just so you know...

2012-02-07T16:06:00.000-08:00

Dandelion Wishes

2012-01-31T17:53:00.000-08:00

FDA Approves Cystic Fibrosis Drug - The Wall Street Journal

Kalydeco, Drug That Treats Root Cause Of Cystic Fibrosis, Approved By FDA

This news is big. HUGE in fact. This is the first time that there has been a drug to tackle the root cause of Cystic Fibrosis and not just a symptom. People throw around the word CURE left and right, and this my friends is the closest thing to a cure that I believe we will see.

More than 1,000 mutations in the CFTR gene have been identified in people with CF. I have the classic and most common ΔF508, and one other mutation. This drug, which was approved by the FDA today is for only one of these mutations, G551D, as far as I understand. While G551D is NOT the most common, it causes CF in about 4% of the CF population, some 1,200 people in the United States. I have heard of other CF friends (G551D's) who were participants in the trial phases of Kalydeco, and who claimed it was immensely helpful.

Just to clarify, since this is my blog, this drug will probably not affect me. Not only am I the wrong mutation, but I am post transplant and so my health worries lie elsewhere, such as infection/rejection. Even if they were to develop a drug for ΔF508's, in a way it is too late in my own life. At most I could imagine it helping perhaps with my sinuses and G.I.

But that is not what I want to talk about.

I want to talk about my childhood prayers. My wishes on every birthday cake. My wish for every dandelion I blew into the wind.

A cure for CF.

And although I am fully aware that this is not exactly a cure for all CFers, I now have hope for that dream. For those babies being born today with the gene mutation of G551D, it is coming true.
This might snowball into other drugs being developed for other CFTR mutations.

If just one child can be spared the suffering and pain I have had to endure because of Cystic Fibrosis, than my wish has come true.

1,200 people being CURED. What an awesome, amazing, exciting day in the CF community.
And ΔF508 is next guys, just wait and see. Correcting G551D shows that it is possible.
We're coming up!

If anybody reading this has ever donated money to the Cystic Fibrosis Foundation I want to tell you, as I hold back the tears - THANK YOU. It certainly has helped a hell of a lot during my lifetime!

Thank you God, from whom all blessings flow ...

Lemonades

2012-01-11T21:28:00.000-08:00

I love having a lemon tree. Picked, washed and squeezed up some fresh lemonade from our yard this afternoon. It was a gorgeous day, a flip-flop, walk-to-places-instead-of-drive kind of a day. And if anyone near wants some lemons, swing by, because there is still more than plenty hanging on our tree.

"I love you making lemonades" - Aiden (to me)

2012-01-06T19:09:00.000-08:00

song of the day. been slinking around the house to the non acoustic version of this song all week long. pretending i'm sexier than i really am.

today is the last day of christmas break. i love levi to death - but i am so ready to send him back to school. i don't know how people homeschool. props to ya all.

it's more fun this way

2012-01-03T12:20:00.000-08:00

Finalization!

2011-12-30T20:19:00.000-08:00

Hello! I am way behind on update type posts.....

Aiden is adopted! Yay. Everything is done! No more paperwork, social worker visits, etc.

It feels good.

Aiden is now related to us as if he had been born to us. The finalization was November 18th - oh what a fun day it was. We all came to the courthouse, told to invite as many friends and family as we wanted. My good friends Myrna and Christina came with their kids. My grandparents drove all the way up from Southern California. My parents came and so did Aiden's old foster family, Beth and Lily and their kids.

We arrived at the court, I had to stash my weapons (mace, haha) in a bush on the outside of the building. We all went through the metal detectors and then crammed in an elevator to the courtrooms. The mood in the air was such a contrast to the last time we had been in court. Back in April when Aiden's biological mom was losing all of her rights to him, it was a very sobering, sad day - even for Seth and I. This time was different. The atmosphere in the air was one of happiness and joy.

The county did such a great job of making it super special for us. They had a table of refreshments, they gave Seth apple cider, myself a bouquet of flowers and Aiden a bouquet of balloons. The newspaper photographer was there to capture the moment, along with two other photographers. We sat down as a family, they arranged us, took a few shots and five minutes later handed us a framed family portrait with the date printed on it.

When it was our turn to go before the judge in the family court, everyone could come in. All of the normal courtroom rituals and rules seemed to be thrown out the window for this very special occasion. We did not stand as the the judge entered the room, the bailiff didn't call the court to order - everything was very casual. Every child in the room was allowed to pick out a stuffed animal to take home.

The judge walked up to Aiden and asked why he was here. He said "a party"(hehehe). She then proceeded to ask who I was... he said "my mom" and then she asked who Seth was. He said "my dad"
The whole thing was adorable and sugary sweet.

We signed a paper to finalize (even Mr. Aiden got to sign) and then we raised our right hand as we swore to love, protect, care for Aiden and treat him as our own. Then the judge introduced us to her mother and proceeded to tell us that she was in a quilting group and they had made a quilt for Aiden!

We then gathered and took a few snapshots to remember the special day by.

Afterwards we came back to the house and had a potluck type party. Aiden had so much fun he said he wanted to go back and do it again.

Also because of national adoption day being Saturday the nineteenth the newspaper decided to run a front page story and the family they chose to feature was ours! Also the Watsonville Patch did an article about us too. Here is the link to the Santa Cruz Sentinel if you want to check it out:

Forever family: Parents, children seal lifelong bonds in Watsonville courtroom

to do list

2011-12-22T16:19:00.000-08:00

( and finish Christmas shopping... )

2011-12-20T22:16:00.000-08:00

the annoying thing about having a really bad cold is it slows you down to the point where all you can do is lay around and think. but at the same time your brain is too foggy to think. it really is a pretty lame catch 22 if you ask me.

noël

2011-12-10T23:01:00.000-08:00

We chopped down a tree today! Way too late for my taste, but we have been in and out of town like a fiddler’s elbow. Christmas music, hot chocolate with marshmallows, candles and love made for a great day.

2011-12-07T19:24:00.000-08:00

For Marjie

2011-12-06T22:00:00.000-08:00

For Marjie. (She is always encouraging me in my writing)

- - -

Fiery red hair and sparks of wildness tamed into an ever gentle sweetness. A quiet warrior - pain. heartache. Things are good, things are great, things are not so great and there a smile remains upon her face. Lips stretched across her teeth as if holding the world together, holding her family together.

The amount of lullabies that have passed through those lips, the amount of stories read, memorized. Reciting without the need to glance down at the pages upon her lap. Sparking children's imaginations, feeding their artistic souls.

Nurturing,
Nurturing,
Ever Nurturing.

Her glamourous, old hollywood beauty catches you off of your guard. Timeless gorgeousness as a sunset. Grace and kindness with every bat of her eyelashes and with every giggle. A little girl, a mother, a grandmother all wrapped up. Eternal.

Legacy. Children, like jewels, adorn the crown which is her glory. Strength, honour, loyalty.

Blushing.
Humble.
Loved.

my pancreas hurts

2011-12-05T20:01:00.000-08:00

or an ulcer?

maze

2011-11-13T21:51:00.000-08:00

- james jean

Shooting Friends

2011-10-28T19:08:00.000-07:00

Two of my favourite things are:
1) Friends
2) Taking photos

Put them together and I am a happy girl. That's what this is below ... a photo shoot I did of some very good friends of mine. I have known Jalen since he was just a kid himself. He is full of attitude, determination and bursting with personality. Stacia is an awesome, responsible mom, and has a great sense of humor. And little Harmony is so cuddly and is cute as a button. I could snuggle with her all day. I love them tons.

As I said earlier in the month, this October has been beautiful and warm here in Santa Cruz. It was slightly nippy the day we took these but not bad for October, not bad at all. I had so much fun shooting them, and they have asked me to take their wedding photos down in LA next summer. I am already looking forward to it.

Swing

2011-10-24T17:44:00.000-07:00

This past summer after browsing the interweb, feeling full of crafty inspiration I came up with the idea that I was going to build a swing for my backyard. I saw a photo of a regular chair with the legs sawed off that had been painted, hung and converted into a nice little swing. I posted it to facebook stating my intentions to go build one of my very own.

Well that very same week I learned that my great grandma was about to pass away. I put all plans on hold - and traveled with my mom and kids to Southern California to go visit GGGG (for short) one last time. It was a really hard week emotionally. We had a sucessful trip - made it down to Oceanside in time to give our goodbye hugs.

When I arrived back up in Santa Cruz I found this chair waiting for me at the back door and attached to it an absolutely perfect card from my dear friend Julie. She had scored it from her bargain hunter landlady and very thoughtfully dropped it off for my craft project.

What a sweet surprise. I immediately went to work. Seth let me use his power tools... but I didn't want him helping me - I wanted to build it on my own.

First I sawed off the legs. That part was fun.

Then came time for sanding. I did the large areas with an electric sander and the more intricate parts by hand. I had to take a couple of trips to the hardware store to buy primer, paint, chain and a 2x4.

. . .

I bought spray cans for both the primer and final coats of paint thinking that it would be easier that way, but if I could go back in time and do it over I would totally use a can and just brush it out. That way I could apply the paint thicker. The wood just soaked up the paint and so I had to apply way too many coats of both the primer and the final colour.

I finally settled on candy apple red. I painted the 2x4 portions to match and then screwed the chair onto the boards for a base, and for somewhere to hang the chain from.

I really love the way it turned out - HAHA ↓

Thank you again Julie. I love you friend.

skinny love

2011-10-20T10:56:00.000-07:00

song of my week. i love this version of this song. on repeat. and more repeat.

and this video makes me want to watch the newest jane eyre again. i saw it at the cinema and watched it several times when it was at my house from netflix. but i enjoyed it so much i think i am going to have to buy it.

love
love
love it.

now if only someone would create a decent movie of her sister's book wuthering heights. i loved the book, but have yet to have seen a film that even comes close.

the brontë sisters are rad

note to self.

2011-10-12T00:00:00.000-07:00

s.u.p.

2011-10-11T12:19:00.000-07:00

I did it! After eyeing people all summer cruising in and out of the harbor, and wanting to try it, it was finally my turn to stand up paddle board.

I love indian summers. I love the fact that it is sunny and warm even in October. When you expect cold and dreary and you get bright and warm... I don't know... just something about it.

My adventurous friend Mayra and I met up early Saturday morning, hit up Verve Coffee Roasters and then headed for the harbor. Even though we were the last in the class to arrive, I raised my hand to go first. I had been looking forward to this.

Well it was 'easy peasy lemon squeezy' as my son Levi likes to say. Standing up and balancing came pretty natural. My arms were tired after two hours of paddling, but I would expect that our first time.

Left to my own devices, I think I would have liked to sit down on the board and dangle my feet in the water. We didn't really get wet at all. Sometimes cold droplets would splash onto my toes as I rowed, and it felt good. I tried once to sit ... Mayra joined ... but the teacher saw us and told us we were regressing, haha. So back up on our feet it was. One of the men in our class fell when we neared the opening of the harbor by the lighthouse. A swell came and he lost his footing. I was secretly, slightly jealous. It looked so refreshing. My pride is too great to fake fall though, even if it would have been nice to take a dip. Plus I imagine the harbor water is not very clean.

Mayra and I shared lots of giggles and bantering. She's great. I think we both would like to do it again.
Not too much else is as relaxing to me as is the water. It was a great way to end such an anxious, hard week. Good time with a good friend.

to those who stay put,

the world is but an imaginary place.

but to the movers, the makers,

and the shakers,

the world is all around them,

an endless invitation.

keep calm

2011-10-05T19:04:00.000-07:00

every once in awhile the only thing that gets me through the day is a beer, a xanax, and listening to hymns.
all at the same time.

yes i know, i know. that is not very typical.

not very much about me is.

More About Adoption

2011-10-03T10:51:00.000-07:00

So I think it is about time I talk about adoption and Aiden a little more.

