L'Shana Tova

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

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!

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

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

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

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

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!

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