Living In Grace

Are they TRYING to kill us?

I had every intention of writing a post tonight about the lovely, informative visit with the Neurologist today.

The one that we were 20 minutes late for, and it took another 30 minutes to get into.

Last night, and again this morning, John reminded the kids to RIDE HOME ON THE BUS.

We will NOT pick you up from school.

Lo and behold, miracle or miracles, we got home an hour after said bus should have dropped them off.

No kids.

No bus,.

No voice mail on the home or cell phones.

We were able to get in contact with the bus office, and found out that Kati got on the bus looking for Jonathan, didn't see him and said "Oh, I forgot we aren't supposed to ride the bus home".

And she left the bus.

A few minutes later, Jonatahn gets on the bus and the driver gently reminds him that Kati said they were being picked up, to which he respnded "Oh. Yeah. Thats right."

Did I mention the part about the TWO times we said RIDE THE BUS HOME.

Yeah.

So, John is on his way back to town, an hour and a half after school got out.

There is no way to get in touch with anyone at the school so we are hoping that they are just sitting there.

In the cold.

Learning a lesson.

UPDATE:

Kid's just called. Two hours later Ugh.

They are safe, and at the school.

Ay yi yi.

It's going to be a looooong night.

It's Bloggy Carnival Giveaway Time !

Welcome to Living in Grace! I'm so glad you came by!!

My blog is all about my life. As the byline reads ":It's Breath by Breath Laugh by Laugh" around here.

All. the. time.

I'm a stay at home mom with two teenagers, Kati who is going to Sweet 16 in a few weeks (*sigh*) and Jonathan, who is 14, and close to 6 feet tall.

End Stage Renal Disease and home dialysis has put me on the waiting list fora new kidney, so that just adds to the fun around here! Feel free to rummage through the archives and read up a bit.

Click on the button for a great place to start!

GIVEAWAY INFO:

In honor of being #1314 on the Mr. Linky list for the Bloggy Carnival, I'm going to be giving away a giftcard to the store of your choice (I need to be able to visit them nline to order it for you) For:

$13.14

To win, it's simple!

Leave a comment below. To help me get to know you better, and you to know me better (isnt' this FUN!):

First: Tell me  2 really cool things about you.

Then, ask me anything.

Seriously-

Ask me anything you want!

It will be fun! I will get to know you and I will have some bloggy material to help you get ot know me!

Also, be sure to leave me a way to get in touch with you.

And, to quote Shalee (who happens to be one of my most favorite people in the whole wide world):

" Oh, and if you don’t answer the question and you’re the selected winner, I’ll throw your name down, stomp on it and pick another one.  Well, I won’t really stomp on it, but I will select a winner who takes the time to do this one small thing.  That’s just me being ornery.  Welcome to my world.  (No really - Welcome!)"

For more great giveaways, click here!

Transplant Progress: Living Donor Candidates, or Applicants

Evening everyone!

I spoke with the Transplant Unit in Denver today. I officially am re-activated on the waiting list, with 815 days on the list!

This gives me 1 point towards my tally for listing.

My high PRA (or rejection rate) gives me another 4 points towards the "magic transplant" number.

YEAH!

5  points. Top of the list!

This is GREAT NEWS.

So, here is what we need to know now.

If you have applied to be a living donor, or are interested in being a living donor, I need you to comment below. If you prefer to remain private, I totally understand, and you can simply drop me an email at jkbach (at) comcast.net.

For more information on the process, click here.

And , if you all could be praying for the financial end of this, I would appreciate it. We continue to make plans and work towards our goal of housing and transportation for mself and the donor (if needed).

Again, thank you. I am not one to ask for anything. It's against my nature. Accepting help is not my thing ... ask anyone who knows me.

This is for my kids, my husband.

And yes, for me.

Selfishly, I want to watch my kids graduate, go to college.

To watch them fall in love.

To help Kati choose her wedding dress, to touch her face while she wears the veil.

To lose sleep the night before either of them starts a new life with their God-ordained mate.

