Faith , Destiny , Abundant Life

2007-10-10T23:02:00.000-07:00

Well let me start out by sayings its been too long since I have posted sorry for that. Life is here is nothing with a saga of events and the last couple of weeks have been just crazy. between being sick with some kind of virus for about 2.5 weeks and several trips and calls to my Dr's in O.C. and at USC. and I how much God better be in control here cause in my 40 experience the medical world needs His help for sure. My perception on the process is becoming clearer each passing day. I'm watching several CF patients who have had lung transplants and learning from there ordeals what to expect and also the questions to be asking during recovery. My daughter just had her birthday and is still acting like she runs the castle. I've been playing guitar more lately its my way of Crying out to The Lord for strength and grace to breath each day one more day until surgery or miraculous healing takes place according to God's timing. Well check back as often as you can i'm still and will be adding things more regularly now.

2007-08-22T18:25:00.000-07:00

This came today attached to an Email it was powerful and definitely timely for me see what you all think and please respond with your thoughts

One day a while back, a man, his heart heavy with grief, was walking in
the woods. As he thought about his life this day, he knew many things
were not right. He thought about those who had lied about him back when
he had a job.

His thoughts turned to those who had stolen his things and cheated him.
He remembered family that had passed on. His mind turned to the illness
he had, that no one could cure. His very soul was filled with anger,
resentment, and frustration.

Standing there this day, searching for answers he could not find, knowing
all else had failed him, he knelt at the base of an old oak tree to seek
the one he knew would always be there. And with tears in his eyes, he
prayed:

'Lord- You have done wonderful things for me in this life. You have told
me to do many things for you, and I happily obeyed. Today, you have told
me to forgive. I am sad, Lord, because I cannot, I don't know how. It is
not fair Lord, I didn't deserve these wrongs that were done against me and
I shouldn't have to forgive. As perfect as your way is Lord, this one
thing I cannot do, for I don't know how to forgive. My anger is so deep
Lord, I fear I may not hear you, but I pray you teach me to do the one
thing I cannot do: Teach me to forgive.'

As he knelt there in the quiet shade of that old oak tree, he felt
something fall onto his shoulder. He opened his eyes. Out of the corner
of one eye, he saw something red on his shirt. He could not turn to see
what it was because where the oak tree had been was a large square piece
of wood in the ground. He raised his head and saw two feet held to the
wood with a large spike through them.

He raised his head more, and tears came to his eyes as he saw Jesus
hanging on a cross. He saw spikes in His hands, a gash in His side, a torn
and battered body, deep thorns sunk into His head. Finally he saw the
suffering and pain on His precious face. As their eyes met, the man's
tears turned to sobbing, and Jesus began to speak.

'Have you ever told a lie?' He asked?

The man answered - 'Yes, Lord.'

'Have you ever been given too much change and kept it?'

The man answered - 'Yes. Lord.' And the man sobbed more and more.

'Have you ever taken something from work that wasn't yours?' Jesus asked?

And the man answered, 'Yes, Lord.'

'Have you ever sworn, using my Father's name in vain?'

The man, crying now, answered - 'Yes, Lord.'

As Jesus asked many more times, 'Have you ever'? The man's crying became
uncontrollable, for he could only answer - 'Yes, Lord'.

Then Jesus turned His head from one side to the other, and the man felt
something fall on his other shoulder. He looked and saw that it was the
blood of Jesus. When he looked back up, his eyes met those of Jesus, and
there was a look of love the man had never seen or known before.

Jesus said, 'I didn't deserve this either, but I forgive you.'

It may be hard to see how you're going to get through something, but when
you look back in life, you realize how true this statement is.

Read the following first line slowly and let it sink in.

If God brings you to it - He will bring you through it.

When Jesus died on the cross, he was thinking of you! If you are one of
the 7% who will stand up for Him, forward this with the Title 7%

93% of people won't forward this

2007-08-19T15:06:00.002-07:00

Welcome to the new look here at my blogspot.com site
So bear with me as I make adjustments to the site . Here's to a fun voyage down this road together.
Its now Day 425 and waiting so somethings do change others don't.

2007-07-21T12:20:00.000-07:00

Hi Everybody!!

It's been months since I posted anything on here.

Most of you have been updated on the new site on CARE PAGES.

If you do not know anything about the new site, please email me or make a comment on this site and I will fill you in.

I wanted to share with you all briefly on a little bit of family life before I close this blog down.

So enjoy the pix!!

