The Copper Pomegranate

Lemonade for Life

2009-07-10T10:47:00.002-04:00

Today, my nine year old son had his seventh surgery. Seven surgeries seems like a lot to squeeze into nine years…but they feel like even more when I stop to consider the fact that they all happened over the span of just twelve months. Last year, on June 26th, my son (nicknamed “Little Pom” after his mothers affinity for all things Pomegranate) was admitted to Childrens Hospital of Michigan and diagnosed as being in End-Stage Renal Failure. At the time of his admission, he had 10% kidney function; and was totally asymptomatic. Thus began our journey into the world of providing constant care for a critically ill child, a “kidney kid.” We learned how to perform dialysis nightly at home. We learned how to care for a catheter- first through a foley catheter, then a supra-pubic catheter. Eventually our family graduated to the miraculous Mitrofinoff, which allows him to feed a catheter tube into an opening created in his belly button to drain his bladder…a process which he will have to do 4-8 times a day for the rest of his life. We learned how to give painful injections once a week- just one of the 20+ medication doses we would dispense each day. We learned what to feed him and what could kill him. We learned that he desperately needed a kidney transplant.

Over the past 12 months, I have held by child as he cried himself to sleep, despairing over the painful medical procedures, the mockery of his catheter by classmates, the diet and activity restrictions. I cannot count the number of times I have heard my only child whisper to me “I wish I’d never been born.” Throughout this period, my husband and I have comforted him with the reassurance that Daddy was going through the process of being approved to be a living organ donor. Getting a new kidney became my little boy’s panacea- the hope of which gave him comforting knowledge of a world without so many restrictions, mean comments, painful days. We rejoiced together when it was determined that my husband was a tissue match for Little Pom. This brought us so very close to the hoped-for day when dialysis would end and something resembling a normal life would once again be possible. On Monday of last week, we found out that the transplant team would most likely not allow my husband to move forward as the donor. His blood pressure was a bit high and they wanted someone who had a stable b.p…not a “controlled” one. That was the first blow, although he's waiting for the doctors to tell him if they'll allow him to be re-tested at a later date. On Tuesday of last week, I lost my job. This week, Little Pom had surgery number seven, moving him one step closer to being ready to receive a donor organ he so desperately needs.

Not everything in our life is tragedy however. Make-A-Wish is sending Little Pom and our family on his dream trip at the end of this month- a week on the Nickelodeon Cruise ship. Next week, he’ll get to go to sleep away camp for the first time, at a site run by the National Kidney Foundation and staffed by his very own doctors and nurses. My little guy has been so touched by the outpouring of love and support these two organizations have shown him that he came up with the idea of doing a lemonade stand to raise money for the NKF, so that they can fund research that might one day provide a cure for the condition that caused the damage to his kidneys and to raise awareness of the need for organ donors, by offering his customers the chance to sign a donor card right there and then. I am so proud of his willingness to engage in his little act of Tikkun Olam, reaching out to the community through his lemonade stand and taking a proactive step to support his own eventual cure. Even in the midst of fear and stress, pain and poverty, our family is richly blessed.

We have been taught that to save one life is to save the world. Organ donation, both as a living donor (through the sharing of a kidney, blood or bone marrow) and later, when we no longer need our organs, is the greatest gift that anyone could possibly give to someone else. There are hundreds of thousands of families like mine, children like Little Pom, who desperately need a donor. Many of those critically ill family members will die before a donor organ becomes available. Please, if you have not yet taken the time to do so, register yourself as an organ donor. You can do so online at www.organdonor.gov or the next time you renew your drivers license. Be sure you speak to your family about your decision, so that they are aware of your wishes. This is especially true if you’ve signed a donor card, but never formally placed yourself on the donor registry. If you do not formalize your decision, your family has the authority to override your decision to donate if ever you were unable to communicate your wishes. Finally, please consider becoming a living donor. Giving blood is easy. Bone marrow is almost as simple; you can add yourself to the bone marrow registry and they will match you up with someone who desperately needs the gift of life. Finally, while it seems a bit overwhelming, consider becoming a living kidney donor. Everyone is carrying around the potential to save a life before the end of their own. It takes a hero to follow through on that potential.

As he continues to sell lemonade to raise money for the National Kidney Foundation, I take comfort in the knowledge that Divinity has a plan for our lives and that no child suffers in vain. Perhaps, his little bit of activism will become the start of something great, something that results in a cure for Little Pom and children like him. They tell us today that once someone is diagnosed as being in End-Stage Renal Failure, they are always considered to be such, even after transplant. This is why Little Pom will never be able to fulfill his dream of following his Iraq Veteran Daddy’s footsteps and serving in the military. Thankfully, I'm really, really grateful that I will never have to send him to fight some far off war, they way I have sent his Daddy time & time again. However, I am absolutely confident that the life he leads now is also NOT his future. I believe that we will find a cure for Hinman's Syndrome in our lifetime. I believe that there will come a day when medicines, injections, catheters and worry are NOT a part of his daily life. That future starts with research. And research starts with people being willing to support the NKF. Thanks for taking the time to read this. If you’d like to learn more about Little Pom, his medical condition, or how to be an organ donor, feel free to visit our website www.kidneykid.com.

Little Pom's Cool New Trick

2009-05-23T19:34:00.003-04:00

Yes, it's true, I've been gone for TWO months...but when you see what we've been up to, you'll understand. LP finally had the Mitrofinoff catheter that I first wrote about here last summer put in a few weeks ago. His recovery was slow and hard- the surgery itself took over 9 hours- but he's so very happy with the result. While it looks scary (mostly because it's not entirely healed up yet) he compares it to putting in or taking out an earring and vastly prefers it to the old foley (up his penis) or suprapubic (through the abdominal wall) catheters. I've posted a slideshow below that show's the stoma they created in his belly button and a step-by-step photo diary of LP demonstrating how it works. It might not be for the faint of heart, so be warned. But for those who've followed his progress over the years, this is an important milestone and I encourage you to follow this link:

http://www.slide.com/r/wComklw_lz-UDex9XG0RVUdidzEt6HIX?previous_view=mscd_embedded_url&view=original

On another bright note: we should know by the end of this week if Daddy is a viable living kidney donor! YAY!!

Another Amazing Organ Story

2009-03-10T22:34:00.000-04:00

Health News Girl ‘Fantastic’ After 6 Organs
Removed

(March 10) — Heather McNamara, 7, will
be discharged from a New York hospital
today after a daring, high-risk operation
last month in which doctors removed six
vital organs so they could take out a
baseball-sized tumor that had invaded her
abdomen and threatened her life.

The marathon Feb. 6 operation lasted 23
hours. It was the first of its kind in a child
and the second in the world, said the lead
surgeon, Tomoaki Kato. In effect, the
young cancer patient was both the donor
and recipient of her own organs.

“She’s doing fantastic,” her father, Joseph
McNamara, of Islip Terrace, Long Island,
said Monday as the two played Old Maid
in her room at New York-Presbyterian
Morgan Stanley Children’s Hospital,
noting that she spent from 10:30 a.m. to
noon in the hospital’s school for pediatric
patients.

Kato’s team removed and chilled the
child’s stomach, pancreas, spleen, liver
and small and large intestines as they
would for transplantation, so they could
be restored after the tumor was taken out.
“This was a very high-risk procedure,”
Kato said. “It was a big responsibility. I
was very nervous.”

The transplant specialist said the cancer
had spread so widely that the girl’s
stomach, pancreas and spleen couldn’t
be saved. In place of her stomach, Kato’s
team fashioned a pouch from intestinal
tissue to hold food before it moves into
the small intestine for digestion. The loss
of her pancreas turned the child into a
diabetic who will need insulin injections
and digestive enzymes. Without a spleen,
she’ll face a heightened risk of infection.
She can eat ordinary food, supplemented
for now by a pump worn in a school-style
backpack.

Kato said the surgery was so risky that
the girl’s father, 46, was prepped to be a
live organ donor in case surgeons
couldn’t salvage his daughter’s liver.
Kareem Abu-Elmagd, a University of
Pittsburgh transplant surgeon, said: “It
was a gamble. I admire Kato for having
the courage to do this.”

Kato said the gamble took a toll on him,
too.

“Afterwards, I was about to collapse,” he
said. “I slept for five or six hours on a
couch.”

Last year, at the University of Miami, Kato
carried out the first such operation, on a
62-year-old South Florida woman, whom
he said is doing well.

For her part, Heather said she’s feeling
fine and can’t wait to get home. She’s
missing her sister, Stephanie, 10, and a
Pomeranian named Angel.

“I love to play with my dog,” she said.

Dear President O,

2009-03-10T09:28:00.002-04:00

First of all, I want to say that I think generally speaking you're doing a really good job. THANK YOU so much for lifting the restrictions on stem cell research. This technology has the potential to change my son's life and your willingness to rile up the pro-life movement (although, they are generally anti-my son's life) is commendable. Thanks to your courage, maybe someday my little guy won't have to pee through a hole in his abdomen. I also think it's wonderful that you've lifted the global gag rule. Not only have you taken a stand in favor of curing my son's illness; you've stood firmly in favor of women's lives and that is not (sadly) an easy choice in these polarized times.

That said...

Speaking of women's lives: I've heard you want to negotiate with the "moderate Taliban leaders." WTF!?!? WHO, pray tell, are the moderate Taliban? The ones who only beat women for wearing shoes that make noise, rather than killing them outright? I like you a lot. But this CANNOT happen. To negotiate with the Taliban would be a betrayal of everything you stand for: for democracy, anti-terrorism, female equality, all of it. The Taliban are not and never have been "moderate." Please, don't lend them credibility by giving them a seat at the table.

I voted for change and to a large degree you've delivered. Don't take away from women in Afghanistan what you're giving back to women here. If you are a Feminist president (which you have said you are) then you need to advocate for the rights of ALL women. That means continuing to stand up against oppression and misogyny wherever it is found...whether it's the board room of National Right to Life or the streets of Kabul.

As Abigail Adams said to her husband John: "Please, remember the ladies."

How Cool is This?!?!?!

2009-02-19T20:39:00.001-05:00

Health News 12 Patients Swap Kidneys at 3 Hospitals

(Feb. 19) - Doctors at three hospitals announced they have successfully completed the first six-way, 12-patient kidney transplant involving multiple centers — a feat that could dramatically increase the number of kidney transplants done each year.

“We have performed a six-way domino procedure at our hospital before. But this is the first time we have done something this ambitious on such a grand scale involving two other hospitals,” said Dr. Robert Montgomery, chief transplant surgeon at The Johns Hopkins Hospital in Baltimore.

“This will serve as a blueprint for national match in which kidneys will be transported around the country resulting in an estimated 1,500 additional transplants each year,” he said.

The Feb. 14 procedure involved six donors, six organ recipients, and surgical teams at John Hopkins, Barnes-Jewish Hospital in St. Louis and Integris Baptist Medical Center in Oklahoma City. In all, nearly 100 medical professionals took part.

The procedure, known as kidney-paired donation or “domino swap,” takes a group of incompatible donor-recipient pairs and matches them with other pairs in need of a kidney that will match. By exchanging kidneys among the pairs, each recipient gets a suitable kidney.

All six donors, one man and five women, and six organ recipients, four men and two women, were in good condition, doctors said. As part of the complicated trade-off, Johns Hopkins flew one kidney to Integris Baptist, Integris Baptist flew one kidney to Barnes-Jewish and Barnes-Jewish flew one kidney to Johns Hopkins.

(Source: http://news.aol.com/health/article/kidney-domino-swap/351857)

Stress & Worry in Southeast Michigan

2009-02-17T18:37:00.002-05:00

So, today was clinic. Don't panic- apparently all's quiet on the kidney front. But, Daddy asked the Nephrologist for a referal for a 2nd opinion before we do the Mitrofanoff catheter in April. Neprho said that he'll schedual a meeting with him, the Urologist and our family so that we can feel comfortable before we move forward. He also said that he didn't think that the Mitro would interfere with Little Pom's dialysis. I am terrified. This is a HUGE decision and LP has to be ready to catheterize himself consistantly every two hours or else there could be complications. LP is not a fan of doing ANYTHING every two hours. So, basically, I'm dealing with:

- Fear of permanantly altering my childs anatomy.
- Fear that once we do, we/he won't be able to be as rigorous as we need to be.
- Fear that once we do, LP will still end up on hemo somehow.
- Fear of the unknown.
- Fear...in general, you know?

But the simple fact is: no mitro, no transplant.

I feel backed into a corner, undereducated, underprepared, unsupported. And I don't know what to do about any of these feelings. My research has turned up very little. Our urology team doesn't have time for us and tends to be rather brusque with us when they do. And there is no "kids with caths" support group, or play group, or e-list or anything.

I think I would feel sooooo much better if only we could meet another family with a kid LP's age who has a mitro and is thriving.

I think I'd feel better if I knew that this wouldn't have to be a forever kinda thing.

In the meantime, we have to buy two of these for Little Pom:
http://www.epill.com/pediatric.html

10-Second Pity Party Coming Up:

It's HARD being a parent!

Little Pom Progress Report

2009-02-08T20:04:00.003-05:00

Well, we've had a busy couple of days! On Thursday, Little Pom had urology clinic. This is also known as our quarterly 15 minutes with the urologist. We got some news that last fall would've made me very happy- they want to move forward with his Mitrofanoff. Three months of bladder training using the supra-pubic and there's been no progress, so, we move onward. Honestly, I was really shocked at how hard this hit me. After all, in November I'd been angry that they were making us wait before we did it. I felt as if they were unnecessarily delaying LP's progress towards transplant eligibilty. Now, after three months of hoping that maybe this whole procedure could be avoided, it was back...and I was shocked. I guess I hadn't realized just how hopeful I'd been until they yanked the rug out from under me.

To be fair, this is a good thing (I guess). After all, by mitigating Hinmans Syndrome, we move forward towards a kidney transplant. But, as I've discussed before, the Mitrofanoff is a really *big* surgery. Not in terms of the actual surgery- the urologist wants to do it using the super-duper-bestest-most-technologically-advanced lathroscopic robot available. Which is pretty cool. But still....we're re-arranging organs here! We're doing something that will result in my baby peeing through his belly button for the rest of his life. This is B.I.G. big. We do not enter into this lightly. This is one of those times when the full weight of parenthood settles on your shoulders and you wish there was someone bigger, more qualified, more competent than you are to make the hard decisions for you. But there's not.

One of our biggest concerns is the fact that once they do the Mitro, there's a chance it could interfere with Little Pom's PD (peritoneal dialysis) and he could end up on hemodialysis. This is bad. Not only is it harder on his body (involving multiple needle pokes and faster, less frequent cleaning) but it would pull him out of school for 4 hours, 3 days a week. I'd basically have to quit my job and manage his care full time. He would have to receive homebound services...something I've been trying to get for him (to no avail) for months now. Everything would be harder, scarier and more trying than they already are. I don't want that. And, if for some reason Daddy doesn't work out as a donor, this would become the status quo for months, if not years.

So, we're going to ask if it's possible to put off getting the Mitro until we've got a confirmed tissue match. He's doing well on the PD and we don't feel a need to rush into anything. It's just a matter of whether or not the transplant coordinator and his care team (Nephrology and Urology) will let us delay it. It's quite possible that the transplant people won't more forward until he has the Mitro in place. In which case, it becomes a crap shoot- get the mitro and hope to goodness that it doesn't interefere with the PD.

Needless to say, this has been a tiny bit stressful for us. We ended up needing to go to the super-duper-ultra-cool-robot hospital for pre-surgical stuff on Friday. That was good, because it meant that I had to take a day off of work and frankly, I was such a scared, stressed zombie (such a pretty picture, huh?) that I would've been useless anyway. Ugh.

So, comment time: what would YOU do if you were in our situation? I really need some feedback. I've found some e-lists and support groups for parents of kids with kidney disease, but I'm just so overwhelmed.

In order to encourage your feedback, I will pre-reward you with pics of Little Pom:

Here he is after taking 3rd place in his first ever Cub Scouts Pinewood Derby:

And here he is showing that even after a 0-16 season, he'll always been the Lions #1 fan:

Apparently All My Absences Are Long Ones...

2009-01-26T08:29:00.002-05:00

I've been crazy busy. Too busy to think. And certainly too busy to write. But I wanted to let everyone know that we are still alive and kicking. Between Daddy's school, DQ's dance, LP's medical appointments and my own ever-expanding job commitments, I hit the ground running at 6:30 AM and don't stop until well after midnight anymore. I'm exhausted and overcommitted- although admittedly most of these commitments aren't mine- but life is good and I am generally pretty happy. :-)

This weekend the family went to Friday night Shabbat service, as we've taken to doing for the past few weeks. We've found a lovely, welcoming synagogue (templebe.org) and a Rabbinical Associate who's willing to work with the Dancing Queen around Little Pom's dialysis schedule. Service *always* starts at 7:30, so this past Friday, we left with plenty of time to eat dinner beforehand. We ate at a Baja Fresh just across the street from the temple and we ate well: chips and salsa, fajitas, mexican rice and beans (well, not for me or LP). We were STUFFED by the time 7:30 rolled around. Well, we booked it across the street and parked. When we got to the synagogue doors, we saw the sign: "Candlelight Service 6:00 in Chapel"

We'd missed it. Missed it by a mile! However, there were about 5-6 people coming out the doors who were extraordinarily friendly and so very sorry to hear that we'd come for service. One of them (who later turned out to be the President of the Congregation) said "but you're in luck! You're just in time for Shabbat dinner! Stay here- I'll go pay for you." O.M.G. We were soooooo full. But he took off before we could stop him and that's how we found ourselves eating two dinners in a row on Friday night.

The food was amazing. It's too bad that I was already so stuffed I could barely eat. But we all picked at enough of the lovely meal to allow our table-mates to feel confident that we were sharing in their bounty. We did not have to force ourselves to partake in their company though. They were active conversationalists and very, very friendly. I feel blessed that we missed service because it allowed us the opportunity to meet people we might not have at a post-service mingle.

We left very full...in a number of ways.

Reporting In After a Long Absence

2009-01-12T08:25:00.002-05:00

Sorry it's been awhile since the last post. We haven't had our Comcast service transferred to the new house yet, so my internet access has been limited. This is the first time I've tried to post a blog from my cell phone. Thank goodness for Palms and the ability to cut and paste, eh? So, here's the latest:

Good news: We're IN! Admittedly, we're in on a short-term lease until we're able to build the deck over the porch...but we're in the new house and loving it. It's roughly the same size as our apartment, but you'd never know it, because we all have our own space...and there's a basement, so we're not climbing over mounds of dialysis supplies in the middle of the living room anymore. LP has been sleeping in his own room every single night since he moved. For eight and a half years (nine, if you count pregnancy, LOL) he's been near me every night...if not co-sleeping, then at least within arms reach. Not anymore. I'm proud of him and of course, it had to happen, LOL...but a part of me misses him at night. :-)

More good news: Some transitions at work have resulted in a new job title for me. I'm not Macomb County Habitat for Humanity's Marketing and Public Relations Manager. Fancy-schmancy, huh? This too is bittersweet in some ways, since it relates back to that "crappy day at work" post from a while ago. But I'm holding in there and keeping a brave face and high (well, as high as I can fake) spirits.

