Prayers, thoughts & well wishes Please.

www.lydiasliverstory.blogspot.com

One of LuLu's Liver BFF's Lydia, (Lyds) is having her transplant tomorrow. Her warrior Mum is her donor. Please get on your knees, send amazing thoughts and well wishes their way. They are an amazing family that have had their fair share of difficulties.

Throw a prayer in for LuLu too. She is having surgery tomorrow as well, but nothing NEAR the scale of a transplant, quite minor actually. She's having her central line removed. This is good news and a step in the right direction for her recovery. There isn't a need for it anymore now that we aren't giving her any meds through it and blood draws will hopefully go to every other week rather than once a week. The only bad part about it is she'll get poked for her labs rather than taking it out of her central line with ease but the risk of infection that comes with a central line is so great. The benefits definitely don't out way the risks.

We are so proud of her. She has been making a beautiful recovery and has an amazing spirit about her. RSV season is suppose to wrap up end of April and we are looking forward to an eventful Spring and Summer.

A healthy Happy Easter

"Arrr.." Lets get you in your Easter dress LuLu...

This precious dress is on loan from LuLu's Liver Mum. It was Ashleys. It was an honor to put her in it and have a very tangible connection to Ashley. It fit like a glove even though Ash wore it at 6 months and Lu is wearing it at 16. Liver people are often little people.

Muah

Many tries later...this was the best shot I could get of my two.

Easter hunt at Nana and Papa's. This was the first time the four of us (James, Lu, Jones and I) have been together outside our home since Thanksgiving. It was so fun to feel normal, be with family, eat Cindy's amazing food and to have Luly surrounded by her cousins that were so sweet and would drop candy into her basket as they were hunting for eggs.

Preference: taking candy and eggs out of the basket rather than putting in...

Her favorite spot for her index finger. That dang tube has gotta bug!! Hope you all had a wonderful Easter as well.

This Little Lu of Mine: I get to let her Shine

This was written by me about a month ago for the YES UTAH blog:

My little LuLu (aka London ) received the gift of life for a second time on January 15th 2010. Unknown to us, London was born with a genetic disorder called Alpha-1 Antitrypsin Deficiency. It is a disease that causes scarring to the liver and lungs. We knew by the time she was 7 months old she would need a liver transplant by, if not before, her 2nd birthday. It turned out to be much sooner rather than later.

The race was on to find a liver, through LIVING Donation Screening, as there is a major lack of organs available vs. NEED to allocate through the United Network of Organ Sharing (UNOS). Children and adults die waiting for their much needed organ to be gifted to them. London was listed on UNOS but we proactively starting the screening with myself (Mum), to no avail. I was not a good match for my baby. I wanted to fix her, to make her suffering stop, to save her life–but I was told I wouldn’t be able to.

Her Daddy was next but his liver was too big for her wee 11 month old body. LuLu’s Aunt Cydnee volunteered but her liver wasn’t right for LuLu either. Simultaneously LuLu’s Uncle Jordan was being tested as well…. London became very critical in December of 2009 and her status on the UNOS list went to top priority. We were all praying for a Christmas miracle. It didn’t happen on Christmas Day like Doctors hoped for her, but weeks later the miracle came. It was like a second birth for her.

Out of a tragedy life was given to 5 others, Lulu being one of them. Ashley Maynard was struck by a car on January 8th and kept on life support until she lost all brain activity. Her selfless parents donated all viable organs to strangers in need. London being the youngest at 14 months and someone in their 70’s the eldest of the group. They said they knew it was what Ashley would have wanted. What a beautiful connection my London will forever have to Ashley and her family. Our gratitude is never ending.

I would bring Ashley back if I could, but since I can’t, we honor her daily. Myself, by being a better person and a better Mum to my two children. London will grow up knowing why she has a big scar on her belly and the sacrifice had that enabled her to live. She will live a life worthy of wearing her beautiful scar. We value each day like it could be our last. When our last days shall come for me or anyone in my family we will all be donors if God will allow.

In the last month since we’ve been home from Primary Children’s Hospital London has started eating and stopped vomiting. She started crawling days within leaving the hospital and took her first steps just last night. She is beautiful from the inside out, very happy & healthy- ready to lead a normal life. She is a new baby, has blossomed before my very eyes.