Above you see Kenny with the kids on Father's Day.

This is Abigail, with Kenny and GrandMama and Aunt Bonnie. Abigail just performed a patriotic song in the school talent show. She shined like a star!!

Here we are doing some family celebrating at BJ's Pizza down by the beach. It was Peter's Birthday and Kenny's was just a couple days prior. We enjoyed a yummy lunch and then spent the rest of the afternoon on the sand!

Here is Zay with Peter, trying on Zay's new wrist band while at the restraunt.

"HE IS SOOOO KEWL LIKE DAT!"

Here is Peter!! A big 3 years old now!!

He loved the sand and found 101 things to do with it. (Most of which I will not mention here! =)

So we love you all! Please leave a message or email if you need any more info on us. This site will likely be closed down in a week or so.

2007-04-23T19:52:00.000-07:00

CHECK OUT THESE SPRING CHICKS!!

So here are the yougns' on Easter Sunday...

We enjoyed a Mexican flavored meal and of course, an egg hunt and bubbles and chocolate and all the other fun things Easter can bring. We were extra blessed by the arrival of a new little one....

Deedra and Nate Stewart gave birth to thier 3rd child:

Savannah Rachel Stewart

But more on that later. As far as Kenny is doing, we are still holding strong in the no colds/flu department. We just did some tests locally that will be sent out to USC and they'll be contacting us on the results. When Kenny did his 6 minute walk, his saturation dropped down prettly low, and that bothered him a bit. But until it bothers his doctor here or the docs out at USC, I guess we are still okay. We just continue to wait and pray and believe.

I'll post more as results come in.

Blessings to all!

2007-04-03T08:49:00.000-07:00

Spring is Definately Here

RESURRECTION DAY IS COMING!!

Here's a quick post to update you all. Today Kenny and I are going out to USC to meet with the doc and the social worker. Kenny will have to do some blood work and hopefully,

they can get his blood gas without too much pain or drama.

If all goes well, we will stay for the support group meeting tonight at the hospital.

That will depend on his energy level... we'll play it by ear.

So, all in all, it should be an easy trip.

I will try to get a quick post up within the next day or so and let you know the details.

2007-02-19T11:38:00.000-08:00

YES, WE ARE STILL HERE!

FORGIVE MY LAPSE IN POSTING...

So here we are in MARCH!! Can you believe it?

DAY 258

I have not been a very good poster. Every once in awhile it just feels like there is no new news. So I just wish there was something amazing to report. Truth is, Kenny is goin' a little stir crazy. Do you realize we've hit the 9 month mark in waiting!! Kenny feels like he has a better clue what all those pregnant mom's go through.....without the extra weight of course. He needs to keep buzy, but doing what, exactly....? We actually need to purpose ourselves to get out more. Especially now with this crazy sunshine!

Well, our picture here shows our newest addition...a new dinning table that seats ALL of us quite well. We also enjoyed a fancy Valentine's Dinner at this table recently. We made mizithra pasta with chicken, and red velvet cupcakes and raspberry cheesecake bars for dessert....it was a good time.

As for updates...Kenny still hasn't been scheduled at USC for any testing. However, he has been talking to his coordinator and he may be doing some of the testing they would like to see here locally at his regular Doctor's office. Vastly easier, really.

Something that would be greatly appreciated is your prayers for our van. It has been giving us some transmission trouble and we're concerned it's not done causing trouble in this area. It's been a good van for us and we really can't be without a vehicle. Please pray your blessings over this provision of God in our life, that it would stay strong and last long!! I don't know what we would do without it.

More soon.....

2007-01-30T10:16:00.000-08:00

THE REMAINS OF THE DAY...

KENNY ON CHRISTMAS MORNING (this really is a good morning wave, not 'talk to the hand'! )

PETER..."WHAT'S A CHRISTMAS ANYWAY? I WAS FINE SLEEPING."
ANAIAH...READY AND WAITING FOR THE DRIVE HOME TO HER OWN BED.
LYNETTE..."NO REALLY, I'M AWAKE. JUST RESTING MY EYES."

(WE DON'T THINK SHE'LL BE THE ONE DRIVING)

"IF ANAIAH GETS TO SLEEP ON THE COUCH, I WANT TO TOO."

(GIVE AUNT BONNIE 2 MORE MINUTES AND SHE'LL BE OUT TOO!)

DON'T BE FOOLED, ETHAN SLEEPS WITH HIS EYES OPEN.