It has been 9 months now since he has been part of our family. I forgot what I have told you thus far so I will just go over the basics of his story (and ours).

We are adopting him through the foster care system. I have very good friends who have done international adoption which we considered also, but financially going through the foster care system seemed to make sense and work out best for us. I have noticed at times the foster care system has a weird social stigma attached to it. Maybe rightly so, maybe not. Maybe the few horror stories that do make it into the news taint people's views on it. I am not really sure. A lot of it seems to be hearsay or fear based. Misinformation is another thing I have noticed. Passing on rumors about things that people are not really sure about is something the general population loves to do. They just eat it up. Maybe this is true of all types adoption. I don't know.

Again I am just going off of my own experiences here, talking about my own observations. Going into this process I would be lying to you if I said I wasn't the least bit scared. In the classes that you take before you get licensed they prepare you for the worst. You learn about drug exposure, neglect, mental illness, attachment issues and the list goes on. Sometimes during the class (PRIDE class it is called in our county) you are left wondering if there is even a remote chance you will be able to adopt an even remotely 'normal' child. My imagination runs wild and there were times I felt like we may end up fostering a 'vegetable' or an extremely special needs child our whole lives. (Sorry if that is not politically correct or offensive - I can't think of a better word). The PRIDE class is a necessary step though, and is needed to weed out people who think everything is going to be only roses and butterflies. Life is rarely full of perfect circumstances and this is especially true of kids who have been removed from their home by child protective services. After learning about every possible scenario of what could be wrong with a potential foster/adoptive child I was a teensy bit apprehensive and intimidated.

In my experience with the county I don't think things could have gone much smoother. I realize this may not be true for every foster family - but for ours the process was relatively easy. I am so glad we did not let the fear hold us back - as it seems to with so many able bodied people. Foster care and adoption is not for everyone - but sometimes excuses people make for themselves are not really good excuses in my opinion. There are children out there who need a loving home and you are going to let some rumor that your neighbour's, cousin's, sister had a bad foster care experience shape your views and give you an easy out to not have to consider adoption? Sorry, I don't buy it.

To foster/adopt a child here in my county you don't need to be financially well off, own a house, be married, be a certain race, be straight or gay, or even be completely healthy. What is needed is to be able to provide a safe, loving home. To be over 18 and provide stability and care to a child who needs it.

Sequentially it has turned out to be a humongous blessing in our family. I will have to talk about Aiden's more specific story on a different day. While I am not saying everything went, or is going perfectly for us I want to share my side of things so hopefully more people will consider being a foster or adoptive parent. It has been yet another adventure that I believe is led by God. Our finalization date is coming up on November 18th because of national adoption day. I can't wait for that - and true to our style we are going to be partying!

2011-10-01T00:00:00.000-07:00

fun with animals. and miniature plastic toys as well.

2011-09-30T11:04:00.000-07:00

September is the nicest month as far as weather goes here in Santa Cruz. And by nice I mean hot. So even though I did this little project a few weeks ago when the sun was beating down I am just now getting around to putting up the photos. Oh well.

You know those little plastic animals that kids get, but they never really seem to play with after they are first opened? I don't know about you - but I have tons of those at my house. (Not to mention green army guys, and legos) Well I froze them. I saw this idea somewhere and liked it because it is a free, easy, and possibly even educational way to entertain the kids on a super hot day.

They started out chipping away with butter knives, (I realize that is kind of dangerous - I was supervising closely) but then they figured out on their own that it may work better to pour water on it to make it melt faster.

I especially liked this project for my three year old Aiden, because he doesn't quite know the names of all of the animals yet so we got to work on learning those together. Also I liked tricking both the kids into being super excited about each individual animal that they didn't even care about before. They were entertained by the block of animals stuck in ice probably a good half hour or more. All the way until it was completely melted.

2011-09-26T12:00:00.000-07:00

100

2011-09-24T13:02:00.000-07:00

Yesterday I had an amazing doctor's appointment. (Well about as amazing as a doctor's appointment can be.)

I blew a 102% on my PFT (fev1) !!!

I am almost two years post TX and finally, FINALLY broke 100. I have been waiting for this day for basically my whole life. The last time my lungs were at 100% capacity I was a child.
My lungs feel amazing still. I am so thankful and blessed. I wish I could have shared this news with my old CF team that had watched me struggle to breathe and helped me out so much over the years. A big 'thank you' to them as well.

Lately I have been struggling a bit with anxiety. I think a lot of it stems from not wanting to waste my life. It is hard for me to just relax. I get worried that I am wasting this health, this energy level, this time. With great power comes great responsibility or some rubbish such as that.
On one hand this can be a good thing. It drives me to accomplish things. Projects. Plans.
On the flip side it can be burdensome. I feel anxious to an uncomfortable amount at times. It is difficult for me to decipher how much of this anxiety, if any, is normal. I am working on it.
To have the strong desire to live life to the fullest and to be out on adventures all the time, and then spend everyday doing the repetitive, constant house work can be frustrating. One of my old roommates (who is a new mother) put it best when she said she feels like a machine on some days. Not to say we don't adore our children, but I can certainly relate to that thought.

So trying to balance giving my kids the stability and routine that they need while trying to soak in new experiences is where I am at presently. I only have so much time left - I want to squeeze everything in.

I want to live life to 100% capacity.

Sehnsucht

2011-09-15T08:05:00.000-07:00

You have stood before some landscape, which seems to embody what you have been looking for all your life; and then turned to the friend at your side who appears to be seeing what you saw—but at the first words a gulf yawns between you, and you realise that this landscape means something totally different to him, that he is pursuing an alien vision and cares nothing for the ineffable suggestion by which you are transported . . . All the things that have deeply possessed your soul have been but hints of it—tantalising glimpses, promises never quite fulfilled, echoes that died away just as they caught your ear. But if it should really become manifest—if there ever came an echo that did not die away but swelled into the sound itself—you would know it. Beyond all possibility of doubt you would say 'Here at last is the thing I was made for.' We cannot tell each other about it. It is the secret signature of each soul, the incommunicable and unappeasable want . . . which we shall still desire on our deathbeds . . . Your place in heaven will seem to be made for you and you alone, because you were made for it—made for it stitch by stitch as a glove is made for a hand. - C.S. Lewis

2011-09-13T19:52:00.001-07:00

goal

2011-09-04T00:00:00.000-07:00

25 things

2011-09-03T14:35:00.000-07:00

i posted this on facebook, but figure i may as well post it here also

1. hey look - i already gave one away: i have never done one of these.

2. to this day i am not completely certain what my first name is.

3. i was in the circus. not as a volunteer one time or anything - like i seriously was friends with circus people and i walked on tight ropes and such. weird, i know.

4. i have tattoos. i hope to get another within the next month.

5. growing up i owned (are you ready for this list?) dogs, birds, fish, frogs, snakes, tarantulas, iguanas, rats, hamsters, chickens, a pig, a peacock, and a peahen. ironically enough i am not really an animal person.

6. i have had a double lung transplant.

7. i ate a beignet for my first time on friday night.

8. i love the smell of wet concrete.

9. sometimes i feel like no one really knows me.

10. sometimes i feel very tall and then catch a glimpse of myself in a reflection and remember all over again that i am kind of short.

11. i am a foster mom - soon to be an adoptive mom. (and a biological mom also i should add)

12. nothing yucks me out more than the sound of cloth ripping or the sound of yarn against a metal crochet needle {{shiver}}

13. i can easily see myself as a drug addict. but i am not.

14. i enjoy watching music videos on youtube. (actually you probably all could have guessed that one)

15. i would rather drive a little bit longer on a different route than sit in traffic for the same amount of time.

16. i prefer driving stick.

17. as a child i attended a one room school house grade K-12 built in the 1800's because the road washed away to town. we went there a year. it was awesome.

18. ^ that same flood someone flew-in our neighbours groceries by helicopter.

19. i got to go to disneyworld through make-a-wish as a child. also very awesome.

20. jay leno called me a weevil.

21. i am a pastor's kid.

22. when i was 7 years old i was obsessed, OBSESSED with blues music.

23. my best friend is moving to antarctica in a month.

24. i really hate my face touched.

25. i love thrill rides, waterslides, and jumping up and down on rickety extension bridges with rapids underneath.

grade 1

2011-09-02T16:15:00.000-07:00

here is a photo of a very reluctant 1st grader on the first day of school

by the end of the day he was okay with it.

mum·bo jum·bo

2011-08-30T17:08:00.000-07:00

processing.
processing.
processing...

i often have a vivid imagination. sometimes i tend to mix my dreams with reality. but today and yesterday i have been processing. sifting. looking at cold, hard facts. bringing myself back down to reality and trying to keep my sanity at the same time. i am learning lessons - lessons i know i will probably forget again, and have to keep learning over and over. learning that no matter how much you wish certain things to be true they are not.

i hate that one.

no matter how much you dream, dreaming with your eyes wide open, doesn't mean the things you wish will come to pass. i am walking the tight rope between hope and reality.
dreaming has it's place. it gets us through our days. but now it is time to get my head out of the clouds, my toes are touching the earth, and reality has slapped me upside the head like of ton of bricks.
i am okay. navigating through your own head and heart can be tricky.

Coasting

2011-08-25T15:21:00.000-07:00

Hi!
So yesterday I was at my friend's house and we were setting up a blog for her upcoming adventures as she moves to Antarctica. I happened to come upon my blog, and realized how long it's been since I have written.

Things are going really well heath wise. Last time I checked my PFTs were mid nineties - still on the incline. 95% if I remember correctly. I workout at a pace of a normal, fit person. I have been really enjoying long boarding this year. Next I want to take up (or at least try) stand up paddle boarding in the sea.

So yeah, just a quick update to let you know I am alive and kickin. My life is not perfect, but I am doing well and my lungs are too. Next time I check back I hope to say that I blew a 100% PFT.

Oh and heads up - you are definitely going want to check my friends blog in say oh about a month. She is an amazing writer and person. It's : http://juliebuggs21.blogspot.com/

the mumlers

2011-07-02T10:00:00.000-07:00

about a week and a half ago i finally got to see the mumlers play a show. i like this band a ton and think you should too.

get busy and shake your medication...

sierra nevadas

2011-07-01T14:14:00.000-07:00

the thing is you won't.

2011-06-27T21:13:00.000-07:00

story of my life.

moan

2011-05-31T02:49:00.000-07:00

distressed about hades
worried about failing
desire so strong
oh the draft, oh current
have you ever felt you are so many pieces that you don't exist
so many layers
it never ends. please end.
i don't want to die. i do. i don't.
vanity
is it my imagination running wild beside me like my youth
i was always good at that, i am good at that
please someone tell me i am not crazy or tell me that i am
end this.
careful carefree care where have you gone
care - it holds me down
i want to be good i want to be awful
i want to be.
empress of deceit
or am i eve
haze
haze
grey
reality is harsh but my dreams torment me as being harsher
ghosts of the innocence haunt
without slumber
i scare myself the most

A letter

2011-04-29T10:02:00.000-07:00

I wrote a letter to my donor's family last week. Man, what a tough letter to write! Sometimes words don't do emotions and feelings justice. Seth and Julie both liked it, so I think I will send it out. We'll see what happens...

The Candy Lady

2011-04-28T17:40:00.000-07:00

On Easter day while hanging out with my grandparents I was reminded of my great grandma. She died a few years ago at the first-rate age of 102 years old.

I used to go visit her while I was a teenager. My mom would drag me and my sister away from church on Sunday afternoons on occasion to go visit. We sat in her living room to chat about what was new. How was school going? We would look though album upon photo album as we sat in a living room that had been frozen in time. Her trip to China, photographs of my dad as a little boy...