Bittersweet news: Little Pom was medically cleared to be a part of the Make a Wish program. He's very, very excited and we are too. Admittedly, it SUCKS that he qualifies, LOL, but if you have to go through everything my kidlet has gone through, it's at least nice to get some small favors out of the deal, right? Being his fathers child, his #1 wish was to go on a ghost hunt with Jay and Grant from TAPS on tv!

He has to give them a selection of wishes though, so his back up's are: going to California to meet Tony Hawk, the skateboarder or a trip to either the Nickelodeon Hotel or the Nick Cruise ship. We'll see what they can arrange. We should be hearing from his (brace yourself for the coolest job title ever) "Volunteer Wish Coordinator" in 6-8 weeks for the formal Wishing Ceremony. I'll keep you updated.

And finally, the not-so-hot news:

An update on the "redacted" post that most of you read before I took it down. Daddy had his meeting with the C.O. yesterday and was reduced in rank back to Staff Sargeant. While he thought he'd prepared himself for this, since it was the most likely outcome, we had heard rumors of some leniency...like a suspension of the decision for a year after which it would go away sorta thing...that didn't actually happen. :-( He's built his whole life around the military and so, this hit him really hard. It'll be two years before he is eligible to make Tech again. From what we heard, it would've been worse (the C.O. considered taking 2 stripes) but advocacy from his direct supervisers on his behalf resulted in just one bump instead of two. Still, it SUCKS and while my husband is honorable to the point of stupidity sometimes, I still don't think it was right or fair. But it is what it is and we'll get through it.

Before:

After:

If this whole "Palm posting" thing works, I'll try to keep y'all better updated until we get our service transferred to the house. That's all for now though.

OMG, We're Moving!!!

2008-12-31T12:22:00.003-05:00

As of this evening, the carpet will be in the upper dormer/master bedroom of the new house, the lease will be signed, the deposit dropped off, and the moving can commence! Which is really good, since technically we have to be out of our apartment today, LOL. But given the New Years weekend, I'm feeling fairly safe in taking the next few days to move. Of course, it doesn't help any that we spent the night at the ER with Little Pom. He's developed a urinary/bladder infection which is pretty painful. Plus, for some reason, his catheter isn't draining at *all* but all of a sudden he's urinating the conventional way and often! The often part is most likely due to his UTI, but the conventional way part is just plain ole surprising. The ER team flushed his catheter twice, and ultrasounded his bladder to make sure he wasn't retaining fluid. So, all of this adds up to a big "hmmmm....." Not sure what it means yet. Everything checked out, and yet he continues to penis-pee and his catheter stays nearly dry. Is it silly to hope that this could be a sign of miraculous recovery? :-) Eh, after the year we've had, I'm not going to be that hopeful this soon. But still, it gives one pause.

So anyway, after our trip to the ER, the move schedule is a bit messed up- we have NOTHING packed at ALL, since we were not sure exactly when we'd be able to move. So now, the big day is upon us; we have 3 solid days (we lose Friday because of the ER last night...had to change our days off) to move a household. I think we're basically going to approach it as if we were just going to switch around rooms in the apartment: take everything out of DQ's closet, drive to Eastpointe, put it in her closet there....and repeat, LOL.

So, busy weekend ahead, but also some intriquing possibilities for 2009. If I don't post anything between now and then, I absolutely have to say:

GOOD RIDDANCE TO 2008

and

A blessed, peaceful and healthy New Year to you all. HAPPY 2009!!!

More Renovations

2008-12-27T19:17:00.001-05:00

Long Time, No Post...with Pictures

2008-12-26T18:10:00.002-05:00

I just realized it's been about 2 weeks since last I posted. Things have been crazy busy. I've been drafting several documents for work- in addition to coordinating a number of media and event opportunities- that have kept me super busy. That, coupled with our work on the house and LP's daily care...not to mention the holidays...have kept me from having much free time. So, here's a quick update.

When people talk about what holidays they do, I usually say that we start at Chanukkah and work our way through towards New Years. So, this year, The Dancing Queen lit her funky hanukkiah and we lit my amazing modern-art version that I got from www.moderntribe.com. I would post a pic, but they no longer have it at their website and mine didn't turn out well. I'll try again later and edit the post if I can get a good one.

On Christmas Eve we went to the Castle (don't ask...ugh!) and then to service at our UU church. The Interim Minister did an absolutely lovely service, although I must say I was a little shocked when I opened the order of service and saw FOUR homilies on the agenda, LOL. They were each about 3 minutes long though, so it all worked out well. Then, we came home and crashed.

Christmas Day, we opened presents:

For those who may be wondering why *I* am not in any of the pictures, it's because I was too busy taking them with my new hot-pink digital camera!!!

The big reveal came when LP got to open his BIG gift....so big, it had to be wrapped with an entire room, rather than some pretty paper:

When he opened the door (we even let him use the key!) he saw that Santa (AKA Grammy, Poppa and Great-Nana) had delivered his biggest wish....a Power Wheels!!!

He was jumping up and down and shouting "Oh Yeah! Oh Yeah! I got a Cavalier!!" ROFL It took us awhile to explain to him that a red Mustang convertable was WAY, WAY cooler than any Cavalier. :-)

Of course, it says a lot about my kid that (other than the hot rod) his favorite present was a sock monkey:

My other favorite holiday moment came when DQ opened her stocking. She is NEVER without a lip balm or three...so she thought it was awfully funny that "Santa" put TWENTY different kinds in her sock- all flavors and brands!

And finally, my biggest joy of the season: my kitchen is DONE!! And it's beautiful!!

We hung the border today. It matches the border in the bathroom and the wallpaper we plan on hanging in the hall once all the furniture is in place. I'm just over the moon...I think it looks like something straight out of a magazine. :-)

I'm exhausted but blissed. More later, but until then: Happy Christmakwanzahannuhyule.

Counting Blessings

2008-12-16T21:30:00.003-05:00

Today, I received some work-related news that totally blindsided me. It is what it is, but it was hard to get through the day today and keep a smile on my face. I spent my day feeling really sad, confused and hurt. So, I've decided, in keeping with my usually-optimistic self, to try and think of all the reasons why I *love* my job. We'll see if that helps.

1) I get to do tasks that I truly enjoy.

2) I have generally awesome co-workers...and those that don't quite count as "awesome" at least qualify as "amusing."

3) Our mission is something I wholeheartedly support.

4) I get along well with darn-near everyone I work with.

5) I get to participate in making a tangible difference in the world every day.

6) I take enormous pride in what I do.

7) Our Board of Directors is truly an inspiring group of people. I learn so much from them and am grateful for the chance to know them.

8) 95% of my workday is spent doing projects that I'm good at, that I enjoy and that show off my best talents and attributes.

9) I have a high level of independance

10) I have an employer that is genuinely concerned about LP and allows me flexibility

11) 95% of the time, I feel truly supported by my employer.

12) In many ways, this is my dream job.

......well, in some ways that helped, but in other (fairly significant ways) it didn't.

Times heals all wounds, right?

I'm off to bed.

House Remodel Update

2008-12-14T19:37:00.001-05:00

The Good News

2008-12-09T10:39:00.002-05:00

Since I promised both good news and bad news last night, then left you hanging on the bad, here's the counterpoint to the terrible-ness of our weekend:

Two Sundays ago, at the UU church, Daddy and I were talking to a friend of ours about all the stuff we still have to get done in order to finish up our house and move in. The church secretary heard me and asked what we still had to do. I told her that the list was W-A-Y too long for me to try and remember by rote, but that I would email it to her so that she could see. Well, she put the whole thing into the church newsletter!

A few days later, we got a call from someone I'll call Miracle. Y'all know I'm not big on using real names online, so bear with on the cheese-factor...it's the perfect alias for this guy.

Miracle is a licensed plumber who's grandfather helped found this particular UU congregation. Even though the family is not connected anymore, his mom down South saw the newsletter and called him. He called us and, lo and behold, a miracle occured!!

Miracle has coordinated him plumbing company, an electrical company, a floor-finisher-guy and a carpenter to come in and finish everything up on our house so that we can move in without stress. Everything.

I don't have words to tell you what a huge, well, miracle this is for us. They are starting to work right away and the goal is to have us in by the end of the month.

So, while there has been lots of crappy news in the past week, there's also been a lot of good too.

(Did I cheer everyone up again? I don't want you to be sad on our account!)

It Was the Best of Times, It Was the Worst of Times

2008-12-08T21:38:00.003-05:00

The bad news post has been "redacted", on the advice of other military-type folks who are concerned that no matter how general my descriptives, it still might not be wise to post. If you missed it, and want to know the scoop, comment here and I'll drop you a line.

A Bigger Life

2008-12-03T09:32:00.002-05:00

Last night, Little Pom said something that broke his parents hearts. We were driving him home so that he could go on dialysis and he asked us if we could go bowling. We told him no, we couldn't, because there wasn't enough time before he had to get plugged in. LP burst into tears and said "I hate this! All that I can do is TV and dialysis. I deserve a bigger life than that!"

WOW.

A Bigger Life.

Honestly though, that's NOT too much to ask. My little guy went from school, dance, karate and sports down to...school and dialysis. Or maybe, in a busy week, clinic too. Oh yay. Little Pom is absolutely right- is DOES deserve a bigger life. I'm just not sure how to do that for him.

So, here's where I need feedback: what can I do to expand his world a little bit as we manuver our way through the Land of Kidney Failure? We have 2 hours between when I get home and when he needs to get plugged in for the night. Nearly all sports are out for now, because of his catheter bag. Play dates have been non-existant, because the kids in his class tease him and ostracize him now. (I know....that's a whole other rant) He spends ALL his free time at home. His world has grown very small and that's not okay.

So....ideas everyone?

Clinic Day

2008-11-20T20:12:00.002-05:00

Today was our monthly clinic day. Not much has changed...Little Pom is super-happy because the dietician explained that he's only restricted from colas, not from all brown soda. Which means he can have his beloved Mr. Pibb again. :-) His weight is holding steady, which is so-so news, because he's not losing any...but he's also not gaining; which we really want him to do. So he gets more good news from the Dietician: he can have LOTS of steak and hamburger and even bacon...one slice a day, LOL.

On the "eh" side of things, one of the new residents mentioned that he had a heart murmur today. This is the first we've heard of this and even when the "big" doc came in, he didn't feel a need to mention it to us. She said it's most likely benign and that they can come and go...but still, I think it's an important fact to know, don't you?

That's all the news from today. Daddy gets home tomorrow and I can't wait. The Dancing Queen left to go visit the other half of her family today, so LP and I had some alone time today. Now, when Daddy gets home, I'm going to get some totally alone time. :-) I'm thinking I need to get a pre-winter facial and manicure. We'll see.

Oh Where Have All the Comments Gone?

2008-11-19T20:49:00.002-05:00

Okay, seriously...

LEAVE ME COMMENTS!

At the bottom of each post you'll find the phrase "karmic truths" with a number in front of it. Recently, that number has been zero. A LOT of zeros.

Click on karmic truths and post your thoughts, comments, suggestions, whatever.

You can also click on one of the emotion/response check-boxes below each post to register your feelings on the subject, LOL.

Am I talking to a brick wall? I sure hope not. That's a fairly boring way to spend an evening.

Love ya all!

My Mother Kinda Rocks

2008-11-19T20:40:00.002-05:00

She not only procured a new fridge for our soon-to-be-finished house, but she managed to get a HUGE big box store to essentially give us my dream fridge: a french door, freezer drawer on the bottom, beauty. I'm in love. Of course, the real fun started when my father- and brother- in- law tried to deliver it for me. Have I mentioned that we're rehabing a rather old home? With very narrow doors? Yeah....when I left to put LP on dialysis, they'd taken the doors off the fridge and were working on taking the doors off the house, LOL. It'll be beautiful...even if it *is* kept on my front porch from now on! (Just kidding, mother!!)

Pics of the house updates will come tomorrow, but for now, take a look at my fridge:

http://www.lowes.com/lowes/lkn?action=productDetail&productId=45982-46-GX5SHTXVB&lpage=none

At the late night, double feature, picture show

2008-11-16T19:48:00.004-05:00

Last night, Daddy and I did something that I haven't done since I was 17 years old:

Rocky Horror Picture Show, LIVE.

Talk about a blast from the past!

When we arrived, I was startled to see how young the cast members looked. Seriously, Dr. Frank was about my age, and Columbia looked to be approximately twelve. Then I realized that they were all most likely in the same age-range I was when last I did the Time Warp at Midnight. I was the one who'd gotten old.

Once I came to grips with the fact that time waits for no one...not even those who don party hats and throw slices of toast in a crowded theater...I went into RHPS Snob mode. When the cast went around identifying Rocky "virgins" (first-time attendees) I was quick to point out that not only was I NOT a virgin, I was from the home of the longest-running live Rocky show in the country. That's right, ladies and gentleman, I've done Rocky at the Oriental!

Daddy *was* a virgin, however...and was quickly marked as such with a giant lipstick V on his forehead- a signal to the cast that he was to be tortured later on. Highly amusing for me, by the way.

Overall, the night was great fun-- and the first night out alone that Daddy and I have had since Little Pom was first diagnosed. He was de-virginized in ways both amusing (for me) and mortifying (for him). The cast was not quite up to Oriental Theater standards, but then, I was raised on one of the BEST RHPS casts short of Richard O'Brien and Tim Curry. My standards are thus insanely high..so, I'll forgive them their horrendous Bohemian Rhapsody lip-sync opening act, and instead compliment them on being brave enough to put on their act every single month in Jackson, Michigan of all places.

This isn't a "news" post. Nor is it a post about LP. I just wanted to tell y'all that we had fun last night and felt like kids again for a couple of hours. Because nothing makes you feel young like shooting people with squirt guns in a darkened cinema.

Time to Process

2008-11-07T08:01:00.004-05:00

Okay, I've dried my tears and have had some time to process the whole idea of a President Obama. I have to say, I was scared to hope. I was truly scared that this would be like every other election I've ever voted in; where the scarier of the two candidates won. This was the first time I've been able to vote for someone I truly, passionately believed in....as opposed to the candidate that I thought would "f" up the country less. And after the past 8 years, I'd pretty much given up on the idea of hope. I've marched with hundreds of thousands- enough to literally fill up Washington D.C.- only to have it called a "focus group", assuming it wasn't ignored completely. I've watched the Commander in Chief say that my religion isn't one. I've sobbed at the funerals of family members who died because when they couldn't find work anywhere else, they enlisted. I've sobbed again in the halls of Congress when elected officials (cough...JOHN McCAIN...cough) tell me that he's willing to "take a chance" with my husbands life, as long as there might be potential for resolution in Iraq and that obviously Rob's cousin died because he was simply too lazy or too stupid to look for a civilian job before joining the Army. The idea of compassion, of dialogue, of hope, has not been a part of my reality for the past eight years. Now it is. Barak Obama wasn't the candidate I supported because he was the Democrat. He was my pick in the primaries (well, he would've been if our state government hadn't acted in such hubris as to cost us our electoral voice) from the minute he announced. And then, he got the nomination! And now, he's WON! Honestly....I didn't believe it could happen. And I am so incredibly hopeful and grateful and blessed. And while I know that much of my family is die-hard conservative and is undoubtedly taking this very hard; I'll remind everyone that the Bible says that our leaders are chosen by powers higher than just our little votes and ask them to be glad- glad that Little Pom has a chance to perhaps access amazingly life-changing medical care, if nothing else. There's a song by the duo "Emma's Revolution" that kinda sums up how I'm feeling right now. Here are the lyrics. And here's to hope for the future!

bound for freedom

Moving Forward Music, BMI

www.emmasrevolution.com

In Montgomery and in Selma and the streets of Birmingham

The people sent a message to the leaders of the land.

We have fought and we have suffered but we know the wrong from right.

We are family, we are neighbors, we are black and we are white.

Here I go bound for freedom, may my truth take the lead

Not the preacher, not the congress, not the millionaire but me

I will organize for justice. I will raise my voice in song.

And our children will be free to lead the world and carry on.

Here I go though I'm standing on my own,

I remember those before me and I know I'm not alone.

I will organize for justice. I will raise my voice in song,

And our children will be free to lead the world and carry on.

From the streets of New York City 'cross the ocean and beyond

People from all nations create a common bond.

With our conscience as our weapon, we are witness to the fall.We are simple, we are brilliant, We are one and we are all.

Hope Wins.

2008-11-04T23:47:00.002-05:00

And peace prevails.

Hope and Nausea

2008-11-03T17:49:00.003-05:00

I can't wait until tomorrow. And I can't wait until tomorrow is over. Words cannot describe how emotionally invested I am in this election. As a military wife, and as the mother of a severely ill child, there is so much riding on the outcome of tomorrows election for me. Will be husband spend the rest of his career in and out of Iraq, until eventually he either retires or is killed in action? Will my son have access to life saving therapies, or will some new administrations armchair scientist with a hardline theological bent decree that my childs life isn't as important as that of a few cells in a tube? Will my stepdaughter (and myself, frankly!) have the comfort of knowing that if (heaven forbid) we were ever sexually assaulted; that we would be able to access emergency contraception without interference from the person behind the pharmacy counter?

For many, many voters this year, these are abstract concepts that they hear debated on Fox or NPR and then forget about. But for me, this election is, for my family, quite literally a matter of life and death.

I take it VERY personally when someone who claims they care for us votes to continue this futile war, which has already robbed my family of one member. Or votes against the research that could make Little Poms life longer, easier and healthier. Or who laughs along with McCain at the idea of "the health of the mother." I'M that mother. And LP is my son. And my husband is the one putting on that uniform every day.

I HATE this! I am so hopefully that tomorrow everything will, for the first time in most of my adult life, start to be okay again. I am so optimistic that there might truly be a light at the end of the Bush-era tunnel.

But I'm petrified that it might not.

I will spend my election night home alone, because my husband will be on deployment...again. I am filled with hope and nausea. And I just want to know that everythings going to be okay.

So tomorrow, before you vote, think of me. And my child. And my husband.

And vote for change.

And vote for hope.

Some Thoughts Before We Vote...

2008-11-01T19:58:00.006-04:00

It may shock you to see that this is NOT about the Presidential-portion of our ballots on Tuesday. It's about Prop 2: the Stem Cell Research intiative. For those of you who aren't in Michigan, you might have something similar on your ballots...and if you don't, you probably will someday. I've always been fairly apathetic on this issue. I've heard opinions on both sides of the equation and have always fallen squarely in the "this one doesn't affect me" camp. I know! How unlike me to *not* have a political opinion, whether it directly relates to me or not, right? Well guess what? It does.