"SORRY, ALL PHOTO OPP'S ARE REVOKED UNTIL FURTHER NOTICE. I NEED MY BEAUTY SLEEP."

PETER...WAITING FOR GRANDPA'S VISIT, ALONG WITH KOREY AND EDWARD. HE REALLY IS STILL PLAYING WITH HIS NEW CASTLE, JUST IN S-L-O-W--M-O-T-I-O-N.

So that's the wrap-up of Christmas at our house. It was one of the best. I think what we all enjoyed was doing the larger family celebration on Sunday, Christmas Eve Day, so that everyone could enjoy thier Christmas Day in thier own home with thier own little family. GOOD STUFF!!

2007-01-21T12:33:00.000-08:00

CHRISTMAS HIGHLIGHTS II...

SAMSON AND ISAIAH'S FAVORITE MOMENT WAS THE UNVEILING OF A LONG MYSTERY... THEY TRULY HAD NO CLUE WHAT WE MIGHT DO FOR THEM.

COUPLE THAT WITH THE FACT THAT WE WRAPPED IT ABOUT FIVE DIFFERENT TIMES AND WAYS, AND THEY WERE COMPLETELY THROWN!!

BUT ALL WAS WELL WHEN THEY SAW THOSE GLEAMING GUITARS.

"ROCKSTAR" HEAR WE COME!!

SINCE THEN WE'VE ALL BEEN SUFFERING FROM 80'S FLASHBACKS AND VARIOUS QUESTIONS LIKE..."WHO IS LEONARD SKINNER, DAD?" AND "HAVE YOU EVER HEARD 'MESSAGE IN A BOTTLE'? IT'S BEEN A KICK!!

2007-01-18T10:30:00.000-08:00

CHRISTMAS HIGHLIGHTS...

This is Peter seeing his ginormous dinosaur for the first time. The fun existed for him on multiple levels. Mostly the castle and the guys...

Star Wars was a HUGE his with him...
...and his new Motorcycle. (Thank you G-Ma and Grandpa!!!!)

For Abigail the big hit was Tinkerbell. Tinkerbell clothes, backpack, books, you name it!

This is her new best friend 'Icicle'. Likely the softest bear ever. She is sporting her Tinkerbell watch and fairy dress.

Tune in soon for Samson and Isaiah's highlights!

2007-01-09T19:23:00.000-08:00

DAY 200

Well everybody, today marks the 200th day we've been waiting

on the lung transplant list. We praise God that Kenny has been healthy while waiting and life has been relatively normal

(whatever that is)!

I ran into an old friend yesterday...

(Hi Jenny!)

It got me thinking about my life...

The ways my life has changed for the better and for the ways my life

has become, let's say more challenging.

Do you want to know something funny?

I am more happy now, at this more challenging stage of my life,

than I was 7-8 years ago, WITHOUT the same struggles.

Sure, my overall volume level is MUCH higher, my dramas are a bit MORE dramatic, the sickness is definately MORE sick...

but not everywhere or everything. It was very encouraging to me to think how I was as a person years ago, when this friend knew me well, and think how vastly more healthy and stronger I am today than I was then. Even in the re-telling of the various hardships my family had to endure, I knew I was discussing

'weighty' material, and I was okay taking that little trip down

memory lane, without the pain, emotion or heartache attached to it.

I don't doubt that this 'holding pattern' we are in right now is

buffering much of the stress and strain, but I still feel greater strength. Not only in myself but in Kenny, our marriage and our parenting and even the kids on individual levels. It is truly a blessing and a lot like opening a present you found hiding behind the tree weeks after Christmas.

Anyway, just a "Dawn of Redeeming Grace" from my heart to yours.

2007-01-02T16:06:00.000-08:00

LET THE GAMES...BEGIN!!

The Holidays were definately a blur of excitement, family and fun.

It began with Lynette and Durodami coming up from San Diego with the kids on Saturday. We spent the night hanging out, eating and chasing children. Sunday morning we reconviened for easy breakfast, presents and laughter. There was wrapping paper everywhere!!

Dinner became seriously secondary and I think we sat down to eat sometime after 8 o'clock pm. Both Lynette and DeeDee are still dealing with the adjustment of multiple children. (My excuses are multiple and well known to most!) Anyway, our ham and beef roast were awesome and we couldn't have lacked for anything (except possibly a maid-servant or two!!) Here are the family pix...

Our love to all and to all a Good Night!

2006-12-28T19:17:00.000-08:00

MERRY CHRISTMAS EVERYBODY!!

