Liver for LuLu

Some where over the rainbow...LuLu turned 3!

2012-01-04T18:19:00.000-08:00

my little dorothy...she knows better than most 3 year olds that there really is
"no place like home"

Another fun birthday celebrated with the many friends and family who are dearest to our hearts. Here is to a wonderful year ahead London!

They say it's your birthday!

2012-01-04T15:13:00.001-08:00

Earrings, take 2. (last round closed up) She was a champ, didn't cry- didn't even want to sit on my lap...I guess that's what happens when you have a medical baby. Needles don't scare this girl.

Had pizza and presents...with bubby, daddy and aunt mary jane.

...Cute Christmas card from MJ, will frame this and put with my holiday decorations. Sawyer will need to see that Santa can be black too...

Happy 3rd birthday my dear girl. Can't believe all you've been through in your short life... we love you so. so. so. so much. Party pics coming...

14th Birthday

2011-11-13T13:47:00.000-08:00

Ashley drew this picture shortly before dying...entitled Ashley's Heaven. We know there are horses there.

Ashley, LuLu's liver donor, would have been 14 this last Monday. Her birthday is a tender day for us. Not a day goes by that we don't think of her, pass by her pictures through our house or send a prayer of gratitude each night for her and her family. But to wake up Monday morning knowing it was HER special day that should have been celebrated rather than mourned makes it all so real and sad.

My eyes weren't dry that day for more than a few minutes at a time as I thought of Ashley, Her DAD, Her sisters, Her Grandpa, Her cousins, aunts, uncles & friends. But most of all for her dear, sweet MOM. I put myself in her shoes, knowing it could have been me to lose my daughter and how I would be feeling every moment of every day if that were so. Life would be impossible, yet so many people carry this sorrow every single day. I love Ashley's mom so much. She is a wonderful woman, so generous and so kind- it's not surprising that Ashley was who-she-was at the ripe age of 12 when she left this world behind her.

I really do wish Ashley was blowing out 14 candles, had planned a fun party and was spoiled with gifts. Maybe a horse? Would this have been the year she'd get a horse? I couldn't help but wonder.... I'd give anything to be connected to her and her family a different way. Or simply not to know them at all if it could mean they had Ashley back.

After LuLu's preschool we went to pick up balloons. Her favorite colors, blue and purple, just like last year... 14 rather than 13. London was telling people at the party store that is was Ashley's birthday- if only they what that meant. We wanted to let them go at the donor monument down town but it turned cold and dark too soon. LuLu and Jones let them go to heaven sending each one up with kisses or words of love for Ashley. We sang Happy Birthday to her several times that day but no notes were sung as beautifully than from LuLu as she let balloons drift up to heaven.

In the morning I asked: "LuLu what did Ashley give you?" she looked down at her bare tummy and proudly said, "a scar", "no, LuLu- what's behind the scar?" "Oh, a liver!"

We love our Ashley! Happy Birthday sweet girl. Thank you for LuLu's perfect liver and happy life-no longer being lived in the hospital, in chronic sickness or in constant worry by all who love her. Bless donors and donor families everywhere.

xoxo

video link below:
http://www.youtube.com/watch?v=Gd9t1_X9Z9s&feature=share

prima ballerina

2011-10-13T16:23:00.001-07:00

My little Lu started dance about a month ago. We are taking with our dear little friend Olivia and it's a weekly 45 minute slice of heaven. I softly cried through her first class. It wasn't too long ago that I wondered if my sick baby would be able to dance one day. (insert picture of SICK LuLu in liver and kidney failure, or vented and tubed and IV'd to the hilltops) I count my lucky stars that her transplant did come in time. Sweet London gets a chance to do anything and everything in life.

I recently came across this blog that had so many similarities to ours it was uncanny but her little liver didn't come in time. I was hysterical in the wee hours of the night when I finished reading Ruby's story from beginning to end. I thought I was going to have a panic attack, my throat was closing up I could hardly breathe. The grief I felt for this young mom hit me to my core. I spent the rest of the night curled up with London in her crib. Holding her tight and recounting my blessings. I wondered why that wasn't us and what if it was? it could have been....

I was ashamed in those hours that I don't remember all we learned through our trials with London on an hourly or at least daily basis. I had begged James to do bedtime with the kids on this particular night because I had just had enough of them for one day. My heart ached that I didn't tuck them in, read to them, sing to them, kiss them--because I could. My sweet children are alive and well and I gave up a bedtime with them- something that Ruby's mom would die for. I cried for our Sweet donor Ashley's mom and imagined how empty her arms must feel.

So lessons relearned, seeing LuLu in the special glory that is hers rather than such a terrible two. I thank God she has such a strong spirit, it served her well through disease and sickness and I know it will continue to be such an asset for wise, beautiful, tough as nails LuLu. Love you girl.

xoxo
lizzie

Ode to Ashley

2011-09-05T19:53:00.001-07:00

Kissing Ashley's name on the Donor Wall.