As we sat there, my grandma's doorbell was sure to ring several times within the few hours while we visited. My great grandma was the 'candy lady', you see. Kids from far and wide would show up on her doorstep, because they knew they were sure to get a treat. Everyone knew her house.
So when the doorbell rang, this 100 year old grandma of mine would get up, walk across the room, grab a glass bowl full of an assortment of candy and then walk back to open the door. Sometimes it was small groups of children, sometimes a kid all by himself. She would let them pick a piece and she would make sure they said "thank you".

One of the visits we took her out to lunch to get a salad at Applebees. The waitress, an adult woman, instantly recognized her as the candy lady. She went on to say that she had gotten candy from her when she was a little girl, and now her kids did too. My great grandma had been the candy lady to several generations now.

And as the city of Hayward got more run down, seedy, gangs appearing - my great grandmother who had very poor eyesight in her older age did not notice. She continued to open the door. My family got a little concerned as the city deteriorated but the more they thought about it, the more they realized that nobody was going to hurt the candy lady.

What an awesome lady she was, and I hope to be more like her. Maybe I can carry on the tradition and become the candy lady myself someday. Maybe not, times have changed. But her generous spirit I can emulate. I think it is pretty cool that I got to be the candy lady's granddaughter.

Easter

2011-04-25T20:15:00.000-07:00

Had such a nice Easter with Seth, the boys, my mom & dad, grandpa & grandma and friend Julie. Low key and chill, but still fun. Oh how I love Easter.

Aiden

2011-04-11T13:26:00.000-07:00

Aiden. Yep - that is what is new in our family's life. He did move in with us, as scheduled, on January 13th. It has been such a blessing, hard at times, but overall very good! He is a very sweet little guy, he is adventurous and athletic. He is quiet, yet comfortable. He loves to climb and he can balance on a moving skateboard. Aiden is friendly when meeting new people but also quiet and reserved. He is silly, he is loving, he is stubborn and full of happiness. He is doing so well considering all that he has been through. The transition has gone very smoothly, as smooth as I could hope for. The first night he was with us things kind of felt like a sleepover. The kids were excited. Aiden's old foster family was great to him, but he just jumped right in without too much sadness.

Levi has had a lot of adjusting to do as well. Aiden plays with his toys sometimes, breaks stuff, and they share a room, etc. At first there was much fighting and crying ... and there still is to some degree, but they are becoming very close. Aiden adores Levi and likes to follow him around and copy him. I love it when they giggle and play together as brothers, it melts my heart.

If you have known me well in the past, you may have known how it bothered me that Levi was growing up as an only child. I like having a sister, so of course I wanted the same for him. I think siblings are good for so many reasons ... to have a buddy and someone to play with; learning to share and learning to live with someone in a close relationship. When I see the two of them interact, and my dream of having more than one kid is coming true, I am thankful.

Even with a two year old as mellow as Aiden life has changed much. We don't quite go out to eat as much, more dishes, laundry etc. But the level of craziness and excitement around this place has quadrupled. It's not so quiet here between all four of us. I mostly enjoy that though, and appreciate the lack of dull and boring. I am also aware that having small children is just a short season in life overall ... so I am embracing the loudness and activity and crazy as much as I can.

Aiden is our foster son currently, but of course we are moving in the direction to adopt him. His biological mom's rights are going to be terminated this week. I really like her as a person, the several times I have met with her, and we plan to keep this an open adoption with Aiden growing up knowing who is biological mother is. After the court date this week we begin the official adoption process. We are looking at the finalization to take place around late July. Then he will be legally recognized as ours, forever.

Not to get all sappy on you or anything, but people say how lucky Aiden is to have ended up in our family. Really I feel like we are the lucky ones. He is an awesome little guy. He is a gift, and I feel privileged to raise him and have him call me mama.

CF Links

2011-04-05T14:24:00.000-07:00

A shout out to some people who have given me a shout out:

http://peterspavementpounders.blogspot.com/2011/01/guest-speaking-about-cf.html

http://bennettgamel.blogspot.com/2011/02/yucky-lungs.html

http://d-livered.blogspot.com/2011/04/blessed-by-friends.html

And I can't forget my one and only sister (who also has CF):

http://thelighttheheat-rebex.blogspot.com/

Have a good day you all

Levi's Change the World List

2011-03-28T18:07:00.000-07:00

Levi dictated this list of rules he will make when he grows up. He says he will change all of these things if he can remember it.

LEVI'S CHANGE THE WORLD LIST

No spanking on birthdays
No throwing bombs at people
No setting people's houses on fire
No dropping glass on people's foots
No breaking people's legos when they're not done
No robbering
No stealing money
No swimming in water fountains
No acting silly at school
No trying to kill Jesus
No putting your underwear on your head at church
No punching people in the face and making them bleed
No eating people
No popping people's balls when they don't like it
No shooting good guys when you're a good guy
No farm animals in people's houses
No pinching on St. Patrick's day
No picking people's noses
No tearing people's shirts
No saying "I'm not your friend anymore"
No dumping gas out of cars
No being bad secret agents
No sticking swords in people's mouths
No throwing people's computers
No saying that you are God
No blowing up houses
No throwing ipods
No leaving candles on fire on purpose when you leave the house
No killing animals
No setting nice trees on fire

"A"

2011-01-05T13:31:00.000-08:00

I have been hesitant to write on here as of late, because I don't know what or how much I am allowed to say. As I mentioned last time, we are adopting through the county/state. I haven't really been briefed on confidentiality, but common sense tells me I shouldn't put a kid who's not mine (yet) on blast all over the interweb. For privacy purposes on this blog I suppose I should call him "A". I also have photos, videos, information about his history etc... but should also probably keep private at this time. Later on when everything is final I am sure that I will be posting more photographs of little A than you even care to see . .

So yeah, we met him a few weeks ago. I tell you I wasn't a believer in love at first sight until I had kids. I felt that way with Levi and with A also. He is such a sweetie. He takes everything in slowly and thoughtfully. He has dimples you just want to kiss and big, brown puppy dog eyes that are probably going to work to his advantage with me and letting him get away with stuff more than I should. He just turned two, and is at the age where he enjoys peek-a-boo and pressing any type of buttons he can find. He likes hearing different sounds, noises and volumes as well. He loves kids and currently has been living with some foster brother and sisters around Levi's age.

He is with two foster moms now, and they have just been great. They have provided a loving home for him and worked hard these past six months to help A grow and blossom. I really admire how well behaved their children are and how well they have taken care of A. Both of his foster moms have made this transition super easy on us, and have really guided us along. I know his likes, dislikes, his insecurities and routines already because they have really spent a lot of time filling us in.

When A first arrived at their house all he had with him were the clothes on his back and a bag of flaming hot cheetos that he was eating. Stop and think about that for a moment. He was one years old - eating flaming hot cheetos. I can barely handle the heat of those things sometimes. Wow, it kind of gives me a glimpse of how hard his life must have been at one point. In fact I know his life has been hard.... but like I said before I am holding back on the details.

The social worker is planning on doing an 'emergency placement' and even though we are not licensed yet the goal is to have him permanently in our house by the thirteenth. Exactly a month to the day she first called about him. The adoption social worker says this "feels like a miracle." Her words. Not mine. The foster care social worker says she is blown away at how quickly this is happening for us. (And she deals with every single family who does foster care)

What is it with extraordinary things happening in my life? I really don't get it. Why do miracles, awesome people, and awesome circumstances just fall into my lap? Beats me. I am a lucky girl.

Well there is a ton more to write about... but I'll have to do that later . . .

ONE YEAR!

2010-12-14T18:01:00.000-08:00

One whole year and I'm still here. Ha HA take THAT diablo! Yeeeeeeee!

Yesterday was my one year anniversary of my double lung transplant! I know, I didn't write anything, I am a bad blogger. Not to say I wasn't thankful, I am, I was just so busy...

THIS YEAR HAS BEEN CRAZY AWESOME!! It definitely goes down in the books as one of the best years of my life, and that is saying a lot because I have had some pretty great years. It is weird to think it has only been a year in a sense because it seems like a distant lifetime ago that I was sick.

They say it takes a village to raise a child. Literally though it really does take close to a village to give someone a lung transplant. From my great CF doctor, the CF team, the surgeon, the transplant coordinator, the anesthesiologist, the nurses, respiratory therapists, physical therapists the transplant doctors and I'm sure a bunch of other very important people that are slipping my mind at the moment. It really restored my view of the human race as a whole, and made me realize that there is some good left in this crazy world of ours.
I am eternally grateful.

Yesterday my dad brought up to remember the donor's family and that a year ago they lost a loved one. It was a somber moment, remembering my donor.
I am eternally grateful.

We had a little celebration last night at our house. I had so much fun. Most of my good friends were there and I just had a blast. I get by with a little help from my friends (Actually A LOT of help) and the close friends that I have are more important to me than ever before. I'm a lucky girl with really great friends.
I am eternally grateful.

And . . . last but not least : Abba Father God. I am thankful for this life he has entrusted me with... I am unworthy of it, but am so glad he sustains me and lets me live. Not only has he let me live, it has been a year of enjoyment and blessing, fun and partying.
I am eternally grateful.

- - - - - -

In other news . . .

Seth and I have decided to pursue adoption! We are very excited about this. We are slowly working our way to getting licensed through the county.

We both totally have a heart for adoption and it has been an idea we have thrown back and forth since we first got married almost ten years ago. There are so many kids that need a loving and caring home. We believe adoption is biblical and not only will the child benefit from it, we will too.

Weeeeell, things were moving along slowly/normal ... we still have a ton of stuff to do before we are anywhere near being licensed. But wanna hear something cool? Yesterday on my one year lung anniversary I got a voicemail on my cell phone. It was about the possible placement of a two year old little boy! (Which is exactly the age range/gender we are hoping for) She said she wanted to expedite the process. I don't know how much I am allowed to say on here, but eeeeeeeeeeeee!

We don't know for sure if this little guy will be ours yet or not, but we do get to meet him soon and he may even get to stay with us as early as January depending on how things go.

I just wanted to let you know so you could be praying! Like I said... nothing is for sure but it is a possibility that we could be adopting very, very soon.

I think God has fun blowing my mind.

Mike & Rachel

2010-12-08T20:15:00.000-08:00

A couple of weeks ago we had our family from Ireland come for a visit. Seth's sister, her husband and their boy. We only get to see them once a year at best... and we are always thankful they make the trip to come and see us.

Mike (our brother-in-law) is the pastor of a Calvary Chapel in Cork. He taught at our church while he was here. It was pretty rad - here is the link if you want to check it out.

http://ccmv.org/

Me

2010-12-04T16:15:00.000-08:00

Lately I feel like I am rediscovering who I am. That sounds cheesy, but I don't know how else to put it. I think we all do it from time to time without even realizing it. A few days ago I was listening to some blues music that I used to listen to when I was a child. I realized that I still liked it and have similar taste in music to my seven-year-old self. I made mention of this to Seth and he said something along the lines of we are still the same person we once were we just build upon and add tastes. Am I that same person I was as a child? Where memories blend with dreams and everything is kind of clouded over?
I didn't think so. Two years ago I would tell you how absolutely different I was from how I was when I was young. All of the pressures and struggles - I was definitely an adult.
Hmmm. If we stripped all that away and had the luxury of being carefree I think we are more like the past versions of our miniature selves than we realize. I feel like I was one sort of person as a teenager and then the last couple of years, someone else. This has been such a significant year, and now I am recognizing old characteristics that I thought were things of the past. It's like going back in time except without erasing the future.

And I am starting to feel more like myself now than ever before.

Anna Banana

2010-11-22T11:37:00.000-08:00

One of my CF friends, Anna Modlin is getting a double lung transplant this very minute! She is in surgery at Stanford right now. Please pray for her. Please pray for a smooth surgery, smooth recovery and the donor's family. Her is her blog where all updates will be posted:

http://annabananasvarietyshow.blogspot.com/

Hey, I remember you!