Well, here's the gang o'kids!! We piled 'em all up on the little step here to catch some shots.

From left to right we have: Anaiah, Abigail, Peter, Isaiah holding Hannah, Ethan and in the back you see Samson holding the newest addition, Gabriella Kairos Joscelyn Lisk!

Permit me to back track a bit. It's been since Thanksgiving since I posted anything and I appologize. Some of that was camera trouble and a post looks so much better with a pic on it that I was delaying any new information. However, we have that problem solved and I am looking foward to catching everybody up to speed. You are likely to see several Christmas photos because MUCH LIFE has happened in the last month especially.

What I feel is the most important news to share is regarding Kenny!!

For those interested, he has been waiting for his lungs 189 days today. That's a lot of days. We did get a call from James, a social worker over at USC. He's the guy in charge of calming the anxiously waiting. Anyway, he let Kenny know that his name has come up a couple of time as of late. Lungs had become available on at least two different occasions and Kenny was a candidate for at least a little while! Okay folks...

THIS IS HUGE!!

It was terrifying and exciting to hear all at the same time. It was like having a dry run with out having to leave the house. Keep in mind, this doesn't mean we are any closer than we were before, but it feels so much better than the feeling of being left on the shelf and forgotten. So, we continue to wait. Kenny is staying healthy and that is key. We will likely have another evaluation some time in January and have new info to report. More soon........

2006-12-08T08:44:00.000-08:00

THANKSGIVING RECAP

We pray you all enjoyed your Holiday. We had turkey coming out our ears!

Kenny's folks were doing well and it was nice to celebrate with them all that we have to be thankful for. That second photo is Eddi, Kenny's Mom along with Korey, his youngest brother.

For those of you who don't know, Kenny's Mom was diagnosed with leukemia more than a year ago and has already gone through bone marrow transplant and other treatments.

It's been a very long time since we've all been together.

It was a very good day.

2006-11-19T16:40:00.000-08:00

2006-11-16T13:36:00.000-08:00

THANKSGIVING 2004

Here's a little walk down memory lane.

We all love these pix because we're all holding eachother's baby!!

Kenny and I held Anaiah-- Lyn and Durodami's girl, then you see Lynette and D holding Ethan, who belongs to DeeDee and Nate, while they hold Peter-- our most recent addition.

My how things have changed!

I don't think Kenny could even lift Anaiah now,

let alone the fact that they're all too squirelly to be held long enough to snap the shot!!

Kenny and all of the rest of us are doing well.

There's talk of holiday plans and how little or much to do.

Avoiding sickness is a top priority, but not missing out on family time is right up there.

We are hoping to spend Thanksgiving with Kenny's family.

Many of you know Kenny's Mom, Eddi, has been very ill, having undergone

bone marrow transplant for her cancer. It's been hard seeing them at all due to her weakened immune system. Thankfully, his parents are feeling well enough to have us all over.

I think it's been more than a year since all of his family has been together at the same time.

So we'll pray everyone stays healty and go for it!

ENJOY YOUR THANKSGIVING EVERYONE!!

MAY YOUR HOMES BE BURSTING WITH FRIENDS, FAMILY AND GOOD FOOD!!

GOD'S BLESSINGS ON YOU ALL!!

2006-10-30T10:41:00.000-08:00

CARE TO SIT DOWN AND CHAT AWHILE.............?

What a gift quiet time is.

Just sitting by yourself and listening to the sound of

nothing.

I was given the precious gift of time.

I enjoyed sweet conversations and peaceful moments

with my King.

I was restored and refreshed and blessed by friends and family and our GOD.

(**sigh**)

I don't think it a coincidence that I recieved this precious gift the very same week

ONE NIGHT WITH THE KING

was released. What are the chances of that?

So this post has little to do with Kenny, but everything to do with him as well.

I got ME better and filled my tank so I could better take care of my family.

I felt like the Lord spoke sweet secrets to me to help me on our journey.

It was an amazing time.

Oh yeah, I almost forgot!

I got something replaced that was really badly damaged...

2006-10-15T19:05:00.000-07:00

KENNY IS NOW A THERAPY

GRADUATE!!

As of October 13th, this past Friday, Kenny completed his 6 week pulmonary rehabilitation course!!

It was challenging to him and I both...even Peter, actually.(His nap schedule was totally wacked out.)

However, Kenny has come away with a lot of HOPE and confidence in what he can and will be able to do.