I read this weekend about Dr. Anthony Atala, who used to be the Chief of Pediatric Urology here at our own Childrens Hospital of Michigan. Now, he's in North Carolina at Wake Forrest, working on actually GROWING bladder tissue and even whole bladders. Keep in mind that Little Pom's kidney disease was actually caused by an incurable bladder condition and the fact that this man is literally cultivating bladders is amazing. It gives me a sense of hope for my sons future that I haven't really felt in a l-o-n-g time. Maybe someday, Dr. Atala's research will progress to a point where LP can receive a bladder transplant, made of tissue that doesn't contract and stay put the way his current bladder has. Maybe, someday, my little boy WON'T face a lifetime of catheterization. It's possible: Atala has already performed one successful whole bladder transplant, in addition to several lab-grown tissue transplants in children who were born with abnormally small bladders. And yes, in case you haven't guessed it yet, all of these amazing Little Pom-Life-Saving medical advances are the direct result of stem cell research and experimentation.

So there we have it: Stem Cell Therapies have the potential to give Little Pom a normal adulthood, free of invasive, uncomfortable and embarrasing medical procedures. This isn't hypothetical- it's already being done. But maybe some of you think that being able to avoid a lifetime of urinating out of ones belly-button isn't a cause "just" enough to warrant the sacrifice of those clusters of unwanted, already-trashed cells, that would have been destroyed by the in vitro lab anyway if their donors hadn't seen fit to give them for medical research. Maybe, just maybe, an easier "lifestyle" doesn't cut it for you. Then consider this: Dr. Atala is also working on growing whole KIDNEYS. The Pomegranate Clan has gotten used to living with uncertainty. We have no way of knowing for sure if Daddy will turn out to be a suitable donor. We have no way of knowing if LP will reject a donor organ. We have no way of knowing if LP's kidney function will hold steady long enough to get him to the point of transplant. Nothing in this world is certain for us right now. Except for this: Stem Cell Research now has the potential to quite literally save my childs life. Maybe not today. But soon.

Unless people cast their votes to say that this:

Is more precious, worthy and deserving of one more day on our planet than this:

For all peoples talk about the ethics and morals of stem cell research. I have to believe that at the end of the day, Little Pom's future is slightly more valuable than that of 14 (previously frozen and incinerator-doomed) cells. So please....I'm asking (well, begging) you as a Momma: vote YES on Michigan Prop 2. And if you're not in Michigan, the next time the subject of Stem Cell Research and Therapy comes up....remember this face:

Randomness

2008-10-28T21:04:00.004-04:00

A Meme

Stolen L, who stole it from from Irisi, who stole it from blue_sky_48220.
Sarah Palin married her high school boyfriend, Todd Palin, on August 29, 1988. The Palin family lives in Wasilla, about 45 miles (72 km) north of Anchorage. The Palins have two sons (Track, 19, and Trig, four months) and three daughters (Bristol, 17; Willow, 14; and Piper, 7) [ages as of August 2008].

Todd Palin has said Track's name came from the interest Sarah's parents had in the sport and the fact that he was born in the sport's season; Bristol was named after Bristol Bay in Alaska, where Todd grew up and where he does commercial fishing; Willow was named after Willow, Alaska; Piper got her name because it is uncommon and "a cool name"; Trig's name is Norse for "strength".

1) Your first-born will be named after your parents favorite sport.

2) Your second-born will be named after a nearby area that you're not from but you like the sound of part of the name, and maybe you have nostalgic memories of said place.

3) Your third-born will be named after another nearby place, for no reason other than you already have two children and don't have time to put much thought into another name.

4) Your fourth gets a "cool" name.

5) Your fifth gets something mythological, possibly straight out of Lord of the Rings.

WHICH MAKES MY KIDS:
Football, Ann (Arbor), Fern (dale), Zeke, Morgaine

Little Poms New Trick

2008-10-27T20:45:00.002-04:00

Little Pom has been through a LOT this summer. Even after all his surgeries, catheterizations, and everything else he's STILL insanely flexible! Check out his newest trick:

He desperately wants to see the circus when it gets to town. I'm scared to take him....afraid he'd end up running away with the acrobats and contortionists!

The Obama Song

2008-10-22T21:21:00.002-04:00

This is for everyone who's a fan of the original web classic, the Llama Song. Shout out to L over at http://thoughtsandothersmartaleckremarks.blogspot.com for finding it. :-)

The Ongoing Saga of the Pomegranate Clan

2008-10-22T20:45:00.002-04:00

So, my brief foray into the distracting world of presidential politics came to an abrupt end when Little Pom ended up back in the hospital for another surgery. His catheter tube (the dialysis one, not the bladder one) ended up cracked so close to his abdomen that they could not repair it, but had to surgically remove it and put in another one. My stepdad was in town to help us roof the new house and ended up spending 9 hours at the ER with me *after* a full day working on the roof. Lemme tell you, he can sleep ANYWHERE! :-)

LP came through his surgery with flying colors and went back to school shortly thereafter. He has recovered nicely from having two surgeries in two weeks...and I have a great reason for not having posted recently! This past weekend, his dialysis tubing came disconnected in the middle of the night, which subsequently made his machine go c-r-a-z-y. I went to call the hospital to find out what to do and we had no phone service! Gee, thanks Comcast! I called the next day and ripped them apart- they sent out the next available tech and we've been fine. But Daddy did end up back in the ER with Little Pom to get antibiotics to prevent infection. So, that's more time lost from work. Have I mentioned how amazingly understanding my workplace is? They are truly unbelievable.

Our housing situation is crazy right now. Strange things are happening with our apartment- too complicated and convoluted to even get into here, which is saying somthing- and we're struggling to get all the work done on the house that we need to do so that we can move within the timeframe we're working with now. It's just a tiny bit stressful. (Please note the wild sarcasm) Anyway, I have a work conference this weekend, so it's up to Daddy, his father and the Dancing Queen to burn through as much of our task list as possible; because, you know, we kinda like having a roof over our heads...especially what with winter coming and the kidney kid and all. (bitter, sarcastic giggle)

For those who may have noticed, I was asked by Childrens Hospital to take down the .pdf version of the donor screening form from www.kidneykid.com. I pointed out that I was simply trying to save my kids life...they pointed out that the form had their logo on it. :-P I took it down, so if anyone is interested in pursuing possible living kidney donation (c'mon...you KNOW you want to!) please email me directly.

So, that's the super-short version of why I haven't posted in awhile. Now. Comment me darn it!

Vedddy Eeenteresting!

2008-10-15T21:43:00.001-04:00

John McCain and the GOP heart ACORN

Republican Presidential Candidate John McCain at an March 2006 ACORN rally

From Ben Smith at Politico:

The beleaguered Democratic-leaning community group Acorn sends over this photograph: John McCain, in March of 2006, sitting beside Florida Rep. Kendrick Meek at an event Acorn co-sponsored in Florida. The immigration event, which other photos show was packed with red-shirted Acorn member, was co-sponsored by the local Catholic Archdiocese, the SEIU, and other groups.
McCain, still spiting much of his party on immigration at the time, was the headliner. Bertha Lewis, Acorn's chief organizer, said in a statement that came with the photo, “It has deeply saddened us to see Senator McCain abandon his historic support for ACORN and our efforts to support the goals of low-income Americans.”We are sure that the extremists he is trying to get into a froth will be even more excited to learn that John McCain stood shoulder to shoulder with ACORN, at an ACORN co-sponsored event, to promote immigration reform," she said.
(ACORN: McCain and Gop used to be supporters)

Three Weeks

2008-10-12T19:40:00.003-04:00

I was challenged by someone close to me to spend three weeks in contemplation, figuring out not what I believe (that hasn't changed much in the past 15 years or so) but rather where I choose to be. I like to float between several religious communities and feel a strong connection to each of them. They each provide something different, something that when coupled with the others, create a whole that I'm rather fond of and work well within. However, my life has become incredibly complicated recently and this friend pointed out that perhaps I was spreading myself a little thin in places that I didn't need to be. It was suggested that I focus on my faith for a solid 21 days, and then decide where I was most invested. WOW. I can't say I disagree with the assessment. It's difficult to balance my work, the schedules of my family members, LP's medical needs and the time constraints that places on us all, and my commitment to several religious groups. I took the challenge and my three weeks starts now.

I've posted personal apologetics pieces before- defending my faith and my spiritual practice to those who had raised questions. This is NOT that. I'm NOT re-evaluating my relationship with Deity. Instead, I'm thinking about where I worship and what I value in a spiritual community. This is what I've come up with so far:

I mesh well with a spiritual community that...

- Has a strong commitment to social justice work

- Believes in orthopraxy (right action) rather than orthodoxy (right belief)

- Practices in an egalitiarian way that affirms the value of differences and recognizes the ways in which we are all the same

- Connects with the mystical

- Is constantly evolving, yet has connects to a solid foundation of common practice & belief

- Embraces paradox

- Encourages contribution from everyone

- Has a consistant ritual format that engages through traditional practice

Those are my thoughts so far. It should be interesting to see where these 21 days lead me. In the words of one of my favorite chants:

I am breathing, I am open, I am willing,

I am stepping out into the unknown,

Though the way is uncertain, I am willing,

To listen to the yearning of my soul . . .

The #1 Reason Why I'm NOT voting for McCain

2008-10-11T08:04:00.003-04:00

Most of my readers (all 5 of you!) know that I'm the wife of an Iraq War Veteran and that we are members of a Gold Star family. More than choosing Sarah Palin, more than ignoring womens issues, more than anything else, this is why I refuse to vote for McCain and take it as a personal affront (and depending upon who you are, a flat-out betrayal) when others tell me they will. These are the ratings that various groups have given John McCains voting record on military & veterans issues:

McCain Opposes the 21st Century GI Bill Because It Is Too Generous. McCain did not vote on the GI Bill that will provide better educational opportunities to veterans of the Afghanistan and Iraq wars, paying full tuition at in-state schools and living expenses for those who have served at least three years since the 9/11 attacks. McCain said he opposes the bill because he thinks the generous benefits would “encourage more people to leave the military.” (S.Amdt. 4803 to H.R. 2642, Vote 137, 5/22/08; Chattanooga Times Free Press, 6/2/08; Boston Globe, 5/23/08; ABCNews.com, 5/26/08)

McCain Voted Against Increased Funding for Veterans’ Health Care. Although McCain told voters at a campaign rally that improving veterans’ health care was his top domestic priority, he voted against increasing funding for veterans’ health care in 2004, 2005, 2006 and 2007. (Greenville News, 12/12/2007; S.Amdt. 2745 to S.C.R. 95, Vote 40, 3/10/04; Senate S.C.R. 18, Vote 55, 3/16/05; S.Amdt. 3007 to S.C.R. 83, Vote 41, 3/14/06; H.R. 1591, Vote 126, 3/29/07)

Opposed an Assured Funding Stream for Veterans’ Health Care. McCain opposed providing an assured funding stream for veterans’ health care, taking into account annual changes in veterans’ population and inflation. (S.Amdt. 3141 to S.C.R. 83, Vote 63, 3/16/06)

McCain Voted Against Adding More Than $400 Million for Veterans’ Care. McCain was one of 13 Republicans to vote against providing an additional $430 million to the Department of Veterans Affairs for outpatient care and treatment for veterans. (S.Amdt. 3642 to H.R. 4939, Vote 98, 4/26/06)

Voted Against Establishing a $1 Billion Trust Fund for Military Health Facilities. McCain voted against establishing a $1 billion trust fund to improve military health facilities by refusing to repeal tax cuts for those making more than $1 million a year. (S.Amdt. 2735 to S.Amdt. 2707 to H.R. 4297, Vote 7, 2/2/06)

McCain Opposed $500 Million for Counseling Services for Veterans with Mental Disorders. McCain voted against an amendment to appropriate $500 million annually from 2006-2010 for counseling, mental health and rehabilitation services for veterans diagnosed with mental illness, posttraumatic stress disorder or substance abuse. (S. 2020, S.Amdt. 2634, Vote 343, 11/17/05)

McCain Voted in Support of Disabled Veterans Only 25 Percent of the Time from 2004-2005. While McCain claims he “has been a leading advocate” for veterans with disabilities, statistics show he supported the Disabled American Veterans’ interests only 25 percent of the time in 2004-2005. In 2006, that figure slipped to 20 percent of the time. (Project Vote Smart)

McCain Voted Against Providing Automatic Cost-of-Living Adjustments to Veterans. McCain voted against providing automatic annual cost-ofliving adjustments for certain veterans’ benefits. (S. 869, Vote 259, 11/20/91)

INCLUDING BETTER ACCESS TO HEALTH CARE FOR GUARD AND RESERVISTS

McCain Opposed Increasing Spending on TRICARE and Giving Greater Access to National Guard and Reservists.Although his campaign website devotes a large section to veterans issues, including expanding benefits for reservists and members of the National Guard, McCain voted against increasing spending on the TRICARE program by $20.3 billion over 10 years to give members of the National Guard and Reserves and their families greater access to the health care program. The increase would be offset by a reduction in tax cuts for the wealthy. (www.johnmccain.com/Informing/ Issues/9cb5d2aa-f237-464e-9cdf-a5ad32771b9f.htm; S.Amdt. 324 to S.C.R. 23, Vote 81, 3/25/03)

McCAIN ALSO VOTED TO OUTSOURCE JOBS AT MILITARY FACILITIES

McCain Supported Outsourcing VA Jobs. McCain opposed an amendment that would have prevented the Department of Veterans Affairs from outsourcing jobs, many held by blue-collar veterans, without first giving the workers a chance to compete. (S.Amdt. 2673 to H.R. 2642, Vote 315, 9/6/07)

He Also Supported Outsourcing at Walter Reed. McCain opposed an amendment to prevent the outsourcing of 350 federal employee jobs at Walter Reed Army Medical Center—outsourcing that contributed to the scandalous treatment of veterans at Walter Reed that McCain called a “disgrace.” (S.Amdt. 4895 to H.R. 5631, Vote 234, 9/6/06; Speech to VFW in Kansas City, Mo., 4/4/08)

AND HE REPEATEDLY VOTED AGAINST FUNDING FOR THE VETERANS AFFAIRS DEPARTMENT

2003: McCain Voted Against $122.7 Billion for Department of Veterans Affairs. McCain voted against an appropriations bill that included $122.7 billion in fiscal 2004 for the Department of Veterans Affairs, Housing and Urban Development and other related agencies. (H.R. 2861, Vote 449, 11/12/03)

2001: McCain Voted Against $51 Billion in Veterans Funding. McCain was one of five senators to vote against the bill and seven to vote against the conference report that provided $51.1 billion for the Department of Veterans Affairs, as well as funding for the federal housing, environmental and emergency management agencies and NASA. (H.R. 2620, Vote 334, 11/8/01; Vote 269, 8/2/01)

2000: McCain Voted Against $47 Billion for the Department of Veterans Affairs. McCain was one of eight senators to vote against a bill that provided $47 billion for the Department of Veterans Affairs. (H.R. 4635, Vote 272, 10/12/00)

1999: McCain Voted Against $44.3 Billion for Veterans Programs. McCain was one of five senators to vote against a bill providing $44.3 billion for the Department of Veterans Affairs, plus funding for other federal agencies. (H.R. 2684, Vote 328, 10/15/99)

1996: McCain Voted Against a $13 Billion Increase in Funding for Veterans Programs. McCain voted against an amendment to increase spending on veterans programs by $13 billion. (S.C.R. 57, Vote 115, 5/16/96)

1995: McCain Voted to Underfund Department of Veterans Affairs. McCain voted for an appropriations bill that underfunded the Departments of Veterans Affairs and Housing and Urban Development by $8.9 billion. (H.R. 2099, Vote 470, 9/27/95)

1995: McCain Voted Against Closing Tax Loopholes to Increase Veterans Funding by $74 Million. McCain voted against eliminating tax breaks and closing tax loopholes to provide revenue to restore some of the proposed cuts in Veterans Affairs spending. (S.C.R. 13, Vote 226, 5/25/95)

1994: McCain Voted Against Funding the Department of Veterans Affairs. McCain was one of nine senators to vote against appropriating $90 billion in budget authority for the Veterans Affairs and Housing and Urban Development departments. (H.R. 4624, Vote 306, 9/27/94)

Iraq and Afghanistan Veterans of America graded his veterans/military voting record as a D

(http://www.iava.org/full-ratings-list)

Disabled Veterans of America stated that McCain "stood up for us" only 11 out of 32 key votes.

(http://dav.capwiz.com/bio/id/192&lvl=C&chamber=S)

A Letter from Abigal Adams, to the President

2008-10-08T09:58:00.000-04:00

"I cannot say that I think you are very generous to the ladies; for, whilst you are proclaiming peace and good-will to men, emancipating all nations, you insist upon retaining an absolute power over wives.

"But you must remember that arbitrary power is like most other things which are very hard, very liable to be broken; and, notwithstanding all your wise laws and maxims, we have it in our power, not only to free ourselves, but to subdue our masters, and without violence, throw both your natural and legal authority at our feet."

I'm No Pundit, But...

2008-10-08T08:34:00.005-04:00

1) What the heck was John McCain writing on his little yellow pad last night? He seemed to be writing down the question he'd been asked, before answering it. At one point, when asked to rank three issues in terms of priority level, he had to ask them to be repeated so he could write them down. WTF? Seriously....regardless of political affiliation, I want a President who can retain a 3-item list. When the First Lady says "John, can you run out and pick up eggs, rice and cat food." I want him to REMEMBER eggs, rice and cat food without needing to write it down!

2) McCain also needs to be told not to walk around. When he does, he looks like the Penguin from Batman. I realize that it's probably mean to sound critical of someone with physical limitations, but trust me- this is for his campaigns own good. When he walks, he looks OLD. And the last thing people want in a President is someone who's infirm. FDR gave an aura of strength & vitality, dispite his disabilities and I think that someone needs to tell McCain that he's doing himself no favors in strutting around the dias like he's trying to find his walker. He would've been better off to stay seated and project an air of "I'm so confident, I can do this sitting down."

This?

Or This?

3) It seemed like every "What Would You Do?" question was answered by McCain with something along the lines of "That? That's easy! I've got that one in the bag! No problem!" Which begs the question- "Really? Social Security/Afghanistan/Balancing Several Major priorities isn't a problem? Then why haven't you, in your 26 years of service (or heck, in the past 6 months!) thrown those brilliant, easy, obvious solutions out there, huh?"

Remarkable!

4) Just because I'm guessing some of you are thinking I'm a little less-than-objective (you're right...I'm an Obama supporter!) here's a criticism of BOTH candidates: how come neither one of you addressed WOMEN'S issues? McCain- your trophy running mate is against abortion, even in cases of rape or incest. DEFEND THAT POSITION. Explain to me why *her* daughter gets to "choose life" (although I would question how free that choice really was)...while *my* daughter would be denied that same choice, even if she were raped.

And Barak, why did you not CALL him on that point? Why did you not speak to the fact that women are disproportionately inpacted by poor economic conditions? Why did you not make the connections between a woman's access to birth control (which the current administration is trying to restrict...a move Sarah Palin supports) and her economic security? Why not highlight the fact that your running mate, whatever his flaws, authored the Violence Against Women Act, which protects & supports women exiting domestic violence relationships...women who statistically struggle more financially than their peers, regardless of race or class? Why not discuss the fact that the mortgage crisis is more likely to impact single mothers than any other group? And why not tie that fact *back* into a need for open access to family planning resources, so that struggling mothers are not forced to add MORE mouths to their table, simply because a Rite Aid pharmacist doesn't want to have to fill her legal prescription for a non-controlled substance?

