February 26, 2010


kitchen window view

Past Prayers

A long while ago I posted some prayer requests HERE.

I thought I'd bring up to date on how things have been coming along since.

-  Please continue to pray that my lungs stay clear.  I have not gotten a virus so far, praise God.

-  My temperature is now back to normal!  No more night sweats or anything crazy like that.  Back to being my cold, bundled self...

-  I'm off of I.V.s now of course, and have been off of them for awhile.  THANK GOD.  I hate hate being on those things...

-  My left arm is also back to normal!  It is no longer black and blue, and has returned to my normal skin color.  I was so anxious that I had lost feeling in it permanently, because it had been numb for weeks.  I am happy to report that slowly and surely the numbness went away completely and I can use both hands as good as ever.

-  I am still struggling with sleep.  Not nearly as much as I was a month ago... but it is still an issue.  Most nights I sleep decently these days, but then I will sporadically have a night where I just lie awake so very alert.  I have an anti-anxiety medication that sometimes helps, sometimes doesn't.  Sleeping pills don't work at all.

-  Please also continue to pray for NO rejection.  Because my PFT tests are going well, and I feel so great, I have not yet had to have a bronchoscopy.  I am thrilled with this because, really, who wants to have one of those miserable procedures?  Not me!  Anyways, bronchs are one of the main ways that they test new lungs for rejection.  Please pray that even though I do not have to do that test, that there is nothing going on in there that we are missing.

-  And last but not least, we are home!  Seth has returned back to work at his normal job for three weeks now.  I stay home with Levi.  We are back to normal life.  More of a normal life than before.  I'm enjoying putting dinner on the table,  taking Levi to the park and on play dates, making homemade bread...

It is so cool to look back on past prayer requests and trials and to see ones God has carried me through.

My main request now is for a prayer of praise!  I don't think I could thank God enough for everything He has done in my life recently.  There are not enough hours in the day.  Any help I could get -- that'd be great!

Add ons of praise:

My sister is getting out of the hospital!  Very good.

As of today I have a brand new niece!  Seth's brother and his wife had their baby, a baby girl!  What a glorious gift from the Lord!


February 24, 2010


Why thank you Levi for this delicious cookie made from play-doh.  Yum!

February 23, 2010


I'm getting anxious for spring to arrive.
Are you?

February 19, 2010


You guys are just too amazing.

Thank you for all of the nice comments!  I feel the love.  I hope I am half as nice and gracious to people as you guys have been to me.  I read the comments you left, and then when I was falling asleep at night Seth re-read them to me out loud so I could be doubly blessed.  I have been so encouraged by each and every person who has taken the time to write me a little comment or note.  If  God can use a little, sinful, weakling like me it just shows how powerful He is.

Today has been a loooong day.  A good day, I can't complain, but long.  It was a clinic day.  Clinic days are always long days.  They consist of blood drawing, x - ray, PFTs, vitals and of course talking with the nurse and two doctors separately.  Not to mention the dreaded waiting room.  I think it should be more called the black hole or something.  You get lost there for hours upon hours, and I feel lucky to ever emerge.  I met a really nice guy named Mike today though.  We had good conversation, which helped the time to fly by faster. 

I have to start two new medications to help keep all my levels, well, level.  The doctors and I also discussed that I have MRSA in my sinuses, but they don't feel like it needs to be treated as I am asymtomatic.

The good news is I don't have to come back to clinic for a month!  *Sigh* Very nice.  I was very glad to hear that.  The less days spent at the hospital the better.  In other good news my FEV1 rose to 83%!  Up 6 percent from last time!  Love. It.

On the way out I stopped to visit my sister (who also has CF) who is admitted as an inpatient right now.  Please keep her in your prayers.  Being in the hospital is a hard, miserable time.  Even if you have been there many times before, it doesn't get much easier.

My laptop is at the shop getting healthy and fixed up again, I don't know how long it will be there.  I hate to update from this ancient desktop pc, heap of plastic.... and don't want to even attempt to upload photographs from this thing.  I'm trying to avoid going online as much as possible... 

Until next time...

February 16, 2010


Here I am again.  Awake.

I feel the most creative, the most artistic, in the middle of the night -- when I am too tired to do anything about it.

I'm in the mood to walk across the street to Hart's fabric, pick out some Japanese imported cloth, and sew a little bag.

I'm in the mood to do a sideways french braid in my hair.

I'm in the mood to go browse through some antique stores in Soquel in search of the perfect side-table for my living room.

