Lemonade for Life

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

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

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,

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?!?!?!

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

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

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...

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

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!!!

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

Long Time, No Post...with Pictures

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

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

The Good News

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

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

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

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?

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

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