2010-11-17T21:01:00.000-08:00

I don't know why I haven't been writing lately. No good excuse. There is a season for everything I guess, and lately this hasn't been what I've been up to. Skipped clear over October! There are things sitting on my brain and my heart - good things, bad things, things I am proud of, things I am not proud of. Life. Things I'm not sure if I want to share with the 'world'. Thoughts I have a hard time making sense of in my own brain. I don't want to cast pearls to swine either. Wait. Did I just call you a pig?!?!? I believe I did. Ha - that is not what I meant though.
You know that.

Things are going great. No, they really are - I'm not just saying that. We have done tons of things since my last post including a quick three day hospitalization and several awesome vacations. I did try to upload a video after one of our trips, but the stinking website was giving me heaps of trouble. So I gave up. Then I forgot.

Last night we went up to see a show at the Great American Music Hall (I like that venue). Margot and the Nuclear So and So's. We went with my sister and brother-in-law. Fun. Today has been tough for me to stay awake. I'm beat. It was worth it though.

Maybe I'll go and try to upload that video again ....

2010-09-20T17:15:00.000-07:00

Happy day to you.

Art by: Levi

Kindergarten

2010-09-01T18:07:00.000-07:00

This morning I sent Levi off to his first day of school ever. That's right, he started kindergarten! My baby is of course no longer a baby, but grown up into a full-fledged kid!

Yesterday we had his orientation where we got to meet his teacher, see his classroom etc. When we arrived I headed toward the kindergarten buildings, because naturally, he is beginning kindergarten. I couldn't find his room number, and was told it was in the main building. When we found the proper classroom and I started talking with the parents and the teacher I found out that unbeknownst to me he was in a K/1st Grade class! I guess based on the knowledge they have of him from our application, the school decided that this was the best class for him. There are 13 kindergarteners and 10 first graders in his class. He doesn't go to lunch with the rest of the kindergarteners at his school during the kindergarten lunchtime, but instead goes with the first and second graders. He doesn't go to the kindergarten jungle gym or have his classes in the kindergarten building.

This concerned me for a second, but then I thought about how absolutely smart Levi is, and that he also does really well socially. I don't like to just brag on here, but Levi is a very bright boy, and has known the whole alphabet since he was one year old, and learned to tell time on an analog clock when he was two.

This morning when we arrived he found his cubby and jumped right in, just as if he had always done it. I knew he'd be fine and do great. I knew that I was probably more nervous than he was. I stayed for the welcoming assembly, and then kissed his cheek goodbye and went home to an empty, quiet house. The whole thing was a little bit emotional, but I didn't get misty eyed until I saw this note on the counter:

When I picked Levi up he said that the day had been great and he had already made friends.

I hope this school is ready for Levi! He is one amazing kid!

The flea

2010-08-09T19:20:00.000-07:00

This past weekend we were vendors at the flea market.

(* Sidenote: Half of my life I have lived in Southern California and the other half Northern. I am split on what to call it - swap meet or flea market. It's this little personal identity crisis that I have)

We have slowly accumulated quite a pile of unwanted junk. We finally got together with Rebecca and Kyle to rent a space and sell. Ever since before I can remember I have gone to the swap meet, but have never sold there before. It was fun! Don't worry . . . I wasn't pacing back and forth yelling "ONE DOLLA, ONE DOLLA, EVERYTHING ONE DOLLA" but I could definitely see myself doing it again.

Dollar signs appeared in my sister and my eyeballs as we were trying to figure out how to buy things at thrift stores and try to resell it at a profit, haha. Also, Rebecca and I moseyed around to shop of course - it's a talent we share. I found a few little nuggets.

Distressed drawers: $5

And everyones NEEDS a copper ship wall art right? Right.

In other news - earlier today I had that doctor's appointment in Palo Alto that I was talking about last time. ↓

They said my sinuses look perfectly clear, and they saw nothing really wrong with them.
Come back in a year.

Ahhh. music to my ears.

Rejection Free

2010-08-04T10:42:00.000-07:00

Okay, some good news! Last week I had another bronchoscopy. (3rd, 4th, 5th one? Who knows. I have lost track.)

There is no more rejection! Praise God for His mercy!

They found some bacteria in my lungs and almost put me on antibiotics for it, but at the last second decided not to, which led to me doing a little happy jig. They think it may be coming down from my sinuses (which are still CF sinuses) so I need to schedule an ENT appointment. Yep, I had better go do that . . .

Our first carrot

2010-07-31T20:29:00.000-07:00

Today Levi dug up one of the carrots from our back yard. He washed it in the sprinkler (we re-washed it) and we ate it!

My Heroes

2010-07-27T22:40:00.000-07:00

Two nights before my sister Rebecca's wedding she was feeling sick. Our friend Daniela had flown up to be in the wedding and was staying with Rebecca at her house. Rebecca was so sick and weak she asked Daniela to come in the bathroom with her while she showered just in case she fainted. She took care of her, got her her medicines and they fell asleep holding hands.

I heard this and thought it was so sweet. I thought back to Eva's blog before she died and remembered that she too had a circle or friends who were there for her, comforting her when she was sick. These people are amazing. The caregivers, the real friends.

Anyone can find friends, the type to have fun with. But who can find friends who are there through thick and thin, rolling up their sleeves and hopping in the trenches with them during their sickest hours.

I am so thankful for the people in my life who have had the guts to stick around. To not get scared off. To those of you who have been there for me thank you. Thank you from the bottom of my heart.

You are my heroes.

The Lunds: I haven't seen or heard of these folks for years, but they were very encouraging to us.
To my sisters-in-law: They write me the sweetest notes and cards - totally brighten my days. Thank you.
To my in-laws: I have awesome in-laws who are so supportive. Thank you.
To Tyanna: Who listens to me talk about blood and guts stories even over dinner. And gets mad at me if I don't keep her in the loop. Thank you.
To Tosh: Who kept coming to visit me almost every time I was in the hospital. Even though I had been super crabby to him in the past. Thank you.
To Christina Bass: Who has helped me so much, in so many different ways. Watching Levi, cooking. Thank you.
My mom and dad: I can't even begin to start to think of how much they have sacrificed over my whole entire life. Thank you
Seth: Seth never bailed on me. He has been my knight in shining armor and my strength. From getting me food, to cleaning up my hospital room, to knowing how to calm me down, really the list is endless. Thank you.
To friends who have helped financially, thank you. For those of you who have prayed for me. Thank you.

There are people who are willing to get down and dirty. Who remain friends when all is not sunshine and roses. People who believe me. People who don't think I am just making excuses or being lazy. People who take Cystic Fibrosis seriously, yet don't treat me as a frail person. People who have pounded my chest to loosen up the mucus. People who have taken the time to research CF. People who knew my treatments well and goofed off and had fun with them. And again, people who have had the guts to stick it out with me. Those people are my heroes. Caregivers are my heroes. I watch people care for other people selflessly, and it is so beautiful.

Seth Boren you are my hero.
Mother you are my hero.
Father you are my hero.
Kyle Craw you are my hero.
Daniela Dawson you are my hero.
Brittani Weybright you are my hero.
Rene Hight you are my hero.
Casey Joens you are my hero.
Brad Beyenhof you are my hero.
Nate Lawrenson you are my hero.
Julie Howell you are my hero.
Nana you are my hero.
Pop you are my hero.
Grandma you are my hero.
Grandpa you are my hero.
Mendy Riggan you are my hero.

And there are more. Real live heroes.

A year ago . . .

2010-07-26T20:30:00.000-07:00

"a year ago this week we all caught the swine flu ...Levi and I eventually got over it but Leah never really did - until she got new lungs..."

That was Seth's Facebook status last night. It got me thinking. Yep, it was around a year ago when my health started spiraling down to an unmanageable, scary level. Until then I had lived a relatively normal life. Yes, I had treatments to do. Yes, I would have to be admitted to the hospital for "tune-ups". Okay, so maybe my life wasn't completely normal. It was normal to me though, and although I was hindered from certain things I had enough freedom and independence to get by.

That is until late last summer...

At the end of July we all got sick. Very, very sick. It was the sickest I have ever felt, and I pray to God I never feel like that again. I was so weak. Fevers daily. Never ending, relentless fevers immune to any medication. Nothing brought them down. My lungs were bleeding for days on end. They were gurgling and I tried to avoid the inevitable coughing so I wouldn't exasperate the situation and make it worse. I could only lay on the couch. I couldn't stand through a whole shower. I ended up in the hospital. Extremely anemic, I could barely make it to the bathroom. To walk across the room felt like I had just ran a marathon. Living was exhausting, but I didn't have a choice in the matter. It felt like I had to do extreme exercise just to survive. When I was an inpatient a doctor told me he thought it was time for me to get evaluated for transplant. I was shocked. As sick as I was, I wasn't mentally ready to face the fact that I needed a transplant. Around this time I was placed on oxygen. I had been on oxygen here and there before, but never NEEDED it. As in, can't-breathe-without-it needing it. One night my oxygen got pulled out of the wall and I woke up with a panic and suffocating feeling. I pressed the nurses button. They didn't come. They never come. That was the closest I have been to a panic attack. Maybe it was a panic attack. I don't know. All I remember is that I couldn't breathe, and even later in the day when I could breathe finally I was still shaky from the intense fear I had experienced earlier that morning.

When I transitioned back home I was so, so, so sick. The hospital didn't help make me well at all. Just transitioning from hospital to home used up every ounce of energy I had within me and more. I felt like I was going to die. I got oxygen set up at home and I laid in bed for days. I was losing weight at a scary pace, and no matter what I did I could not gain. Eating was a chore and something I had to force myself to do to stay alive. The number on the scale kept falling. I was down to eighty pounds, and did not like what I saw in the mirror. I looked like death. People around me were not handling the situation very well. Sometimes I felt confused why I was the one who was sick, but was handling it better than everyone else. That may or may not be true, but that is how it felt.

I knew I didn't even have a year left to live, and that it was down to months. I could feel it. I wasn't sure that I would make it to Christmas. It was such a dark time, but yet the comfort of God was so real to me. I had true peace about "real life" in eternity. I didn't want to leave my family behind, and I was scared of the pain, but what happened after I died I was confident in.

This was all a year ago. And so the wait for new lungs began. The unknown was terrifying. The pain was unbearable. My normally clear head was a mess. I felt lazy and depressed although I wasn't. The Lord God revealed himself to me in the most amazing ways. I learned lessons and things about myself, people and God that I wouldn't have otherwise. I learned that God is in control and we have no control. I learned that God's goodness has nothing to do with our individual circumstances at the time. I learned that God gives and takes away, but blessed be the name of the Lord. I learned that I am very against positive thinking and thinking we can "will things to happen" by our own thoughts. I have a strong disdain for the word of faith movement. I learned that if God is for me, who can be against me and that I don't need to fear man or satan. I learned that being a Christian to have an easier life is not the way to go, and that is not what Christianity is about.

I was blessed to watch this video a few days ago. Everything this pastor says is a word-for-word into the inside of my brain and heart when I was suffering a year ago. This is how I felt exactly, and God revealed though His word and spirit these same truths to me. I am not nearly as articulate as he is in communicating God's peace through suffering. Take the time to watch it, seriously.

*** Also, please keep this family in your prayers. James 5:16 ***
You can keep up with what is going on with Daisy Love here at http://prayfordaisy.com/

Rebecca and Kyle's Wedding

2010-07-25T22:42:00.000-07:00

Two weeks ago was such a great day! The day my little sister became Mrs. Craw. Their wedding was cute and super fun. It was country themed and all of the guests were told to wear "country casual" attire. People went all out dressing up from cowboy hats, to tight jeans to big belt buckles.

It was at a mini western town called Long Branch Farms in Half Moon Bay. We had the whole town to ourselves for the day, including the saloon where The Quick and the Dead was filmed.

The church building was adorable. My favorite part was that the whole front wall could open up on hinges. It reminded me of a doll house.

