Hidden Little Treasures

A few weeks back Seth and I were exploring around Palo Alto and found the cutest little treasure of a used bookstore.  Know Knew Books.  We spent hours there searching around.... so much fun!  We got a used copy of George Orwell's 1984.  Seth has begun reading it out loud to me.
(So sweet, huh?)
Seth got a Louis L'amour that has kept him busy reading while I am doing my four hours a week of working out at pulmonary rehab.

We have been to a couple of different thrift stores too -- I have found some pretty sweet stuff for super cheap!  I absolutely adore this purse I found, and I'm rather pleased with these shoes too.

I love finding used little treasures.  I feel very productive when I get good deals on things.  Then I got to thinking -- even my lungs are second hand!  What a trip!  Just like I wiped clean the purse and the shoes and they feel like "mine" now, my lungs are the same way.  I still will always remember and be so thankful to the donor who gave me such an amazing gift of life.  Although I know these lungs were not mine first, they feel like mine now.  It's weird to imagine and realize that they were preowned.

Anyway, we have had an enjoyable weekend at home in Santa Cruz yet again.

Hanging out with friends...
Thrift store shopping...
Baking...
Sewing....

Tonight we head back north.  Clinic tomorrow.

A Silly Little Poem

A strange life, this moment.
What day is it?
This is not really my house
This is not normal
Where is my kid?
An artificial
An alternate existence.
Now I know this new city pretty well
Most things are different
Most tastes, scenes, places, conversations, tasks and prayers
Most thoughts.
Leah is eating chips and makes me laugh
So much love from so many people
So secretly famous
What do you make of it?

And then I look over
And there she is!
On this earth
With me.
As my son says:
Awesome!

Awake

I forgot to take my four o'clock meds yesterday....
Didn't take them until eleven at night.  SO.

Consequences for sure.


I couldn't fall asleep until three, and I'm up for the day at five.
Function well on two hours of sleep?  I guess I'll find out.  I have a very full day ahead of me also -- no time for a nap.  *sigh*

Have you ever tried typing in the pitch black?  I can't see what I am doing.  Maybe it's good practice...

Anyways,
Good morning world!

Wandering the hillsides

Rambling about with two of my favourite men...

6 weeks post check-up

Welp. It's looks like we're still here for another week...

Clinic went well. No bad news, besides the fact they want us to stick around longer. I guess if that's the worst- we'll take it. The reasoning behind us staying here is I still have air trapping on the outside of my lungs. I have had it all along, we are just waiting for the air and the fluids to get reabsorbed back into my body. The weekly x-rays have shown that it is slowly going away, but it is not gone yet. I still have not had a pulmonary function test because the doctors want to be careful and not make the air trapping worse. For those of you that don't know pulmonary function test (PFT) is a test that measures your lung capacity by blowing as hard as you can into a machine. While it's an easy test, it requires a lot of force on my part if I want to get good results. Hence waiting another week to make sure the test results are as accurate as possible. The "plan" is that next Monday we'll be able to go home, provided the PFT results are good.
I feel fine and everything is continuing to go well.

Levi is here with us at the hometel right now and we are just chillin' after a day at the hospital.

Still Waiting

We have been sitting here in the waiting room for clinic for two and a half hours! Yikes! Slow going. The laptop is about to die, and so I thought I'd post a sentence or two before it did.... plus just because we are pretty bored. We'll let you know how it all turns out.

They should be calling us back soon.

Comida Mexicana

(From Seth)
Well my culinary dreams have pretty much come true. With Leah's new lungs have come a renewed appreciation of Mexican food! Now we get to eat my favorite dishes almost every day!
She even eats hot sauce and salsa with chips pretty much daily!
(If I had to pick only one thing to eat it would be the burrito...)

I wonder if Leah's Donor liked Mexican food...

Sisters - In - Law

Have I ever mentioned that I have the best sisters-in-law in the whole world?!?

Because I do.

And anyone who has ever met them would have to agree with me.

They send me the cutest cards and write me the neatest letters and basically shower me with love.
I love you Rachel, Anneke, Enya and Anndrea!

Home Again

Ah... 

After a busy week we are home again in Santa Cruz for the weekend.  Levi is here with us until we return on Sunday night.  Clinic is on Monday morning, as usual, and we'll see what the latest is.  By then it will be six weeks since the surgery.  We are hoping that that means we have a shot at coming home?  For good? 

We'll see....

Thank You

I just wanted to take the time to say a long overdue THANK YOU.

Seth and I are so grateful and we want to just offer our most heartfelt appreciation for all of the support we have received.  We have never been so amazed and humbled by the generosity and love of others as we are now.  God has used you guys more than you know.

Thank you for your prayers...
Thank you for reading this blog...
Thank you for leaving comments...
Thank you for visiting...
Thank you for calling...
Thank you for notes and cards...
Thank you for caring...

We are so blessed by the support of family, friends, acquaintances, and even strangers.  I am astounded and overwhelmed by the kindness I have experienced.  My heart is just bursting with gratitude - thank you so much.  Thank you for supporting us physically, spiritually, financially and emotionally.

