Thursday, September 29, 2005
Wednesday, September 28, 2005
"Patel has been a beacon in a storm that continued well after the hurricane had passed, the evacuees said.
Debra Kelly told about the mistreatment of her pregnant daughter at a shelter near their home in Roberts, La., then getting price-gouged when gassing up at a convenience store in Collins.
"If it was not for Mr. Patel and the Cain family at First Baptist Church, we'd be on the street or in our car," she said. "They're like angels from heaven."
All 39 of the available rooms at the motel were filled with people fleeing the storm when it struck and at least 17 were still there this week. The First Baptist shelter shut down this week.
"He's letting us stay here for free while some people are out there double-charging," said Fuller, whose grandmother, Jewlene Fuller, is buried in Kosciusko.
But the Patels' hospitality didn't start there. When the electricity was knocked out on the day of the storm, Patel and his wife Hasu -- who were fasting that day in accordance with their Hindu faith -- cooked a giant pot of rice pulav to feed all the guests. The next morning, they made coffee for everyone.
The day after the storm, Patel gathered the guests together and told them they could stay as long as they needed -- just send him a check when they were able. Two days later, after some either went to where their homes had been or got word that their homes were destroyed, Patel announced that everyone could stay for free as long as they needed to.
"I told them I will not take any of their money,"
he said. "Some of them insisted, but they lost everything ... I can't take their money.
"God blessed Kosciusko to not receive much damage, so we're lucky to serve the people," said Patel, who retired after 28 years as a "plant doctor" for Mississippi State extension service and bought the motel in November 2001. "God gave us an opportunity to serve and that's what we're trying to do."
Friday, September 23, 2005
Update from Kim
Gwen had a pretty good day yesterday. More the same than different but we don't seem to be making much progress. Her high blood pressure is still a problem during the day but is well controlled at night when she's sleeping. We are getting there... She is still having fevers, vomitting, pain and distention. On the other hand she spent time on the play deck and had more hours of happy playing than we have seen in weeks. Her bilirubin has continued to go down (it's about the same today but at least not higher) so the feeds do seem to be helping. I just hope we don't push her too hard, too fast.
Today the big shift is from one formula to another and an increase in the amount she gets per hour. The new formula is one that will give her enough calories to possibly be able to reduce and/or stop the tpn. Of course, we would have to get to a much higher rate. Only time will tell.
We are hanging in there. It's another weekend and soon to be another end of the month. The residents will switch on the 1st and the PICU docs have a very irregular schedule this week (a few days here, a few days there) so it's hard to get "continuity of care". At this point we are trying very hard to "let go" and trust that the docs are making the right decisions. Not something we have always been good at doing. Gwen just keeps defying the norm and doing unexpected things.
Thanks fr holding us up and especially for helping Abby through this tough, tough time. We love you.
On another note, and with a heavy BBC radio accent,
THE DOGS ARE AT BAY. I REPEAT, THE DOGS ARE AT BAY.
Tuesday, September 20, 2005
I know what you're thinking, isn't food like poison to her?... Yes. But her liver is so sick they're trying to get her off the central line to give her liver a break, and see if a new combo of formula and medicine can help her liver.
Unfortunately, so far it isn't. She's failing all 5 standards by which it is determined if feeding is working. Blood pressure is way high, temp is way high, diareah and vomiting, and distended belly with pain.
They're trying a 3 hour on and 3 hour off right now.
She's in her 6th week in the Pediatric Intensive Care Unit. It's hard to be happycindy when she's so sick, and her parents are so exhausted, and I'm so powerless. Those of you who know me know I'm not very good at powerless over X thing.
I saw her yesterday and we watched a cartoon. She explained to me that the Koala Brothers weren't mice, they were Koalas, and no silly, that isn't a duck, it's a platypus. We talked about the cartoon and how the guy couldn't drive the airplane. We watched it again, and yelled, Look out, there's a mailbox behind you! But he drove the airplane into the mailbox again!
She was in a lot of pain, but her heart shone through. As do the hearts of her parents, Kim's parents, and the community that is gathering around them. She's a bright light of hope and joy and living in the moment.
People in this situation are wondering where is god? Today, I think God is Gwen.
Monday, September 12, 2005
An email I got made it clear that a photo of Gwen might help people "visualize Gwen's health".