C'mon boys! To quote Abigail Adams:

"Remember the ladies."

Little Pom on the Presidential Debate

2008-10-07T22:16:00.002-04:00

LP: What does the red light mean?

Me: It means that he's out of time.

LP: Then why is he still talking? He's got too many words.

Explaining Sarah Palin

2008-10-05T00:16:00.002-04:00

In an attempt to distract myself from my rain-of-crap day by turning to something slightly less weighty, like politics, I found the following quote. It's Carey Tennis, of Salon.com, explaining how the Conservative Establishment uses ignorance as a tool of power and control. It explains Dubya just as nicely as it does Palin...whom it was written about. Here it is:

"Inarticulateness is the weapon of the authoritarian in this way: To speak clearly is to risk being understood and thus disagreed with. To speak clearly is to invite debate. To obfuscate and muddle is to avoid disagreement and debate and force the issue to one of power. The refusal to speak clearly is an invitation for issues to be resolved by power alone: I don't have to speak clearly because you have no choice in this anyway. I'm going to do what I'm going to do."

Makes quite a bit of sense, doesn't it? It also gives some excellent insight into handle those people we all have in our lives who seem so smart & capable & often in-charge, yet can't string together a coherent sentence.

Crushed

2008-10-04T20:09:00.000-04:00

There are no words for this day.

I am crushed.

Crash!

2008-10-03T21:33:00.002-04:00

Okay, remember how proud I was of my productivity before? If not, scroll down. If you usually come here to read my "awww...isn't it inspirational how well she handles all of this?" kinda posts, you might want to skip this one.

Still here?

Anyway...

I think I've officially hit a wall.

I'm exhausted, overwhelmed, overburdened and generally down in the dumps. Here's my 2-minute pity party:

1) LP had to have emergency surgery on Monday, to repair his dialysis catheter, which cracked so close to his skin that they could not repair it. So, I started out by losing 3 days of work to take be with him. And while I might not be doing much at the hospital, believe me when I say that it is FAR from restful or relaxing. :-P

2) Thanks to my 3 day delay, I had to try and cram a weeks worth of work into the past 2 days at the office. I've hit the ground running every morning and pretty much don't stop until the end of the day or longer.

3) The Dancing Queen told us tonight that she needs $400 for costume deposits (that's right....just the DEPOSIT) by October 10th. I don't have and I won't have it. That's like a car payment or two (depending upon your financing) and she truly can't understand why it's a big deal. She's so angry and resentful right now. Because you know, I need more stress in my life.

4) I'm working tomorrow. THEN going to the Bunny House to work. THEN spending Sunday there as well. Good news: we're making progress! Bad news: I'm exhausted and won't have any time to rest before jumping right back into another work week.

5) I'm responsible for so many little details now. I feel like I'm jugging 17 million balls and that the world will implode if I drop one of them. LP's care, DQ's schedule, schooling & needs (to say nothing of wants), house renovation, SEVERAL projects at work. I am so overwhelmed right now. My usual brave face? Missing in Action.

I need a spa day. Forget that. I need like, a 3 day weekend somewhere that has no phones but lots of massage therapists. I need to reconnect with my life (the part that's mine...not the part that's momma/stepmomma/wife/volunteer/caretaker/employee/renovator/medical coordinator/etc/etc/etc). Frankly, there is no time in my day to be ME. To attend to MY needs. To remember that I do have a function as a human being separate from everyone else around me.

I'm just so tired.

Okay, I'm done now.

L'Shana Tova

2008-09-30T21:55:00.003-04:00

Today is Rosh Hashana, the Jewish New Year. Our original plan for today was for the Dancing Queen and I to attend services at a local Chabad-affiliated temple, then bake cinnamon-honey challah. Instead, I'm once again at the hospital with Little Pom. Last night, around 9, we realized that his dialysis catheter was leaking. After calling the Charge Nurse at our usual home-away-from-home, she advised us to come on down! By 10, LP, his Poppa and I were at Childrens. We sat. And sat. And sat. For H-O-U-R-S. At 5am, they decided that we were being admitted and sent LP and I up to our room. The first private room we've ever had! Today at noon, rather than watching the Dancing Queen hear the shofar blow for the first time, I was waiting in pre-op, as LP eagerly demanded "full sedation!" He came through fine, although in a LOT of pain. He cried, moaned and pleaded for us to help him for about 2 hours before they broke out the heavy-duty meds: tylenol with codeine. As I type, he's finally relaxed and watching a few more minutes of cartoons before I turn off the T.V.

When I got a chance to check my emails today, I had a large number that were wishing me L'Shana Tova and a sweet and good New Year. I have to say that the desire to be "written in the Book of Life" carries an extra-special meaning when you are stroking the forehead of your fragile, suffering child. The Dancing Queen and I missed out on a special experience this year. But I was given the opportunity to truly, fervantly hope that someone I dearly love would be written in the Book of Life in a way that is perhaps a bit more literal than my friends might mean it, but is all the more poignant given the way LP and I "celebrated" Rosh Hashana. Tonight, we ate applesauce and watched a Youtube video of Perry Como singing Kol Nidre. Tomorrow, we'll go home and maybe the DQ and I will still make challah...its yummy after all. :-)

Either way, may everyone who reads these words- Jewish or not- be blessed with a good and sweet new year; with friends who love you and family that embrace you; with health and prosperity in good times and forbearance and hope in the bad. May you be close to those who love you best and may all our days from this point forward be better than they were today.

Brightest Blessings on you and yours.

A Story, told through Layers of Linoleum

2008-09-27T20:56:00.002-04:00

Today, at the Bunny House, one of my tasks was to pull up linoleum in the kitchen. The first layer had been removed by M & L our first weekend out. Today, I stripped the second layer; which took the floor down to the original tiles, installed by the first owners. This was a very repetitive task- pull a tile, scan for tacks, beat the crap out of tacks, repeat.

The very first layer (the lowest, earliest tile) is a very faded red with black, white and gray spatter-spots on it. When we removed the cabinets, we could see that their original paint color was a pale gray. Today, it was so easy to imagine a young couple moving into their first home (let's face it- even in 1942, this was a starter home) and the care they must have taken in selecting every detail. I can see the wife, standing in her red, white and gray kitchen. She must have felt very grown up and proud: her first house, with it's subtle yet contemporary art-deco inspired kitchen. World War Two was raging and the ability to make choices- even about something as simple as tile- must have felt luxurious in a time of rationing and shortfall.

The original owners sold the house to a family who lived there for the next 40 years. At the time of her passing, the elderly woman who had lived there was over 90 years old. She drove, danced and dated until just a few months before her passing. The second layer of tile- a weird, industrial version of linoleum that lacked the flair of the original red- was her selection. She painted the walls a pale lemon yellow, although she kept the gray cabinets, and added this bizarre amalgam of multi-colored bits and pieces pressed into cheap tile. I have to wonder if this was pitched to her by some salesman as the latest thing or as cheap and effective. The look is steretypical 1970's public school hallway. Check out pics in earlier posts. This was the floor of a busy mom raising four children. This was the floor of suburban track housing and Eisenhower prosperity. Until it was covered over by cheap beige and cream peel-and-stick vinyl times sometime recently.

The final layer, light colored and cheap, was the choice of a woman alone. Someone who's children have grown and for whom the need to worry about hiding spills and crumbs and footprints has long passed. She was happy and active and independant and bold.

I wonder what we'll build upon her foundation?

Productivity!

2008-09-26T16:39:00.002-04:00

I just wanted to pause for a small "YAY ME!" moment and list all that I have done so far today:

- Woke up, showered, dressed, etc.

- Woke up Little Pom, took his blood pressure, dialysis stats, etc.

- Took him off dialysis, helped him with his various tubes & cords & belts.

- Dressed him, gave him his morning meds.

- Drove him to school: remembering to bring ALL my work things *and* his backpack!

- Participated in a 90 minute Development Team meeting

- Drafted proposals for online giving systems & a new database program

- Prepared the final video footage for my fundraiser video & put it in the mail.

- Convinced my Director that it was a worthwhile investment to pay for a colleague and I to attend a $50 a plate fundraiser and wine tasting. :-)

- Completed paperwork to enroll Little Pom in the Michigan Educational Trust

- Fielded calls from potential vendors in order to organize two high-profile events we have coming up at work.

- Researched homeowner surveys for a development project I'm undertaking.

All of that (and probably more I'm missing) BEFORE 5:00 PM. And still to come this evening:

- Drywall repair at the new house

- Wall prep and MAYBE painting LP's future new room

- Wall prep and MAYBE painting the future new living room

- Starting Little Pom on dialysis (assuming Daddy set it up already, otherwise, add that to my list!)

- Cooking dinner

- Hosing down LP with lavender-scented baby wipes since he STILL can't bathe!

And finally,

blessed, blessed sleep.

Tomorrow, we start roofing!

Gratitude

2008-09-24T07:32:00.002-04:00

Last night L and I met a kid not much older than the Dancing Queen. It turns out that his grandfather had recently passed away. Because of his age, the man had been added to the bottom of the transplant list and had died waiting for a kidney. I just want to take a minute, in the midst of my fear and stress and work and anger, to acknowledge how grateful I am. Our situation SUCKS and I wouldn't wish this on anyone. I tell LP every day that I wish I could make all of this go away...that if I could, I would wiggle my nose a la Samantha Stevens and he would be in perfect health. I can't. But I can at least acknowledge that things could be much, much, much worse...at least LP is a nearing transplant readiness. At least when he does, we have several people who love him enough to be screened as a donor (starting with his Daddy). And if, heaven forbid, all of those people should be rejected as viable donors, at least my baby won't die, languishing at the bottom of the all-important List.

In the midst of everything, I am reminded to be grateful not only for what we are experiencing, but for what we are not.

The Gospel According to Little Pom

2008-09-23T23:05:00.003-04:00

This is the story LP told me tonight:

Once upon a time, there was a BIG BANG!!! and that's how the world got made. After the Big Bang, there were dinosaurs, but a second big bang happened that killed the dinorsaurs. After that Big Bang, God was born. Then, the Roman Guard hung all the Gods and Goddesses up on crosses. And that's how we got Catholics and Jews and Hindus. All the people had to go back to where they were born, to register to vote. But then, the Roman Guard hung Jesus up on a cross and after that there were only 11 people left in the whole world. Those people fought the Roman Guard and eventually won. They killed the Roman Guard, who, after they died, invented hell. The leader of the Roman Guard became the devil and the leader of the 11 people left on earth became the Pope. The end.

(have I mentioned my child is VERY creative?)

Sunday Afternoon

2008-09-21T14:08:00.003-04:00

Well, we just checked back into Childrens for what will most likely be a simple overnight stay with bonus outpatient surgery sometime tomorrow. Little Pom is in good spirits and can't wait for them to enter his food restrictions so that he can order room service, LOL. We tried to work on the Bunny House yesterday, but Lowes took for-evah to track down our order. So, while there was no work done, there were LOTS of fun things that got delivered yesterday. Among them:

- Tile for the bathroom and kitchen

- Bathtub and surround

- Hallway light fixture

- Kitchen Track Lighting Fixture

- Sump Pump

- PAINT!!

- Roofing Materials

Next up, scraping, mudding and sanding the walls. More labor-intensive work. Next weekend is the roof, and if I can get the help, tiling the bath and kitchen. Our cabinets are on order and should arrive soon. YAY!

We Have a Plan

2008-09-18T20:17:00.003-04:00

Okay, first the LP news:

I spoke with his Nephrologist today who said that they are admitting Little Pom on Sunday night. Monday, he will have a quick, out-patient surgery that will eliminate the need for his foley catheter. Currently, LP has been carrying around a bag of pee everywhere he goes. This will place a sub-pubic catheter, which like the foley, goes directly into his bladder. The difference it that it goes THROUGH the lower abdomen, rather than through the urethra. There are LOTS of questions that I'm sure are running through your mind right now. I don't have the answers.

- Will he still have a urine bag?

I dunno, I've heard conflicting information.

- Will he also release urine the "normal" way?

I have no idea, but I guess we'll find out!

- Will this be a permanant solution? As in, no Matrofinof (I've forgotten how to spell it!) catheter?

No. It's a temporary fix until he is better prepared psychologically for the M. Dr. V explained to me that while there are many people who have permanant subpubic catheters, they are not typically transplant patients. Because the body views the catheter as a foreign object, it will always try to reject it. When you are imuno-compromised (as LP will be after transplant) that's bad. The M catheter is a safer option for post-transplant life...since it seems like for the time being at least, catheterization will ALWAYS be a part of LP's life.

What I do know is this: After the surgery on Monday, LP wil begin to recieve theraputic counseling at home (to help him cope with everything that has and continues to happen), biofeedback therapy (I'm assuming, based on what I know of biofeedback, that this is to try and help re-train his bladder), and behavioral therapy (to get him used to and comfortable with the idea of self-catheterization...either through the urethra or the belly button).

In 2-3 months, we will see how LP is doing with the therapies and the idea of self-catheterization. If he's willing to cath himself through the urethra, then there will not be a need for the M catheter. If not, then we'll proceed to the M cath and he'll have to cath himself through the belly button. Neither option is wonderful. Hence, the therapy.

AFTER he's recovered from the M surgery (assuming he ends up needing it), he should be transplant ready by late spring. In the interim, Daddy had his first Living Donor appointment on Wednesday. In exchange for a HUGE amount of his blood, they gave him a sticker, a keychain and a cool "Give Life" bracelet, LOL.

So, that's the latest on Little Pom.

On to the house update:

COASTIES ARE AMAZING!! On Monday, we had 20-30 Coast Guardsmen and women at our new house to help us work on it. Together, they had gutted the bathroom, removed the canopy and the gutters, taken up the flooring and completed our work on the kitchen...before lunch! After lunch, they broke up the concrete in the basement to ready it for drain tile & sump pump installation. Thanks to the Coasties, we have made tremendous progress and are ready to move from the "tearing down" phase of things to the "building up" part. This weekend, before LP's admission, we're going to start painting. Hopefully, we'll get a few willing hands over to get that finished in one swoop. Then, it's on to installing the vital bits (toilets ARE handy!) and doing the roof next weekend. Progress has been swift and steady. YAY!

Thats all for now. I'm sorry I haven't posted much recently, but there hasn't been much of an update to give. The plan may be scary & more than a little intimidating...but at least we have one now, right?

Long Time, No Post!

2008-09-13T17:47:00.005-04:00

I have been crazy busy. LP started school and so far, the kids are (from what he's told me) fairly accepting of his bag o'pee. I still haven't heard anything from the Urologist. GRRR. We got the keys to our house, and have started work. Here's a slideshow of what The Dancing Queen, two dear friends of ours, and I did today:

Daddy had drill, so he wasn't there. He's been (how to say this politely?) a raging JERK for the past few days. But whatever. It is what it is. And now, for something completely different...me, being joyfully destructive

The S Word

2008-08-31T20:45:00.003-04:00

Yesterday morning, LP's catheter came out. The tubing cracked, which allowed air out, which then deflated the little balloon in his bladder that holds it in place. When we spoke the the Nephrologist on call in the morning, she had agreed that perhaps we could just leave it out until his surgery; so that he could start school without a bag o'pee accompanying him.

After this conversation, we went out to lunch, ran some errands and came home to a message saying that the Head of Nephrology had overruled her and that we were to report to the ER at Childrens Hospital to have the catheter replaced. So, after letting Little Pom go to the pool for the first time all summer, off we went. The original plan was for him to be fully sedated, as usual. But because we had eaten lunch (BEFORE being told it would need to be replaced) that wasn't possible. LP was very, very scared and very, very brave...but he let them put the new cath in without fighting or struggling...and without any anesthetic other than some topical lidocaine!

Afterwards, he was still really angry and frustrated about having to endure this process without sedation. So, in an effort to distract him, I discovered a new parenting technique:

I told him that sometimes we feel really BIG feelings. And those feelings require really BIG words. So, if it would make him feel better, he could (behind closed doors and with only Daddy, DQ and myself present) pick exactly *one* "grown-up" word to say. O-M-G! The tears stopped immediately, his little face lit up and he said "I've always wanted to say this one: shit!"

And with one magical S Word, the tears were gone and the trauma giggled away. Not something I'd recommend in every day life, but when (not if) these scary, painful and control-taking-away things have to happen, it's nice to know that there's a "naughty" way I can cheer him up that DOESN'T involve a trip to Toys R Us.

Todays Stress Level is: Elevated (Orange)

2008-08-25T18:26:00.004-04:00

I have been crazy-busy at work. I got a promotion (YAY ME!) that came with tasks that amount to:

1) Planning a fundraising event (that's roughly the size and scope of a wedding) in a little less than 3 months.

2) Writing, Producing, Directing and Filming a short promotional film that will make people cry 3x in 7 minutes to be screened at said event.

This is in addition to doing a TON of other job-related tasks, trying to finish up my 2nd book before the November deadline, and of course, parenting a medically fragile child. Oh...have I mentioned I know NOTHING about video production?

Adding to the excitement/tension level: we're getting the house in Eastpointe!!!! Of course, Daddy is going away for a month in October, which means that we can add:

3) Tearing off and replacing a roof
4) Repairing the foundation issues

Both in September...in the middle of the work tasks....and the medical appointments...and the writing....and of course, both kids dance and school schedules.

Yeah....no stress here at all.

But of course, no one comes here to read about *me* anymore, LOL. It's aaaaaaaaaaaallllllllllllllllll about Little Pom. So, here's the latest update:

LP was supposed to have his cardio evaluation on the same day as his dialysis clinic this month. He has to have a EKG and Echocardiogram (among other things) in order to be cleared for transplant. I got to the hospital at 12:30 for a 1:15 appointment. Checked in at Outpatient and found out that I needed a prescription for his labs. They sent me to Cardio for the 'scripts. Cardio said that they didn't have them. But they marked that we were there. So then, we went to Dialysis Clinic, got our 'scripts and went back to the lab. Waited there for-evah. When we were next in line, it was 1:20 and we ran across the hall back to Cardio. We sat *there* for awhile, until someone asked us for LP's authorization. No one told me I needed an authorization. So, around 2:00, I skipped the middle-man (aka our evil pediatrician) and called LP's case manager at the insurance company. She said "put them on the phone, I'll give them the authorization right now." They refused to talk to her and said that it had to be faxed in. So, she hung up with me, called them and gave them the authorization number. Their response: "thanks for that....now can you please fax it?" The level of beuracrasy was mind-boggling. I send the Dancing Queen BACK up to the Dialysis Clinic (they were waiting on us) to ask what the latest we could go there was and they said 3:30. FINALLY, at 3:00, we were called in for the Cardio workup. I told the nurse that we had to be at PD clinic by 3:30 (remember, this was a 1:15 appointment) at which point she said.....

"Oh that's not nearly enough time for everything we need to do! You'll have to reschedule and come back!"