Ashley Lauren Maynard...can you find it?

LuLu met her Livers Daddy for the first time this weekend and we loved spending time with him, remembering Ashley and eating good food. London calls him LiverDaddy, so cute.

Our parents and almost all of mine and James' siblings, nieces and nephews were at the ceremony and unveiling of the wall. It was a great morning. I'd recommend going to the amazing, beautiful monument that is on the SE corner of the Salt Lake Library. It is spectacular.

Meeting LuLu. He has known her well through her blog but this was the first time they were able to meet as Will lives back east. We appreciate his love and concern for London and her health.

I'm sad I missed the opportunity of getting pictures with Ashleys Grandpa and cousins but are so glad we got to visit with them. Love you Maynard Family!!!!!!!!

Me and my miracle.

PUZZLE, yard sale extravaganza & application sent!!

2011-08-17T17:20:00.000-07:00

We have seen on other adoption blogs and loved the idea of a puzzle fundraiser. If you'd like to help us with adoption expenses, you can purchase a piece of our puzzle for as little as a dollar per piece. We will write donors names on the back of the pieces to help us remember all of the support and love we had along the way, and eventually frame and hang this sweet giraffe puzzle in our baby's nursery. I've linked a donate button on our sidebars if you are interested.

check out our family blog to see our yard sale fundraiser:

http://thehousethatjamesbuilt.blogspot.com/2011/08/yard-sale-extravaganza-application-sent.html

Plus 1 please

2011-08-04T11:42:00.001-07:00

What started out as a grave diagnosis for LuLu over 2 years ago has led us down many paths filled with sorrow and turmoil as well as amazing, unique blessings.

To name only a few (of the good stuff)... our association with people we would have otherwise never known.
Our appreciation for health and the life of our children in a whole new light.
Our respect for people in the medical profession and all the loving hands at PCMC-- I have always thought doctors and nurses were great (my mom being one of them) but it is different when your child would not be alive without them.
Our gratitude to live in America where we have resources at our fingertips that others can only dream of.
We have been loved and surrounded by friends and family that have carried us through hard, hard times.
Our love for a new extended family that is our donors. And a DEEP love for our Ashley angel.

HOW??? would we grow our family in the future was burning in my mind and heart when we found out that what London had was a genetic disease passed down from both James and I. The seed was planted that evening in February 2010 I just didn't know what it would look like when it bloomed.

The chances of having another child with Alpha-1 is 1 in 4, a carrier for the disease 2 in 4. For a little while I toyed with the idea of "taking our chances" and accepting whatever God gave us. We would never take back our LuLu and the same would be said for a future child ill or not. Fast forward many months of seeing her suffer, thoughts and times of actually coming close to losing her, waiting for another child to die so that she might have a healthy liver and finally flourish... We will not be playing with those odds. I can't do it to myself, my family and especially not another baby.

We researched fertility treatments. Genetic testing. Adoption. Just being happy with our 2. Until our trip to Haiti in March we were still undecided though adoption seemed like the best decision to us. After Haiti it was all I could think about, in particular an orphaned child from there. It was a major disappointment for James and I to learn definitively that Haiti would not be an option for us because of age and marriage requirements. It felt like a deep loss as we love the children there who are so desperate for a home. We went back to trying to feel like maybe our family was complete with 2 as we didn't feel like genetic counseling was for us nor did domestic adoption feel like the right path for us.

We are still so sad that Haiti's red tape and broken system prevent adoptions from happening but are grateful for what we saw, learned and felt there and knew they weren't the only orphaned children needing a Mom and Dad...and a Jonah and a LuLu. So, thus the search continued and has led us to Ethiopia. It feels good again and right. It will be another road filled with uncertainty, ups and downs as well as great lessons that will be as rich as the ones we have experienced the last two years. God has led us in this direction and we are following a little blindly as the expense of adoption, especially internationally feels like a road block that will be impossible to get around. But, as I have heard a million times in my life- "Where there's a will, there's a way" and that shall be my mantra.

home for the fireworks

2011-07-25T00:06:00.000-07:00

I didn't blame her for being mad after the day she had and then to come down and find the TRAIN wasn't on because it was a SUNDAY. Ugh. Poor girl. ;P

Bath time in the hospy. She is so big we graduated her to a real tub rather than a baby bucket. Just had to keep her IV sight dry...She was having a blizzzast.

Then some special friends came for a visit. Nate my friend from MHS and his sweet wife Suzanne who has become a dear friend of mine. Thanks for the Little Mermaid Squeekies. SHE loves them and we have yet to lose a singe one. Loves to you Gage, Kate and Eva!