He learned that he is capable of doing a greater degree of activitiy than he ever knew.
He was taught how to pace himself and when to stop the excercise before he goes too far into exertion.
He learned how to take his meds in a way that gives him the maximum benefit.
He was around 6 other men, all with varrying degrees of breathing challenges. He gained empathy for those whose lives have been radicaly effected by illness within a short period of time vs. living with the disease your whole life.
He gained a greater sense of how important it is for him to stay active in order to better oxygenate his body and increase the recovery process after his surgery.

So, all in all it was a great experience for the whole family. We got more accustomed to frequent appointments within a week and the pace required for all of us to maintain. Also, Kenny's scores on everything he tried had improved 100% or more when done again at the end of the course. MISSION ACCOMPLISHED!! JOB WELL DONE KENNY!!

2006-10-02T12:20:00.000-07:00

Why am I smiling..........? Because it's Fall!

My favorite time of year is here. It's not AS hot, and that hint of coolness is in the air.

I've got my fall decorations out and candles lit and it actually feels good to have a blanket over me every once in awhile. I feel like baking again and the smell of apples in the air is like a cinnamon-warm comfort.

(~~~~**sigh**~~~~)

Updates? Not really. Peter got a cold that went into double ear infections, but otherwise we are all healthy and happy. The school year seem off to much better start...PRAISE GOD!

Kenny is still doing his pulmonary re-hab 3x a week and that has been very

eye opening. He has his good days and bad days. He's learning how important it is to be active, even with dimminished capacity to breath and limited strength to move.

His greatest challenge is likely not becoming overly discouraged on his bad days when he can't keep his saturation up enough to excercise for more than a few minutes at a time.

There is much going on for everyone right now...you can feel it in the air.

I can sense the anticipation of things to come, like counting down the days until Christmas.

I pray the Lord decorates your season with hope and joy.

2006-09-10T00:11:00.000-07:00

Just reflecting on some things...

I was thinking about how to explain
and remind the kids of what 9/11 is all about... I had a brief conversation with Isaiah the other day about it. We talked about how the impact of the blast was so sudden and powerful that literally, one minute a person was there and the next...gone, nothing left.
We had one of those moments where it was just quiet between us.

Life is so mysterious. Sometimes we live in such safety, we forget to live. Other times we are acutely aware of our need to live in such a way as not to subtract days from our very life. At the end of the day, what do we remember most?
I remember enjoying the sound of my kids laughter...
teaching them how to do new things..like cooking eggs that are actually worth eating...
hearing Peter learn how to say new words that his mouth isn't even big enough to say...

Ok...it's a no-brainer that trials build character. It's also a trite and predictable prepared answer to those hurting or walking through one of thier darkest hours. Here's the deal for me,
I'm just thankful guys! Every day that goes by, every season...my whole family is together and we're doin' life together. So this post may seem "cheezy" for a moment. That's okay, it's probably more for me than anybody else. I know that if I don't take a minute like this and just allow my heart to overflow with grattitude to my God for what He's done and what He will do, then on my low days, when stuff is really sticky...there might not be that thing I can reach out for like a handle and pull myself up with.

SO HAPPY DAY EVERYBODY!! LIVE LARGE!! LOVE TO ALL...

2006-09-07T15:20:00.000-07:00

Mommy!
My turn please...

So it's been awhile since the last post...
School's back in session and, you guessed it...I'm glad!

Otherwise things are moving along well. Kenny did get approved for the pulmonary re-hab program. Praise God!! We have a busy few weeks in front of us, but a healthier tommorrow to look foward too. So far they begin with some education and the physical excersie kicks off next week. I think the best part of this whole thing is seeing Kenny's confidence raised. He can do MORE than he thinks he can and he's learning how to do it SMARTER.
More soon..

2006-08-22T18:57:00.000-07:00

Can you believe these pictures??

We just ran across these and wanted to share them with you. That little boy up there is Kenny about 38 years ago during his first initial hospital stay. A record breaking 14 months! The other cutie is his late brother Kevin. He passed away about 21 years ago. These two rugrats became quite famous in thier day. Can we all praise God for the advancements in technology today!!!???

So, the update:

Our appointment at USC yesterday was long and a bit difficult. When Kenny began his breathing tests he was noticeably decreased in his ability. It was very dissapointing to him, regardless of whether or not this sort of result pushes him up on the UNOS list. It's only been 3 months since he did these tests last. That spells out a fairly rapid deterioration.
BUT!! WE KNOW GOD IS BIGGER THAN THAT, DON'T WE NOW!!