I was seriously about to cry. I was soooooo close to tears that you could hear it in my voice. So, we left Cardio and went to clinic. Here's the update on that:

- His catheter site is healthy & healing.
- His diet still is severely restricted and we're not very good at that part of everything.
- His numbers were okay...not super-high, but not normal either.
- His painful shot has been decreased from once a week to once every 10 days.
- But we've added 6 new pills per week.

And that's all the news that's fit to print.

PS- Cardio called today and rescheduled his appointment for the day after tomorrow. Oh, and even though the Case Manager issued a Universal Authorization for him, they didn't bother to enter it into the system, so now we have to get ANOTHER one....in the next 48 hours. Bastards.

Little Pom's Parents and the Terrible, Horrible, No-Good, Very Bad Day

2008-08-11T21:48:00.002-04:00

This is going to be short, because I'm exhausted.

Today was LP's MRI, which required sedation. Not a problem, he took the IV without a fuss, was cheerful and chipper going down and didn't fight the sedation too hard before it knocked him out. Easy-peasy, right? Yeah...not so much.

When they went to wake him up (after getting him set up for the Urodynamic Study, inserting a special catheter and a corresponding anal-proble), it was discovered that Little Pom is one of the lucky 3% of the population that reacts- let's go with poorly- to the anesthesia. Yeah. It was bad.

Imagine your stereotypical crazy person in a Hollywood rubber room. The screaming, the thrashing, the incoherent begging & yelling, the fighting people off, the flailing, the potential for self-injury. Now, imagine that's your eight year old. And there's nothing you can do.

This went on for HOURS. The Urodynamic study was a no-go of course, and they gave him more (different!) anesthesia to replace his foley catheter. Took him about 45 minutes to wake up...fuzzy, disoriented, scared and angry. He seemed mostly okay, so we took him home. But it was a nightmare. We went right back into psychotic-break mode on the way home. Halfway there he was screaming at me for refusing to take him to Chuck E. Cheese...the rest of the way home he was screaming at me for not getting him home faster. It was awful.

When we got home, he was inconsolable. Being pragmatic as well as petrified, I had Daddy video tape about 5-8 minutes worth of his thrashing and begging for help...including me asking him how many figures I was holding up and having him consistantly double them.

He finally fell asleep and he's been out ever since. I'm hoping he'll stay down through the night. Poor baby. Poor parents.

Getcha Getcha Getcha Getcha Head in the Game!

2008-08-08T22:25:00.002-04:00

So, last night was the Lions game! It was great fun- LP got his coveted foam finger and used it well throughout the game:

The Lions took an early lead, and Little Pom was right there cheering for them the whole time. He was even on the Jumbotron for a few seconds:

However, when the Giants managed to tie up the game in the 4th Quarter, LP was a bit more tense:

How good were the seats? Well, let's put it this way...all of the next photo's were taken with Daddy's cell phone, so the zoom capability was pretty darn limited:

Yeah....we were THATCLOSE. :-)

In our "Small World" column- it turns out that the family sitting directly in front of us had a child who also see's LP's nephrologist. Here's a psuedo-transcript of their actual conversation:

LP: (to the mom) I have low kidney function.

Other Kid: I pee blood!

LP: Well, I get a machine!

Other Kid: Yeah, that's way cooler.

All in all, it was a pretty awesome evening. Thanks again, Franny!

O.M.G.

2008-08-06T21:15:00.003-04:00

Thanks to a very, very, very kind family of people we've never met before, Little Pom is having a one of his dreams come true: we're going to the LIONS GAME tomorrow!!!! I got an email this morning from a former co-worker, passing along an email from a friend of hers who had Lions tix for sale. I sent them an email, asking how much they wanted for them and instead, she said that her husband and son wanted to give them to LP instead. I was absolutely speechless...in fact, I think my reaction startled my office-mate a bit, LOL.

Did I mention that they're playing the reigning Super Bowl Champion New York Jets?

Oh yeah...and that our tickets are on the THIRD ROW of the FIFTY YARD LINE!?!?!

O.M.G!

I will definately post pics- I can't wait to see how big LP's smile gets before his face cracks, LOL.

On a side note:

I was wrong...Ms. M did *not* send us the Dairy Delicious. So, to our anonymous benefactor, Little Pom says (a very milky-mouthed) thanks!

My extraordinary editor Elysia (check out that alliteration!) send me the sweetest card today. Her note made me cry. She also sent LP a copy of the book "Piratology" which has become the newest treasure in his pirate library. Thanks to her, LP is getting a PD belt! What's a PD belt, you ask? Well, ever since Little Pom got home, we've had to tape his dialysis catheter to his belly...not comfortable, and not very effective. The alternative is letting the tube dangle from his belly all day. Instead, I can order him this tomorrow:

https://id309.securedata.net/fstubbs.com/merchantmanager/product_info.php?cPath=32&products_id=86&gclid=CJepooPI-pQCFR8SQQodXy4GrQ

It's been a good day....but I think Little Pom is getting a tiny bit spoiled, LOL!

Dairy Delicious

2008-08-05T22:58:00.002-04:00

To the wonderful, fabulous person (the wonderful Ms. M) who sent us FOUR CASES of Dairy Delicious products:

Rory had mac & cheese for dinner with milk to drink, thanks to you.

Update

2008-08-05T18:56:00.002-04:00

We actually had a pretty good weekend. Little Pom's Nephrology team gave him permission to go to my in law's Knights of Columbus overnight campout on Saturday and he had a BLAST. They pitched a tent and roasted marshmallows and generally had a good ole time. I'm pretty sure it made his summer. Daddy took pictures, which I'll post here as soon as I can. You won't believe how happy he looks.

Speaking of happy: I GOT A PROMOTION! I'm now the Service Relations Coordinator for my Habitat for Humanity affiliate. Pretty nifty, huh?

And finally, for those who are interested in considering living kidney donation, please check out www.kidneykid.com and the living donor page. I have uploaded .pdf files of the relevant forms and you can now print them off directly from the site in order to submit them to the hospital transplant team.

More later on!

And the Beat Goes On...

2008-07-31T19:11:00.003-04:00

Just a quick update. We are home and are halfway through our very first week of dialysis "without a net." So far, so good- we seem to have overcome the whole "alarm every five minutes" issue that we had in the hospital. The biggest adjustment so far has been for Little Pom, getting used to being in bed at 9:00 exactly. I have to say, I haven't been particularly pleasant this week since it seems like our whole lives revolve around the dialysis process. I've never been one who's good at routine...I really, really need the flexibility to run out and pick up carryout for dinner or to spontaneously go to the late show movie. But that's not possible anymore. Everything is regulated, measured, ordered and pre-determined and I'm (doing it but) MISERABLE. We have not missed a dosage, a blood pressure screen, a deadline or a dietary restriction. We're doing everything right, but it's so contrary to my nature that I'm struggling to adapt. I don't even know what I'll do when Daddy goes on deployment next. I think we're going to ask for a prescription for respite care, and I'm doing some research to find out if there's a way to find dialysis-trained babysitters. I doubt it though.

LP is doing okay, although he's absolutely impossible in the mornings. The PD makes his shoulder hurt (the catheter can pinch a nerve that is felt in the shoulder) and his tummy ache. Which makes him really, super difficult to deal with in the mornings. Yay. On the bright side, I've built a website specifically designed to be an easy-to-remember place to get information on living kidney donation for him, so please pass along this website to your friends, family, contacts & elists:

www.kidneykid.com

On an even brighter side, here's a kitten in a frog costume:

Someone Shot Up My Church Yesterday

2008-07-28T13:48:00.002-04:00

I don't attend the Tennessee Valley Unitarian Church. But I have been a Unitarian Universalist for many, many years now and I have to say, the incident yesterday has hit me really hard. I cannot imagine the feelings of those congregants today and honestly, am thankful that my family and my church has NOT experienced such horror. But even as I recognize that I can in no way understand their feelings this morning; it is also clear that I stand with them, reeling from the idea that anyone could possibly see our faith- mirrored through our lives & actions- as something so personally offensive that they feel the need to erase it's very existance. I may not be able to relate to the trauma of this momentary burst of violence...but I certainly feel the pain of realizing that he wanted us dead. Surely in this, I, like every UU around the world, stand with the Tenessee Valley congregation. Their pain, their grief, their sorrow is theirs and mine and every Unitarian Universalists. And likewise, the hatred directed at them belongs to all of us as well.

Thus, as a Unitarian Universalist, let me take a moment to speak out about Jim Adkisson, the man pulling the trigger whose stated objective was to kill as many people- people like me- as he could before the police took him down. Tennessee is a death penalty state, and as someone who is charged with first degree murder (so far), Mr. Adkisson is most likely going to be facing a capital trial. It is my hope that the prosecutor eventually assigned to his case would not pursue such a path in this case however. The Unitarian Universalist church stands opposed to capital punishment, and I believe that it would be wrong for the State of Tennessee to avenge the deaths of Linda Kraeger and Greg McKendry in a way that runs counter to everything they affirmed during their lives. Namely:

The inherent worth and dignity of every person;

Justice, equity and compassion in human relations;

Acceptance of one another and encouragement to spiritual growth in our congregations;

A free and responsible search for truth and meaning;

The right of conscience and the use of the democratic process within our congregations and in society at large;

The goal of world community with peace, liberty, and justice for all;

Respect for the interdependent web of all existence of which we are a part.

Mr. Adkisson, even as the perpetrator of this horrific act of terror is a person of worth, deserving of dignity. Making this statement, at such a time, after such a heinous act against my fellow Unitarian Universalists is NOT easy. It may even seem foolish or naive, but that fact is that we cannot embrace the light of Unitarian Universalism only when it is convenient or easy to do. We ALL have worth, or none do. And this statement must be consistantly true, even when we have been injured beyond all comprehension. Likewise, we must affirm that all persons are deserving of justice, equity and compassion- which in this case, I believe means a fair and fast trial for Mr. Adkisson, so that his victims may have the justice they deserve. Perhaps, after Mr. Adkissons inevitable incarceration, and after the Unitarian Universalist Trauma Response Ministry has worked with the TVUU members, they can engage in some form of Balanced & Restorative Justice program that would bring the offender and his victims together, to understand the nature of his actions, to demonstrate love even in the face of hatred & despair, to reconcile and to heal. Even now, the members of the TVUU church believe (as do all UUs, even after this) that we are all connected and that what happens to one impacts us all. This means that our faith calls us to reach our to our offender and to demonstrate our living creed, before our tears have yet dried. I affirm their stance as a liberal congregation of faith and healing and believe that, when their pain subsides (knowing it will never vanish completely) that they will extend a hand of compassion even to Mr. Adkisson and demonstrate to him a spirit of life that he was unable to see before.

And so today, I light a (virtual) candle of sorrow and of hope. Grief for my brothers and sisters in Tennessee. Anger at Mr. Adkisson, even as I understand how frightening and angry being unemployed for a long period of time can be; and hope for the future- hope that the TVUU can build from this tragedy and bring out of their fear and grief and rage a renewed spirit for social justice, peace and healing. May the light of our collective candles shine into the darkness of isolation, of incarceration, of anger and of pain, in order to serve as a beacon of forgiveness and compassion eminating from the chalice of the Tennessee Valley church.

Sure, that could happen, even on Death Row. But shouldn't we give the Tennessee Valley Unitarian Universalist church as much time as possible with Mr. Adkisson? Say, the rest of his natural life?

Only Because You've Been Asking...

2008-07-24T18:14:00.003-04:00

Thanks to everyone who's gotten in touch with us to ask what Little Pom needs at the moment. We are filled to the brim with toys, games, cards, flowers & balloons and he sends a big THANK YOU to everyone who's been so thoughtful in the past few weeks. Most of the furniture/bedding needs have also been met, so we're good there as well. So, for those of you still wondering how you can be of help, there are two ways:

1) Little Pom's dietician turned us on to this stuff called Dairy Delicious (www.dairydelicious). It's kidney-friendly dairy products & LP is in love with their milk & their cheese sauce. He's been so happy here because he's been able to have mac & cheese, nachos and milk to drink again. It's hard to find, although it can be ordered through the company; so we're kinda asking that anyone who's wanting to help us out either order LP some Dairy Delicious products or else contribute $ towards our own orders so we can order more at once & save on shipping. It's roughly $25-30 for either a case of their milk cartons or a case of their cheese sauce cups. Personally, I think their mac & cheese is overpriced & would rather have more of the sauce cups that I can just add to plain pasta.

2) If you have type A or O blood and would like to learn more about the opportunity to be a living kidney donor, let me know and I'll send you the information. We had our meeting with the pre-transplant coordinator today and they can officially start screening candidates for LP's eventual (hopefully sooner rather than later!) transplant.

So there you have it, LP's two needs at the moment: dairy products and organs, LOL.

Daddy says I HAVE to post here (against my better judgement) that I've missed 3 weeks of work & we've been paying tons of $$ in gas going to and from the hospital, as well as meals here, etc. Currently our home phone & internet as well as *my* cell phone is shut off. We can live without any of it, of course, but if anyone would like to contribute to a "Getting the Pomegranate Family Back on Track" fund, Daddy says he wouldn't turn you away, LOL.

But as for me and my Little Pom: Dairy Delicious & a Kidney is all we need. :-)

Thanks everyone, for everything. Really.

Nesting

2008-07-24T12:27:00.002-04:00

Well, Daddy & the Dancing Queen are at home, getting ready for Little Poms arrival. They've switched out the bedrooms & are assembling new furniture & putting the new spaces together. The Dancing Queen was (understandably) sad to have to give up her room, so we got her new wall art, sheets & accessories to re-vamp her new space. Now, it's very sophisticated: urban prep with Audrey Hepburn inspired retro accessories. Little Pom has decreed that his space shall have a pirate theme, so it's a good thing we got him a Captains Bed! I've found some super-cheap & fun piratey accessories (thanks eBay! thanks etsy!)- nothing cost more than $10 including shipping- to dress it up, and we used some of our church funds to get him cool bedding. He picked out sheets that have a cartoon version of the Pirates of the Caribbean characters & then I added a cream, brown & blue striped comforter to match.

ETD is sometime tomorrow. They're starting LP on a medication (similar to Flomax) intended for prostate patients, that mgith help eliminate his need for a catheter. Keep your fingers crossed for us. I desperately want it to work, but I'm also unwilling to get my hopes up because it seems like NOTHING has gone easily for us through this process. If this works, it would be an absolute miracle. Otherwise, the Urology nurse came in and talked to Little Pom about the idea of catherizing himself several times a day. The idea was not met with the horror and outrage I expected. But she did get to meet LP's stubborn side. The side that says "No thanks, I'd rather give up Karate then d that." So, we'll see how it goes.

Lights, Tunnels & All That

2008-07-23T00:30:00.003-04:00

Okay, it's 12:30 in the morning & I'm exhausted, so here's the super-short update on my brief lapse into hopelessness yesterday:

1) Furniture situation is resolved, with much thanks to our church & family in Missouri.

2) Our insurance company is dealing with the Semi company's insurance. They are filing a mini-tort claim on our behalf and (for some reason) sending us a check for $64.00.

3) My favorite of Little Pom's three nephrologists mentioned today that he and LP's Urological surgeon were discussing trying a medication on LP that may delay (or even eliminate!) the need for the Mitrofanoff procedure. I'm scared to be too hopeful, since everything seems to be progressing so rapidly, but seriously....my kidlet needs to be cut a break already! And I've always been too stupid to stop hoping, LOL.

4) We are 1/2 way through Little Pom's nightly dialysis and....so far, so good! Every evening he experiences a brief period of pain. Pain strong enough to make him cry...but he only gives it a 4 on a scale of 1 to 10. Thankfully, tylenol, a warm pack & an ice pack all together seem to help. He's sleeping (finally!) and we haven't had an alarm beep yet.

Keep your fingers crossed for us. :-) It seems like Scarlett was right. "Tomorrow is another day."

Straws, Camels & All That...

2008-07-22T00:26:00.002-04:00

Okay, so I think I've officially reached my breaking point. I'll start with the really good news, so as not to appear ungrateful. I am really, truly, so very thankful for the blessings we have recieved in recent weeks- first and foremost the fact that my parents got us a new car! It's a PT Cruiser and is big enough to handle all four of us *and* Little Pom's dialysis equipment and supplies. My father in law is picking it up in Milwaukee for us tomorrow. I can't even begin to say how grateful I am for everything our family has done for us these past few weeks. So, please don't take the rest of this post as ingratitude...it's just venting.

Today, we started our training for the PD dialysis. It's fairly simple, but it's still sooooo overwhelming. We had to sign a form saying that we understood that failure to do it, and do it right, might result in Little Pom's death. O.M.G. There is no bigger feeling than the understanding that your childs life is-quite literally- in your hands. One mistake, and he's exposed to potentially life-threatening infections or other conditions. I have to say, I was kinda in a daze throughout the training after that. I paid attention. I learned the steps involved in setting him up....but it's all soooooo scary.

After that , the instructor and I were talking briefly about the Mitrofanoff Catheter that LP will have put in in a few weeks. This is the permanant, internal catheter that takes him off of the Foley Cath. It's necessary, I know, because his bladder is still retaining fluid and that interfere's with the dialysis process. But 1) it's different than I was picturing it in terms of appearance & process and 2) it's something he'll very likely have for the rest of his life. My heart is breaking. I GET that things could be worse. I GET that his condition is "curable" with a transplant and that someday, hopefully soon, he'll be able to lead a mostly-normal, healthy life. Which I think is why the idea of the catheter forever gets to me. Here's a picture of the Mitrofanoff Catheter...keep in mind, it's so very different than I had expected and sooooo (again) overwhelming & (I'll admit it) slightly horrifying to me:

When they had explained it to me, they said that the incision would be in LP's belly button, so hopefully, it won't even show. His little belly button is already kinda deformed from the PD catheter- it looks "closed"...like a horizontal slit or fold, not a round bump or divot now. I had been picturing a port or valve that he connected the cath tubing to and drained from. Instead, he has to literally feed the catheter tubing down into his abdomen several times a day to drain his bladder, so that his dialysis will be successful. For some reason, this really, really gets to me.

So....we have

1) Overwhelming generosity
2) Overwhelming responsibility
3) Overwhelming treatment methods

I've been barely holding it together today. Daddy & I were at each others throats last night (to be fair...I was RIGHT and he was wrong) and barely spoke to each other today. Then, I left to go to the bank & get dinner. Coming back to the hospital, I was stuck in a HUGE traffic jam, because of a fatal car accident a few miles up the road. I looked in my rear view mirror just in time to see a Semi Truck slowing rolling towards me and not stopping. I took my foot off the brake & moved my car up as far as I could, but the vehicle ahead of me was at a stand-still and I didn't have much room. Long story short: I WAS REAR-ENDED BY A SEMI TONIGHT!
The driver admitted that it was his fault. In fact, he told me flat-out that he had forgotten to set his brakes while he went to reach for something he'd put in his microwave. He put two good-sized holes in my bumper...but thank goodness he wasn't going faster or I'd be dead right now.

