Sunday, January 31, 2010

Heaven




Our sweet "little" friend Saja has passed on to be with our Father in Heaven. She is whole, strong, healthy, walking, singing, dancing, jumping, running and no doubts about it, is HAPPY. She will be missed by many, myself and James included. Love you Sweet Saja. Go meet London's Angel...you will be the best of friends. She'll teach you not to fear dogs anymore and how to ride a horse. Loves sweet girl, til we meet again.

Saturday, January 30, 2010

If this doesn't make you smile....

video

....I'm not sure what will. LuLu not only got a "perfect liver" from her sweet donor, but she got an extra spark and twinkle in her eyes as well. Forever grateful to her family, for their sacrifice...to ALL donors and donor families.

I just wanted to share a smidge of a conversation I had with Dr. Book days after transplant. We were talking about what a miracle this whole process is, how full circle it had become. She knew I struggled A LOT with the thought of someone losing their child in order for me to keep mine. I told her about the peace I was able to find following surgery through a series of beautiful events. What a divine, sacred process organ donation is.

Tears came from both of us when she was telling me, in so many words, her experiences witnessing organ procurement. She said that Dr. VanderWerf handles these organs with such care, love and respect that it feels like a beautiful, sacred ceremony. She said she's never been able to observe without leaving-crying many tears. She is one of the best women.

Doctors do everything they can to save a person. When they can't and when the family chooses to give life to others admits their grief, rest assured their loved ones are treated with more dignity and respect than we could ever imagine as their organs are harvested and continue living on after their soul has gone to bigger and better things. Leave your legacy, DONATE LIFE.

xoxo

lizzie, liver mum

Where in the world?


LuLu is very interested in who all our friends are, especially all the out-of-continent ones...and how you found her. Leave us a comment. Tell us a bit about you. :)...I know who's some of you are...but India? Australia? Netherlands? Australia? Jamaica? etc. etc. Crazy, it boggles her Mum's mind.

Has an Angel, Is an Angel

These wings have been hanging in London's closet for a few months. I thought they were darling when I bought them at "LuLu's Boutique" and they were only $4.95, would never have imagined the meaning they would take on mere months away from purchase. Has an Angel, Is an Angel...the later I've always known.

Another FIRST today. Shoveling Cheerios in her mouth faster than they could disintegrate. My heart sings....over CEREAL!! Her lovely headband was mailed from her friends Miss Mia (California) and her big sister, Angel Kate (Heaven). Thank you girls, she loves it.

Life is soooo good!
Daddy and LuLu's self-portrait. James is doing his very best to balance life right now. Luckily, business has stayed steady, he's doing frequent visits to the hospital and seeing Jonah most all days. There have been a few self declared take-your-son-to-work-days which are enjoyed by both parties. And of course...being an amazing husband, friend and support to me all at the same time. This MAN is remarkable.

LuLu's chest x-ray yesterday. The torture is quick, and she is strong. Turned out to look good despite some respitory struggles she has off and on. Luckily we caught NaNa, PaPa and Jones in the hallway otherwise Jonah wouldn't have been able to see her at all if we were on the ICS floor. Jones and I got to spend some quality time in the playroom as LuLu was in the company of her wonderful Badger Grandparents.

Dr. Jones

The LOVE is tangible...like you can reach out and grab it. We love you NaNa and PaPa.

"No, no Jones...leave her mask on. Don't touch her face. Germs, Germs, Germs. No, No, No. Don't do that..." Poor boy. Welcome to your new life...hard, yes. But better than the one we've left behind.


FIRST wagon ride! Unfortunately it was back and forth to the radiology department and not "around the block" but it's still a FIRST that we are happy to have. Life is GOOD and getting better every hour, every day.

Friday, January 29, 2010

little VICTORY after little VICTORY

Spoiled by my friends...a bink covered in Swarkovsky crystals!!...I protested, they said she deserves it. (and promised she got it half off...) Okay, she deserves a lot. Unfortunately she is a binki snob and will only use her blue hospital soothie. One day she will put this sweet bling in her mouth. Thanks Aunt Ally

LuLu took her bottle last night and fed herself. This is a first for her and we felt like very proud parents. So proud and excited, that nurses rushed in to see what the commotion was about. Job well done LuLy, job well done!


Wrong hole London. Trial and error....




Spoiled girl. How amazing are these boots? Pretty much to die for...soon "these boots will be made for walkin, cause that is what she'll do...one of these days these boots are gunna walk all over......errr, our house where she'll live in a bubble, for a long long time!" thx again Al. Dinner was amazing Lacer. Your company was exactly what I needed in the hospital cafeteria.



TYCHO, a furry four legged friend




Tounges-a-waggin, happy-as-can-be!

This was pre Tycho...not so happy. Thanks for the good cheer Tycho! See you again soon....
xoxo
liver mum
p.s. hi CHLOE & friends :)

Wednesday, January 27, 2010

Battle Wounds and Butterflys


This is only one appendage, they all look this way from multiple IV's, but no one's complaining.

