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July 30, 2007

Well, I needed that! (Uma update... with video)

WOW!

Usually I post the Uma Updates without commentary, but this one really, really got me. Somewhere around videos three and four I just lost it. I am soooooo proud of Uma and the progress she has made. She is doing SO WELL!!! And she sounds fantastic too. Oh, our sweet, darkerUma is just AMAZING. She's a miracle!

So, I wanted to post both to share the below update and links *and* to again say thank you to everyone of my friends and family who reached out--without even knowing Uma, or John, or Erik--and made donations to The Uma Fund earlier this year. You all helped something really phenomenal happen. And it continues to happen every day.

Bless you ALL.
-Bon.

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Dear friends,

My apologies if you've sent an email recently and I haven't replied to it. I'm way behind on my email replies!

Below, you'll find a detailed Uma update from John. But I'm going to start with a quick Cliff's Notes version because I want to ask you all to do some more visualizing, and the sooner the visualizing the better. Uma's getting an angiogram tomorrow morning (Monday, July 30), which is basically a scan of her brain to check out a portion of her aneurysm which appears to be bulging out of the coils that were originally inserted to contain her aneurysm. Please visualize this angiogram going well, and any procedures that might follow the angiogram going well too. Uma's kinda nervous about this trip to the hospital because it's the first big hospital visit she's had since she's been completely conscious of all of the things she's going through.

So send some good thoughts her way, if you will. Thank you…

Now here's John's latest update, with more detailed info about what this angiogram means:

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Hello everyone,

Uma and I are sitting in a doctors office wating for
her pre-op tests. It's friday.

She was approved for medi-cal earlier this month and I
remembered that, at one point, in NY, we had contacted
Dr. Wouter Shevienk, the director of the Maxine Dunitz
Neurosurgical Institute and he agreed to accept her as
a patient provided she was a qualified medi-cal
person. So....on Wednesday I called and asked if she
could see him. They set up an appointment for
yesterday, Thursday, and decided, after reviewing
films and charts from NY, that she needs another
angiogram to verify the efficacy of the coils clotting
her aneurysm.

Today we are having tests done to make sure she's ok
physically to have the angiogram and, possibly, more
coiling on Monday. On Monday, there are three
possibilities - 1) that she would not have any
problems and go home 2) that she would have a problem
that can be fixed by coiling and they would do that
then 3) that she would have problem that cannot
permanently be resolved through coiling and would
require "clipping", which would be done at a later
date.

Coiling is the placement of microscopic platinum coils
in the "dome" of the aneurysm to assist the body in,
usually, a permanent clot. This is done through a
femoral artery catheter and is not considered a
surgical or invasive procedure. This is what they did
for her in NY. The risks of this procedure are that
coils can loosen up, allowing blood to flow again into
the dome of the aneurysm or that the cois can actually
slip out of the dome and into the blood vessel which
can cause an inappropriate clot or stroke. These
things are unlikely but they do happen. Coils are not
always a permanent solution to an aneurysm and require
that she get checked regularly thoughout the year.

Clipping is an invasive surgery. They cut into her
cranium, locate the aneurysm and clip the "neck" of it
with a tiny titanium clip. This is considered a
permanent fix to the aneurysm if done without
complications in the surgery. The risks involved in
clipping are the same with any cranial surgery as well
as problems with the invasive quality of the
procedure. Any time you stick things in the brain you
can have swelling, vasospasm, stroke, memory loss,
speech problems, blurred vision, headaches, infection,
paralysis, etc. These complications are lessened by
the fact that she is not in the middle of her
aneurysm breaking. It's not an emergency.

She just went in for the chest x-ray. Earlier this
morning she had the other normal tests and she's ok to
go.

I was up last night, unable to sleep, thinking about
the options here. The idea that we could have a
permanent fix is very attractive. The idea that she
could possibly be set back in her speech or physical
therapy due to complications of clipping is
heartbreaking. She has come so far and I don't want to
see any of that amazing work compromised.

It's now sunday morning. I think I was avoiding
finishing this email because there is a part of me
that, honestly, doesn't want to face more
hospitalization for her. I thought it enough that she
would be in intensive rehab for more than a year. This
latest has brought back a lot of resentment on the
part of the doctors in NY. Why they never bothered to
tell us about this I don't know. Maybe tomorrow, after
her angiogram, we'll find out why they never told us
about it. Though it doesn't always help to look back
on things, I wonder where we would be in our lives now
if hadn't been looking through her chart and found
this report about the remnant of aneurysm. But as long
as we have to face this, then we might as well face
the whole picture which includes how we'll view, in
ten years, whatever hardship she's about to endure. If
surgery, exluding complications, then we have reason
to breathe a bit easier in terms of recurrance. Also,
and I hope I haven't said this about other situations,
I believe we are in really good hands. Cedars Sinai
and these physicians have an excellent reputation.
That and my informed questions and proper responses to
the answers are what we can do, physically, to help
her.

And now I want to ask all of you to pray for and think
of her tomorrow, Monday morning. We check in at 7:30am
and, at some point later, they take her back. People
are always reminding me to take care of myself. I've
found that this is often a spiritual thing, even if
I'm just going for a run to keep my first heart attack
at arms length. I'm thinking that one great prayer is
the one where you take extra good care of yourself (on
Monday morning) in honor of Uma and, of course,
yourself. Do something beautiful for yourself or
because of yourself and send that love past Uma on the
way to its final destination. For what it's worth, I
truly believe all the people who helped in this way
saved her life. I believe in it and I believe in you.
Thank you.

Recently Erik sent an email with video links to people
who donated to Uma. I don't think he'll mind if I send
the link to everyone. So here they are....

http://www.youtube.com/watch?v=lNPsSaG7nMw
http://www.youtube.com/watch?v=jbINlKh8fbU
http://www.youtube.com/watch?v=UY1wYo5Ti38
http://www.youtube.com/watch?v=p_ejiZyF--g
http://www.youtube.com/watch?v=pHsrhSQo_XA

Also, I've set up a myspace page for Uma that is
including photos and video of her progress so far. As
often as I can, I will update this.

http://www.myspace.com/umaspace

Thank you for Monday.

Love,

John

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Okay, this is Erik again. I really like the paragraph in John's email where he talks about how doing something for yourself is a way that you can take care of Uma. I like it because it's a "task" and it's been awhile since we've sent out an Uma task. And we've seen that these tasks result in good things. Change, progress, health. So it's time for another task, dammit. Like John said, please take a moment (or several moments!) to do something for yourself today.

And while you're filling yourself with happiness, please send some of that energy Uma's way.

Thank you.

with love,
Erik

Posted by bonnie at July 30, 2007 12:39 AM

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