I don't care about the damage to my car. I just really don't need one more thing to deal with right now. We have 48 hours to switch LP's bedroom with the Dancing Queens, come up with the money to purchase his new bed and mattress, learn how to do dialysis without killing my kidlet and now....we get to add dealing with insurance companies to the list. I am officially DONE. Update on the furniture front: we've contacted every nonprofit and advocacy group we can think of, including our own military Family Support unit. No one can help us come up with the furniture funds in time, and our families have already been so generous that I wouldn't in a million YEARS dream of (or really be able to) ask them. So, that's more stress. The "where will we put all of LP's medical supplies and equipment when we get home" stress. There's a LOT of stuff- big, bulky stuff that they give us in month-at-a-time kits. So that's 30 ten-pound bags of dialysis fluid, 30 tubing kits, tons of betadine locks, sterile caps, surgical masks, etc. Not to mention the machine itself. I figure that conservatively, I need to come up with $600-750 in the next 2 days, in order to equip ourselves properly to do this. But now that I need a new bumper for my car, I'm thinking that won't be happening. I'm exhausted. I'm overwhelmed. I'm scared. I'm stinky. I'm going to bed.

Sob.

Sunday Morning Update

2008-07-20T09:37:00.002-04:00

Okay, first of all- Bubbles went home yesterday. His stepmom and some other woman came to pick him up & we managed to exchange contact info with them. So now we have parent names, home address & phone and Bubbles birthday. You know, to stay in touch and whatever else we may need it for. The stepmom was telling us all about how she can't ever visit him because she works 3rd shift. I had to bite my tongue from pointing out that this should make it *easier* because she's awake when the kids are out of school. But I didn't want to seem hostile. She also said that his dad slipped & broke his ankle yesterday "on the way here to visit." It was awfully convenient timing, and didn't really explain where they've been the REST of the week. But, Bubbles got dressed, gave us hugs and rode off into the sunset in his little blue hospital wagon. We did have one little moment where I'd asked him "are you happy you're going home?" And his little eyes welled up and he shook his head no. Then he saw his stepmom looking at him and started nodding instead. It broke my heart.

Little Pom cried himself to sleep last night because he missed Bubbles. LP had a busy day yesterday too. We've started dialysis and it seems to work pretty well (Important kidney number was 3.6 last they told us)...but that's WHEN it works. We've been having issues with the drainage part of the process. Basically, the dialysis machine is supposed to fill LP's abdominal cavity with sterile fluid, let it sit for a certain amount of time, drain the fluid out and repeat. This should happen quite a number of times over the course of 10 hours, depending upon the "dwell time" (the sit time) that the doctors decide on. For Little Pom the first two phases go fine, but we've been having issues every, single night when it comes to draining the fluid back out. Yesterday, they did an x-ray to confirm that the PD catheter was placed correctly- it is. Then they did a renal ultrasound to see if that gave them any info. His bladder (without the catheter, remember) is retaining fluid again- about 1/2 a liter- and the thought was that it might be putting pressure on the PD catheter and not allowing it to work properly. So, last night LP had another Folely Catheter put in. They have him a tiny bit of morphine and a great deal of Versed but he was awake & screaming the whole time. On the bright side, Daddy says it was still the easiest of the (now 4 or 5, I've lost count) catheter insertions.

So, the kidlet has a tube coming out of his abdomen and a tube coming out of his penis. Daddy says that the Urology surgeons were in briefly this morning & we might end up doing the Mitrofinoff (sp?) Catheter after all. That's the permanant one that drains through the belly button. But we don't really know yet, because even with the foley in, the dialysis fluid last night still wasn't draining well. So....we have a mystery wrapped in an enigma, shrouded in the form of an eight year old boy. Eventually, I'm sure dialysis will be a wonderful thing for us. But we gotta figure out how to make it work first.

More later.

The Saga of Little Pom & Bubbles

2008-07-18T14:43:00.005-04:00

Little Pom's third night of dialysis went well. I went home, so that means it went swimmingly for me, LOL. Daddy stayed the night and from what the nurse said, it was MUCH better than last night. The machine still went off several times, but at least this time there was no pain and screaming on LP's part. More good news: his "Important Kidney Number" is down to 3.6. This is AWESOME, since last time it took us a week to get him down to 3.4 and here we are, only 3 days into dialysis and seeing such good results. Little Pom's tummy is healing nicely, although he is still sore & tender and doesn't have an appetite. He says it hurts to eat. :-( His blood culture came back positive, so they have him on antibiotics for a slight infection, but he's not feverish and it seems to be no big deal. He won a little radio today on Bingo Friday.

Bubbles isn't doing as well. He's in surgery again as I type. It took them hours to get ahold of his parents to give oral consent for the procedure, since they are never here and don't answer their phones. One of the housekeepers told me that they would never give up custody of Bubbles, because they use his SSI and other benefit money to fund their own lifestyles. Aparently, Bubble's father recently bought a new car. Bastard. On the bright side, I'm pretty sure that's fraud so it would be fun, fun, FUN to turn the jerk in. Defrauding the government *and* medical neglect....surely a candidate for Father of the Year. Last night, the Dancing Queen had her head on my shoulder and Bubbles shouted "HEY! Stop touching my momma!" This SUCKS because he's gotten so attached to us, and I don't want to cause him any additional trauma when we leave. When DQ and I went to go home, Bubbles said "Where you goin'?" We told him that were going home and he said "I go home with you. I go too." It broke our hearts to leave...especially since one of the nurses told us that he's the happiest they've ever seen him with us here and that she thinks HE thinks he's going home with us."

So....add a new name to the prayer chains! Just use Bubbles when you do though...God knows who we mean, LOL.

Spoke too Soon

2008-07-17T13:59:00.001-04:00

7 poops.

Life Lessons from the Hospital

2008-07-17T13:49:00.002-04:00

If you work here:

- Don't as a child "is it okay if I do this" if you have to do it no matter what they say.
- The minute you leave the room, my child WILL poop.

If you are being treated here:

- Sleep. Wherever, whenever and for however long you can.
- If they give your child a laxative, it's helpful to already be wearing brown clothes.

What we've done so far today:

8 pills
6 poops (in a bedpan)
2 blood draws
1 puke
and a beep- and squeal filled night.

And it's only 2 PM.

Bubbles Parents Are Assholes

2008-07-17T10:00:00.002-04:00

Okay, I'm really sorry for swearing (Nana, if you're reading this, trust me- no other term is strong enough!) but Bubbles desperately wants to go to the playroom for the music therapy group. He's basically in a cage (metal crib w. a plastic top on it) 24/7 and apparently his family has requested that he NOT be allowed to go to the playroom!! So.....

-Don't Visit
- Don't Stay with him for Surgery
- Don't bring him ANYTHING from home

And then, deny him what little opportunity there is for enjoyment here for someone his age.

I'm sorry...but they're assholes.

Alls Quiet (FINALLY) on 6 West

2008-07-17T09:33:00.002-04:00

We had a ROUGH night last night. Little Pom was (sorry for the TMI) really constipated & in a lot of pain. He kept crying & begging for lidocaine for his "privates"....which would've done nothing, but it's all he knew from last time. Pain in the pelvis=lidocaine on the privates. He had a fever too and was crying, shaking, teeth chattering....awful! The night nurse (whom I'm pretty sure was a few bulbs short a chandelier) was FIXATED on the lidocaine and kept asking me to describe it....explain where we got it...tell what we used it for...explain who prescribed it....over & over again. THen, she'd go and ask the doctor on call for more of it, even though it would do NOTHING for the type of pain he was currently experiencing. Seriously. You paid a fortune for Nursing School. Don't take your medical advice from an eight year old. Eventually we got a tylenol into LP and he settled down. Except the alarm on the PD system kept going off, pretty much every 10 minutes, all night long. So, it would wake the boy up. I'd get up and re-set it. We'd both drift off to sleep and.....super-crazy-loud beeps again. We eventually fell asleep around 4 am. Which was when Nurse Chandelier decided to wake him up & give him some medication. He & I are both sooooooo overtired today and I'm concerned that tomorrow night isn't going to be any easier. Ugh. On the bright side, I found an AWESOME bed for Little Pom that keeps him at a decent height for the PD to drain at night *and* has tons of storage space for all the bags of solution & other supplies we need. Check it out:

Update on Bubbles:

Bubbles is out of ICU and back with us. It breaks my heart though, because one of the nurses mentioned off-hand that she thinks he thinks he's going home with us. I've been here for four days and have yet to see ANYONE from his family. Although we do get some indications of what home might be like, when he shakes his fist and us and mimics muttering under his breath when he's annoyed with someone. We gave him two stuffed puppies and he spends equal amounts of time cuddling them & making them fight with each other. Oh, and apparently he had quite a blue vocabulary when he got here. I wish we could take him home. I think that we'll do our best to stay in touch with him though, because we can call the hospital after we leave & if he's here, come and visit. We can't keep him, but we can try really hard to show him that someone cares about him....other than the medical staff, who dote on him whenever they have the time. :-( As promised, here are some pics of our Bubbles:

(the colorful puppy by his shoulder is one we brought him)

Hopefully today should be fairly relaxed: meds, water and catching up on our sleep. LP is zonked right now and I want him to stay that way as long as possible. :-)

Post-Surgical Update

2008-07-15T22:30:00.003-04:00

Well, after going 22 hours without food or drink, Little Pom *finally* was taken to the Pre-Op at around 5:00 tonight. Of course, they took him within an hour of my leaving the hospital for the first time since we got here. :-( But, Daddy was there with him and everything went really, really well. He's got his PD catheter in his tummy and they are gathering the supplies to start him tonight. LP is still on a morphine drip, so he's *slightly* awake...but not very talkative. Lots of whispers and hand-gestures. I'm sure that his throat is sore after the breathing tube for the surgery, but he says that the only thing that hurts is his tummy. We'll be here at least through the weekend and most likely into early next week as well. It'll be a lot of just hanging out during the day (broken up by random blood draws, of course) and PD by night; to get his abdomen used to the comings and goings of the fluid. Here's a pic of the machinery we'll soon be using at home:

And, as an added bonus, here are some pics of Little Pom, stoned off his gourd, LOL:

And one of him sleeping it all off:

Update on Bubbles:
He had surgery today too. His parents didn't bother to show up before he went down to pre-op, but Daddy says that he met Bubbles' mom at one point in the waiting room. Of course, she disappeared before he got out, so no one could find her to tell her he was going into the ICU. She most likely still doesn't know, or care. It's sooooo sad. We've been threatening to hide him in our luggage and take him home with us. But I'm thinking they'd catch on when we had to bring him back for his next hemodialysis. Bubbles has NOTHING from his own stuff here with him- no blankie, no toys from home. He has several hard plastic (ie: easily sterilized) toys from the playroom in his crib, including a little tiny plastic puppy he's totally latched onto as his own. Today, I went to Right Start and bought him 2 stuffed animals of his very own. Something SOFT he can cuddle with and call his own. But I totally plan on stealing that Happy Meal sized puppy for him if he leaves before we do. If he's out of ICU tomorrow, I'll post a pic of Bubbles with his puppy pals.

Thanks for all of the prayers, loving emails, cards, light & positive energy sent our way. It is ALL appreciated & felt! More tomorrow.

Random Early-Morning Thought

2008-07-15T07:50:00.002-04:00

To all my friends in the medical field who've heard me call it "Perineal Dialysis" this whole time:

Thanks for not openly mocking me.

Round About & Back Again

2008-07-15T01:02:00.003-04:00

Little Pom was re-admitted to Childrens today. His "Important Kidney Number" went back up to 5. Remember, normal range is about .9 to 1. So, his kidneys aren't thriving on meds alone and tomorrow he's having surgery to have a catheter put in so that he can begin peritoneal dialysis. Peritoneal Dialysis is actually pretty ingeneous, although it's more than a little overwhelming for those who are asked to perform it- the parents. LP will be doing the CCPD version of PD.
Here's the scoop: http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/

We've done really well with his medication, and the PD will allow us to ease up a bit on his diet, I've been told. But still....it's all sooooooooo scary & new & completely overwhelming. It didn't help any that Little Pom needed FOUR pokes today: bloodwork in the lab (what got us re-admitted), two attempts at IV insertion that didn't work...and one more that did. It was really, really hard for him and I have to say, my seedling is braver than I could *ever* be under the circumstances.

In the meantime, LP's roommate is a 2 year old little boy whose parents (we've been told) rarely visit. We've been here for 5 hours and they haven't shown up at all. He's really lonely and took to Daddy immediately. In fact, he was calling us both Mom and Dad right away. It's a really sad situation and we've unofficially adopted him. For the purposes of this blog, I shall call him.....Bubbles. Bubbles gets through his bloodwork & other pokes by blowing bubbles and he and LP were given a bottle to play with here in their room. Bubbles is very sweet, smart & happy. But he misses his own Mom and Dad. :-(

Surgery is set for early tomorrow, so I'm going to end for tonight. I'll provide a post-surgery update as soon as I have more to share.

The Urodynamics Experiment

2008-07-10T09:21:00.003-04:00

I just spoke with the Urology Nurse Clinician who will be doing Rory's Urodynamics test. This is the test we've been told he needs before he can have the Meinenoff (sp?) catheter put in. Turns out, this involves removing his foley cath (yet again!), inserting a special catheter for the procedure and then putting the foley *back* in. Oh...and this time, just to add to the unexplainable misery for an eight-year-old child....he gets something in his rectum too.

I tried to explain to her that he needs to be sedated if she hopes to accomplish anything involving catheters. She said he has to be awake for the procedure itself but will ask the Urologist if we can sedate him in pre-op to get him set up, then wake him up for the procedure itself. Which then begs the question "how do they put the foley back in, once they've woken him up?" I'm going to call the Nephrologist and find out if there's any way to schedule his surgery for the same day, but I doubt it. So for now, we have extreme pain and trauma tenatively scheduled for Wednesday at 9am. Assuming they can get the referal from Blue Care Network in time. Otherwise, the back up date is the 21st. Although I don't know what that means for his surgery.

I'm done. Let us off the ride.

Wednesday, 10:53 PM

2008-07-09T22:56:00.003-04:00

To everyone who's been calling in a panic: I'm sorry I haven't posted recently. We've all been taking some much needed time to relax, adjust and remember what it's like to be home. Here's the latest:

We ended up in the ER on Saturday, because LP's catheter tubing was leaking. They switched it out and we've been mostly okay ever since, although he's been running around like a little maniac and somehow managed to put a small tear in the bag itself tonight. Daddy fixed it with duct tape, LOL.

The whole family went to see the fireworks on the 4th and we bumped into LP's favorite day care provider and her family. It was soooooo wonderful to see them and we had a great time catching up.

Yesterday was the Renal Clinic and while we weren't able to get the bladder test done that we needed, they've decided that Little Pom will have an MRI (without contrast dye) to make sure that his Non-neuropathic, neuropathic bladder is indeed "non-neuropathic" and not plain old "neuropathic." We have about 7 days left for this catheter, so I'm optimistic that we'll have the remaining procedures and his 2nd surgery by next week sometime. I got his labwork today and his "Important Kidney Number" has gone back up a bit, from 3.4 when we were discharged to 4.7 yesterday. When we go back next week, they'll check it again and hope he was just dehydrated.

At the clinic we broached the subject of a pre-emptive transplant and the Nephrologist was thrilled! He said that usually it's difficult to broach the subject of something as radical as a transplant to a family, but that he's totally willing to pursue that path with us. We're supposed to be contacted by the pre-transplant coordinator soon. In the meantime:

Are you bloodtype A-?
Do you have an extra kidney lying around?
Let us know! :-P

In the meantime, our insurance denied our request for a digital blood pressure machine, even though I'm hearing impaired and can't monitor LP's blood pressure with the cuff & stethescope they gave us. So, if someone happens to see a good deal on one, let us know! I need to find something reasonably priced before Daddy leaves for Arizona in September.

Some good news: The Dancing Queen is home and already springing into action, monitoring Little Pom's meds and keeping us on our toes. Welcome home, DQ!!

Thursday, 9:47pm

2008-07-03T21:50:00.003-04:00

Didja miss me? I know this is the longest I have gone without posting, but that's because....

WE'RE HOME!!!!

LP was discharged this evening and we are settling in back at home. We've got the foley catheter still in, and we'll have it over the weekend, but so far (in the 3 hours we've been home) it's been okay. We ate out at a restaurant and no one stared or pointed...which was a concern of mine. We'll go back for the Renal Clinic on Tuesday and hopefully we'll get everything set up for the last few procedures he needs for now. Renal Clinic is pretty awesome. We go in and see the Nephrologist, Nurse Clinician, Dietician, and Social Worker (for financial & adjustment issues) all in one swoop. Hopefully on Tuesday, we'll be able to see the Urology Nurse Clinician for the last procedure he needs done before the Minenhof (do I have that right?) Catheter is put in. That'll get rid of the bag o'pee we're carrying around with us now.

More Good News:

I FINALLY got Little Pom to take the last two medicines!! We traded a Tbsp of the nasty pink stuff (bactrim) for 1/2 a tablet of the same, taken at bedtime. It makes a WORLD of difference. As for the Sodium Bicarb, I'll admit: I lied. When it came this morning, it was still whole, so I told him that we had found an alternative for him. He said they looked the same, but I said "there are lots of white medicines. You can tell it's different because this one is two whole tablets you swallow instead of 4 half-tablets you chew." They're the same pills he's been resisting for a week, but darn if he didn't swallow them down with no problem! So, as long as this holds true over the weekend, I'm thinking we won't need the G-Tube after all! HOORAY!!! Poor kid, the final tally for medications is 6 types of medications (15 total every day) plus 1 shot a week. The injection is Epogen, which will stimulate red blood cell production & help his anemia. It's manageable, I think...as long as the battles over meds are over. We'll how tomorrow goes, when we do a full cycle at home. We're going to see the Clawson fireworks tomorrow night and Wall*E in the afternoon. We are under doctors orders to be normal. :-)

Bonus feature: My boss, Daniel, sent us a Bible verse via text message when LP was in surgery. Rob and I have decided that when we have the money, this will be our next tattoos; to commemorate this radical change in our lives and to acknowledge our blessings. Obviously we won't do the whole verses, LOL- just the chapter & verse. Here it is (Jewish Study Bible translation):

When you pass through water, I will be with you;
Through streams, they will not overwhelm you.
When you walk through fire, you will not be scorched;
Through flame, It shall not burn you.
For I the Lord am your God,
The Holy One of Israel, your Savior.
Isaiah 43:2-3

Wenesday, 2:29pm

2008-07-02T14:29:00.002-04:00

Well, he's out of surgery and resting. We have a name, although I have no idea what it all entails yet: "Non-neuropathic neuropathic bladder" aka "Hinman's". Let me start by saying I KNOW NOTHING YET. But, based on what they've told me:

1) It's really rare.
2) It is often related to either spinal issues like spina bifida, or extreme stress in the household. The surgeon off-handedly mentioned that if there are no spinal issues, it may be related to how Rory processed Rob's military deployments. They want to do an MRI to rule out a spinal cause, such as a tumor.
3) Basically, the bladder contracts (as if it were signalling to urinate) and stays that way. Meaning, LP really, truly couldn't tell when he needed to go. This contraction in turn, caused the fluid to back up into his kidneys and caused the damage.
4) The pediatric urologist put it at 95% likelihood of needing a kidney transplant. He couldn't give a timeframe, obvisously, but he told us it would be "sooner, rather than later."