His Doctor also got fairly severe with him regarding keeping himself active in some way. It's hard to wrap your mind around the need to excercise and stay strong when your physical body is actually weakening. Nonetheless, that is what he must do. You can keep him in your prayers as we wait to see if he qualifies for pulmonary rehab. This will be an intensive effort to re-condition Kenny's body so he can more easily recover after surgery. It will be 3x a week for 4 hours a day. That's more action than Kenny has seen in a year or more!! Even if the rehab doesn't work out, we have to help Kenny to excercise and strengthen his body and put on weight. Your prayers in this regard are highly coveted.
More soon...

2006-08-21T08:13:00.000-07:00

Happy Monday to all!

We celebrated another Birthday this past week. Samson is becoming quite 'da man'! He's already taller than me, but he never misses an opportunity to lay his head on my shoulder and say "I love you Mom". He's a good kid.

Samson has always been a pasta hound, and there was plenty of that!
It was a great night and such a blessing to him to have his friends and family there.

Other updates include Kenny's Dr appt. tomorrow out at USC. He'll be doing the 6 minute walk again and some breathing tests. This is a good aspect of the newly formated program for transplant. They will continue to monitor Kenny this way every few months so that his allocation number on the UNOS list can be changed if his condition worsens or improves. So we'll give you the update on that soon. We've noticed that his ankles seem to be swelling more frequently. This can be a sign of more serious issues, so we'll be bringing that up with the Doctor tomorrow. Your prayers are most welcome for perfect timing and stable health until the Lord arranges Kenny's transplant. Our love to all!

2006-08-06T22:37:00.000-07:00

It's late Sunday evening...

It's been too long since I've posted anything and I'm thinking about many of you friends and family who are miles away. Things are going well right now. No one's been sick and Kenny is maintaining his health well. The kids are enjoying their summer break and I'm just about ready for school to start again. =)

We had the privledge of attending a lung transplant support group this week. It was held out at USC and was attended by those waiting for transplant and those who are on the other side of their transplant. I met a woman 8 lung years old! It was a tremendous feeling being surrounded by people all in similar circumstances. A few things stood out from the meeting...
Thank God!...we were told not to stress out about sanitizing/sterilizing our home before Kenny could come home following transplant surgery. We had heard otherwise and the task had me a bit overwhelmed to say the least. The resounding response from multiple people was..."Live your life!!" I think we can do that.
Also, preparing ourselves for the amount of meds and the routine that goes with them post transplant. Kenny has been fortunate enough to only require 2-3 meds a day. After surgery (and for the rest of his days) he'll be on anywhere from 15-20 meds a day. That's alot of perscriptions, but a decent trade for the chance to breathe deeply again.
So, for those of you who don't know it already, there are a lot of people out there, each of them with a story to tell. I'm learning to respect and appreciate all of them and even sense a sort of satisfaction/fulfillment in sharing the journey with them, just by taking the time to listen...or read that book about Lo Detrich or the various other articles and survival stories on line. It's somewhat painful, but the sense of strength and connection I get from doing so is unsurpassed.

With that in mind I'll leave you with a link to a story called The Spoon Theory. It's become a fast favorite around here and an effective way to understand a person severely challenged in their physical condition. (It's a fun and easy read too.) I hope it blesses you. Love to all...

http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php

2006-07-26T10:20:00.000-07:00

KENNY IS ANOTHER YEAR OLDER TOO!!

Before all the Open House and Birthday maddness, we took the opportunity to celebrate Kenny's 42nd Birthday. At his request, we feasted on cheese burgers and home made french fries. We tipped back a few IBC Root Beers and enjoyed the time!!
Who would have thought this man would come so far! I asked Kenny what he would like to do after surgery and recovery time. He said he couldn't wait to pursue music and sing again.
I don't think the Rocker in him will ever grow old!!

2006-07-24T13:10:00.000-07:00

HAPPY 2ND
BIRTHDAY PETER!!
We just celebrated Peter's birthday with friends and family and...oh yeah...DINOSAURS!! It was a blessing of the ginormous kind.It was great seeing so many friendly faces. We had an Open House opportunity going on at the same time, but more on that later.
Peter has been an incredible source of joy and energy for us all. He also has the wonderful tendency to just want to "chill out". If he's not running around growling like a dinosaur, you're likely to find him reclining in his rocker watching Lazy Town or Land Before Time. Lately he's been enjoying his Birthday wagon and 'big red' the T-Rex. Other than an Awesome Birthday Event, it may also be remembered as the hottest day of the summer!

