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March 21, 2007

Uma Update

Latest update from EriK:

I have some rockstar news: Uma is back at the rehab facility. Which means her therapists can get all of her therapy back on track. Which is huge, awesome news. Because for the last few days she was just sitting there in the ICU, bored as all get out, waiting. And now that she's got a perfect, functioning shunt that's going to facilitate a whole lot of progress in her brain, we don't want her to have to wait anymore--we want to take advantage of her new shunt and start getting her better! So now that she's back at the rehab facility, that's the plan.

Here's John's update from last night, and I'll post my update below John's.


Hi there everyone,

About an hour ago Uma was taken back to the wonderful
rehab facility. I was told early in the day that the
transfer would be today, but after waiting for about 9
hours and being told several different things, I
finally put both nursing stations at both facilities
together on the phone so they could finally figure out
who is suppposed to call the amulance.

I saw the ct scan today - i had to actually run and
chase down the doctor to get his attention but he
showed it to me - he actually voluteered to show it to
me. I saw a rounded black object in the middle/right
of Uma's head - her right ventricle - and right in the
middle of it was a short bright white strip - the
shunt. So then, I was looking at a shunt in a
ventricle which, I am agonizingly sorry to say, I have
not seen before. When looking back on this some might
say, "Well, in the grand scheme of things, you only
lost a couple of weeks due to the mal-placed original
shunt..." but it's different when you're there each
day all day and all night knowing that something isn't
right and knowing that there is so very little you can
do about it and knowing that this isn't her elbow -
she didn't sprain her ankel here, this is her
brain.....there's really no feeling quite like it and
I wouldn't recommend feeling it if you can possibly
avoid it.

On the other hand......her face is different now. I'm
almost afraind to say how much more clearly she looks
at you or at her environment. She cried twice today.
Because she can't talk yet, I don't know why she
cried. But she was looking at one of the wires
attached to her in the ICU, the pulse/ox that attaches
to her finger. She was studying it for a long time and
then she looked at me and just started crying. The
tears and her face told me she was afraid and sad. I,
of course, comforted her - telling her that everything
she was and wants to be will come to pass, that she
will use her right arm and leg again, that she would
come home again, that we would get married, that she
would go to work again, that she would act again, even
that she would take care of herself again, and that
today we would be going to a better place.

I can't imagine what it must be like for her but i
have a feeling we will know soon enough.

I was too tired to tell you last night what happened
yesterday. She kissed me.....no, I'm mean SHE kissed
ME....I didn't reach down and kiss HER. She lifted up
her head to me, held the back of my head with her left
hand and kissed me like a woman kisses a man. A very
intense and wordless (!) moment followed.....just eyes
and cheeks and hands and breath. Funny how you can't
hear a single ICU alarm going off in a moment like
that. My entire universe was her face, her eyes and
the tiny-ship-in-the-middle-of-the-sea feeling you get
when your emotional exchange reduces every distraction
to it's proper size. ....you float, safe because you
are together.

And.....today, while listenig to music, she began to
move her head and purse her lips in that "Uma -
getting-ready-to-dance" way. Any of you who've seen
this know what I'm talking about. It wasn't jus
tapping her foot in time to the tune. Nice.

So - I feel that I can't ask for much more than a
properly placed shunt and the behavior she's beeen
displaying and being out of a hospital. I feel that if
she remains medically safe, she will be
rehabilitationally sound.

And, tonight, I will sleep.




And now I want to share some moments I had with Uma yesterday:

When I first arrived at the hospital in the afternoon, John had been alone with Uma all day, so he left the room to take a nap, and I sat with her alone for about an hour. When I sat on the edge of the bed, I felt my glasses move ever-so-slightly down my nose and they were kind of uncomfortable and without indicating anything--without pointing at my glasses, without wrinkling my nose to shake my glasses--I asked Uma, "can you push my glasses up?" And without missing a beat, she immediately reached over and pushed them up the ridge of my nose. Total comprehension, without a doubt. (I think this comprehension sometimes comes and goes though--later in the afternoon, when John had returned from his nap, I asked Uma to push my glasses up again, and she wouldn't do it. I don't know what to make of that. Either she didn't understand what I was asking, or she realized that I was trying to show John that she understood what I was asking and she didn't want to "perform" for me. Both seem equally possible. If her comprehension does, indeed, waver like that, that's just something we're going to have to work on with her during her rehab.)