I do plan on doing all of these things, I just can't do them now.  Now as in three thirty in the morning.


Have you ever walked on a treadmill for a long amount of time, hopped off and walked across the room?  Feeling like you are walking across space very fast?  Gliding forward with ease and moving at an accelerated pace.... I love that little rush.

That is my life right now.

Although instead of just feeling like I living at an accelerated pace, I am living at an accelerated pace.  In Yosemite I woke up every morning and just laid in bed waiting for the sun to rise, waiting for the day to begin.  It couldn't start soon enough for me.
Now at home I am working my fingers to the bone.

Cooking gourmet dinners
Organizing every little nook and cranny, drawer and cupboard I come across
Scouring, polishing and scrubbing
Barely taking a second to sit down

And I adore it.

Making up for lost time I guess.  Putting on candles and music.  Being a homemaker.  Our house hasn't been this nice in a long time.  I am starting to wonder what I will be filling my time with after the whole house is cleaned and organized.  Maybe I'll start classes - photography classes perhaps.
A dream of mine is to start my own photography venture.  To be an on location, natural light photographer specializing in young children and families.  What could be better than that?

But there I go again -- being overly motivated in middle of the night, when I should be sleeping.  Maybe it is "safer" to dream and aspire in the wee hours of the morning.  Because in those hours I can't fail.  You can't fail if you don't try, ha.

I don't know how long this high will last.  I hope it lasts forever.  It has been two months I have felt this way.  I worry that something bad has to be around the corner.  I love my life a little too much.  Things are going a little too well.  Never has that been the case for me.  Maybe a couple of summers when I was an elementary school kid.  I do remember feeling pretty carefree back then.  I think.

I concern myself with how best to spend my time.  I have been given an extra helping of time, energy, and motivation -- what I am I gonna do with it?  How can I harness it?  How can I apply it?  What should I do?  It has to be something worthwhile, something lasting.  I just don't know what yet.
Suggestions are welcome.

Speaking of suggestions, I love getting comments.  It is nice to know that people read, and people care.  If I was writing my thoughts just for me, it would be tucked away in a moleskine journal, hidden, never to be seen.  Human interaction, it's a wonderful thing.  Building each other up, encouraging one another as God intended us to do.  My most private thoughts are not on this blog of course - just between me and God.  The other stuff is fun to bounce off people though.
I need encouragement and support to follow through with all of these projects and ideas I brainstorm up in the night.

Especially the one about french braiding my hair.  Haha- just kiddin'

February 13, 2010

65 Red Roses

Please keep this girl Eva and her family and friends in your prayers.
Kindly and thank you.

Our Trip - Day Three

Day 3

Our third and last day in Yosemite it was snowing the hardest.  It was just dumping.  We had another day of playing hard.  It was cold and wet, but all of the fresh snow was nice and powdery for great snowball fights.

Crane Flats is where we spent the day. We, like all of the other days, had the whole place to ourselves.

We made our own sled run, and went down in saucers.

We dug a tunnel and we all three crawled through it, (but not at the same time)

Levi built a hideout fort... 

Gas station.

February 11, 2010

Our Trip - Day Two

Day 2

On the second day of our trip to Yosemite we were looking for something a little bit more structured to do.  We chose to check out Badger Pass Ski Area in hopes to go inner tubing.  By this time a storm had rolled in.  It was raining down below in the valley and snowing up on the tops of the mountains.
Seth had to put on chains so we could make it up there.  When we got to Badger Pass, the inner tubing didn't look that interesting, and the lady who worked there didn't really recommend it for that day.  So we ended up deciding to go cross country skiing!

It was so fun!  Seth, Levi and I had never done it before.  It was pretty easy (with my new lungs)
Only a few months ago I was having trouble walking, let alone being able to ski.  

It was so refreshing.

To breathe in the mountain air
To climb the hills briskly
To coast down and enjoy the freedom

Levi did great -- he was a natural.  He fell a ton of times, but he was also able to stay up for some pretty long stretches.  He had a good time, and asked if we could come back to do it again the next day. 
(He said that everyday about everything we did. Ha.)

An extraordinary way to explore gorgeous mountains.

February 10, 2010

Our Trip - Day One

Day 1

Our first full day in Yosemite we only had one goal in mind:  to play in the snow!  And that's exactly what we did!  We were nervous at first that we wouldn't be able to find any, because the weather was so clear, and we weren't positive there was any left over from the last storm.  There is nothing worse than telling a five year old that you are going to play in the snow, only to not be able to.