2006-07-19T15:40:00.000-07:00

Here is some more Kenny history...

What we have here at the top is Kenny just around Father's Day of this year. He's getting shaggy, huh? The glasses are new. (and much needed!)
The second is a little more than a year ago while we were still living in the high desert. Shortly after this he got sick and ended up in the hospital over Easter. That's Abigail lovin' him up a bit. Being apart over the holiday was really hard on him and the kids! He was in the hospital once more before we actually moved out of the high desert to seek better health care and be closer to family and support. Although hard, this was a good move for the family.

BIG HELLO'S TO ALL OUR HIGH DESERT FAMILY!!
We miss you all so much!

2006-07-18T21:15:00.000-07:00

A History Lesson...

It has come to my attention that even some of our closest friends may not fully understand how Kenny arrived at this place of needing new lungs. Many of you have gotten to know Kenny at different stages of his life and along with it, varying degrees of health and vitality. So here's a little bit of history and hopefully answers to the why's, what's and how's.
Kenny was diagnosed with his extremely rare disease at 3 yrs of age and has been on his 50 ft. leash ever since. The illness is known as pulmonary alveolar proteinosis and is essentially a build up of fluid in the small sacks of the lung wall, creating chronic breathing problems, including shortness of breath, and frequent infections. His brother Kevin was born with the same disease only worse. (That goes beyond extremely rare and into ubsurdly rare.) Unfortunately, Kevin's disease took his life at 18 years of age. This was the catylst for Kenny to come to know Jesus as his Saviour and Lord. That was 21 years ago and the doctors are ever so surprised to see this man marry and father 4 healthy children!!
But now...
When Kenny and I married 16 years ago he was only on 2 liters of O2 and he could even take it off for a few minutes for showers or other various activities. Now his liter flow is bumped up to 8 liters 24/7!! His ability to preform otherwise simple tasks has been completely compromised. Kenny's condition has been further complicated by time. Past pnumonias and bronchitis, etc. have left scarring behind. This fibrosis has caused his lungs to lose their elasticity and he has lost lung volume. In fact, he is operating on less than 23% of his lung capacity. So getting sick is scarey. Walking from the house to the car is a marathon. Showering is enough activity for the whole day. Compounding these issues is the stress on his heart, also know as pulmonary hypertension. Kenny commonly feels a varying degree of chest and or back pain because of this. The hypertension issue is a serious one, but also fully curable by transplant.
So this is where we stand today.
In past years, transplant surgery was offered to Kenny, but it was never considered because of the odds and because his general health and quality of life were high. We aren't getting those same reports anymore. We've had doctors project some fairly crummy odds for Kenny without the transplant. And so, here we are. We thank God He doesn't pay much attention to odds the way doctors do. However, here's some of the reality we are facing:

*Without the surgery doctors don't give him a greater life expectancy than 1-3 years. They also said the last days wouldn't be pretty. This information was given to us last fall!
*The success rate of the dual lung transplant surgery is much higher now than recent years. The first year is greater than 80% and 5 year life expectancy drops down to around 50%.
* We are acutely aware of the necessity to keep Kenny healthy and strong until the call for transplant comes. It would be unimaginablely devastating for him to come this far and be passed over because of a strange fever or cold.

That said, we are still hopeful and will remain steadfast in our confidence that God is bigger than all these details. He holds us in the palm of his hand. We have our moments of weakness, but right now even some of that is healthy. There is a delicate balance to be learned in facing the gravity and reality of your circumstances without forgeting the ENORMITY of the God who stands behind you every step of the way. GLORY BE TO GOD ALONE!!

2006-07-01T15:39:00.000-07:00

Recognize these faces? That's my sister Lynette and her girl along with Abby. We're doing some memory makin'!

Banana Bread, especially Lyn's, has become a family favorite.

Seeing as how there may be some times when there simply is only waiting and more waiting to report, I thought it might be a good idea to make sure everybody gets to know eachother. My sister has been absoultely instrumental in helping us all organize and prepare. She's been hiking up here regulary from her San Diego home, helping with Dr appointments...etc. Her love and support are immesurable!! You can't tell from the photo, but her and Durodami are expecting another baby early fall. (We bless them!!) Lynette is also spearheading a caregiving effort for the kids once Kenny goes to surgery. For those of you who don't know it, Lynette ranks right up there with superwoman!

