Thursday, March 26, 2009

Poking and Prodding

Our poor, sweet girl has entered back into the world of genetic testing. We are finally looking into reoccurrence rates to somehow try and understand the likelihood of Eden’s heart condition developing in future children. As you know, she has been through extensive testing already when we were trying to learn why her HCM developed and if it would happen again in a new heart. We came up empty handed and it was determined that she did not have any of the suspected syndromes or metabolic diseases that would have disqualified her from receiving a transplant. Now we are looking into gene mutations that are known to be hereditary as well as a few other conditions that have been discovered since our last round of testing.

I hate every part of these testing processes: the scouring and measuring of her every body part, the labeling of her abnormalities, the painful pokes, the inability to explain it to Eden, the wait…. the terribly long wait…, and then the dreaded phone call. Ugh.

Why didn’t they just test for everything when they had her blood the last time, you ask? Good question. Actually, genetic testing is extremely sensitive and many tests require different rules for the way the blood is drawn. They also seem to need A LOT of blood and we couldn’t possibly take it all at one time. In fact, Eden has such small veins that it is difficult to get any blood at all, not to mention the screaming and crying that keeps her favorite nurses at bay. She doesn’t kick and fight, actually she is so irresistible with her “please… all done” and “no thank you, no more” whimpery type cries that any phlebotomist with a heart at all just melts in front of her.

In the end, they poked her a million times, they “blew out” a vein, they didn’t get enough blood, and we have to start all over again when her arms (and emotions) heal. Eden already seems to be over it, but I still need some more time to recuperate. :)

Good thing they sell wonderful homemade gelato at The Children’s Hospital. We shared a scoop for breakfast and all was well again.

(By the way, if I had to lay on an examining table to have my body's abnormalities measured and labeled I think I’d go jump off a cliff. It’s like some bad sorority dream. At some point, this can’t be good for her psyche right?)

Sunday, March 22, 2009

The magic wand and our reality

Eden has the most fascinating imagination I have ever witnessed. I have heard that this is fairly typical for a three year old, but I still like to think that she is an above-average "make-believer". Seriously, Barney would be jealous.

On Thursday, she opened a late birthday package that included this wand among other magical princess necessities. She ran around the front yard, stars glistening a top her head, ribbons flowing behind her, creating only things that she could see - beautiful, magical, glorious things. Of course, she gave all the credit to the wand in her hand.

The very next morning we awoke to cries from Eden's room. We found her in bed, vomiting uncontrollably. This continued for several more hours - repeatedly changing sheets and pajamas - paging her doctors - crying - and calling my mom (these are the moments when I don't want to be the mom anymore). The consensus was that Eden had some sort of stomach virus. A nasty, mean one, that doesn't even like water or medicine. She spent the next two days here:

and I spent the next two nights here:

There were so many moments in the last 48 hours that I really wished this wand could share a little of it's magic. I wasn't wishing for the unimaginable... like a healthy child, a "normal" heart child, or a child that could eat and grow... that stuff is so over-rated. If that wand would have granted me one wish, I would have simply asked for my happy child.

Tonight she has returned and I go back to my bed giving thanks for the little things: laughter, hydration, and a good night's sleep.

PS... because you may be wondering... rejection was ruled out, but we won't actually know until our scheduled heart appointment on Wednesday morning. This is always our fear and is more of a concern when Eden is repeatedly fighting illness as she has been lately.

(this is what I got for sleeping on the floor!)

Wednesday, March 18, 2009

My daddy and I

Brian has really been helping with Eden a lot lately so that I can rap up this thesis I've been writing. Luckily his job is flexible. For instance, today he came home for a couple of hours in the afternoon (knowing that she would be mostly napping) and I was able to leave for a meeting. He is traveling to LA a lot right now, but usually tries to limit the over-nights so that he can be home in the evening and I can still get some study time. I am so grateful for his help and Eden is loving the extra alone time with her daddy.

A couple of weeks ago, Brian knew he was going to need to go to a work site in the evening so he came home and took Eden along for the ride. These are a few of the pictures he came back with and I was a bit inspired to write a little poem (from Eden to her Daddy).

My Daddy and I

There's this guy in my life I like to call Daddy
who's tall and lean and handsome.
He's there when I wake up and go to bed at night
and all day on the weekends, it's awesome!

My daddy and I have a wonderful time
no matter what we are doing.
We may paint or wrestle, read or slide
but our favorite is pretend coffee brewing.

My daddy and I go on many adventures
oh how I love to be at his side.
Be it behind his bike or in his backpack,
I'm always along for the ride.

My daddy and I even work well together
I am always up for the task,
maybe around the house or at a river bend
all he has to do is ask.