I was so happy to be the maid of honor and have a front row seat to watching them exchange their vows. I know my sister had been waiting for this day for a long time, and it was a blessing to watch it unfold before my eyes. Their personalities are perfect for one another and compliment each other nicely. I pray that their marriage will be totally blessed by God for years and years to come.

Rebecca was beautiful, as always.

Here is some of us girls getting ourselves ready before the wedding. The very cool thing about the bridesmaids that Rebecca chose is that I happen to be good friends with them too. We had so much fun together, and they are some of my favorite people. I totally love them which made for a very fun weekend.

Here is a photo of the whole wedding party. Levi was the ring bearer. He got to wear his bright red cowboy boots. He did a good job walking down the aisle and standing up front. Throughout the ceremony he kept winking at the flower girl, his friend Mia. She kept getting shy. So. CUTE.

At the reception there was lots to do, including archery . . .

And dressing up in pioneer clothes . . .

and dancing.

We had to do the electric slide . . . at least once.

Rebecca decided that it would be a good idea to shove the wedding cake in her brand new groom's face.

But don't worry. He got her back.

Congratulations Rebecca and Kyle! I love you guys!

Two are better than one, Because they have a good reward for their labor.
For if they fall, one will lift up his companion. But woe to him who is alone when he falls, For he has no one to help him up.
Again, if two lie down together, they will keep warm; But how can one be warm alone?
Though one may be overpowered by another, two can withstand him. And a threefold cord is not quickly broken.
Ecclesiastes 4:9-12

*** All of these wedding photos were taken by our friends at Aptos Photography ***

Just Shoes

2010-07-17T00:16:00.000-07:00

Check out these cute shoes I scored at Crossroads. They are Steve Madden. I got to go shopping with my mom today which was nice. We haven't done that much (as me being an adult anyway).

But as excited as I am to find deals and such . . . . shoes are not what I feel like blogging about. Nope, it's not. What I really want to write about is my sister's wedding. Her wedding was so wonderful, so fun and such a special day. Or I could write about her masquerade bachelorette party, or how much fun I had swimming with her and her bridesmaids after rehearsal, or visiting San Francisco with relatives Monday, or hanging out with friends on the beach this week and jumping off of the jetty.

You get the point.

But it is late. Five minutes after midnight actually. This is the first chance during this amazing whirlwind of a week that I have had to sit down for a decent stretch of time.

So for now I'll just blog about shoes.

Hopefully, someday soon I'll be able to sit and reflect on all the phenomenal and pure carefree fun I have been blessed to have. Now is bedtime though! Nighty - night!

Drugs

2010-07-07T21:00:00.000-07:00

I have been on tons of prescription drugs spanning my lifetime. And by tons I mean A LOT. Possibly and probably hundreds. This includes many hard core, intense and even addicting drugs.

Morphine, Xanax, Dilaudid, Benadryl, Vicodin, Percocet, Phenergan, Ativan. And more. You name it and I have probably been on it one time or another. Well not really, but you get the idea. I have obviously not taken all of these at once, but as I needed them. And boy did I need them living through CF and not just CF, but "end stage CF" as they call it.

Some of these drugs I really, really like - to be quite perfectly honest. Dilaudid is definitely my drug of choice; the rush and all that it gives while taking away pain, and making it seem as though everything is right in the world. I am always a little hesitant when I have to taper down off of this drug . . . . something inside doesn't want to! Which leads me to my next thought. Thank God my body doesn't seem to get too chemically dependent. No really. I thank God for that. I know of some people with CF who have a very hard time coming off of some of these drugs. Thankfully I don't. I have a pretty addictive personality in general, but have never gotten addicted to medication. Like I said, I'm a little hesitant and sad to stop taking it, but my actual body handles it okay. I can drink espresso everyday for weeks and then stop cold turkey also. No caffeine headaches! It's great.

Anyway, back when I was extremely sick and frail I was emaciated and paper thin. Eighty pounds. I was unable to eat much as hard as I tried. My doctor prescribed me marinol. Marinol, in case you didn't know, is the prescription pill form of Marijuana.

Marijuana gives people the munchies. The munchies is exactly what I needed. I remember very clearly as my doctor was writing up the script telling me that it might make me high. Yes it did. I got high every time. There were times when I was just sitting alone, cracking up hysterically for no reason. Everything was funny. Time was messed up, and so was my head. I ate though . . . mac n' cheese, slim jims, the junkiest of foods . . . but I ate.
At the time I didn't tell a lot of people I was taking Marijuana. Only really close friends knew. I wasn't ashamed at all, but I know that a lot of people might not understand. I didn't want to "stumble the weaker brother" so to speak. Being a pastor's kid, I didn't want people whispering about their pastor's daughter being on drugs, that sort of thing. Even if it was prescribed . . .

Now that I am six months past my double lung transplant, healthy and doing great I have more confidence in talking publicly about drugs I have been on. I eat fine on my own now, thank you very much, and have not taken a single pill of marinol since.
So I am not gonna hop on a little soapbox and say "legalize marijuana" or any such nonsense. I just feel like I had such a unique experience by being a Christian, praying about it, God guiding me and blessing me by giving me a drug to help me eat. (How new-age-ish do I sound right now? Haha.)

Recently I was sitting with a couple of friends and we were talking about our pasts. They were bringing up some things they had done before they received Jesus in their lives. My friend Myrna asked me "Leah did you ever try marijuana before?" I just chuckled and was like, "Yeah . . . about six months ago . . . ."

Independence

2010-07-06T22:53:00.000-07:00

I finished up my course of steroids. Three days. Outpatient. No problem. I'm not saying I particularly enjoyed it (because I didn't) . . . driving up there three days in a row. . . . but, oh, doing things as an outpatient is so much nicer than being admitted. Yep.

I didn't sleep, but that's okay. I am sleeping again quite perfectly soundly now that it's over. Whenever I am fully sleep deprived I am tempted to write blogs on here. There's not much else to do in the wee hours of the AM when you are super tired, but yet somehow still wired. I resisted the temptation this last course. I'll spare you, ha.

So I'll hear the results about if I still have rejection after another bronch. That should take place in the next few weeks. Not on my mind right now though . . . I have been busy living, living, living - having fun and relaxing. Spending time with wonderful friends and spending time just staying home. Seth is usually more of a homebody and I am usually more antsy to GO. This long weekend we were for the most part just staying home or doing small errands around town, but I enjoyed it. Plus living in Santa Cruz on Independence Day is an experience of it's own. No need to wander very far. We rode bikes to get down to the beach, because as usual the roads were shut down and traffic was being redirected. It's always a little intense, but there's nothing like it. This year was actually the most tame I can remember. They are cracking down more I suppose. Maybe we'll have to go down to Aptos next year. I saw no fire dancers or hillsides catch on fire. We did end up in some kind of outdoor rave/dance party where everyone was adorned in glow sticks and totally intoxicated. Try pushing your bike through a crowd like that.

My sister is getting married this week! AAAAHHHHH! I can't believe it, time has flown. I am so happy for her and am already antsy for her to start having babies, ha. This week we have rehearsal, a bachelorette party, manicure, wedding. Y'know, the usual. Except it's not usual because it's my one and only sister getting married - a once in a lifetime thing, so I'm pretty elated.

I hope it's okay with her, but here are a few pictures I took of my good friend's son. He is adorable (so is his older brother) and I have been waiting to get some good shots of him ever since they brought him home from South Korea.

So cute, right?

Toy Story

2010-06-30T11:56:00.000-07:00

Pizza, candy, soda, popcorn and Toy Story 3!

Bridgeport

2010-06-25T10:14:00.000-07:00

Breaking News

2010-06-24T12:30:00.000-07:00

So the news is in. My rejection has gotten worse moving from A1 to A2. Now that the rejection is more significant, we are going to try and treat it. For the next three days I will be driving to Stanford for an outpatient infusion of high doses of steroids. This is not easy, for many reasons.

Messes with my plans.
Messes with my brain.
Messes with my family's plans.
Messes with my cheeks.
Messes with my sleep.

and . . . . of course I have the lingering worry that it won't get better. That's always there too.

Construction

2010-06-24T12:19:00.000-07:00

Construction surrounding our house is still going on. They are putting in a grocery store. It's crazy. Our walls are shaking like an earthquake. Sometimes it is downright scary. This is what our house is like:

Sick as a dog

2010-06-23T14:05:00.000-07:00

Today I am sick as a dog. I had a rough night, and woke up with a fever. Body aches, and I feel totally out of it. Seth (who is just awesome by the way) stayed home from work to take care of me and Levi.
He called the transplant nurse to let her know of my condition. She said fevers can be normal after a bronchoscopy. Greaaaaaat. I guess it is relieving to know that this is normal; but at the same time it's not! Lame side effect!

I haven't felt sick like this for so long! Fevers used to be a normal occurrence for me. I used to have them so often. It is kind of a mind trip to feel like this again. I have hope that this one will go away though, since it was caused by the doctors messing around inside my lungs.

Until next time . . . . .

Another Notch

2010-06-22T22:16:00.000-07:00

Bronch number two is now under my belt. It was this afternoon.

Today I came to the realization I have spent way too much time in the hospital just by how many hospital worker friends I know. I ran into so many people. It was ridiculous! I guess it really is my home away from home. Seeing people in the hall, asking then how their cats diabetes condition is . . . . yeah.
My friend Sheba was there (the one who was giving updates to my family during TX surgery) and another RT (*respiratory therapist) who I am friends with helped the doctor during the bronch.
That happened last time too. (I knew the RT)
I passed by like 10 people that I knew today just walking to my appointment . . . .

Anyways, man - I am beat up! I'm tired. I'm coughing (yes, coughing). I was tired after my last bronchoscopy, but definitely more tired this time. I'm coughing up bits of blood. That is normal for two days, or so they tell me, but it didn't happen last time.

So on that note that I am SOOO tired, I'll say goodnight. Short and sweet.

(and results shouldn't be in for awhile . . . I don't get them instantly)

día de los padres

2010-06-20T00:00:00.000-07:00

I am blessed enough to have both grandfathers, my father and my son's father with me here on this earth.

My dad is a great dad. He is a man after God's own heart. He does a great job at pastoring our church, Calvary Chapel of Mountain View. We are closer than ever now, and I am grateful for all of the time I get to spend with him these days. I am so thankful for him in my life. I am thankful that he has remained faithful in his life, and in turn affected our whole family in a very positive way. He is a really good grandpa too. Levi adores him, and they spend much quality time together going on "dude cruises."

Seth is not my dad, but I just want to mention him too. He is a great dad also. He takes such good care of us both. Levi is a lucky kid to have such a hands on dad. Seth will sometimes go lay on Levi's floor and build legos with him or they will wrestle in the living room. (I love when they do this . . . gets out that aggression and energy that is simmering within those guys.) I know that when Levi grows up he will look back and have lots of good memories with his dad.

Also, most importantly I am thankful for God as my Father. He is always faithful. He is the PERFECT dad, and never sleeps or slumbers. Talk about watching out for us.

A few months ago as Levi and I were grocery shopping, Levi loudly proclaimed in the very crowded produce section, "Isn't it cool how everyone has three dads?!"
Knowing everyone surrounding us could hear him and knowing what kind of city we live in (Santa Cruz isn't very different than San Francisco as far people's sexual preferences, broken families etc.) it was a little uncomfortable. Perplexed, I asked him what he meant. He replied that everyone has "God, Adam, and their own dad." Very sweet, innocent and true.

Also I can't forget Grandpa, Pop, Shane, and Sheldon! You are amazing and awesome. I love you guys!

Paint me happy

2010-06-19T20:39:00.000-07:00

Our house looks like a disaster area right now. It's an absolute mess. I'm thrilled! Why?
Because we are painting!