Uma and I hung out for a while and at one point I asked her if she wanted to take some photos with my phone. Her face brightened when I asked her that, so I put my phone into "camera" mode and I handed it to Uma. Now, when you're taking photos with my phone, it has a pretty big screen that shows you what you're about to take a photo of, and Uma held the phone up and started surveying her surroundings through the phone. She definitely seemed to understand what she was doing, like she was looking for a good photo. I told her that she had to "push that circle button in the middle" when she wanted to take a photo. She didn't show any signs that she knew what I meant, though, and then she just kept surveying her surroundings through the screen. So I told her again, "you need to push that circle button in the middle if you want to take a photo." I wasn't sure if she was understanding, so I told her several times, and pointed out the correct button. Finally, she "got it," pushed the button, and took a picture of me. Then I told her, "you have to push the button again if you want to save the photo," and she immediately pushed the button again. Then I asked her, "do you want to take another photo?" And she did--she took two more photos of me. Then I asked her, "do you want to take a photo of the ICU, so you can show people what you've had to stare at all weekend?" And she understood what I was saying, she stopped pointing the camera at me and directed it at the room. She held it up for a while and I thought maybe she'd forgotten about the whole "circle button in the middle" thing, so I reminded her--a few times--and then, finally, she took a photo of the nurses station across from her bed. I'm going to post these photos on my blog so you can see for yourself, but I thought it was pretty danged cool.

While I was sitting with her, watching her take photos, I had such a strong sense that: yes, this is going to be a long road of recovery; yes, there are going to be many frustrating moments for Uma; and YES, she's going to get through this. And that last "yes" is the most important one. I mean, obviously. But still: we have to remember that they told us she was probably going to die. And they didn't just tell us that once. They told us TWICE. And those aren't words that you freaking EVER want to hear. But still, the doctors said those stupid words on the first day, and then they said them again on Day Fourteen (after she had her stroke). And look at what she's doing now! Every single day is a blessing and a miracle. Every single day is a day to say "fie on you" to those stupid doctors who dared underestimate Uma. Every single day there is something to celebrate.

Okay, so after our photo session, I found the latest copy of Premiere Magazine in my backpack and I started showing photos to Uma. As most of you probably know, Uma's a total subscriber to US Magazine, and she loves the whole celeb thing, so I figured she'd enjoy checking out the photos, and she definitely seemed interested. There was this one page that had four photos on it, featuring four celebrities: Sienna Miller, Justin Theroux, John Cusack, and Mandy Moore. I pointed each of the actors out and then I asked Uma, "who's your favorite?" And she immediately pointed to Sienna Miller.

Okay, two thoughts popped into my head the instant she pointed at Sienna Miller:

(1) She understood that I wanted her to point at one of the photos on the page! I didn't indicate by pointing at the page myself, I just asked her to show me which actor was her favorite and she immediately responded! Comprehension! Awesome!


(2) There is NO WAY that Sienna freaking Miller is Uma's favorite actor in that group.

So then I thought, maybe she doesn't necessarily remember who all of these actors are and she's just responding to the individual photos and the photo of Sienna Miller is her favorite photo? Of course, since she can't talk yet, this is all just conjecture, but that seems to be the most likely thing to me. Because honestly, Uma: Sienna Miller?

I decided to ask her a different question: "Can you point out one of the two men?" She furrowed her brow and didn't seem to understand what I was asking. So I changed the question again: "Can you point out John Cusack? He's the one who's holding his collar. Who has their hands up? Who's holding their collar?" Uma looked at the photos, but then she furrowed her brow again and didn't seem to understand what I was asking. She seemed frustrated and tired, so I told her not to worry and put Premiere Magazine away. Maybe we will have to re-educate Uma in the brilliance that is John Cusack--and if that's the case, I'm happy to take on the task.