Broviac, same as what her Picc line did before the surgery. This is more permanent...


Where one of a few lines were placed for surgeries.

Thank you Miss Eden for the beautiful BUTTERFLY bow. I learned something new with this gift...butterflies are actually an international symbol for organ donation. How very poetic. London has been taking off the last few days with her new liver. We are finally seeing her fly.

I can hardly believe it had only been 10 days post transplant and only 5 days post closure surgery when these pictures were taken. She is getting VERY little morphine or anything for pain and is as happy as can be. Resilient little bug.

Even a little Peek-a-Boo being played already. This is a first of many firsts London will experience in her second year of life. Can't wait for every milestone she'll hit now that she will be feeling like a new baby. Spread your wings little girl!
***LuLu is still on very strict visitor restrictions and will continue to be for coming months. Though we would love to welcome the many friends and family that are dying to see her, she is at the HEIGHT of her immuno suppression and every body that walks through the door increases the risk of her becoming ill. So after strong advising from the Queen Bee of livers- Dr. Book we will continue to limit visitors to Grandpa, Grandma, NaNa, PaPa and Gangey Janie. I'll continue to do my best with lots of updates and many pictures of the beautiful little bug, I mean butterfly...***





Please know how much I love the comments, texts and emails I've been receiving. If you don't hear from me right away, my apologies- but know they don't go unread or unappreciated. I get the comments from the blog to my phone as well as emails all day long and they are just one boost of many I feel daily. Thank you!
xoxo
Liver MuM

Tissue Time Tuesday








Pulling tissues from a box, still a favorite pass time. Love this remarkable little loo-loo.
ps can now add India, Finland and the Netherlands to places LuLu has visited virtually, it's mind boggling how contagious blogs can be. We feel so lucky to be in so many homes spreading what's important to us- Organ Donation and awareness...and of course the LOVE of our little family. ( Now if we could just get Oprah to say the word...the world would follow)

Tuesday, January 26, 2010

Milo Man









I was able to meet Milo with my sis-in-las Stacey at the Huntsman Cancer Institute this morning during one of his daily 7 hr. chemo. infusions. When you have cancer it becomes your life to beat it. He can't work, is without insurance, had to stop school etc. etc. but he is strong and he will fight the fight and help many others along the way. He has stage 3 testicular cancer that has spread to his lymph system after having one of his testicles removed. No, he doesn't mind me sharing this info with LuLu world, read his blog- he's very open. It's his reality.

HE is funny. I know he and James will get along really well, and we'd be the lucky ones to be his friends. We got talking about TV shows and found we have our favorites in common. Arrested Development, Curb Your Enthusiasm & Flight of the Concords. If you like thoes shows I know we'll be friends. Also a new one to get caught up on-- Modern Family. Think he'll start watching them online today.


I am helping Stacey come up with items for his silent auction which is also the night of his birthday. We need stuff and you can help. Anything...hand made items, gift certificates, art work (my friend ally is donating some pieces allybrynndesigns.blogspot.com) quilts, jewlery, services-James is going to donate some "handy man" gift certificates. I'm making him pose in a wife beater, tool belt, hammer in hand and all. "Sexy (happily) married carpenter to do repairs on your home..." I'll post a picture when I take it.


If you are out of state, which many of you are there is time to mail items to me. If you email me we can arrange a mailing address for you to send things to. elizabethbarnum@hotmail.com We have had so much kindness, generocity, blessings & service given to us this year and there is nothing MORE FUN THAN PAYING IT BACK. Here is Milo's new blog we got him to set up and hopefully get a paypal button on it for donations. Find it in your hearts to think of what you are able to do.





xoxo




Liver MuM, new friend of MILO MAN

Monday, January 25, 2010

Were Movin' on up...to the 4th floor

This was London's view on her ceiling both in the PICU and ICS. She loves her bubby.

Pilates--that would even make Jenna proud. (my dear instructor)

She looks ready for mischief already. I can't wait!! Please start crawling all over and pulling things out of drawers and making messes for Mummy and keep me on my toes. (really, please!)

Bu-Bye PICU, our stay was nice, nurses great but hope to never be critical enough to return.

The moment I have been waiting for. Beautiful, no? Warrior baby, Miracle baby.

I would have given 2 very enthusiastic thumbs up, but my other was on the camera. So use your imagination.


Ready for transport. She got many "ooos" and "ahhhs" down the hallways and was very warmly welcomed to the ICS as the "cutest baby they've ever seen". I'm sure they say that to all the little ladies, but she is pretty darn cute and has the sweetest, strongest spirit inside of her. She eminates goodness and beauty. I love her more each day, Jonah and James too. I thought I loved them as much as I possibly could, maxed out, but this has changed everything somehow. It is so different now. They all give me the chills when I see them and I cant wait to get my arms around them and lips on them. Enjoying every second with my family.
I am not promised tomorrow, none of us are.
xoxo
Liver MuM
 

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