plenty of update, plus eating for uma

I sent out this email yesterday and just realized I forgot to post it on the blog. So here it is, a day late but still totally relevant:

Hello everyone...sorry it's been a few days since I sent out an Uma
update...a couple of people have called me this morning to ask how her
shunt revision went and I totally thought I'd sent out an email after
the procedure! Sorry to leave you all hanging. The procedure went
well!

Uma had her shunt revision on Saturday morning at 4am. The doctors are
confident that it was a success (and they confirmed that the previous
shunt was not working AT ALL), and Uma has been very alert since the
procedure and seems to be doing very well. She had lots of visitors
this weekend, too, and that was awesome. At one point yesterday
afternoon, I think there were eight of us there, and since she was in
the ICU (not because she needs to be in an ICU, more because it's the
only place where they had an available bed for her) we couldn't all be
in with her at the same time (the ICU only allows two visitors at a
time) so we cycled in and out of the room in five to ten minute
shifts, and I think it was nice for Uma to see so many different,
familiar faces.

Now we're waiting on a CAT Scan, which should happen sometime today.
They wanted to wait a couple of days so they could give the new shunt
a couple of days to work and get an accurate look at what's going on
in her head. As long as the CAT Scan looks good, they will transfer
her back to the rehab facility either tonight or tomorrow. (Call me or
email me if you're planning on visiting her tomorrow--Tuesday--and I
will let you know which facility she's at.)



I haven't given you all an Uma "task" to do in a while, so now I've
got one for you to (literally) chew on. It's similar to the "think
about Uma while you're swallowing" task I sent out a few weeks ago,
but slightly more elaborate.

When Uma gets back to the rehab facility, we are eager for them to
take out the trach in her throat so she can start talking to us again,
but before they take out the trach tube, they want to take out the
feeding tube. And before they can take out the feeding tube (which is
actually a PEG tube in her stomach), they need to get her eating
again. They will start with soft foods, naturally. Like apple sauce
(which they actually fed her in New York, once). And then progress to
"realer" foods.

So...this week...I was thinking it would be cool if we could all eat
some of Uma's favorite foods and visualize Uma getting back on the
whole Eating Train...because Uma freaking loves a good meal (she lists
"eating good food" as her #1 "general interest" on MySpace)...and
hopefully she'll be back in the whole
eating-with-her-mouth-instead-of-a-tube thing PRONTO so that they can
get that trach out and then we can help her back onto the Talking
Train. Are you with me? Awesome.

Some of Uma's favorite foods include:

--Avocado. This one's a biggie. Eat it alone, or put it on a sandwich,
or in a salad, or in whatever. Uma loves avocados everywhere. So put
'em everywhere. And then eat 'em.

--Curries. With chicken or whatever. Spicy, juicy, tasty curries.
(When Uma left for New York, she was only planning on being there for
3 days, natch, and she left some dishes in the sink, which then stayed
in the sink for awhile because Uma's New York trip ended up being, oh,
37 days longer than planned. Anyway, I mention this because, based on
the contents of Uma's dirty dishes, the last meal that she cooked for
herself at home before leaving for New York was curry. So curry on, my
wayward sons.)

--Speaking of spices, Uma loves the spicy. Ethiopian, Sri Lankan,
India, Thai--the spicier the better. She's got an extremely high
tolerance for the spicy stuff. I had Sri Lankan leftovers with her
once (that she had brought home from her Aunt and Uncle's) and I was
sweating like a pig, and she kept telling me I was crazy ("it's not
THAT hot"), so if it makes you sweat, that's good.

--Chicken. More specifically, chicken bone marrow. I know this is
super strange, and I doubt anyone on this list is actually going to go
out and crack open a chicken bone and suck out the marrow, but I'm
listing it because it's seriously one of Uma's favorite things to eat
and maybe someone WILL go out and crack open a chicken bone and suck
out the marrow, and that would be such an incredibly Uma thing of you
to do that I'm sure the good healthy vibes you'd be sending Uma's way
would be, like, even more intense than your usual good healthy vibes.

--Marmite. This is another weird food suggestion, but what can I tell
you: Uma's a strange duck. I've never eaten Marmite and I'm not even
exactly sure what it is, but I think they sell it at Trader Joe's and
other specialty grocery stores, so if you happen to see it while
you're shopping, throw it in your cart and give it a try. I think it's
something that one would usually spread on bread, but Uma likes it so
much she eats it straight from the jar. Not that she eats it very
often. It's something she used to eat a lot in Taiwan. But last
December, when I asked her what she wanted for Christmas, one of the
things she asked for was Marmite. So she's definitely been hankering
for it lately--and who knows, maybe you'll discover a new paste
delicacy and you'll start craving Marmite too? Weirder things have
happened.