By then it was 6:30 p.m. and the ICU doesn't allow visitors from 6:30 p.m. to 8:30 p.m., so John and I went out to the hallway to hang out and wait for Uma to be transported back to the rehab facility. John's brother Wayne came by shortly thereafter to wait with us. (I am still so in love with the back of Wayne's head--remember, Wayne shaved Uma's name into his hair? It's so cool.)

For a while we got kind of nervous that Uma wasn't going to be transported last night--which was a frustrating thought because the sooner she gets back to rehab, the sooner she can get back into her therapy regimen--but we didn't have anything to fear: Uma was finally picked up by the transport people at 9:30 p.m. and she was in her bed at the rehab facility thirty minutes later.

Visiting hours at the rehab facility usually end at 8 p.m., but since Uma was just getting checked back in, they let us come in and say goodnight to her. After John and Wayne said goodnight, I decided to hang out a little bit longer because I knew I wouldn't be able to visit the hospital today (Wednesday), so I sat by Uma's bed and talked to her for a bit, and then the most amazing thing happened. At least it felt like the most amazing thing to me. I was talking to Uma and I wasn't looking for a response from her--I was just talking--and I said to her, "you know how much I love you, don't you?" And then she nodded. I swear, I screamed at the nurse: "DID YOU JUST SEE THAT!?? SHE NODDED!!!" Because Uma hasn't been nodding or responding to yes or no questions AT ALL up until now. Nodding a "yes" is huge. So then I asked her, "and you know how much John loves you, right?" And she nodded again! And then I told her she was doing really well and she had to nod for the doctors the next day when the doctors asked her yes or no questions, and then I was kinda giddy and I just wanted to KEEP asking her yes or no questions because this was all too exciting.

So then I asked her if she wanted me to call anyone on my cell phone and have another friend talk to her. She smiled, and then I asked her: "How about Erica? Do you want me to call Erica?" And she nodded, so then I called Erica and put Uma on the phone with Erica, and that made her happy. So then after we finished that call, I asked her if she wanted to talk to anyone else, and I scrolled through my phone and said, "what about Bo?" And she nodded again, so I called Bo--but unfortunately we got his voicemail and I left a message telling Bo that Uma was "REALLY ANNOYED" with him for not answering the phone, and Uma was smiling the whole time I left the message. Then I asked her if she wanted me to call anyone else, and I think she was kind of over the whole "calling people" game after having gotten Bo's voicemail, and she shook her head "no." This was a definite "no" shake. It wasn't quite as clear as the nods she had been doing, but it was still a "no" shake.

By then, Uma seemed kind of tired, so I asked her if she was comfortable (and again, she nodded!), and then I said my goodnights, and left.

I just wanted to share all of those stories from the day because I think they're so encouraging and hopeful. Thank you for all of your prayers and good thoughts. Keep them coming. You are all beautiful people!

Oh, one last thing: Michal designed several awesome Uma t-shirts that you MUST check out! Here's the website:

TeamUma.spreadshirt.com (proceeds go to The Uma Fund)

Much love,

Posted by bonnie at March 21, 2007 2:29 PM


I was too tired to tell you last night what happened yesterday. She kissed me.....no, I'm mean SHE kissed ME....I didn't reach down and kiss HER. She lifted up her head to me, held the back of my head with her left hand and kissed me like a woman kisses a man. A very intense and wordless (!) moment followed.....just eyes and cheeks and hands and breath. Funny how you can't
hear a single ICU alarm going off in a moment like
that. My entire universe was her face, her eyes and the tiny-ship-in-the-middle-of-the-sea feeling you get when your emotional exchange reduces every distraction to it's proper size. ....you float, safe because you are together.

That is beautiful!

I have a bunch of music I am happy to put on CD and send out, for Uma - if someone (anyone) gives me an address, and can pass it on.

Posted by: Helen at March 22, 2007 12:02 PM

That's good news. I'll keep the positive thoughts coming from this time zone while y'all are asleep.

Posted by: Dom at March 25, 2007 11:15 PM