Our deepest THANKS to Ashley’s family and anyone who checks Yes on their driver license. Heaven doesn’t want our organs…leave them behind for those that do.

xoxo,
Lizzie
A very blessed Alpha-1, Liver Mum

Have read THIS many times this last year

We know not all that lies ahead of us. We live in a world of uncertainty. For some, there will be great accomplishment. For others, disappointment. For some, much of rejoicing and gladness, good health, and gracious living. For others, perhaps sickness and a measure of sorrow. We do not know. But one thing we do know. Like the Polar Star in the heavens, regardless of what the future holds, there stands the Redeemer of the world, the Son of God, certain and sure as the anchor of our immortal lives. He is the rock of our salvation, our strength, our comfort, the very focus of our faith.

None so great has ever walked the earth. None other has made a comparable sacrifice or granted a comparable blessing. He is the Savior and the Redeemer of the world. I believe in Him. I declare His divinity without equivocation or compromise. I love Him. I speak the name of Jesus Christ in reverence and wonder. He is our King, our Lord, our Master, the living Christ, who stands on the right hand of His Father. He lives! He lives, resplendent and wonderful, the living Son of the living God."
-Gordon B. Hinckley

LuLu's Liver Mum

Oh, how I love her. Let me count the ways... 1 to a million. I love everything about her, I just wish we would have been brought together some other way.

She invited me for pedicures a few weeks ago as they passed through Salt Lake on their journey to Disneyland. We sat in our chairs accompanied by an amazing posse of women. Her cousin, best friend, Ashley's little sisters and cousin all got pampered with us--or Me with them, I should say. The manly-enough-to-sit-in-a-nail-salon-men patiently waited as we enjoyed ourselves, her step-dad Len picking up the tab for everyone. (thank-you again) It felt like a family reunion, Me, a part of their family.

I never would have imagined I could know and love someone so much never having met them. I love Ashley so much. When I hold my London, I see her, I feel her. Her amazing Mum, Dad and Step-Dad raised such a lovely lady. Tears stain my cheek now just thinking of her. I am ever so sad she wont find Easter eggs with her sissy's in the morning. Life is anything but fair sometimes. I am heartbroken her Dad can't drive to see her. He would move mountains to be with her tomorrow and everyday. I am excited for Him to meet and hold LuLu as well and hopefully find a bit of love and peace through Her.

I am grateful to them that LuLu will enjoy her 1st (healthy) Easter. She will walk and waddle finding treats around our house. Wear a pretty, new-to-her dress. I will wake up to her smile and bright spirit tomorrow and that is a miracle. Ashley's MuM, always a comfort reassured me in a text tonight after I recognized their Easter would be without Her that "Ashes lived her life to the fullest...no regrets! " She is always so strong and positive. She is as good as they come.

Love you Maynard, Lacey and Anticio families.

xoxo

Lizzie

Alpha-1, liver Mum

LuLu and Ramsi

LuLu loves their little visits through the doggy door. We obviously never thought we'd have a dog larger than a chihuahua. All our dogs are very loving and gentle with her...like they know there's something extra special about her.

It's funny to hear Jonah talk about Ramsi-the-dog, cause Ramsi-my-friend-that-doesn't-like-animals has been around so much longer (20 plus years longer)...and it's usually "will you put Ramsi outside" "I don't like Ramsi, can you give her back?" "Mom, Ramsi's bugging me" etc. etc. We love her and she's not going anywhere...unless my BF Hallie really wanted her. :) LOL HALS and NICK.

PT with PAT

This is Pat, one of London's Physical Therapists. She is so great and trys to make Jonah feel included and involved. (Notice him going 70 MPH below). We are so grateful for the many hands devoted to London's continued recovery.

I love that LuLu looks terrified in the first picture...she'd just had a really good work-out and needed some R&R, i.e. a nap. We have focused on working London's core to help prepare her to walk...and it's helped. As of today, I'd call her a walking machine. Before it was a few steps here a few there but now she is really walking. It is exhilarating to see her conquer one feat after another. Now if she'd just say MuM-A, MuM-A. It's next on her to do list, I'm sure of it.