To hold my grandchildren.

To sit with John when we're old (ok, well "older") and look back at the miracle God has given us.

That, my dear friends, is my Life Plan.

So, thank you.

Thank you from the deep, bottomless well of my heart and soul.

Confession.

One thing I've never been really open about?

My weight.

*collective sigh*

Every woman thinks there is something wrong with her body, right? Too fat, too thin  too tall, too short, big hips, no chest ... the list goes on.

We beat ourselves up, daily, when we look into the mirror or catch a glance as we go by a window reflection on the street.

There is a way we compare ourselves to other women, and look for faults to ensure we are "prettier" in our own minds.

Right?

Or, am I the only one that's mentally unstable like this?

Growing up, I was (in looking back now) a healthy weight for my size. Of course, at the time I compared myself to ever other girl and found myself lacking.

When I was pregnant with Kati, I ate for all. I put on a bit more than I should have and then became toxemic. From a Thursday appt. to the following Tuesday's appt, I gained 21 pounds of fluid. And of course, the nurse was more than happy to loudly announce the time frame and weight gain to the entire waiting room.

Thank you.

Thank you very much.

Total weight gain with Kati?

5 pounds baby

25 pounds baby fat

45 pounds fluid

You do the math.

About time I reached the 40 pound weight loss mark, congratulations. Yes, that's a positive on the pregnancy test.

Welcome back to the frailly, Jonathan and 30 pounds.

Both of which have hung around since then.

Thank you.

Thank you very much.

I started dialysis, got approved for the transplant program in Denver but was "on hold" until I reached a certain BMI count. Problem is, I'm real susceptible to sugar (which is the main component of PD fluid) and WHAM! BAM! Thank you Ma'am!

30 ponds in 2 months gained.

Practically a record.

So.

I had me a situation. I had to figure out how to lost weight, understanding I Was already taking in about 600 calories a day in just doing dialysis.

Unfair?

Heck yeah..

That's like 3 Snickers bars or something. If I have to eat those calories, should be able to enjoy them. Not do dialysis and eat an apple- and be done.

So for the last 12 months I've been fighting the fight.

And today, I'm happy to announce that I Reached a milestone.

As of today, I've lost 75 pounds.

Seventy-five.

From a size 26/28, to rughly an 18/20. I tried on John's shirts today, in a Large, and they fit. Decently.

My next goal?

To be able to wear one of his dress shirts, comfortably, to bed.

Like I used to.

Al long, long time ago.

I still have a ways to go, but honestly? I never thought this day would come. It's been really hard, although having surgery and a rough recovery seems to have kick started my metabolism or something ...

But.

Today, we celebrate.

Seventy-five.

What are you struggling with,
or what body image issue have you overcome (or working at)?
 I'm sure others would love to offer support or celebrate with you!

Let's talk!

100,000 friends

100,000 People Waiting - What It All Means:

Numbers are a funny thing. In golf, you work for a low number; in most other sports, you hope for a high number. The world of donation and transplant has a similar numeric duality. We want the number of organs we recover for transplant to be high. On the flip side, we want the number of people waiting for an organ transplant to be low. Unfortunately, the inverse is our reality.

Recently the number of people registered on the national organ transplant waiting list topped 100,000. And another name is added every 13 minutes.

When I started working at Gift of Hope nearly 13 years ago, I remember learning that more than 44,000 people were waiting for an organ transplant. The number was incomprehensible to me because I just couldn’t grasp how we were going to get enough organs for all of those people? Over time, the list kept growing, and growing, and growing. And my frustration grew along with it! I was working hard – side-by-side with so many other dedicated people in our community – to eliminate the waiting list, and we were losing ground.

And now this!

This is not a game, and high numbers here don’t signal victory.

Please take a minute to mourn the sad news that there are now 100,000 people waiting for a lifesaving organ transplant. Take the next minute to register to be a donor (if you haven’t already), and then take another minute to email all of your friends and encourage them to register too!

Together, we can make a difference in helping save these lives.