2006-06-26T14:33:00.000-07:00

Another Monday...
It's been several days since I've posted anything. There is not much of anything new to report other than everyone is well and we'll be celebrating birthdays and 4th of July soon.
At this point, I think we are ready to circulate this blog site. I feel ready, I hope I'm ready! I'll be sending out a mass email giving the link to friends and family. Also, come transplant time I'll be handing off the posting to a few trusted friends so that immediate information is available without having to track down somebody on the phone for updates. Keep in mind that the goal for this whole effort is to increase the prayer cover and support for Kenny during difficult and challenging times. There are places to comment on the posts, go for it! We can pass on verbal hello's and thoughts to Kenny through this method. Our goal is to also make even the person who is miles away and can't be here feel included in the process. Thank you for your friendship and support of Kenny and our family. Your prayers are highly coveted at this time and GREATLY APPRECIATED.

2006-06-19T20:16:00.000-07:00

Happy Monday.... not much to report today.
We learned from our transplant coordinator that we need to live with a bag packed and the ability to leave for USC at a moments notice. We have to be able to be reached by phone at all times of the day or night. Kenny will have more regularly scheduled check ups at USC to monitor him for changes that could change his score on UNOS placement. Otherwise.........we wait. (and make blog posts.)

2006-06-18T17:22:00.000-07:00

HAPPY FATHER'S DAY KENNY!

Last night the Mom's took us out in honor of Dad's day. We ate a wonderful dinner on the patio at Red Robin. The kids took turns toasting to Kenny and his "awesomeness" at Daddy-ing. It was a good night. Making memories has become my favorite pass-time. Today we actually slowed down a bit due to Isaiah and Peter both having fevers. We napped and watched movies and had an enjoyable, restfull day.

2006-06-16T19:45:00.000-07:00

IT'S A GO! WE ARE ON THE UNOS LIST!

We heard today from USC that Kenny is now listed!
It feels somewhat bittersweet today. The transplant coordinator did talk with us about a somewhat increased risk during Ken's surgery due to his unique anatomy. They will have to use a different technique and it will increase his recovery time. They project a minimum hospital stay of 14 days. Please pray with us as we prepare our hearts and bodies and household for what is to come. Timing is everything and that is in the Lord's hands.
For those of you still a little uninformed, the UNOS list stands for the United Network for Organ Sharing. There is a link to this site on this page. UNOS recently changed thier criteria for transplant and now gives everybody a score based on health informtion and test results. This number changes as the patient's heath improves or decreases. It is a far better system and we have been warned repeatedly to be ready. They have seen patients like Ken go to surgery in as soon as two weeks. One rare case was same day! They of course, can give us no timeframe, but it is more an issue of months, even weeks vs. years. HANG ON EVERYBODY!! GOD IS ON THE MOVE!!

2006-06-16T14:28:00.000-07:00

Here are some recent pix of the family. Samson and Isaiah are both in jr. high. Abigail is in grade school. Peter will be 2 very soon. We were actually able to get everyone in a family photo on Mother's Day weekend. A marvelous accomplishment!!

2006-06-15T10:17:00.000-07:00

WELCOME TO THE BEGINNING OF THESE PAGES!

We decided it would be easier and help keep people up to date on what's happening with us if we started a web page. It's not my strong suit, and although Kenny enjoys tinkering around with these things, he's not up for it right now either. However, there is always the chance he could take it back at some point. For now, I am posting up here whenever there is new information to share. So, consider the sourse when viewing these posts! =)
Currently, to catch everyone up to speed, we are waiting for word from USC as to whether or not Kenny will be considered a candidate for dual lung transplant surgery. We have gone through numerous tests and questions..some of you know that his blood tested posative for
Hepatitis C a while back. This was a blow and could have easily pulled us completely out of the running for transplant. The doctors need to know that Kenny can be strong enough to recover from the surgery and there can be no underlying diseases or other organ issues. Fortunately, a second blood test revealed no viral lode and they are not as concerned about the Hep C, although they will always be watching for it.
The second part of this was his chest anatomy. The surgeon expressed a great deal of concern as to whether or not they could preform the surgery with his chest bone protruding this way. The blessing in this is that the chief of surgery was called in to examine Kenny and make the final decision. The benefit could then be that when it does come time for surgery, it could be the chief who does the deed for Kenny.

So, to wrap things up... we wait and prepare ourselves for whatever could come next. That is why we invite you to join us in the journey. Both Kenny and I believe that transplant surgery may in fact be the miracle we have been praying and hoping for.