So, course of action: they'll send him home (eventually) with the catheter he has now...the external one. In a couple of weeks, we'll bring him back and they'll do the catheter through the belly button thing. That's what we've decided is best for LP's temperment. There is a slight....slight chance that with this relief, the bladder could learn how to properly function, but this wasn't discussed for long and I'm not holding out much hope at this point. However, it would at least keep the fluid from going into his kidneys again.

From now, we do maintenance on his kidneys, monitor them to see how much kidney function will return with time on the meds, and go from there. Sometime in our future, there WILL be dialysis and there WILL be a transplant. But, I hold out hope that after transplant, he'll be a normal, happy, healthy kidlet...who happens to pee through his belly, LOL.

I'm going to try to do more research. I'll post what I find later on.

Wednesday, 10:10 am

2008-07-02T10:10:00.003-04:00

Still waiting on surgery. Still no news. LP will STILL not take two of his medications, so I think that daddy & I have decided we are okay with a GI tube. Our reasoning is that dialysis (still in the future, although we don't know whether the future means next week or next year) will only add 5% to his kidney functioning- it's the medication that does the bulk of the work for him. The longer and better he takes his meds, the longer (I think) we can delay starting dialysis. In the meantime, giving him his meds & stuff in an alternate way increases his quality of life three ways:

1) Delays dialysis, if only for a little while

2) Ends the 2 hour drama, 2x a day which reduces his trauma and our stress

3) GETS THE MEDICATION INTO HIM, allowing him to recover- whatever "recovery" means at this point.

It's a radical step. It's scary & extreme. We know that. But we've been here for 7 days, and he has yet to make any progress, no matter how slight, in the meds arena. I want to keep him safe & healthy- it's what I've always told him my job is. And I think that a GI tube might be the only way to do that at this point.

On a side note: I talked to LP's school yesterday and they are willing to work with us in terms of dosing meds & monitoring dietary restrictions. They suggested a med alert bracelet in case of emergency, and I ordered a really cool one today from this website: http://www.stickyj.com/ . LP's getting a stainless steel wrist-tag with interchangable sport straps. He picked out black, camo, outer space and football. :-)

We're waiting on rounds to come through so that he can go down for surgery.

PS- I went home for the first time in a week last night and stopped there to eat on my way home. My waitress made the mistake of asking how I was doing and I burst into tears, LOL/sigh. She sat down at my table, talked to me about Rory, asked to see pictures, gave me a hug, told me she'd pray for him. And then, when I was done eating, told me I had no bill to pay. Her name was Kim. So, if you have a Don Pablos nearby, go there, eat, ask for the manager and tell them that you are there because of Kim. She was an angel in disguise last night. :-)

Spoke too soon

2008-07-01T19:16:00.002-04:00

Tuesday, 7:17pm.

Little Pom has a fever of 101. They are bringing him Tylenol, which should go fairly easily, since he's had it a million times at home. They had to take out his Heplock earlier today because it clotted up...so they have to poke him tonight to get his daily labs.

I'm going home before that. I just need a night away from the crying and the hurt and the feeling helpless.

Tuesday, 6:49pm

2008-07-01T18:49:00.002-04:00

Other than the nightmare of meds, we're pretty well tucked in for the night. The Nephrologist came in and talked to us a little bit more. Dialysis seems like it will happen sooner, rather than later. He's having someone come and talk to us tomorrow about the different ways in which they do it. His preferred method would actually be done at home, overnight, 7x a week. That way Rory leads a normal life, and gets his dialysis through a tube each night when he's sleeping. The alternative method is to bring him here 3x a week, where he sits in a chair for 3-4 hours and they do it through a catheter port in his shoulder. At home, its through a port in his side. I am broken by this news. I *get* that it's not the end of the world....but it's sooooooo hard to imagine the years ahead. He also told us that dialysis only provides an increase of 5% in kidney function- the rest is diet and medication. Which makes the struggle over meds all the more frustrating & scary. The G.I. tube isn't their first option, and he might even be willing to let us go home and try it there in a far less restrictive environment first, but if Little Pom continues to refuse the Bactrim & the Sodium Bicarbonate, then it'll have to happen.

The Pediatric Resident changed today. Goodbye Dr. Sloan, hello "Dr. Dan." It's his first day- ever. He asked to do LP's catheter today and I said no, not if it was his first one. I get that it's a teaching hospital, but he's not practicing on MY kid. The nurse ended up doing it, so I'm guessing I was right...it would've been his first cath. But, for now, until medication time, we're all tucked in. I think I'm going home tonight to rest & gear up for tomorrow. It'll be my first time home since Friday morning. I'll do a little work, pretend everythings okay for a minute, and hopefully come back tomorrow rested & ready. I dealt with med time last night. Let daddy to it tonight!

More tomorrow, after surgery hopefully.

Tuesday, 4:02pm

2008-07-01T16:01:00.002-04:00

Well, they sedated him to put the catheter back in and....

it didn't work.

Yeah, he was awake for the whole thing and once again, I could hear him screaming. They got in in this time though, and it's over. Little Pom is already back to playing Gamecube (thanks, M!) and acting silly. Hightlight of the trauma: afterwards, he was screaming "can you at least put my top back!?!?!" and everyone rushed to pull down his gown. LP screamed "NO!!!" and proceded to "readjust" his foreskin, ROFL. But we survived.

Right now he's scheduled for surgery tomorrow. They're going to take a peek into his bladder, inject dye into his kidneys and see what happens. If they need to, they've already scheduled the time to put stints in the ureters, if they need to.

So, that's all there is for now. More later, as usual. I'll try to take some pics and post them too.

PS- They gave Little Pom back his flowers!!!! :-)

Tuesday, 12:16 pm

2008-07-01T12:16:00.003-04:00

So, we went down for the Radioactive-Bladder-Thingy and it went.....eh.

They attached the vial of radioactivity-juice (dye contrast) to LP's cath line and pumped his bladder full. It was actually pretty cool at first to be seeing his bladder & kidneys & spine & stuff. The radioactivity-juice showed up a blockage, which changes what they're doing tomorrow...I just can't remember how at this moment. It's all become a blur (good thing I'm posting updates and can look back at what I wrote earlier!) now. Anyway, during this process, somehow the catheter came out. So, they tried really, really hard to get him to pee in a cup so that they could finish the test and see what was happening "down south." But, you know guys & pee pressure....it just wasn't happening lying sideways on a hard table w. your parents and a roomful of strangers staring at you and trying to convince you to let loose. So, his bladder is still full of radioactivity-juice, we are temporarily catheter free and are now waiting on SOMEONE to come and tell us what happens next. I'm guessing sedation & a re-insertion of the catheter & the heplock that clotted up today and had to be removed.

On the bright side, in approx. 45 minutes, I'll be able to eat for the first time today!

More later. Little Pom says thanks for all the well-wishes!

Tuesday 9:56 am

2008-07-01T09:56:00.003-04:00

LP's going down soon for the Radioactive-Bladder-Thingy. If they find an obstruction (meaning if there's reflux from the bladder), they'll take him into the OR and go in with a fiber optic camera and see if they can get a visual of what's going on. If they DON'T find an obstruction, then they'll have to operate tomorrow and put stints in his ureters (tubes connecting his bladder to his kidneys) in order to help them drain into the bladder. So, we have a plan of action. In the meantime, "Important Kidney Number" stayed the same overnight, so it's still at 3.8. Little Pom will take three of his five medications- I'm going to ask the new pediatric resident if there are any more alternatives. I seriously just think that we broke Dr. S. By the time she was getting ready to switch shifts & floors, she was just DONE. She did say she'd come and visit, but I wouldn't be surprised if she's not REALLY relieved to be done with the Barner family.

More after the procedure.

Monday, 10:33pm

2008-06-30T22:33:00.004-04:00

Little Pom is FINALLY asleep after a rough, rough afternoon. Everything was fine until six. Earlier, he had gone with daddy to the Family Library where they checked out a couple of movies and got to go to a cool presentation all about bees. He even got to whack a beehive shaped pinata and bring back 16 (count 'em...16) bouncy balls. When he got back, daddy left to go do some laundry and things started to go downhill. They confiscated his flowers! The nurse came in and told him that he had a flower delivery (thank you, "Mysterious Stranger"!) but that she couldn't bring them in. I asked why, seeing as how he had 2 other flower arrangements already and she said that she had to take those out too! LP was inconsolable. Turns out, there are children with cancer on our floor who are imuno-compromised. They can't be around fresh flowers, because they might harbor bugs or germs or something. So....LP's flowers are all in the nurses suite until (thanks to the hospital psychologist) medical photography comes up tomorrow to take pictures of them for Little Pom. Then, we have to take them home. So that was insult to the injury of the day.
In the late afternoon, we had visitors, who sweetly brought LP some balloons and a small hockey toy to play with. We had a nice visit, but when it was six o'clock, I asked for his medicine. I figured if we started earlier in the day, it would be less of a struggle....HA!

TWO HOURS later, we'd gotten two of the five medications into him. He swallows his iron pill with no difficulty and now loves Tums (after I got them to switch it out for the nasty Calcium Bicarbonate and then shoved it into his mouth to get him to try it) but two of the others (a pink-syrup that's not amoxicillian and the Sodium Bicarb) he just freaked out over. I truly think that this was the worst day yet. The doctors and the nurses did EVERYTHING (and I mean everything) they could think of, short of strapping him down and force-feeding him. And he was like a kidlet possessed. I just asked the nurse: the other pink stuff is called Bactrim. Anyway, the pediatrician on duty eventually just gave up. She (rightly) said that we should not have to fight him for 4 hours a day just to get his medicine into him. She had to mark his chart that he refused to take some of his oral meds. She also threatened a G.I. tube if he wouldn't start taking it.

I spent 45 minutes sobbing in the Chapel. A student nurse assigned to us, Jon, was absolutely wonderful with him and with me. He came down and sat with me, listened, talked, got me telling funny stories about our crazy life and cheered me....relatively....up. Jon was working on a 2nd degree in nursing after getting his Bachelors in History and then working construction for several years. I think he'll be an amazing nurse. And it didn't hurt that he was smokin' hot, either. (Don't judge....his presence was the ONLY upside to my day)

Anyway, as I've been writing this, the nurse came in and I asked her about the G.I. tube. She said that she doesn't think it's very likely that they would do that just for 1 or 2 medications. If he was refusing all meds AND not eating, maybe....but she doubts it would happen in this situation. Tomorrow she's going to intercept Little Poms's breakfast tray and we'll crush the sodium bicarb and put it into his applesauce. If he doesn't see us do it, hopefully he'll eat it all up. Keep your fingers crossed. In the meantime, his blood pressure is WAY high- they just tested it and it was 133/100, so we're taking meds for that too. The BP medication is #5, for those of you keeping score up above. He'll take it without any problems, so of the 5 meds, we're only having issues with two. That to me is not G.I. worthy...and they can't do anything without our consent, right?

So, I'm done. Done. DONE for today. I'm off to bed and will post here as soon as there's news tomorrow. To those who don't like this format and are upset I've switched over: I'm really, really sorry. It just makes my life easier. You can still call anytime.

Monday, 3pm

2008-06-30T15:06:00.002-04:00

Okay, so today has been hard.

LP went for his ultrasound and there was no change. He's basically just as damaged now as he is when he got here on Thursday. I was truly surprised, since I was expecting SOME kind of improvement. But no.

So, the radioactive bladder thingy has been cancelled until tomorrow, when the Urologist himself can be here, and not just the Urology Fellow. We tried to give Little Pom his morning medication and it was a HUGE battle- as usual. It took 90 minutes to get 3 pills into him. This has been happening twice a day the entire time we've been here. People have been asking, "aren't there ways to make it easier" and the answer is yes....but we can't. It doesn't do him any good if he's getting all of his medication via IV, and then won't take it when we go home. He's gotta get used to taking it *now*. Today, I lost the plot and basically sat and cried while the doctor and the daddy tried to get the life-saving little miracles down his cranky, stubborn throat. It's just so hard to expend all this energy FIGHTING HIM to save his life. Who cares if it tastes yucky...if it keeps you alive? But he's 8, and doesn't think like that.

It's also been a hard day for news. Tomorrow, when they do the Radioactive-Bladder-Thingy, the Urology team will look for any obstructions and hopefully figure out a way to remove them Meaning: possible surgery. If there are not obstructions, then we have to consider sending LP home with a sort of "self service" catheter- one that he either inserts through his penis every 2-3 hours, or else a system that will allow his appendix to serve as a sort of auxilary bladder, which would then be drained on the same time schedule, through a valve in his belly button. At the moment, if we would need to make this decision, we're leaning towards the latter option since it seems like one he'd fight over less at home. Can't imagine trying to convince him to shove something in his penis 8-12x a day, when he won't even swallow a pill now. Any comments, thoughts, insights, advice you might have for us would be appreciated.

They've told us a bit more about his condition. It's called Obstructive Nephropathy and you can read more about it here: http://renux.dmed.ed.ac.uk/edren/EdRenINFObits/Obstruction.html
Keep in mind though, that BOTH of Rory's kidneys look like "the kidney on the right." He also has hydronephrosis, which is a part of the Obstructive Nephropathy. You can see what that is all about here: http://en.wikipedia.org/wiki/Hydronephrosis. Basically, his kidneys are WAY, WAY bad....and dialysis *is* a part of his future. We just don't know when. It was described today as an "eventuality."

So, that's the news so far. I don't think I'll have another update today-- maybe a report about how well we do with meds tonight.

Post comments- for me, for Rory. We'll be sure to pass them along.

Little Pom Report: Monday, 10am

2008-06-30T10:15:00.004-04:00

They came and took his blood at 4 am, and we got some good news at 6. His "important kidney number" (the creatinine level) is down to 3.8 and his kidney function has slightly improved from 10-15% to 16-17%. So there's that. Bad news: this is not NEARLY the improvement we'd hoped for and when they ultrasounded his kidneys, they were the same size they were on Thursday before we arrived. So, after an entire weekend of pumping fluids and draining via a foley catheter, there has been NO change in the amount of fluids actually in his kidneys. Little Pom will be sedated again today, so that they can remove his catheter completely and pump his bladder full of radioactive dye. Then, they will put the cath back in and watch his functioning to figure out what's happening internally. From there, we'll (hopefully, maybe) know where we go from here. As of today, the creatinine levels are dropping, but there's been no other improvement.

So for now, more morphine, more tests, hopefully more answers.

In the interim, LP grows crankier by the day. On the bright side, this is mitigated by the (pathetic) amusement he creates when he's stoned on morphine. :-)

More later on.

The Scoop on Little Pom

2008-06-29T13:14:00.004-04:00

For those who may read L's blog, and not know what's going on, I'm posting all of my email updates about Little Pom here below. He's happy & content as long as they leave him alone, and his numbers are improving, so that's good. LOT'S of people have been asking what we need. Visits are nice, although I can't promise we won't have to kick you out (just ask L!) at some point. Otherwise, $5 meal passes so that we can join him at meal times are awfully helpful. We spent almost $300 on meals our first few days here, before someone clued us in to the fact that we could pay a pittance & eat with Rory. Those are the practical, earthy needs. Other than that, prayers, healing energy and holding sacred space is very, very, very much needed.

Thanks all! Here are the updates so far:

Friday Morning-

Hi all,
For those of you who don't know, Little Pom (my little boy & only child, age 8) was admitted to Childrens Hospital yesterday. He looks, sounds, & feels fine; but some routine testing showed some really concerning issues with his kidneys. RIght now they they are filled with fluid and severely damaged. The Nephrology Fellow here at Children's estimates their functioning to be between 10-15%. She's not sure how much of this is acute & reversible and how much is truly permanant damage. They tried to get a catheter in last night to drain the fluid, but there is a blockage of some kind. What should have been a 5 minute, fairly easy procedure was 30+ minutes of torture & trauma for the kidlet. They never got the cath line in, so this morning someone from the Urology department will be coming in to visit. They will determine whether they sedate Little Pom & try again (we have told them that they aren't doing ANYTHING to Little Pom that doesn't involve sedation or anesthesia after that fiasco) or whether they take him straight to the O.R. Little Pom cannot eat this morning, as a just-in-case, and didn't sleep very well because they didn't even get the IV line in until almost 1am. We got here at 3:30 yesterday afternoon. If anyone wants to visit, we are in room 676 Bed 1 and would be delighted to have the company. Little Pom also hopes that someone will send him flowers, LOL. Anyway, that's all the news we have at the moment. I will send out another email as soon as we have more.

Please hold my son in your hearts. This is terrifying for him.

Friday Update #2-

Okay, they got the catheter in after sedating Little Pom. Kidlet got morphine & valium and was more than a little stoned when he woke up. Good news is that the catheter is draining well, apparently. Head of Nephrology came by and said that there was no change in LP's labs and that at the moment he is considered to be in kidney failure. If it weren't for the urinary tract obstruction, they would already be talking about dialysis, but for the time being, they are waiting to see how much fluid will drain from his kidneys and how much of the kidney function returns after that. From there, it's up to Urology to determine what to do with his obstruction and up to nephrology to decide what will happen long-term. And there *will* be long-term...this is something that he will be dealing with (in one way or another) for the rest of his life. Let's hope that all he'll need is medication, because the alternative would be dialysis.

Sunday Update #1-

So far, we're waiting out the weekend and praying for increased kidney functions. I should have his daily labs back soon and we'll know more then. He's putting out LOTS of fluids (he's on a fairly steady IV dose) which is good...he's not retaining anything thanks to the catheter. He's happy & alert & playing video games, LOL. His IV line clotted over, so they put it into his heplock line. An hour or so ago, they came and installed a new heplock in his other arm (this makes blood draws WAY easier, because it's one poke for all of them...instead of one poke for each) and it was really fast & he was quite brave.

Right now our biggest stress is getting him to take the oral meds. Iron he can swallow down no problem, calcium is yucky, but today I covered the pills in a spoonful of honey, LOL. It was still a struggle, but once he took it, it was okay. So hopefully tonight he'll know that honey makes it easier & we'll have less of a battle. Last night they tried to give him a potassium supplement (strangely for a kidney patient, his potassium was LOW. Usually it's too high!) that was truly vile. We fought and cried and cajoled and threatened and yelled and begged and bribed for nearly an hour to no avail. Finally, the doc agreed to put it in his IV line, but made sure he knew that we wouldn't be allowed to go home until they knew he would take all of his meds- including the yuckiest of them all. Thankfully, the Chief of Nephrology was in today and he says he thinks it's highly unlikely that we'll need the potassium at home. :-)

Nothing more is going on until tomorrow, when we'll have a bladder x-ray and a consult with urology. That's when they'll decide what the next steps are & whether or not he'll need surgery. We'll be here at least until Wednesday, we've been told. I'll let everyone know his creatinine levels (not that I can spell it) in the next update. In the meantime, send him "low, low, low" vibes....low creatinine means higher kidney function!