This is her, holding two of the many different styles of ice cubes she can eat, sitting in her new chair, which is like a Transformer. It's a wheelchair, stroller, chair at a high or low table.
And when she's in it she's doesn't have to carry or push her big bag of TPN in her dolly stroller. On Sundays after Religious Education, she is often picked up by her moms and sister Abby. Sometimes she's picked up by her godmother Jeannemarie and her daughter Lillian, Gwens's best friend, who is a couple of years older than Gwen. Lillian takes the backpack out of the stroller, and puts in on her own back, and they walk down the hall hand in hand, central line (noodle) swinging between them. I hope this fall to get a picture of this.
TPN is Total Parenteral Nutrition - food that goes into a vein that goes straight into her heart. She recieves TPN from a big bag that's connected to a central line into her chest 17 hours a day. This is what the TPN looks like in her backpack.
Because our bodies are designed to take nutrition through the GI tract and then into the blood stream, this is very hard on organs that clean the blood -- gall bladder, liver, etc.) If you've been reading along, you've seen that Gwen's gall bladder had to be removed a month ago in an attempt to fix what was making her sick that brought her to the PICU this time.
As you pray, or visualize, or whatever; pray for her liver which is very tired and cranky and behaving badly, and that her body reabsorbs the blood that was in her belly after last weeks' surgery, and that the doctors can figure out the cart and the horse in regards to this long long hospitalization.
In case you can't tell from just a picture, she's the bestest, smartest, bravest, and kindest three year old in the world.
Three steps forward and two steps back. Gwen is still breathing well on her own. Sadly, her bilirubin and other liver numbers are very, very high and now she has a new situation- very high blood pressure. It's been creeping up for the past few weeks but reached a point of having to be treated today. She is now on a blood pressure med that we hope will help. Yet another new learning for us.
Our hearts are tired today. It's been such a long haul and we just need so desperately to go home. They are continuing to wean Gwen's pain medications. She cannot go home on any continuaoud drips so it's very important to see if she can do well without them. On the other hand, she has been on them for so long that it will have to be very slow and steady to avoid more problems from withdrawl.
Wishing for better news. Keep her in your hearts,
Pray for this dear little girl, her family, and her big sister Abby.
Yea, i mean pray. Sometimes philosophical discussions about positive thinking vs. prayer vs. having a good thought vs. meditating upon health are fun.
Right now I'm comfortable with the shorthand.
Saturday was teacher orientation, and an awesome 40-50 people attended, and 4 2-hour sessions later and somehow aimed my car home and tipped over into bed. Then yesterday was Opening Sunday/Homecoming Sunday, a social action project for Katrina, late registrations "But I'm sure I sent it in last spring" "Yes, and that's why we sent you another form last month, 'cause we were sure it was an oversight" and shiny excited new families, and people who wondered why there was no RE 'cause they forgot we start the eyar with an intergenerational service, and answering all the questions. I blogged at 5 am yesterday because that was when I could think the clearest.
So far today on my DAY OFF I have
started a loaf of bread,
called in to work to ask them to turn off the waterfall on my altar and to send the old financial computer to the computer guys so they could wipe it and re-load it for the Youth Director.
I had a good, really good, cup of coffee.
I've read a short story in an old Darkover anthology.
I drafted the outline for the first day of our newly invented 7th grade, 17 kids neighboring faiths/world religions class, which, I'm not sure how I ended up in the classroom on opening day of Religious Education.
I've chased the cat out of two, count them, two, baskets of clean laundry.
I'm slowly catching up on blog reading. Except for recent specific issues, I'm way out of touch, and even with the recent specific issues, bloggers are all over the place thinking and talking. It's great, but I'm, way way out of touch.
And my back yard is calling me.
Sunday, September 11, 2005
She had another surgery last week, this time to remove fluid that was around her liver (in case you missed it, 3 weeks ago her gall bladder was removed.) She had some very critical days, which is funny to say, because she's been in the peds ICU for over a month, which is kinda critical...
She was kept sedated and intubated for two days, then yesterday the tube was removed
THE TUBE IS OUT!!!! Gwen did great last night- temps normal, heart rate lower than we have seen in a month, and sleeping comfortably. So today they weaned down her vent and out came the tube just a few hours later. She's not even needing extra oxygen!
Her blood stuff seems to have settled down- no more transfusions for the moment. We are just hanging in there today. Watching how she does and beginning the very long process of weaning down her sedation and pain medications.