The well wishes, prayers, and support from you guys mean the world to us, and we could not be doing this without you!

Thank you.

I apologize for the lack of updates!  I am feeling very well, and have been super busy.  I have barely had a chance to sit down at a computer.....

Hopefully today I'll get a chance to write more.

Sayonara

Yes!   No more breathing treatments!   I never thought I would see a day come when I didn't have to hook up to these machines.  I have done breathing treatments daily since before I can even remember!  Last night Seth packed 'em up and moved 'em on out. Good riddance!
Trashing of all of my old medications has felt pretty marvelous.  While my body still has Cystic Fibrosis, my new lungs never will because they have different genes.

Do we even fully grasp yet what this means?
Hours and hours more per week of time.... !

Homies

Well we finally got to go home today!! Mind you, this is only temporary - we will still have to go back to the apartments in a couple days - but here we are with our son in our own house and we all just had some great sushi from our favorite restaurant. All three of us are relieved to be here - together - and in our real home! We plan on being busy this weekend - bike riding and/or hiking? Levi said that "[everything] is just getting different... the house is changing because Mama got her new lungs..." Praise God!


- Seth

Steroids.

Ugh.  Yuck.

Prednisone is one of the worst medications I have been on in my life!  That is saying a lot too because I have been on my fair share of medications.....
I have to stay on them though.  They help keep my body from rejecting my new lungs.  Over time the dose will taper down tremendously, right along with my chubby cheeks hopefully.

I lay awake at night.  For hours.
Mind racing
Can't turn my brain off
Thinking way too hard about things...

During the day I am rather hyper.  I really don't mind being hyper though -- Our days are jam packed.

A fun day is in the works for tomorrow!  A mini road trip to Sacramento is in order to visit my best girlfriend Tyanna and her brand new baby boy.  I'm pretty excited.

In other news, we are still not allowed to go home yet.  Batting my sad puppy dog eyes at the doctor didn't work.  Just kidding...  I didn't bat my eyes .... but we did ask, and they did say "no".  The doctors do say that I am doing well, but they don't let anyone go home before six weeks.  That's the minimum.
We got the A-okay to go home for the weekend though- which is terrific!  I'm looking forward to picking up Levi from my parents on Friday and spending the weekend together as a family.  At our house.

San Francisco

San Francisco....

That is precisely where we spent all day. What a glorious day! First off Seth and I attended church at Reality San Francisco.   If you live in, or near the city you should really go and check it out!  What made it extra sweet was to see my dear, old friend Tim and the amazing Joenses.

Since we were already in the city, we decided to mosey around and see what we could see. We parked somewhere above Ghirarelli Square and ended up walking all the way to Pier 1 Port of San Francisco.

I don't know how far of a walk that is, but it was a long way!  Love.

We boarded a Ferry headed for Sausalito!  Riding on the roof was so chilly and breathtaking.

When we arrived at the other side of the bay, we sat in a coffee shop and attempted to teach ourselves how to play cribbage.  Attempted being the key word. Haha.

Muggins!

We came home on the F train.....

Rehab Yesterday

Rehab went well!

At first I was a little worried that it was going to be very slow, and boring, but the wonderful therapist soon realized that I wanted to do more.  I had to keep my heart rate under 140, but was allowed to do as much as I wanted under that number.

I ended up doing the treadmill, recumbent bike, squats, lunges and weights (bicep and tricep curls)
I am also not allowed to lift more than five pounds, so they were light.

I am hoping to finish up the rehab program at Dominican Hospital.   They can just transfer me there, when I get sent home.

All in all, I didn't feel too limited.  I really liked the bike, and the leg stuff - feel the burn!  I'm really glad that they kept track of my heart rate.  It let me do the maximum allowed without "over-doing it"

Ready To Rumble

Today I begin outpatient pulmonary rehab.  They asked Seth over the phone if I am able to walk for ten minutes.  Little do they know I walked around a mall for three hours last night, ha.  I'm imagining that it will go well.

We'll let you know...

Adventure

ADVENTURE

ad·ven·ture

ad·ven·ture [ \əd-ˈven-chər\ ]
a : an undertaking usually involving danger and unknown risks b : the encountering of risks

Adventure.  I think that word could safely sum up this past year for us.  It has been one wild, crazy, intense, scary, surreal ride for sure.  It has been a difficult, tough road to get to where I am right now.   Sometimes Seth and I just sit and talk about how bizarre things are and have been lately.  On the flip side, it may sound weird, but it is kind of fun.  Our lives are never dull!  It seems each day we have no clue what is in store for the next day, but we wake up and everyday brings something new.  We are living a sometimes rather difficult life, but we are really living.  

A few weeks ago, I had to get the last of my chest tubes pulled.  The chest tubes were about the size of a penny in diameter and went about six inches deep into my body.  Needless to say, getting them pulled is very uncomfortable, because it felt as if someone is ripping out my intestines.
I felt like a cowboy!  They came in, gave me a shot of dilaudid (modern day morphine) and then I just had to "bite the bullet" so to speak as they just ripped them out.  Those western movies, where they would take a swig of alcohol and just "go for it" kept popping into my head.  I keep joking that, I needed a piece of leather or a stick to bite down on.  Anyway, I ended up feeling slightly heroic after it was all said and done.