And some drink suggestions:

--Red Wine. Uma enjoys a nice glass of red wine, but she ain't picky.
The cheap stuff works just fine.

--Red Bull. I know, gross, but Uma is totally addicted to the stuff.
There are usually at least six or seven empty cans rolling around the
passenger foot area of her car.

Alright, there you go: eat and drink up. Thank you for your continued prayers!

much love,
erik



ALSO, here's John's latest update, from last night:

hello everyone,

since the shunt revision early on saturday morning uma
has had a presence in her countenance that i haven't
seen so far. she is calm, sad sometimes, but clearer.
her facial responses to people are faster. she's not
fidgeting or jerking her left leg around anymore. her
right arm and hand are not locked up in spasm anymore.
this has lasted for two days now. twice the doctor
told us that she seems more 'awake' and that he thinks
the shunt is working.

they decided to do the ct scan tomorrow, monday. i
think this is medically prudent because it allows them
more time to see what effect the shunt has had, not
just on her outward behavior, but on what's taking
place inside her cranium. i've been taught tonight by
dharshi to ask the doctor these things tomorrow - Is
her 'mid-line' still shifted or pushed? Is there any
new bleeding? Is the shunt place properly? Is there
any calcification taking place? Has a radiologist seen
the ct?

There were many moments today between Uma and I that
were priceless to me. Just seeing her look at me with
such clarity is something i'll never forget. Lately it
feels like the passage of time has been altered for
me. I value those moments with her as if they might
never come again. This is NOT a pessimistic viewpoint
for me. This is living right now, IN this moment, and
valuing it as if it were unique and passing....as if
the memory of it will be of staggering importance to
me. And so the memory of those moments passes through
and adheres to every fold in my brain - at least
that's the way it feels.

So - a good friend of mine in New Jersey emailed me
and told me how amazing it is that so much love has
come down from this challenge. It IS amazing. I'm
changed for the better and I've heard that from many
other people. And the truth is, I don't know how I
would have come this far without every word and action
of love that we've received. I/we need ALL of it and
accept it gratefully. There are so many things that
can hide or crush love in this world. But Erik said
that he thinks Uma will come home to a world that is a
little bit better because of what has happened and how
we've all responded to it. I think he's right.

Lastly, it's just really not too late to pray for her
in this shunt business. I've been praying all day
about this and it has helped me to do it. Help
yourself :). She needs to move out of the hospital
setting and needs to do this with utmost confidence.
We know that the shunt will be something we'll be
tending to for the rest of her life but, for right
now, we want to have it work....let's say, for 6
months without another hospital stay. We need to know
that we can jump on this rehab with a real sense of a
reduced need to worry about whether or not she's
qualified medically to participate in rehab. That's
something to pray for....it's on-going, it goes on.
Pray a boundary of safety for her, for her head, her
brain, her spirit.

The plan for tomorrow, at least from another amazing
nurse, this one named Randy, is to get the scan done
in the morning and, if all goes well, move her back to
rehab the same day. I will accept whatever the scan
says and will always push (with respect and tact) for
the very best care for her. Pray for me, too if you
can spare one.

In hope and in love,
john

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HERE ARE SOME WAITING ROOM PHOTOS FROM SUNDAY (we're not actually in the "waiting room," though, we're in our de facto waiting room, i.e. the hallway outside of the ICU) (which is where we would wait to see Uma because the actual waiting room was just too danged small) (thank you to all of the awesome visitors Uma had on Sunday: Anna, Erica, Jamie, Ted, Michal, Jeremie) (and thank you Eleanor for bringing John lunch on Monday, and thank you John's parents for general awesomeness and for taking John out to dinner on Monday, and thank you Rebekah for bringing John lunch today)













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UPDATE: Awesome news!

I just got this text message from John:

"Transfering 2day 4 sure. Saw the ct scan myself & shunt is def. IN the vent."

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Oh, and also!

Several friends of mine--two couples, Bridget & Chris, and Jessica & Hamish--had babies this week and I just want to congratulate them. I haven't seen the little tykes yet, but I've seen photos and they're both little beauties. And I figured there are so many awesome people reading the blog these days and sending out love, so right now I'd like to send out a hearty "welcome to the world" to Rita Cathleen and Lucinda Rose. So...welcome to the world! If I've learned anything these past weeks, it's that there is SO MUCH goodness out there, and I'm happy to include the two of you in that goodness!

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And here's the latest beautiful example of Vandalism For Uma:



Nice.