This morning I picked up bagels and mochas, we got the furniture cleared out of our bedroom, got music playing and started painting. I'm pretty excited because I have been wanting to paint that bedroom for the past FIVE YEARS! It's about stinkin' time!

We picked Keystone for the walls and Swiss Coffee for the ceiling and the trim. Not the craziest of colors, but I think it looks pretty classy. Seth was a professional painter for many years and definitely knows what he is doing. It makes it nice and easy. He tells me what to do, I do it, and it looks good. It's coming along great. It's been an ALL day project, and we can't even get to the trim today . . .

Happy Saturday!

Rejection

2010-06-15T14:43:00.000-07:00

Well even though everyone I'm close to already knows the results of my bronchoscopy, I am well aware I haven't written a blog about it. We have been away at a cabin with family for a week, and the week before that was crazy busy.

As it turns out I have slight rejection. There are two types of rejection. Chronic and acute. The latter being the better one to have, if you had to choose. That is the one I am experiencing. The acute rejection runs on a scale of one through four, one being the mildest and four being the most severe. I have A1 rejection. This is not news I wanted to hear, but even since the beginning of my so called transplant journey the doctors have let me know that rejection is most common in the three to six month window of time. I am still within that window, and so the news wasn't entirely shocking. Since I have the most mild form of rejection that there is, we are hoping that it resolves itself and I have no change in any type of treatment. Just wait and see. I have to have another bronch (yuck) soon to see if there is any change. If rejection still shows up in my next biopsy, then the doctors will discuss a treatment plan with me.

I am feeling decent, which after all is the most important thing to me. I am thankful for that. Surprisingly I am not too stressed about having rejection. I can be pretty tightly wound sometimes, but the fact that I have rejection has been floating around somewhere in the back of my mind - not the forefront. During our camping trip I was able to relax and have a good time. When I am feeling okay it is pretty easy to forget about any looming health issues. It's only when I start feeling pain or being tired that I am reminded. Like I said I am feeling decent so it hasn't been too bad.

All that being said, these hiccups with my health keep me a little more reliant on God than otherwise. Sometimes they are a blessing in disguise. God's goodness has nothing to do with our circumstances. He is what He is. Never changing. My life shifts like the wind, but God is the one solid rock that always remains.

Go Seth Go!

2010-05-27T19:21:00.000-07:00

Seth won two awards at work! Most new sales and most internet sales! A co-worker of his snapped this shot while they were being presented to him. Yay Seth! I'm proud of him!

Oh, and by the way my bronchoscopy went pretty well I think. I'm just a little tired now. I'll get the results later.

2010-05-26T13:32:00.000-07:00

So much going on! I have been busy with my matronly-of-honor duties. I am throwing my sister a bridal shower. It is in little over a week! I'm having it at my house, and I couldn't be more excited. Planning these things are all sorts of fun! I ordered my dress for the wedding yesterday and it shipped today. Eep! Also Rebecca, Brittani and I got together and had lunch and talked about wedding/shower stuff. I went to the party store after and got plates, napkins, cups etc. It's going to be so cute - I can't wait! The wedding itself is in a month (they had a super short engagement) and I know the time will continue to fly by!

Also yesterday I jogged/walked from all the way from my house to the beach in the rain. I ended up at the lighthouse. It was absolutely grand. Why is it that I can jog so much further while I am listening to pop music? Or any music for that matter. It was refreshing. It was just drizzling not pouring, but there was no one out. I felt as if I had the whole world to myself! I was trying to dodge the hundreds of snails that all decided to cross the sidewalk as the sun was setting. I was doing pretty well but as it was getting dark, I accidentally stepped on one! As it's shell got crushed so did my heart... I felt so bad! When I arrived home I told Levi to come outside to check out all of the snails. As soon as he stepped out he crushed one too. Sad.

Last Friday was clinic. My PFT's were down by 7%. From FEV1 83% to 76%. Because of my recent RSV and hospitalization they want me to have a bronchoscopy. Having RSV can trigger an immune response in the body, which can lead to rejection of the lungs. If you remember, I don't want my body to have an immune response. I take pills to suppress my immune system, so that my body doesn't recognize my lungs as foreign and try to kick them out. So the bronchoscopy is scheduled to check for rejection. I'm trying to not think about it too hard. Worrying doesn't add one day to my life. I am nervous about the procedure itself though. It is tomorrow. Pray for me -- if you remember me tomorrow. I will be partially sedated, and need someone to drive me home. My awesome mom is going to watch Levi and then drive me back. In my experience partially sedated procedures are the worst kind! I'd rather be all the way blacked out or totally alert. A few hours after my transplant I had a bronchoscopy, and I remember the whole thing very clearly. Usually, in the past, they give me medication to make me forget. Isn't that a creepy thought? Medication that makes you forget what they did to you? Yep, that's what I usually get but I don't know why I remember that one bronch. They forgot to give me the forgetting medicine. Haha

I have a new hair colour! Platinum blonde! I love it! This is the second time I have done platinum... it's a fun colour to be.

That's all for now! ... until next time...

Easter Skit

2010-05-25T23:46:00.000-07:00

This is a video of a skit Seth and I were in on Easter morning.

2010-05-24T13:42:00.000-07:00

Just now I told Levi to clean his room. His reply was:

"I'm an inventor, and inventors never clean their room!"

Hahaha. Nice try Levi!

Hello Old Friend

2010-05-18T22:39:00.000-07:00

I didn't mean to neglect this little blog, but somehow I did. Procrastination. Laziness. Not feeling well sometimes, and busyness.

Oh well.

My grandparents are in town right now, and we have visited with them the last two days. This evening they watched Levi for us so we could go out on a date. We went out to sushi and then strolled around downtown. We were gone for a couple of hours, and when we returned Levi was doing the same thing he had been doing when we left.... playing with legos. If that kid has someone to build with, he can play legos all day long. No kidding.

In other more exciting news, my sister is getting married! They got engaged last weekend. They are going for a super short engagement of only six weeks! She asked me to be the maid of honor. I can't wait! Kyle asked my parents for Rebecca's hand when we were all up at the lake. (So I guess my parents have known for awhile.) Their personalities are perfect for each other, and I am so happy for them! I love you Rebecca and Kyle!
I have been SO busy since this weekend I haven't gotten to speak to Rebecca for more than like two minutes at a time on the phone, so I still haven't gotten to hear the story of how he proposed. She started to tell me they were at the beach, and then I literally had to get off the line because my name was being called for an appointment. So yeah, pretty sad. I'm sure I'll find out soon though. Maybe tomorrow.

Tomorrow we are going to head to the RV park my grandparents are staying at and swim in the pool there. Should be lots of fun!

sixtyfiveroses.etsy.com

2010-05-08T11:06:00.000-07:00

My friend Hope opened up shop on Etsy! She specializes in finding hidden vintage treasures at thrift shops and making them available for the rest of the world to enjoy! She plans on continuing to add more and more to her inventory so keep checking back to make sure you didn't miss anything new! Also, she will be donating a percentage to the Cystic Fibrosis Foundation. Click HERE to visit her online boutique!

Ham

2010-05-07T17:37:00.000-07:00

A couple of months ago I took Levi to the park. He took his scooter while I walked alongside. At one point during our walk I said "Wait Levi. Let me get a picture of you with your scooter." All of a sudden he started striking all of these random, different poses. I kid you not, all of these pictures were taken in a time frame of under 30 seconds! Um... SOMEONE is waaaay too used to the camera!!!! Haha

My son is such a little goofball.

My Upper Endoscopy

2010-04-29T00:00:00.000-07:00

So I think that I have kind of been avoiding posting a real post on here. I have felt crummy lately. I have also come to the realization that I don't like writing about the hard times as much as I enjoy writing about fun times. Maybe because I like to be the bearer of good news, instead of sounding whiny. Or maybe because I feel bad, I just don't feel like putting energy into anything. That might be the case, because I have been avoiding work this week like the plague.

Monday I went to Stanford to have a procedure done. A full GI work-up. I randomly get really intense sharp pain (worse than childbirth). It doesn't happen that often, but when it hits, it is crazy intense. It started back last year before my transplant. They didn't want to do the procedure back then because I would be sedated, and the doctors didn't feel like I was healthy enough at the time to go through that. So it got put on the back burner. New lungs came first -- it was more important. Finally, now that my health is better I was able to get the procedure done and be scoped.

That is how I spent lovely Monday. Sedated. Seth had to take off of work because I wasn't allowed to drive myself home. I thought it was funny also that the nurse dude ( I really don't know his title) told me to watch out and to not sign any important documents, haha.

It all went well. I think. I can't really remember. Yeah, it did. I'm pretty sure. Anyway, they put a scope down in my belly to look around. An upper endoscopy I believe it is called. They found inflammation, but that is all as far as I know. I have to schedule a follow up appointment to really find out the nitty-gritty. Before I had the test done, the doctors all seemed to think I had gastritis.
They threaded a tube from a machine through my nose down into my stomach. I had to leave it there for twenty-four hours. Then I had to drive back up there to get it removed the next day.

After my dramatic dog Chiquita gets a bath, we wrap her up in a towel and place her on our couch. She sits there shivering, and won't budge for literally hours upon hours. Sometimes all night. She hunkers herself there in self pity. She can't believe what horror just happened to her and she remains frozen in dejection.

That was how I felt earlier this week. Every time I ate, sat up, laid down I had to press a button on a machine that was threaded through my nose and throat. I wasn't allowed to shower (and if you know me, you know how much that bothers me). Needless to say, I wasn't running around the house happily cooking dinner and caring for my family. I sat, like my chihuahua, frozen and not wanting to move. Every time I chewed or swallowed I could feel the tube tugging up and down my nose and throat. It was pretty gross, not to mention very uncomfortable. I also didn't feel like blogging, I guess. But now that the tube has been removed, I have regained my freedom, and I feel much more like myself, I am happy to share the gross, gory, details with you all. Ha.

Besides being somewhat of a baby about the whole tube-in-my-nose-thing I still have my lingering cold. Or should I say cough? The cold is gone, but I am still coughing during the night. It is getting better, but very slowly. So yeah, it just hasn't been the best week health-wise compared to others. That is when I feel like hiding out, and waiting for the storm to blow over. And it is.

2010-04-28T21:02:00.000-07:00

How we roll

2010-04-25T00:15:00.000-07:00

Roller Skating. Yes!!

Dear Hospital

2010-04-19T11:08:00.000-07:00

Dear Hospital,

I hope this letter finds you well. Today I will be leaving you. It is time I moved on. We are just not the best for each other, and being around you makes me feel slightly sick. I hope to not see you again for a very, very long time. Try not to take it personal. I'm sure it won't be too hard for you to part with me; there will be someone else to move in and take my place.

Signed,
Leah

Camping out

2010-04-15T16:21:00.000-07:00

I made it. Last night I checked in, got a room, and and settled in here. The unknown is now the known. This stay is very, very different than a "cystic fibrosis" stay. It has been an adventure.

I am not on a single antibiotic -- (you can't use antibiotics to treat colds) I have no CPT to do, which used to take up most of my time as an inpatient. I don't have a single IV med dripping during the day. No seriously, not one, at all.

It has been lonely and boring. New wing of the hospital, new nurses, new everything. Usually in the past with my old CF regimen there were so many people popping their heads in and out of my room I never had a chance to get bored. I haven't seen anyone since this morning. It is so bizarre. ... cricket ...

Boring is better than crisis though. I will take boring over crisis any day. I had no adverse reactions to any of the new medications I was put on, praise the Lord. That was really my main concern or worry. Severe allergic reactions are never fun to say the least. I have experienced one or two, and that is more than I need to know I don't want to ever experience that again.

The days are easier than I would have imagined. The nights are what are really different...

