
her spirit and her body to heal (a moment of bravery
coming....) COMPLETELY!. keep hoping and loving.

love,

john

ALSO FROM JOHN:

hello again,

forgot to mention the following links again. the first
is erik's blog spot - very nice. lots of pictures and
good perspective on all of this. the second is a place
where you can actually buy a t-shirt or other item
that has different versions of 'team uma' or 'i love
uma' etc. on it. that sight was set up by our friend
michal braun - very nice indeed. (profits go to the
fund for her now and future rehab!)

thank again.

bye

http://www.spreadshirt.com/shop.php?sid=97704


ALSO:

There's a photo album of all of Uma's hospital photos at: http://www.flickr.com/photos/theumafund/

And if you want to buy crafts made with love for Uma (all proceeds go to fund Uma's rehab):
http://www.etsy.com/shop.php?user_id=5098556

and www.teamuma.blogspot.com