She is sitting up in bed, having a bit of a bath and bossing everyone around about what ponytail holders she wants.
Joy and happiness, a better day!
Anyway, someone linked to my blog after googling "submi**ive wive*."
Ya think I was what they were looking for?
UPDATE Dec 2007
I have removed all the s' because now, I get 5-10 hits per day looking for the above phrase. turns out I made it worse...
It'll still be cached on google, but hopefully it'll age out.
I mumble about wanting to look at closer at the idea that developmental stages had to be revisited, and that we, as UUs assume a tremendously high faith developmental level out of our adults and then are ticked off when our adults don't function on that level.
Well, now I don't need to, because Manish Mishra is a genius. Well, maybe not a genius as much as really really really smart. He wrote very nearly what I would write if I were to actually get around to writing it only with footnotes and way more research than I have time for. And with beter speling, and he's probably smartrer.
The Journal of Liberal Religion posted his essay, "Developmentally Challenged: Understanding Unitarian Universalism's Lack of Mass Appeal." Go read it.
Then discuss it with someone. ("UU adult religious education curricula, on the other hand, tends to assume a minimum of 4th order thinking, and actually operate on a level beyond 4th.")
Thursday, September 08, 2005
Will Shetterly is one of the writers whose books I keep on my shelf.
I feel all geeky and bubbly.
Who else are you blog people I'm reading all the time? I know Chris Walton is Chris Walton and Michelle Murrain is Michele Murrain, because they say so, clearly, on their blogs. Beth Young, you're really Beth Young, right? It's not a pseudonym?
Ok, but now I want to know who you all are.
Fausto? Dost thou have a real name?
I could go on, but you know who you are (even if I don't)
Monday, September 05, 2005
With a good bit of trepidation, we agreed.
Jake is a drummer and his mom says he's good.
Right. Mom says. Been there, done that... he's a great guitar player... she's a very good basketball player ... he's so talented at this type of abstract sculpture...he's an excellent actor, you won't even notice the nudity.
Merle says, they've been practising at my house for days, and they're good.
Sure, ok, well we love you, and Jakes' a great guy, and so we'll go and be happy about it.
Then there was a family thing that came up and Merle left town, and Jake was playing and then taking off. So Rebecca and I went for the purpose of supporting Jake and with every intention of leaving ASAP if it was really loud or really bad.
We were ushered to a nice table at the perfect angle to see the band close, and see Jake on drums. But Jake wasn't on drums, it was just three folk singers with guitars.
Well, turns out that Jake joined the previously existing Relative Strangers, an incredible group of singer-songwriters, and would join them for the second set.
Besides the fact that The Iron Horse always provides a good margarita, I was immediately made comfortable. And they felt familiar.
Steve wore a tee shirt that said, "Ask me about the Downing Street Memo," Rose had the cutest smile and an I'm sweet and nice if you don't cross my friends look about her, and Clayton was good to look at. (I know, I know, I'm a lesbian, but still, he had that cute sincere Linus look). In addition, they sounded great! Incredible in fact! The kind of harmonies I expect out of family groups.
Then Jake joined them, as did an electric guitar player (whose name I apparently didn't bother to note). That set was more rockin', in that folk-rock, southern-rock kind of way, Jake really is a good drummer. I became the lady in every audience that shushhes loud-talkers, and I found myself wishing I knew the adorable little girl who was dancing so I could join in. She had big brown I've had a great life so far, I'm safe and loved and well cared for eyes that I haven't been seeing on the TV lately, and it was healing to watch her laugh and dance and hug her family and friends.
In the midst of the trauma and drama in the world, dying uncles and critically ill children, friends being dumped sans warning, and a government that couldn't get it's act together to secure our damn "homeland"... this was a wonderful way to spend an evening. It was healing, fun, and great. Just political enough. Just funny enough. and really happy.
Ckeck them out, and if you live in New England, look for them. If you live somewhere else, form a production company and bring them to town.
As for me and Rebecca, I think we'll be their new Mom Groupies. (although technically, I would guess that Steve's about the same age as we are...)
Friday, September 02, 2005
friends who are sharing their adventures
a great congregation of people
a partner who loves me
popcorn and chocolate
my back is ok
the House and Property Cmte. got the vacuum fixed
the waterfall on my altar works again.
Things to be cranky about...
well, maybe you should just go to crankycindy for that.