Hugs for now & thanks for all the prayers.

Sunday Update #2-

Little Pom's Creatinine levels have dropped to 4.4 (from his high point of 6, trying to get down to a normal level of 1), which means that his kidneys are now functioning a bit better. :-)

Keep sending those LOW, LOW thoughts our way!

:-)

Blood, Sweat, Tears (and Gratitude)

2008-06-24T00:23:00.003-04:00

I was watching the documentary that Ricki Lake made, called The Business of Giving Birth tonight. Those of you with Netflix can watch it instantly here:

http://www.netflix.com/WatchNowPlayer?movieid=70075502&trkid=228971

Anyway, it's all about homebirth and midwifery and it really brought back memories of Rory's birth. For those who don't know, my son was born at home after a 30+ hour posterior (or as my midwife called it "sunny side up"), natural, labor. I've never written the birth story before, and in a way I regret that; because now, eight years later, I'm sure there are small details that I will miss. But I think it's important to record.

On April 20th, after having sporadic contractions the night before that left me very tired and more than a little scared, I called my midwife, Linda Honey and told her that I was afraid. I was afraid that the contractions would deprive me of sleep and leave me exhausted...which would result in fatigue requiring transport when I went into full labor. She advised me to take a nap and then come to her house after Rob got off of work. She would make me a castor-oil smoothie which would help speed up my entry into labor. I managed to catch a few restless hours in a recliner at Oakland-Pontiac Airport where Rob was working at the time (and also where Rory was conceieved...but that's a story for another day) and when his shift ended, we headed towards Lindas. She gave me a smoothie and a once-over, and declared that I was progressing nicely and would most likely be in full labor by that evening. Rob and I went home to prepare. I put on a yellow, embroidered cotton nightgown that I'd purchased for just this moment and Rob put the "welcome outfit" for Rory into a paper bag, then into the oven on low heat. My contractions were steadily increasing and after a length of time (not sure how long) Rob called our birth team to come over.

That evening, Linda Honey (Rory's midwife), Beth Bailey Barbeau (my midwife, who was also pregnant with her first child at this time), Nissa & Diane (their apprentices), Renee (my support person), Rob (my partner) and some massage therapist-lady whose name I don't remember gathered in my living room sharing crudites and crackers and occasionally watching me have a contraction on our couch. I remember trying to convince Linda that Rory was posterior, but she kept saying "no....you're not in enough pain for it to be back labor." I was in a considerable amount of pain, I won't minimize it. But to be honest, I think that I was too naive to understand how badly it hurt. Every single contraction, I would think to myself "that hurt, but it wasn't so bad. The next one will be worse." I would look at the birthing altar that Rob and I had set up over the course of my pregnancy and brace myself for the next, "worse" contraction. The birth altar was a small endtable, covered in a soft, green recieving blanket for an altar cloth. My black Nile Goddess was in the center, with a pair of yellow crocheted baby booties from my grandmother in front of them. I had my birth art (done over the course of reading "Birthing From Within"...a book that talked me off a ledge many times during pregnancy) on the wall above it, along with a bumper sticker that said "Men Who Change Diapers, Change the World." The altar also had small charms, including a tiny jade heart, on it.

It became evident that while my time on the couch was relieving my back pain, it wasn't doing anything to progress my labor. Linda and Beth decided to put my in a warm shower with Rob. We were living in a cheap, one-bedroom apartment at the time and I knew that there would only be enough hot water for ONE shower over the course of my labor...so it was important to time it right! After the shower, which felt amazing and worked wonders to ease my pain, they had me squat in the bathroom. At one point it was suggested that putting me on the toilet might encourage me to push...I wasn't a fan of this idea (LOL!) and we went into our bedroom, where the birth kit supplies were assembled. I had purchased new sheets for the delivery: pink, white and yellow plaid to match my yellow nightgown. I was too modest to birth in the nude and ended up keeping my nightgown on the entire time. I still have it and wear it under my ritual garb when I work magick- it's imbued with energy from the strongest, most emotional moments of my life. I laid down in the bed and progressed quickly into transition.

I was really, really, tired. I would literally fall asleep in between each contraction, wake up long enough to push a bit, and then go back to sleep. Eventually, I got the hang of pushing. I'd been pushing from the top of my stomach/diaphragm the whole time...which I think is what made things take so long. As soon as I realized it was more like (forgive me!) pooping out a baby, things moved faster. Someone asked me if I wanted Renee in the room to take pictures. I said no, but Beth knew me better than that. She knew that Renee's JOB was to take pictures for me- that was what I'd said for 9 months! So, Renee quietly entered and sat at the foot of my bed, while Beth was on my right and Rob on my left. Linda and Nissa quietly attended to what was happening below the belt. :-) Transition, which Linda also called (accurately!!) the "Ring of Fire" was the hardest part of labor- THAT was the "worse pain" I'd been waiting for, and it tooke evertything I could to move to a place beyond the physical and work my son into this world. Beth kept encouraging me to reach down and feel his head crowning. At one point, she took my hand and guided it down to where his skull was beginning to emerge. I shrieked and pulled away as if I were burned: at that moment, the LAST thing I wanted was to be reminded of just how big the baby and how small the exit was!

Rory was born at 3:17 a.m. We had a sound machine on at the time set to a heartbeat effect. When he emerged, he was crying in rythym with the heartbeat...a natural drummer from his first moments. Rob wept openly, but was scared to get too close, too fast. He had lost several siblings at or near birth and was reluctant to get attached without knowing his son would be okay. Rory had a bit of a hiccup in his cry, but a few minutes with the oxygen tank and it went away. His cord was cut and all of his initial apgar scoring/cleaning/dressing/etc. was done right on my stomach. Renee took beautiful photographs, including one of Rory making a face we call "the lip" that became familiar to us as he grew older. The face he made whenever he was displeased or grouchy was present from his first moments after birth! Obviously, he was NOT happy to be removed from his warm, cozy womb, LOL.

This was the exact birth I'd wanted. After a nightmarish experience with an Obstetrician that would fit perfectly in a horror movie, homebirth was the only option I considered. I am sooooo grateful to have had the choice to decide what was best for me. For my baby. So many women don't have that- either because of the laws in their area or because they aren't given the information necessary to different choices. I am so blessed to remember my birth as peaceful and loving and empowering and safe. I would never do it differently. In fact, Rob and I have been trying (unsuccessfully) to concieve for three years now, and the only birth I would ever have is another homebirth. I am truly grateful to the women who have continued on the ancient practices of woman and child-centered care. And I am thankful to Ricki Lake for making this documentary, showing others the blessings that I recieved. The American Medical Association is pissed though, and is threatening to promote legislation discouraging (or perhaps even banning) the practice of homebirth. CHOICE doesn't just mean the decision to have a baby...it also means choosing where, when and with who. And no one should be allowed to take that away from me- or anyone. If homebirth were every truly banned, I don't know what I'd do. Not that I'm in the position of needing to decide right now. So thanks, Ricki, and thanks to all of the other famous homebirthers...doing their part to normalize the practice of birth in America. My birth- the day Rory was born- is the most pivotal moment of my adult life. I am so grateful.

Other famous homebirthers:

- Laila Ali
- Pamela Anderson
- John C. McGinley's (Dr. Cox on Scrubs) wife
- Charlotte Church
- Lisa Bonet
- Josie Maran
- Kelley Martin
- Dave Matthew's wife
- Ani DiFranco
- Joely Fisher
- Demi Moore
- Kelly Preston
- Erykah Badu
- Asia Carrera
- Morgan Spurlock's Wife
- Ricky Lake
- ME!! (I'm am an author after all!)

Ah yes....THAT'S why I don't talk to you!

2008-06-22T00:33:00.003-04:00

I got an email the other day from my bio-dad. Attached was a photograph of me as a child. He sent it to remind me of the good old days, when we were a loving, happy daddy-daughter-duo. It was bizarre though, because he sent a picture of one of the most traumatic moments in my early childhood! When I was about 4, he dressed me up as either Laural or Hardy (whichever is the fat one) because that's what he wanted me to be for Halloween. I wanted to be a princess, but he thought that making his small daughter dress up as an overweight drag king was MUCH funnier. To him, anyway. So, after allowing him (meaning I was too little to really put up a fight) to dress me in his clothes, stuff them with pillows and then smear mascara on my face for a mustache, I posed for this picture. About ten seconds later, I was on the floor- I can't remember if I fell over or if he pushed me- but I couldn't get back up because of all the pillows. I remember flailing and crying, trying desperately to get back up....kinda like Ralphie's little brother in A Christmas Story. He thought this was even funnier and stood their laughing and laughing as I cried and begged him to help me back up. And *this* is the one photo he chooses to send me in order to bring back those nostalgic childhood days. What an ass.

Here's the picture:

We're No Angels

2008-06-18T09:39:00.001-04:00

Since the conversation has turned to angels, for some inexplicable but amusing reason, I wanted to “fact check” myself. Turns out….I was right! According to Catholic Encyclopedia online, this is the Biblical description of the Cherubim:

"Ezechiel's vision of the Cherubim, which is practically the same in the tenth chapter as in the first, is one of the most difficult in Scripture, and has given rise to a multitude of explanations. The prophet first saw a luminous cloud coming from the north; from a distance it seemed a heavy cloud fringed with light and some intense brilliancy in the centre thereof, bright as gold, yet in perpetual motion as the flames of a fire. Within that heavenly fire he began gradually to distinguish four living beings with bodies as men, yet with four faces each: a human face in front, but an eagles face behind; a lion's face to the left and an ox's face to the right. Though approaching, yet their knees did not bend in their march, straight and stiff they remained; and for feet they had the hoofs of oxen, shod as it were with shining brass. They had four arms, two to each shoulder, and attached along each arm a wing. Of these four winged arms two were outstretched above, and two were let down and covered their bodies. These four living beings stood together, facing in four opposite directions, and between them were four great wheels, each wheel being double, so that it could roll forward or sideways. Thus this angelic chariot, in whatever of the four directions it moved, always presented the same aspect. And both angels and wheels were all studded with eyes. And over the heads of the cherubim, so that they touched it with the points of their outstretched wings, was an expanse of crystal, and on this crystal a sapphire throne, and on the throne one resembling a man, the likeness of the glory of Jehovah."

That would be found at http://www.newadvent.org/cathen/03646c.htm for those of you keeping score at home.

Two more interesting facts that I learned while trying to validate my remaining scraps of Biblical knowledge:

1) According to most of the sources I found, Satan himself was of the Cherubic order of Angels.

2) The actual name for those tacky French furniture babies is “Putti”…which I think suits them perfectly. It sounds adorable and vaguely obscene.

3) Eschatology is the study of the End Times. So while I did in fact have to study that too in my “Just-Like-Saved-Only-Not-As-Liberal” Junior High…it was a separate course. I was confusing it with Angelology…which I also had to study.

Go ahead….make a comment…get it off your chest, LOL.

Wedding Bells Are Ringing!

2008-06-18T00:06:00.002-04:00

Congrats to all the happy couples in California! Equality is a beautiful thing. Especially for those who've waited five decades to claim the same rights and benefits as everyone else:

Love is beautiful. Let's all take a moment to celebrate it. Wherever it's found. :-)

Between Your Eyes and Mine

2008-06-16T20:16:00.003-04:00

So, I'm reading this really interesting collection of modern Midrash tales (go ahead L ....start rollin' those eyes!) and came across something beautiful that really made me think. The question was asked "why did the Ark of the Covenant (the throne of God, for those of you not raised in the Judeo-Christian tradition) have two Cherubim facing each other on it, even though the Hebrew people traditionally frowned upon graven images?" The answer was stunning:

Because it serves as a reminder that God is in the space between two people. When your eyes meet mine, there God dwells.

Very, very similar to the traditional meaning ascribed to Namaste: "I honor the place in you in which the entire universe dwells. When you are in that place in you and I am in that place in me, we are one." Also brings to mind the Victor Anderson saying "I am God and God is self and God is a person like myself."

So anyway, that's my happy thought for the day: we don't need to look far away in other realms to connect with Deity. We simply need to look deeply into one anothers eyes and realize that Deity is already and always there.

5 Good Reasons Why I Shouldn't Write My Life Story

2008-06-12T16:08:00.002-04:00

Subtitled: Now HERE’S a creative writing prompt that I can get into!

1) Because my family would disown me. This wouldn’t happen because I’ve been such a terrible person or have so many deep, dark secrets that I risk banishment should they ever come out. Instead, it’s because there are two versions of reality in their world: my moms and my bio-dads. And god/dess forbid I should inadvertently side with one over the other while trying to tell *my* version of events! Silence=Peace in this instance. And if it keeps my mom from finding out I got arrested for shoplifting when I was eleven, more the better!

2) Because no one would believe it anyway. My in-laws already think I’m a little touched in the head. Because I have a fairly wide social circle, I nearly always know someone who has something interesting going on. I have learned that by sharing these amusing anecdotes, I don’t so much amuse my partners parents as I do convince them that I’m a pathological liar. For instance…who else has been held prisoner by Carnies, spent a week in Ukraine without any money, *and* knows someone with necrotizing fasciitis?

3) Because it would totally ruin my image. People who know me tend to think that I fall into one of two catagories: wild child or soccer mom. Both sides would be disappointed if I ever revealed what my life is actually like. Those who think I’m Wild would be really disappointed by how secretly innocent I am. On the other hand, what I *have* done (and yes, continue to do!) would shock those who think I’m sweet and conventional and boring.

4) Because it’s all a blur. I have a hard time remembering what happened last week, or yesterday at work…much less my earliest childhood. The stories that do stick out are usually pretty traumatic- that’s WHY they stick out. The mundane and the sentimental, I’m not so good at recalling.

5) Because it’s not over yet. Is there anything more pretentious than the memoir of a 20-something? Rare exceptions being Prozac Nation, Girl, Interruped, and Little Girl Lost by Drew Barrymore. You’ve gotta be awfully full of yourself to try and write an autobiography at 25…or even 55 for that matter.

BONUS POINTS: If you caught on to the fact that the writers prompt originally said "ten reasons" but I cut it down to five. Anyone have any other reasons why I SHOULDN'T write my life story?

Ennui for Beginners

2008-06-11T19:03:00.002-04:00

I realized today that I have become nearly incapable of being entertained. Seriously. I'm so freaking bored that I think I'm starting to fossilize. This occured to me as I watched my third hour of "I Love the 80's" Vol. 3 on VH1. Yep...when given time to myself, I have been reduced to absorbing pseudo-nostalgic low budget television. I think that this is part of my issue with the creative writing prompts. Yes, most of them suck, but still....a part of my writers block is plain, old fashioned apathy. NOTHING inspires me, or excites me, or thrills me anymore. I need a hobby. I work. I come home...maybe run an errand or two if necessary...spend an hour or two with the family and then go to sleep. I'm too tired to even read anymore- and *that* is a real tragedy.

I need a hobby.

Something inexpensive, interesting, and fun that will get me off my mental ass. I need to make new friends (I adore my chosen family...but I don't get to see y'all very often!) on my side of town. People who do stuff that doesn't involve a television. Seriously. I'm turning into a culture-free office drone and that's NOT what I want to be when I grow up.

So...ideas?

Do Blogs Need a Mission Statement?

2008-06-10T10:42:00.001-04:00

One of my original ideas when I decided to start blogging again was to use this as a space to challenge myself as a writer. In this spirit, I’ve been researching various creative writing challenges. This process has made me realize why I write nonfiction. J Maybe I’m being narrow-minded or perhaps even a smidge lazy, but I’ve read at least one hundred of these suggested writing activities in the past day or so and have yet to find ONE that has inspired me to write. Most of them seem (to me anyway) to be the New Age Edition of Composition 101.

“What does boredom smell like?”

“Describe a conversation your inner child might have with God.”

“Write a letter to your parents explaining how they damaged you.”

Ummmmm….no.

Okay, that doesn’t really sound like I’m taking the whole “challenge myself” part very seriously, does it? I’ll admit I tend to be a bit of a snob when it comes to my own writing. I may not be skilled technically, but I like my “voice”. To be fair to those creative writers out there, I did find some pretty fun ideas at www.creativewritingprompts.com and you can expect to see some of their suggestions popping up here soon. But generally speaking, I’ve come to have a deeper appreciation for my own genre of “editorial nonfiction”.

I think that CopperPom will be a healthy mixture of creative writing, slightly egocentric pontification, and various daily tidbits as they occur to me- see “Interiors by Alice” for an example. One friend did mention that when he got the link to http://copperpom.blogspot.com, he at first thought it read “copper porn”- which does open up a whole new world of potential subjects to write about. Stay tuned to see my future experiments in the English language. (Which would actually be a pretty snazzy mission statement...)

Interiors by Alice

2008-06-09T22:57:00.003-04:00

This is more than a little random, but I'm really excited and have to share. Tonight, my new shelves arrived! What's the big deal about shelving? They make it look like our books are magically suspended in mid-air! I call them my Alice in Wonderland shelves, and managed to get Rob to install three of them tonight. Here are some pics:

I think they are amazing and love they way they turn what would've been a motley assortment of clutter-on-a-shelf into a form of modern art. It makes me happy. :-)

So, Why The Pomegranate?

2008-06-09T20:25:00.001-04:00

I have been relatively obsessed with the fruit since 8th or 9th grade. In 8th grade, I tried to convince my mother that Persephone was greek for Stephanie, and that she should therefore allow me to change my name to that of the Underworld Goddess. Obviously, she disagreed. However, my infatuation with the mysterious fruit continued…I had no idea what it looked or tasted like, and could only imagine what could be so enticing that it would cause an immortal to risk an eternity with Death for just one taste. A year later, as a part of a Rosh Hashanah meal at my (Catholic) high school; our atheist, lesbian religion teacher (but that’s a whole ‘nother story!) served us pomegranates. They looked like nothing I’d ever seen before- seeds like gems, tart and juicy. In that moment, I completely understood why Persephone fell for it. What adolescent girl could resist something that looked like rubies and tasted like heaven?

As I grew older, I came to appreciate the pomegranate not only as a yummy treat, but also as an ancient religious symbol. The Greeks revered the pomegranate not only as a symbol of Persephone, but also of Hera, the goddess of fertility and marriage and of Rhea, primal mother of the gods themselves. The Hebrew people considered it a symbol of the law, and said that each pomegranate contained 613 seeds- one for each law. It was considered by some to be the fruit that Adam and Eve partook of- making it not only a symbol of rebirth and fertility, but of law and knowledge- forbidden and revealed. Perfect for me, no?

Pomegranates are found in the High Priestess card of the Tarot, in the Biblical accounts of the Priestly garb, in iconography from both Pagan and Christian sources. Pomegranates have become insanely popular recently- namely because of their antioxidant properties. They’ve become a much touted potential “fountain of youth” food. But I love them for the sustenance they offer the mind & soul. I’m glad that they’ve been discovered by the masses, because it makes it easier for me to find images & products that incorporate my favorite tasty symbol…but I was a “Pom Person” WAY before the hype.