I do have I.V. meds, they all run at night when I am asleep, which is nice. The so called "breathing treatment" is not really what I expected. It lasts six hours and also takes place while I am asleep. They put me in a clear plastic tent. The tent is misted. They also put an "oxygen mask"on me and that is what delivers the antiviral medication. The medication is highly toxic, so people are to enter my room while it is being administered at a minimum. The people who do enter are wearing gloves, gowns, plastic face shields, and masks. When the treatment is done I am covered in a powdery substance, and then must go shower immediately to detox and wash away the chemicals. While I clean off they come and change my bedding too (also mandatory). The whole thing seems a little bit sci-fi or something. It reminds me of something that might show up on LOST, haha.

My cold is already feeling better. My stuffy nose is dissipating. My x-ray looked good. My blood sugars are crazy out of whack, but they tell me it is probably because of the high doses of some medications I am on right now. I have begun insulin shots, at least while I am in here. One night down, four more to go, and my cold is already on it's way out.

So when you hear there is "no cure for the common cold" it seems as though there is. It is just a little bit intense.

Bad News

2010-04-14T14:27:00.000-07:00

The transplant nurse called me today with the results from yesterday's swab. She confirmed that I have a virus. ( I knew that already by how lousy I feel) And then she dropped the bomb...

I need to be admitted.

I have one of the seven viruses that they test for! Can you believe it?!?! Ugh. I have RSV (respiratory syncytial virus). I remember hearing about that virus when Levi was a baby... it is common in little kids.

So this means I have to spend five to seven days in the hospital. I am bummed, but more than that I am just scared of the unknown. I have done the hospital thing before, but never as a transplant recipient. I don't know how my body will react to these new medications. I am hoping it will be relatively easy but I just don't know.

I was kind of taken aback and a little shocked by the news, especially since I have been feeling so well the last couple of months. Weird how a little germ can just change all my plans.

Seth is going to take a few days off of work to stay home with Levi. My parents might then take him over the weekend. Right now I am just waiting to hear back from the hospital when they have a bed available for me.

Time crawls so much slower in the hospital, so if you feel so inclined leave me a comment or message. It brightens up my day, and helps time to go by a little faster. I would normally say to come visit, but when I googled RSV I learned that it is highly contagious. I don't want to give anyone this cold...

Sick in the head

2010-04-13T17:17:00.000-07:00

So yeah.

I caught the cold! Boo hoo. I have been sick for about three days now. I don't feel horrible, just a normal run of the mill cold. Levi had it much worse. He had a fever, aches, coughing, runny nose, etc. The whole nine yards and he was down for the count. He just laid around, which if you know Levi you know how unusual that is. He actually took naps... he barely took naps when he was a baby! Seth is sick too.

So with newly transplanted lungs and colds you don't mess around. I have to call the transplant clinic every time I get sick. They then have me come up and get "swabbed." So today I drove up to Stanford to have a very, very long little Q-tip inserted up my nose.

I need to take a little detour to tell you just how awful this little test is. It sounds harmless, right? Wrong. Do you know how far back your sinuses go into your head? They push that little Q-tip thing way back farther than you would ever think it could go. They push it to the back of your head, or so it feels like it. If you have had this done, you know exactly what I'm talking about. If you haven't -- good for you. You don't want it.

Apparently, according to my transplant doctor, there are about 300 cold viruses. Seven of those 300 are potentially harmful to me. They need to test to make sure I don't have one of the seven viruses that would cause me harm. Better safe than sorry-- that's why they must test every time I get sick. If I do end up having one of the seven I have to be admitted to the hospital for five days to be treated. They give special breathing treatments and such. Five days in the hospital is no biggie for me, but obviously I am hoping and praying that I don't ever have to do that.

The test results should be in tomorrow.

Stuffed Chicken

2010-04-12T18:36:00.000-07:00

This isn't a cooking blog... nor do I want it to turn into one. But I do cook. I like to cook healthy meals for my family. Anyways, I made stuffed chicken breasts for dinner tonight. I don't think I have ever made stuffed anything before. If I have, it was so long ago, that I have forgotten. Anything with the word "stuffed" always seems a bit intimidating to me to be perfectly honest... I am way more comfortable cooking boring old casseroles or homemade bread. This recipe looked yummy though so I decided to give it a shot and try it.

I used kitchen scissors to cut up the fresh organic baby spinach.

Sun dried tomatoes would have to qualify as one of my favourite flavors in the whole world.

My son Levi says he doesn't like cheese. He eats it more than he realizes though, and he likes it when he doesn't know he is eating it. He also eats it when it's on pizza. Go figure. I sometimes wonder how this kid who came from my womb doesn't like cheese. That is a foreign concept to me. My brain does not compute. I love the stuff -- every kind of cheese I have ever tried, I have loved.

Hopefully he won't realize that this feta, is in fact, cheese...

The lemon was the fun part. Because all I have to do is walk out to my backyard and pick one. I adore having a lemon tree, I really do. This one just started growing one year randomly. A little gift from God I guess. We didn't plant it, we didn't even know it was there for years. Until one year it just pretty much came out of nowhere. If I could have picked, out of all of the fruit trees to have I would totally pick lemon. We go through the lemons like water. Literally. Because I add lemon to my water, and just drink lemon water.

Today it was rainy. Look! The lemon is already partly washed!

The recipe called for some lemon peel. I was searching all over the kitchen for my cheese grater with no luck. Seth reminded me that we had this miniature one. The recipe only called for a teaspoon, so hey it worked! (I still never found the regular sized one)

The miniature cheese grater is pretty cute, but not as cute as the little face behind it.

Pounding the chicken is my least favorite part. The pounding was fun, I just don't really like touching the raw meat. I deal though, and just wash my hands well afterward. I used food storage bags to place the chicken breasts in. It worked quite nicely.

If I made this recipe again I might chop up less than three cups of fresh spinach. I crammed as much of the mixture into the chicken as would fit, and still had some leftover. I really don't like to waste -- especially expensive ingredients. Next time I think I would chop two cups instead of three.

So how did it turn out? Pretty good I think. Levi said it was gross *sigh* but he said that before he even tasted it. So yeah, not really a reliable source. I thought it was really yummy. Polenta is a little bland, but the stuffed chicken was flavorful enough to make up for it. Seth said it was delicious.

Okay. So here is the recipe in case you want to try it for yourself...

Stuffed Chicken Breasts

Makes 6 servings

6 boneless skinless chicken breasts

8 ounces feta cheese, crumbled

3 cups chopped fresh spinach leaves

1/3 cup oil-packed sun-dried tomatoes, drained and chopped

1 teaspoon minced lemon peel

1 teaspoon dried basil, oregano or mint

1/2 teaspoon garlic powder

Black pepper, to taste

1 can (15 ounces) diced tomatoes, undrained

1/2 cup oil cured olives

Hot cooked polenta

1. Place chicken breast between two pieces of plastic wrap. Using tenderizer mallet or back of skillet, pound breast until about 1/4 inch thick. Repeat with remaining chicken.

2. Combine feta, spinach, sun-dried tomatoes, lemon peel, basil, garlic powder, and pepper in medium bowl.

3. Lay pounded chicken, smooth side down, on work surface. Place feta mixture on wide end of breast. Roll tightly. Repeat with remaining chicken.

4. Place rolled chicken, seam side down, in crock pot slow cooker. Top with diced tomatoes with juice and olives. Cover; cook on low 5 1/2 to 6 hours or on high 4 hours. Serve with polenta.

Hunt Photos

2010-04-11T16:50:00.000-07:00

What we've been up to...

2010-04-09T11:03:00.000-07:00

I'm way behind on keeping this blog up-to-date. I've been a busy lady, in a good way.

Levi is still in swimming lessons twice a week, while I'm still in my workout/maintenance program twice a week. Levi and I have been jogging on the beach quite a bit lately also. He doesn't view it as jogging, we are playing tag, but it's the best way to get him to run!

On Sunday afternoons for the last couple of months while Seth is doing worship practice I have been going to my friend Chris' house with other girlfriends from church and we have been watching a different Jane Austen flick every time. Let me tell you, Chris lays out the most marvelous spread of yummy tea party treats! We have tea sandwiches, wraps, chocolate, cheesecake, cookies, fruit, etc. not to mention tea. We kinda end up talking through most of the movies, but I love it and totally cherish the girlie time. Chris' awesome son Matt plays with Levi (and all the other little kids) outside. It is a really nice break. We haven't watched my favourite movie of all time yet, Sense and Sensibility (the one with Emma Thompson and Kate Winslet) but it is so fun to watch new ones I have never seen before. Time before last was Jane Austen Regrets and I just loved it!

We also were busy preparing for Easter weekend. Our church had a giant Easter Egg hunt (as you can see from the post below) at a park for the community. We stuffed over 5,000 eggs! The event turned out awesome. It was so packed! There was face painting, candy, prizes, refreshments, balloons, and coloring/crafts. There was even Starbucks, and our friend Imelda walking around in a bunny costume posing for pictures. I got to be one of the photographers and help stuff eggs. Have I ever mentioned that I love assembly lines? Because I do.

Seth and I were also in a short eight minute skit that we performed Easter morning at our church. It was a dramatization to music of how Jesus has redeemed us. That afternoon we had lunch at my house as we do every year. Our friend Jack came and joined us. I adore celebrating Easter at my house every year. It has become one of my very favourite days. We are the only ones with a big backyard, and I get to be the one who hides the eggs. This year it was so rainy that we took a rain check (ha) and we are gonna do the hunt next week.

That evening Levi and I left for vacation -- sadly leaving poor Seth behind. He wasn't able to get the time off of work that he requested. My sister's roomate's family has a cabin right on the water in Clearlake. They let us stay there for free, which is super nice of them. It ended up being my dad, mom, sister, my sister's boyfriend, Levi and I. We basically just hung around, went on walks, the guys fished, and everyone napped everyday except my mom, me and Levi. It was kinda a forced relaxation type of vacation.
I realized on this trip I am sooooo "citified" and get bored way too easy. "What do people do out here for fun?" I kept asking myself that. I still don't know. Beats me.
The lake was so gorgeous, and the highlight was taking out the canoe and rowing around. We paddled to an island with a mysterious, really neat house on it. We could tell that people rarely used it so we got to walk around and explore. It had a hot tub, a hammock and it was decorated all asian style. I wanted to buy it right then and there. We could tell it had been someone's sanctuary at one time, even though no one had been there in a while. Our imaginations ran wild of what we would do to fix the place up. With just a little work it would be one of the most amazing houses ever.
Our last night at Clearlake we made an hour long trek into a town with the nearest theatre. That is so different than what I am used to, all I have to do is step out my door at home and I am in middle of the city, surrounded by crazy, homeless people and all. To drive that long to find a small movie theatre was a trip. Over all we had a good time. Nice to be gone, and nice to come back home, haha.

Today Levi woke with a bad cold. He sounds congested and has a horrible cough. If you think of it, please pray that I don't catch it. I am really worried about that. I am hiding away in the bedroom right now, but that can't last for long...

Anyway, that's a little bit of what we have been up to.

Fleas

2010-04-03T00:00:00.000-07:00

I sewed these little guys a very long time ago. I gave one to Levi and one to my very good friend Adam.
(Who just happens to be two years old...)

Levi named his little monster Fleas. Just recently he has been sleeping with Fleas. Instead of taking a stuffed teddy bear to bed he takes an orange monster. Why not?

Good Friday

2010-04-02T19:52:00.000-07:00

But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.
Romans 5:8

The only good thing about Good Friday is that it didn't end there. Death could not stop Jesus. God, the creator of the world, is more mighty than that. He died and took the burden of the sins of the world, but what good would that have done if He had just stayed there? Good thing that wasn't the case.

I feel melancholy every year on Good Friday, including today. I'm not completely sure why. Maybe partly because it was my sin that put Him there. He suffered for me. The weight sits heavy on my heart. Through His death I have life. I am so thankful.

Life coming from a tragic death is not a new concept for me. Jesus willingly died to give me life, and that is just amazing. Having a transplant and receiving life from someone else's death is pretty crazy as well.