-Dave

World's Biggest Walk

Walking for a Cause - World’s Biggest Walk!

Everybody knows that exercise is a key ingredient in the recipe of good health.

Throughout the year, organizations are constantly creating events to increase awareness and raise funds for their particular issues.One particular foundation has decided to go global with their event this year to create the World’s Biggest Walk.

The World’s Biggest Walk Foundation was founded with the mission to create a global event that brings community attention organ/tissue donation and transplantation.

This year the Walk will be held on October 25th beginning at 12pm (Greenwich Meantime) and participants will walk a 5K. Currently, sixty one walks are planned worldwide. It’s only a day away, but visit the World’s Biggest Walk website to see which state’s are participating and to register.

Currently, the following state’s have walks planned: CA, ME, NH, NY, NC, OR, UT and VA. Below is a video talking about the World’s Largest Walk from one of the foundation’s board members, Liz Hosford.

-Joslyn

Transplant: The Process.

This 'diva' post, wants to hang out up top for abit :)

Scroll down for more current posts!

So, where are we in the process?

Sigh.

We still wait.

And wait.

Several of you have asked how this works, so I'm going to try and answer it to the best of my limited ability.

Currently, I'm "active" on the waiting list at Denver Porter Transplant. I'm near the top of the list, due to this being my 579th day on the list.

Basically, I could get a call anytime and have to be in Denver. In hours.

However, because I am a "highly sensitized" (and sensitive LOL) patient, this means that I am "allergic" to most people's organs. My rejection count (PRA) is currently 85 out of 100. Meaning, of 100 people that could donate to me, I am "allergic" to 85 of them.

So, my odds of finding a match that way are slim to none.

We need a living donor. Several of you have volunteered to be tested, and we are in the process of that now. It's a one by one process. They will test one person, who they think is the best possibility, and keep testing until we get a final yes or no. If it's a no, we move to the next person. Each one takes weeks. I'm sure in some cases it would go faster, but I'm not "sick" enough (Thank you Jesus) for that need.

We are also looking to list with Legacy Emmanuel in Portland, OR. We received a letter today that they have my application/referral from my team and should contact me within 3 weeks. Since I have most of my testing for qualification done already, we sent it all along. If they approve me, I will still have to go in for some testing.

Then. I wait for "committee" where they review every candidate and decide yes or no on each one. They entire transplant group has to sign off. Always a worry, that someone won't like somethng.

If approved, then we begin two steps:

One, I go through IVG treatments for a month. This will hopefully reduce my "allergic" reaction to 20 ot of 100, or so.

Secondly, we start testing living donors again, one by one.

The goal is to have someone ready by the end of the month long IVG treatments.

Then, we transplant.

And celebrate.

Big time.

What are the concerns?

First, financial. We ar trying to get transportation arranged and have it ready for "the call".I have to be able to move fast, or I have to say no and they move to the next person. And I go back in line.

We've talked about it at length, and I will have to go by myself. It will be impossible for all of us to go for the amount of time I will need to be either place. Usually it 3-4 weeks then you're released to go home.

Then there are the trips back and forth for followup the first 6 months. After that it spreads to an annual thing, so that would be do-able.

There is also travel and lodging for the living donor. We need to provide that.

Secondly, the kids. We don't want to pull them out of school for that length of time, so John will stay behind. Man, I'm going tom miss them. Im nver been gone that far away, for that long.

Lastly,  finding a living donor. What if?

Does any of this make sense? It's such a complicated puzzle, and we feel so lost in all of it at times. Well, most of the time actually :)

I know I say it alot, but you HAVE to know how much your prayers and support mean to us. I can't begin to explain it. But, thank you thank you thank you.

This blog started off as a way to get results out without a hundred phone calls all the time.

God knew it would be so. much. more.

Amen.

Homecoming! and other random things off the camera

First of all ... let me just say-

HELLO JONATHAN !!!

There.