There's this guy in my life I like to call Daddy
who is oh so very cool.
If is wasn't for Zander or Vincent or Colton
I'd never want to grow up and go to school!

Tuesday, March 17, 2009

I'm a Murphy

Let's Celebrate!

Sending you the best wishes for a happy and safe

St. Patrick's Day!

Sunday, March 15, 2009

Twin Cousins

I never had a sister to look like, dress like, or strive to be like.... but luckily I grew up with the greatest cousin ever (and we kinda look alike - extra bonus). Since Eden doesn't have any siblings either, I am so happy that she has so many wonderful cousins. They are all special to her, of course, but Campbell has found a little place in Eden's heart. I am sure it has something to do with the fact that she is older by an influential amount of months. It is just the right amount of months (15) to equal sainthood... Eden worships the ground she walks on. I remember that feeling so well. I actually preferred clothes that said "Kate" rather than "Kera"! So, I am not sure if these two girls are dressed alike to satisfy me or them... but aren't they adorable??

sidewalk chalk

heading out to explore

(only the best cousins will pull you in a wagon)

pine cone hunt

At the park in Scott City, an hour drive from the ranch!

Playdough fun

Celebrating a great day!

Thanks for meeting me at the ranch, Campbell.

Friday, March 13, 2009

The forgotten birthday

Brian turned 31 years old on February 27th.

We weren't able to celebrate with him because he was working in Jordan at the time. We did talk on the phone, Eden sang to him, and he spent the day floating in the Dead Sea - not so bad, huh? I still felt badly for missing an opportunity to honor him, even though we gifted and dined the night he came home. So while he was away, I thought and pined over a unique way to wish him a happy birthday... I came up with this card and the following written inside:

Dear Brian,

31 things I love about you, for your 31st birthday:

1. I love your independence and your strong sense of self
2. I love that you are still able to include Eden and I so well in your life
3. I love to watch you with Eden, you are such a wonderful father
4. I love that you still try to sing and dance with Eden even though it’s not really your thing.
5. I love how much you love your family
6. I love how well you keep in touch with your friends
7. I love the way you take care of me
8. I love how you can look into my eyes and know if something is wrong
9. I love how much you teach me and push me to be better
10. I love your intelligence and thirst for knowledge
11. I love that you are always “in the know” – news, weather, and entertainment to mention a few.
12. I love that in times of difficulty you are driven to work harder and be better
13. I love your ability to stay positive (especially when I am freaking out) – you are always the optimist
14. I love that you can multi-task (like no other man can)
15. I love how handy you are around the house
16. I love your love of music, literature and art
17. I love your sense of wonder and adventure
18. I love the way we met – I still look at you sometimes and think… you’re that guy from Bolivia!
19. I love how well we travel together
20. I love it when you speak Spanish
21. I love your appreciation for the mountains
22. I love your need for exercise and your interest in caring for your health
23. I love how much you love the Earth
24. I love your conscience and need to do the right thing
25. I love your sense of style
28. -> These five are for Brian only.... :)
31. And last but not least, Eden says she loves you “cause he plays with me”. We both love your playfulness.

P.S. I love it that I had to work to confine my list to just 31.

Jane (and I love it that you call me this)

--- I questioned whether or not you would care to read this, but decided in the end, that you are checking this blog because you care so much for Eden. There is no doubt that Brian is one of her greatest fans. He works so hard and definitely deserves some credit. Don't you agree?


Wow! I am so behind and so much has happened lately. Please stay tuned for a recap of Brian's birthday (oh, you're gonna love this one), twin cousins at the ranch (too cute not to post), and some odds and ends to boot (like maybe, just maybe a poem written by.... me, sigh). We've been visited, gifted, and blessed so much that it will take several days to catch up. Thanks for your patience and thanks for caring enough to read. We love you all.

P.S. Eden is cold-free. Yipee!

P.S.S. Have you met Tinkerbell?

(waving arms and saying 'flap, flap')

Wednesday, March 4, 2009

March forth

With a heavy heart, exactly one year ago, I sent this email to many of you.

Wow! What a difference a year makes!!