Maybe romanticizing about all that we have been through is just a coping mechanism, but we get amused imagining we are like pilgrims on a trail that few have tread on.

This year in particular I know very many CFers who passed away.  I lost a good friend, about two months ago.  She is in my thoughts and mind continually, and I am left feeling like a soldier in a war, and wondering why I am the one left standing.  She got accepted for a transplant a day before I did, but our lives took two very different turns.  Why?  I don't know.  I don't know why she is gone, and I am left standing.
(As a side note, she was a Christian, lived her life for the Lord, and I am confident that she is in heaven and much better off than me right now...)

Waiting on the transplant list was one of the hardest times in my life.  The risks before you are overwhelming at times.  The unknown is frightening, and all you can do is pray that your story turns out to be a success story.  But there is no way to know.  It embodies the definition of adventure.

As 2010 begins, and hopefully the worst is behind us, I am looking forward to safer and more enjoyable adventures.... maybe spelunking or white water rafting.....

A life with no adventure at all?  No thank you!  I wouldn't have it any other way......

Update and Progress

As Seth mentioned yesterday I had my weekly transplant follow up appointment. The frequency of my  clinic appointments will decrease over time, right now they are still once a week.  Everything is going well, as far as I know!  Very cool.  I got my sutures removed!  I was a little nervous about having to do that, after my last suture incident that was quite painful.  They came out easy and pain free though!  Very relieving.

My sleep has been so poor this week.  I was averaging about 3 hours a night (a side effect of prednisone)  I pretty much was going insane.  Thankfully, praise God, I slept a seven hour stretch last night.  It felt so great.  I think Seth is hoping I get more than seven hours a night though, as he is walking around in a daze.

Another awesome thing is that I got to end all of my antibiotics yesterday!  No more I.V.!  This is very exciting because now, as of yesterday,  I am completely free of every type of tube or anything.  Just back to skin and bones, for the first time in three weeks.  Ahhh... freedom!

One of my friends asked me yesterday if I was getting cabin fever.  I told her no and then went on about all of the things I had done that day.  Seth and I have been so busy.  Obviously I don't write every detail of everyday on here, but we are out and about constantly.  Probably we will be even more so now, since my I.V.s are done.  Also, I have been such a lucky girl to have been having just awesome friends come hang out this week and last week too.  Every day feels like a party -- haha.

This week my parents have dropped Levi off here twice, to hang out with us.  It's been really nice.  He likes the hometel.  The first thing he did when he saw it was run around to all of the light switches to figure out which switch turns on which lights.  After that, he looked around for secret passageways. Then after that he arranged the patio furniture so that him and I could take our drinks outside and drink together.  (He thinks that every time we drink anything we should sit on the patio)  So we sat on the patio and sipped our tea/juice box together.  I'm looking forward to all being together again at home.

Today we might head on down to Santa Cruz again and run errands.  Sometimes we don't really know why we still have to be up living here, but they have not given the go ahead to go home yet, so we just make day trips as needed.

That's it!  It feels wonderful to be making progress!  Pre - Transplant, I had to work very hard just to try and stay healthy, and kept declining anyways.  Being in a place now to actually have progress and improvement feels excellent.  I'm loving being busy and productive...

Fun Dips

A visit by an amazing friend...

Just Like That

Leah got her stitches out, finished her i.v.s and has two less other meds to deal with as of today! Lookin forward to seeing Levi soon. Stoked!

Off the Top

Our life is changed now.
Things we thought would always be the same, struggles we assumed we would always deal with
are now suddenly gone. Four hours a day of therapy and breathing treatments are suddenly unnecessary. We have gone from infection and disease ravaged lungs to healthy ones in a matter of hours. Why? I don't know, but I am so thankful. Apparently God has more for this family yet... I know there will always be struggles ahead - and we have been dealing with different ones each day - and we will always be fighting lung rejection - but it is amazing to be a part of this and to see God giving Leah a reprieve from the disease that had almost taken her from me twice this year. Each day is one of progressive revelation - realising more and more how our lives are and will be changed. At the same time it seems like I got the old Leah back! I see aspects of her personality that have been suppressed for years by her disease finally shining through again. It is amazing to see the support and love out there that I didn't even know existed from family and friends. It is amazing to imagine what our lives have in store for us. Right now our lives seem anything but normal, but it is an adventure and I am thankful to get to be a part of it.

Three Weeks!

Thank God for three weeks with Leah's new lungs!  So far they are working well with her body.

...And thank God she finally got more than three hours of sleep last night too!  This has been an issue probably brought on by the prednisone and we've been working on it daily.

We have been blessed to be able to hang out this week and last with some friends affected by CF.  A sweet time.  Thanks Lindsay, Casey and Hope!

Another appointment tomorrow; we'll see what the doctors think of us.

Gonna take a walk outside today
Gonna see what we can find today...