The mountains were covered in snow!  As we climbed the mountain and saw the first couple patches of snow were so thrilled.  We  drove up to Merced Grove and played there for the first half of the day.

Snowball fight!

We made a snowman.

Levi was slightly sad to leave the snowman behind when we had to go.

Snowman tragedy. 

The second part of the day we hiked to see the lower Yosemite falls.

February 06, 2010


All day Monday and Tuesday we packed up and cleaned out our hometel after we finally got the go ahead to return home.  We rolled into Santa Cruz Tuesday night.  But it didn't stick.  That's right..... we left again.  Wednesday morning we packed up and headed to Yosemite National Park.

It's fun to be a little crazy sometimes.

It was obviously a very spur-of-the-moment trip... Don't ask me why our vacations are always unplanned... I don't really know why.... they just work out like that.  We didn't know for sure we were heading out until right before we left.

The reasoning behind leaving right away was to take advantage of the few days Seth still has off before heading back to work at his normal job.  And before I switch over to my twice a week pulmonary rehab here in town.  Plus the fact that we needed some good quality family time after being apart for so long.  I had wanted to take Levi to play in the snow for a very long while, and hadn't gotten the chance to.

It turned out to be such a delightful, lovely time.  It was very, very fun and relaxing.  When we got there we realized we had no access to the internet (even though we had our laptop) and not only that, we had absolutely no cell phone reception either!  Even the pay phones were out of order... ha.  It was kinda neat how God worked it out for us like that, totally disconnected from the outside world -- just spending time enjoying each other's company.

If you have tried to contact us in the last couple of days, sorry, we were MIA...

Anyways, I'll write a little more about our trip later...  for now bed is calling my name...

We played hard.

February 03, 2010

Drug Deal

An unidentified CF Husband transfers an unknown substance to another unidentified CF Husband...

February 02, 2010

New Creation

Our very talented friend Guillermo made this beautiful work of art for me for a Christmas / decor for the hometel present.  I feel super blessed and special.  

Butterflies breaking free.  Enjoying their new found life.

Guillermo is a computer graphics artist and works at Dreamworks doing animation for various movies.  He worked on Shrek the Third, Kung Fu Panda and others.  When we go to see Dreamworks films in the theatre we always wait and watch for his name to scroll through on the credits.

The scripture verse that is in the bottom right hand corner is 2 Corinthians 5:17.  It reads

Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new.

Another thing that is super cool is that God has blessed Guillermo with the gift of teaching. He brings the word of God solidly before us at church often.  On the week that he gave us this picture, we were also blessed to hear him teach on that exact same passage and the verses that follow.  Very neat.

Thank you Guillermo -- I love it!

February 01, 2010

Very, Very Good News

Good news!

Yep -- you guessed it!  We can move back home!  We don't have to live at the hometel anymore!
Clinic went very well.  I got to do PFTs and I blew an FEV1 of 77%!!!

To the average person 77% lung capacity might not sound that impressive, but for it being the very first time blowing after the transplant I couldn't be more thrilled with those results.  Prior to the transplant I was functioning (barely) at just 20% lung capacity.  Now that my lungs are not deteriorating my lung capacity will keep climbing, instead of dropping.  A very exciting prospect.  I'm looking forward to beating my score next time, as I get even more fit and my new lungs expand even more.  We are just thrilled.  God has been so gracious to me, to give me this reprieve of good health!

The rest of my appointment went excellent as well.  The doctor looked at my X - ray and he said that it was just perfect and that "It looks like you didn't even have a transplant."  I asked if the air trapping was gone and he said it was.

Here is a picture of my bones - for your viewing pleasure.  Haha.
When I got the transplant they literally had to saw my bone (the sternum) in half to fit the lungs in.  Then they stitched it back up with wire.  The wire stays forever.  If you look closely you can see the wires inside of me....

To top it all off they lowered my dose of Prednisone!  This is also very good news.  As I have said before the side affects from that drug are pretty miserable, so tapering down the dose is something I had been looking forward to.  I will hopefully be sleeping more soundly and losing these chubby cheeks that are caused by the prednisone.  My blood sugars have been a non - issue so far, and with the lowering of the steroids, that will continue to be the case thankfully.

I feel better than I have felt in years.  It is amazing to not cough or do treatments.  My energy level is the biggest difference I have noticed.  I get by on much less sleep, and go throughout the day without feeling tired ever.  I raced Levi running this week - and won.

Thankful doesn't even begin to describe how I feel - it is just pure felicity!  Praise the Lord Jesus.