Dear all,

I read an article in the newspaper this week about a woman who has been inspired by the date, March 4th, or as she says… March forth! She describes it as the only date that can be used as a command, a verb; that literally compels you to action. She has celebrated it most of her life and now encourages others to wake up, get out, dream big and march forth! I find it as no coincidence Eden's big day of testing which resulted in her being listed for a heart transplant was this last Tuesday, the day after her 2nd birthday, March 4th. We came home from the hospital after ten long hours. Eden was exhausted and in pain. I felt depressed and defeated. After two years of fighting, hoping and praying for this child's life, it was official, she will need a new heart in order to continue living. Although it is painful at so many levels… understanding Eden's current fragile state; waiting for another child to die; being unsure of the future…, a line has been drawn and it is time to move forward. March forth. It has taken me a long time to learn that I did not cause Eden's heart condition and there is nothing I can do to fix it. She may die in the next year or outlive me by forty. What I can do, what I have to do, is put one foot in front of the other and continue on. Progress. March forth. We have learned that our wait for a heart may be long and in effort to "march forth"; I will be running everyday until Eden receives a heart – if for no other reason than to keep my mind off of the waiting. I plan to use the time to clear my head; strengthening my own heart, sending some of that extra energy to her. Join me if you like… or not, but either way please keep us in mind. Eden is quite the fighter and seems to be choosing to stick around for a reason. We pray she continues for four or so more months.

Love and hope,
Kera, Brian and Eden Raine

This day comes at the perfect time. The day after Eden's birthday.

Just as Spring is starting to show her face again. I am motivated to get outside.

It is not just the end of a crazy, stressful year. It is most certainly a beginning.

March 4th. March forth!

The birthday girl's bloopers

The only picture of the day -
taken just after her cupcake was rescued from the kitchen floor!

As anticipated, Eden's birthday wasn't all that we had hoped. Interfering mostly, was a bad cold (which leads to poor eating and sleeping... which leads to a very poor attitude). The day did have 3 very wonderful moments.

1) She awoke to find her gifts in the living room then ran to the top of our stairs and yelled down to Brian and I with much excitement, "Mommy, Daddy, look what I got! Santa came!" She was on cloud nine until about 11am - new toys and books and clothes galore.

Now we'll skip past a bit of crying and at least two temper tantrums to...

2) A picnic lunch at her favorite "Turtle Park". Well, we ate and she climbed and swung and slid and said "watch me do ___ by myself". Brian and I paused with awareness that a year earlier we were not sure this day would come.

There was some more fussiness, a head butt, and a nap, then....

3) Our friends, Mark, Alyssa, and Mackenzie came over at a last minute attempt to save Eden's birthday. Playing with Mackenzie can't cure a cold, but makes most everything else better.

Thanks for all of your birthday wishes. I checked our voicemail this morning to find that Eden had 32 messages! She is such a lucky girl.
We are hoping to have something like this in our back yard soon - our families have pitched in and Eden couldn't be more excited. We would love to have a christening party this Spring with Eden's friends.

Monday, March 2, 2009

A birthday hiccup

Tomorrow is Eden's 3rd birthday - her "golden" birthday. I had so many wonderful things to update you on tonight.


-- We made it home from the ranch, happy, healthy, and with a functioning tape deck (nothing that a set of tweezers and a flash light couldn't fix)

-- We had a great heart clinic appointment. After a six week cold, Eden's heart looked great and her medicine levels were perfect. They said she was ready to push the appts. out to every month!

-- Brian made it home from Jordan safe and sound. We were so excited to welcome him and he was so excited to see his bags arrive. (He spent the first half of his trip in the same clothes because his bags didn't make it for 6 days.)

-- We had a fun belated birthday dinner last night for Brian. He opened his gifts and shared his offerings from Jordan.

-- To top it all off, Eden was the happiest little kid you've ever seen today. Her daddy is home and her birthday is tomorrow. She was bouncing off the walls!
Now for the bad news... at about 6pm I started to notice that her mild runny nose (I had been in denial about) was looking more serious. Then, her voice started to sound congested. I finally put her to bed tonight with the true signs of another cold. Tears welled in my eyes. It's not fair. I know it could be worse, but I just hate it. She has had exactly one week of beauty rest and happiness. It was pure bliss. It is so discouraging to live with the reality of Eden's minimal immune system. The fear of rejection comes back again. Ugh.

To cheer myself up, I wrapped all of Eden's presents (including the ones we received from you all in the mail) and placed them in the living room. I kept my thoughts on a fun day of celebration tomorrow. I also referred back to our dinner conversation tonight...

Brian: "Eden, when is your birthday?"
Eden: "03-03-06!!" (with excitement)
Kera: "So then what's happening tomorrow?"
Eden: "MY BIRTHDAY!!!"
Brian: "Did you know I'm staying home with you and mommy tomorrow? What should we do?"
Eden: "I don't know. What do you do on your birthday?"
... we discuss our plans and then...
Kera: "Well, there will be lots of presents for you to open. We could start with them in the morning."
... Eden's eye brows raise and she starts clapping with excitement...
Eden: "Yea! Santa's coming again!!"
Laughter fills the air.

I pray tonight that Eden enjoys a wonderful day tomorrow. That this cold is nothing like the last. That I am able to see past this hiccup and give thanks for another year with this amazing little girl.

Good night.