(Note to son: it's never a good idea to taunt me with "Hey mom, I read your blog on my iPod. Be careful what you say". Now, put the iTouch down and go get your homework done, or chop some wood, or something productive. Love you, mom)

So anyway!

I dumped the pictures from the camera to the computer ... always a fun time.

You never know who grabbed the camera, when, and of what you will see pictures of.

In no particular order , I give you -

The Life of Living in Grace.

with pictures.

Wiley and Lacy. Fighting for attention. or food. or something.

The view from our road. At 50 mph. In the rain. Cause, I wasn't driving and was bored. So, I take pictures.

Sapphire (Saph, Gray and ferral, princess.Depends on who you're talking to 'round here). She's the Persian Princess. And she knows it thankyouverymuchyoumayleavenow.

OK. CONTEST!!!! How many layers are in this cake. Kati is quite proud of her accomplshment (and that it didn't fall over).

Pioneer Woman. PW. P-dub. My Kitchen Hero. Go here. Download. Cook. Be adored by all. (and y'all, Thanksgiving is coming up. You have to go through her Thanlsgiving archives. Oh. My. Word. And yes, Shalee, I'm brining again this year with the cranberry juice et al. Nothing says Thanksgiving like a glowing pink turkey.)

Jonathan. Freshman. First day. Rock on, dude!

Kati. Sophomore. First day. My baby. *sigh*

Homecoming. 2008. Their first high school dance. (Kati made her dress. Black velvet. All pretty and everything. Someday, when she is a famous designer it will be worth something. Can you autograph velvet I wonder...) Notice that, even with 3" heels on, her "little" brother is oh so much taller? YOu can hear him grow at night.

Seriously.

"The" dress.

"The" hair. She loves her hair like this. We set it about every night. And see those beautiful eaarings? She designed and made them, too... cute and talented to boot.

Well, that's about it.

What are some of the weirdest surprises you've found on your camera?

Update

Evidently, I'm just ornery.

But, you knew that.

Gall bladder- perfect.

liver - perfect.

Pancreas - perfect.

Peritonitis (however far fetched, but still tested for) - Negative.

Pain - check.

Nausea - check.

New meds - check.

Bed - check.

So, we know nothing more, and will "monitor" for now.

Thanks for your encouragement and prayers. We feel them. Mightily.

Bottom line, I'm here for homecoming.

And that, dear frineds, is all that matters :)

Pictures to follow later this weekend!

Be blessed.

Have you heard the one about the stomach flu diet?

Yeah, well.

We thought we had the stomach flu this past week. Probably did, in fact.

I will spare all of you the gory details of the last 5 days around here.

Cause I love you.

Just use your imagination.

Rinse, repeat.

It's been about 5 weeks since surgery, maybe six. I lose count of the days as I sleep through so many of them.

The good news? I'm down 25 pounds in those 5 weeks.

Maybe six.

I am aware that Homecoming is this Saturday, and I have two teens all aflutter. Their first one.

It's huge around here.

Kati is making a velvet dress, that is beautiful.

Very "One Night in Paris" and all.

Jonathan is contemplating his first date, maybe.

Sigh.

John and I?

Between velvet, lace and Paris, blazers, tie or no tie and all, we are contemplating that mom may miss the whole thing.

Cause, mom may be having surgery again.

Tomorrow.

Maybe Monday.

Seems the "slow to heal" "Maybe a hernia" pain we chatted about (OK, whined and complained incessantly about) may not be that at all.

Looks more like pancreatitis or more excitedly?

Gallstones.

Ain't life a bowl of cherries, or what

You know you're jeaouls.

You do.

Today was spent heaving up a banana (evil fruit, it is, it is), getting blood and an ultrasound.

Unfortunately, we ran late at the lab, so Feldman had to leve for soccer practice before we got results back.

We should get the call in the morning.

So, if you could be praying for some mighty big divine intervention? I'd really li,e to wake up healed, and be here for Homecoming.

I mean, have you seen John do a bun and makeup?

Yeah.

Big time prayers, folks.

Big tome, prayers.