So bittersweet.

But God raised him from the dead, freeing him from the agony of death, because it was impossible for death to keep its hold on him.

Art by Levi

HUNT

2010-03-31T23:05:00.001-07:00

If you live near by -- come join us on Saturday! We have stuffed 5,000 eggs full of yummy candy. There will be refreshments also, and it is free.

Date: Saturday, April 3, 2010

Time: 1:00

Location: Cuesta Park

Street: 615 Cuesta Drive

City/Town: Mountain View, CA

Eva

2010-03-27T21:34:00.000-07:00

Eva died this morning. She was a wonderful girl. Please continue to keep her friends and family in your prayers.

In the news

2010-03-25T00:00:00.000-07:00

So apparently Steve Jobs co-founder and CEO of Apple Inc. had a transplant recently too. He made a surprise visit to Stanford last Friday along with governor Schwarzenegger to "push organ donor registry."
You can read the article about it HERE

Kinda interesting.

Going Stealth

2010-03-24T06:00:00.000-07:00

In the past some of my close friends have told me they always knew when I was in a crowded room because of my one-and-only-distinctly-Leah cough. I was always hacking. Whether I was aware of it or not, it just came along with the territory of being me.

Coughing didn't really bother me too much, after all, I was born with a cough and coughed my whole life. I was pretty used to it. What bothered me more was how yucky it sounded and how everyone always thought I had a cold... or worse.

This past week Levi and I met up with our friends the Riggans to have a play date at the park. Levi wanted me to play hide and seek with him, and energetic person I am these days I was happy to. I ran across the playground to find a good tree to hide behind. I crouched there waiting for the two little boys to find me. They were taking forever because they are both too young to be good at the hiding part or the finding part. As I sat there I had a realization that I didn't need to cough! My whole life coughing didn't usually bother me except for the times where I was trying to hide or be sneaky. In a game like hide and seek where you run and then hide, I would get so out of breath only then to spend my whole time hiding trying to suppress my cough so as not to be found out.

This time was different.

I no longer cough! At all!

I'm happy about my new ability of being able to be sneaky. This might just come in handy...

Swimming Lessons!

2010-03-23T15:43:00.000-07:00

Sleep escapes me...

2010-03-16T16:03:00.000-07:00

Sleep escapes me. Coffee or espresso keeps me awake the day after.
I can see that it is a nice day out right now-- very nice in fact.
I'm kind of in a haze though.... a sleep deprivation haze.
I pulled another all-nighter. Not by choice.

I found out last night that my friend who I posted about HERE (a few posts down) passed away. I pray that she knew Jesus and that she is resting in peace. I was in tears over the loss of her. The second close CF friend I have lost in a matter of months. Oh, how I wish she had been able to get a transplant!
I am reminded at just how lucky I am.

These thoughts running around through my head didn't help my crazy brain last night.
Also, don't you hate it when you can't sleep, and you know you have to be somewhere early the next morning, so then you get all anxious that you can't sleep, which makes you even less able to sleep?
Or is that just me?

Well Levi had swimming lessons begin this morning, and by the grace of God we made it there, no sleep and all. The water was nice and peaceful and warm. I wanted to hop in and join the kids. Last summer Levi overcame the scariness of dunking his head all the way under the water. Today he was a little more hesitant but I'm thinking it was because he hasn't swam in so long. Hopefully he'll catch back up to where he left off last summer in no time. I know he will.

Well, *yawn* until next time...

Loving the Light!

2010-03-15T20:48:00.000-07:00

I'm just loving the time change! This morning I made dinner in the crock pot, set it to slow cook, and played all day! Levi and I hung out down at the beach. The weather was just gorgeous. We went on a long walk and found some tide pools with sea anemones. We always touch them to watch them shrivel up as they suck our fingers. I jogged a bit and it felt wonderful! We raced so many times. Levi wanted to climb on the jetty so we did that too.

Later after dinner the three of us went on a bike ride until after sunset. As we passed through the different neighbourhoods it smelled as if everyone was BBQing. I think summer is on it's way! It is days like today when I just love living in Santa Cruz.

Rehab

2010-03-12T12:25:00.000-08:00

Yesterday I officially completed pulmonary rehab! I'm done! I have been going twice a week ever since the transplant and yesterday I graduated! Yay!

Actually I really didn't mind going, and sometimes I rather enjoyed it. It gets me up in the morning and out exercising. So I may continue with the "maintenance program" that the hospital offers. It would still be twice a week, and if my insurance covers it it is much cheaper for me than buying than a gym membership.

If I do continue at this point it is no longer mandatory though.... just of my own free will... and I can stop at any time.

Yay!

Inquiring

2010-03-11T02:06:00.000-08:00

Can I just take a moment from the regularly scheduled programming to say something?

CYSTIC FIBROSIS SUCKS.

(I would use stronger language, but I don't use stronger language.)

Some of you already know this but in case you didn't -- take my word for it. I generally don't like to complain about this stupid disease I was born with. Although it has caused me much pain and suffering I fully believe that things could be much, much worse.

Tonight, though, I am fully reminded of just how heartbreaking and horrible CF is.

One of my childhood friends from CF camp is dying right now as we speak. She keeps getting turned down to be listed for transplants at different hospitals. She is not getting the "second chance" that I was able to have. The doctors have decided that she has too many complications to receive a lung transplant. Every summer we shared a cabin for a week, and I remember being closest to her than anyone else at good old Camp Pillfeather. She is a fun, bubbly person and it is just so sad to see her so sick and hurting.
Yes, CF sucks.

Tonight we were blessed to have another friend of ours drop by the house for a visit. She has always been such a blessing in my life... I love talking with her. Her walk with the Lord is so encouraging and she is not afraid to be real. She has always been nothing but gracious to me. She lost her son to Cystic Fibrosis when he was only five years old. This is particularly gut wrenching to think about as it is the exact same age my son Levi is right now. It is truly heart breaking and just plain old not fair. Knowing that that sweet little boy had to suffer, brings me to tears. She told me of how she would hook him up to his IV while he rode his tricycle around. That little guy had more to deal with than most adults ever have to. Despite her best efforts her son never got the chance to do so many things here on earth. I know how awesome of a mom she was (and is) and it just kills me that her son was taken from her and at such a young age.
Yes - CF sucks. Bigtime.

God has a plan for everything, and while I struggle to understand why He allows certain bad things to happen, I'm convinced that I won't be able to grasp that concept until I am in heaven. How can a loving God allow a child to suffer and die like that?

Honestly, I don't know.

I don't know why He has allowed me personally to be in so much physical pain. Back when I was feeling sick that is a question I would literally ponder on a daily basis.

Why?

Why?

I do know that there are reasons. I do know that we are not here by an accident. I do know that the God in heaven is a loving God who cares about us more than we even care about ourselves. I do know these things... but there are a lot of things I don't know. Why He allows suffering is one of them. I know God well enough to know to trust Him. To trust that He works out everything for good for those that love Him. I know that we live in a fallen world, and we have all sinned and deserve death. But the question remains... If God is God then couldn't He just change the way it is "set up?" Couldn't He make it so we don't deserve death? (He did actually by dying for us on the cross --- but that is a whole other blog entry in and of itself...) Anyways while this is something I struggle to wrap my mind around this scripture always comes to mind.

The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21

I may not understand anything right now, but I choose to praise God anyway. In heaven our tears will be wiped away, and I hope we someday will understand in heaven. This is also a somewhat encouraging scripture to me:

Blessed [be] the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 2 Corinthians 1:3-4

Anyway CF sucks. It really, truly does. It is a way more intense disease than people realize. It is deceiving because people with CF look healthy even when they are not. But there is real suffering, pain and hurting beneath. CF sucks, but God is good. And although to many people that does not make sense, it is truth. For those of you that are Christians here is some scripture directed towards us regarding suffering:

Therefore we do not lose heart. Even though our outward man is perishing, yet the inward [man] is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding [and] eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen [are] temporary, but the things which are not seen [are] eternal. 2 Corintians 4:16-18

For I consider that the sufferings of this present time are not worthy [to be compared] with the glory which shall be revealed in us. Romans 8:18

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. Romans 5:3-5

A topic so mind boggling and confusing as to why a loving God allows bad things to happen, it helps me to try to keep an eternal perspective.

I cannot see the big picture.
I cannot see everything at once.
I cannot see the future.
I cannot see outside of time.

I'm just trusting....

On the Lake

2010-03-09T08:48:00.000-08:00

Look what I found!
This is a very old photograph of Levi, but I just love it. I took this several years ago with my Holga.
We went kayaking and packed snacks and picnicked out in middle of the water. It was a beautiful way to spend a lazy Saturday afternoon.
I can't wait to do it again!

Quilt Raffle

2010-03-06T23:19:00.000-08:00

Today we met up for bagels with our friend Sue Sollee-Watkins. Back when I had my transplant Sue was reading this blog and saw the post where Seth asked for fundraising ideas. She couldn't sleep that night as she was praying and trying to brainstorm a way to help. She has made quilts in the past, and she said the Lord placed it on her heart to auction off a quilt she had designed to help us raise money for transplanted related expenses.

Sue was obedient to the Lord and began going around to different churches each week explaining my story and selling raffle tickets. She sold tickets 3 for 10 dollars to hold a raffle and the winner was to receive the beautifully crafted quilt she had put together.

Sue works at Dominican hospital as a nurse, and I had met her back when I would get my medi-port flushed in her department. Her wonderful co-workers and her held the drawing on March 4th at noon. They shook up all the tickets and had a patient who knew nothing about the raffle draw the winning ticket to make sure it wasn't rigged.

It just so happened that the winner was a pulmonologist (from the same local office I have been to) and his wife is the president of Domincan hospital!
How cool is that?
Then they graciously decided to give up the quilt so Sue could give it to me!

Thank you so much to Sue and everyone over at Calvary Chapel of Santa Cruz who helped her with this. It has been such a huge and overwhelming blessing for us. Also thank you to every one who supported us by buying a raffle ticket. God used this to not only sustain us financially the months Seth had to take off work, but to teach us a lesson in trusting in Him and His provision when we are in need.

Sue told us that there are 192 verses in the bible that say rejoice, 18 say rejoiceth, 28 say rejoicing and 47 say rejoiced.

Rejoice in the Lord always. Again I will say rejoice! Philipians 4:4

Pop and Nana

2010-03-05T19:37:00.000-08:00

My grandparents were here in town visiting for this whole week. We had a nice little time. Levi and my grandpa (his great-grandpa) spent hours playing together. Very special times. They were drawing together with chalk on the sidewalk and playing Legos for hours on end.

One of the days we attempted a walk to the park but got caught out in the rain and had to return home. Have I mentioned that I'm looking forward to warmer weather yet?

It has been one of those "normal life" kinda weeks. Busy week, and a very busy weekend ahead. I'm thankful for the energy to keep up.

Anyway, I just wanted to post something quick -- instead of nothing at all.

dreaming of nothing

2010-03-01T05:29:00.000-08:00

again. yep.

nothing better to do but type tired jumble

i made a list already

all the inventive thoughts

to dos

written down

to return to them in the daylight

i was laying against the mattress

with my ear pressed up against the surface

every time i breathe i hear the faint sound of springs

up and down

rise and fall

why?

i'm not heaving

i breathe normal now

silly mattress!

no deep thoughts tonight

that is agreeable

'cause if your touring your mind

you'll get lost every time

i don't like to think about the past much

usually i do.

i like to think about the future

only because it looks bright

making plans

it wasn't bright earlier

the times they are a changin

it is so cold

the 1940's heater plugging away still

it's heating up

my eyes are getting heavy again

scratchy even

maybe i'll go back to listening

to the boxsprings

and thinking not too hard tonight

or morning.

whateves.

Gloomy

2010-02-26T14:46:00.001-08:00

kitchen window view