********************************

We were able to be sent home in time to watch fire works on the 4th with friends from our neighborhood. We cancelled original plans to avoid crowds and get the little toad to bed at a decent time. We enjoyed visits in the hospital from friends and family and had such a great nursing staff. I will keep this positive and NOT go into the awfulness of London being cathed for a urine sample, other than to say it will never happen again. Momma wont allow it. We will go about getting pee the old fashion way. Wish I would have stuck to my guns and said no. It wasn't good for anyone, poor LuLu was so confused, hurt and felt violated. There I go. I will stop. It was among the most awful 15 minutes of my life. Love you Sweet London. You are the bravest of the brave. Stay well now...for a while anyway. xoxo

make plans, cancel plans

2011-07-02T16:01:00.000-07:00

the bow was a nice touch, lulu appreciated it....

woke up from this nap to my mom's beautiful face...she is still my comfort just like i'm lu's. i would have loved for my mom to hop in the crib with us!

it was going to be a really fun weekend. dirt biking this morning, birthday party for the kids, staying at a friends cabin tonight...throwing a surprise party for my sis-in-law tomorrow (SURPRISE SARA!).... but it's not unusual for us to avoid a crowd to keep London well or to cancel the fun stuff to get LuLu better. so instead we headed to PCMC this morning for a (short) stay...we should be able to leave Monday, knock on wood. we will make up for the lost fun next weekend. London's temperature got up to 103.5 which is an automatic hospital stay for her.

i'm not saying that watching the little mermaid on a continuous loop isn't fun....just not AS fun as plan A. it always makes me take pause to reflect on how grateful we are for modern medicine, the care we receive at Primary's, for our donor Ashley and how fortunate we are to have such a miracle child. she is an impeccable 2 year old. i hope i'm as proud of her as a teenager as i have been in her short life thus far.

her labs look good, she's receiving fluids and IV antibiotics, urine/stool samples look okay, so not sure what the cause of the fever- probably just a typical bug that kicks her cute, little immunosuppressed butt.

get well soon my little lu.

My Love

2011-06-04T00:53:00.000-07:00

LuLu loves our porch and being outside. I always feel like we are making up for lost time. We enjoy side walk chalk, blowing bubbles, eating and ant watching on our porch. Her toes curl under and she's totally creeped out by the ants but she loves the thrill of finding them. She's not afraid of needles or large dogs. Go figure. We feel totally, utterly lucky to live in such a great neighborhood filled with friends we've grown to love over the last year. I don't think I could picture a better place for our kids to grow up. I am extremely grateful. LuLu has been in great health since our last hospitalization in March and we plan to keep it that way! Fingers crossed, knock on wood, Pray to God. I can't help but panic even when she gets a slight cough or runny nose that it will turn into so much more...but that's the life of a transplant kid. I have a feeling it will be a fabulous summer. :)

On her throne...

Prayers for little Livvy, please

2011-05-17T18:02:00.000-07:00

http://wintersfamily5.blogspot.com/

Little Livvy has been struggling and suffering for a long time now. We use to both bunk at Hotel Primarys together but as Lulu's stays have decreased in frequency- Livvy's have picked up, ALOT.

Answers have been hard to find, the right kind of Doc- unknown. Please pray for miracles to happen for this great family. Olivia has a stong Momma, my heart breaks for her knowing how hard it is to see your baby suffer.

I know miracles happen, we have seen them at Primarys time and again.

xoxo

My Mothers Day Gift

2011-05-10T12:29:00.001-07:00

While at my Mom's house on Mother's Day we came across this picture of London. It hurts to look at. Her tummy was so swollen and uncomfortable from hypertension and would later have to be drained with a needle on several occassions. She wouldn't eat anything orally when it was this big which would make for a lot of super-foods going down her tube-which she would inevitably throw up. She use to throw up all day long. The worst was finding her asleep in it during the night or morning unknown to us.

Her arm is all bandaged up like it was for months and months because of her PICC line which would give her the nutrients directly into her blood stream to keep her nourished since she wasn't keeping her food down, nor absorbing food properly because of the damage already caused to her liver. We could never get that arm wet, which made baths a little complicated and not so much fun. After her transplant it was removed and a central line was put in which is essentially the same thing but closer to her heart, again making bath time (sponge time) hard and potentially dangerous to her. I'll never forget the first time I was able to shower with her after she had no more lines- it was one of the greatest, most special moments of my life. I'll never forget her little body clinging to me like a baby monkey, enjoying being soaked and sprayed. I cried, she laughed.

Seeing this picture and being reminded of what life use to be like, something I easily forget- felt like the best gift I could have been given on Mothers Day. I was made to remember that every day with her (and Jones) is the greatest blessing on Earth.

xoxo

To GO or not to Go, that was the question

2011-04-13T13:45:00.000-07:00

We had labs and clinic on March 29th and everything looked great. SO great that we were able to discontinue 2 of LuLu's meds. YAY. She is down to 1. I can't believe it-- a year ago we were giving her dozens. She takes Prograf (anti-rejection drug) twice a day at 9 and 9 and will forever. With Prograf comes many side effects and I've just recently had the courage to dive in and study them all out in greater detail and understanding.

I know, it took me a year but I couldn't handle it emotionally until now. There is no alternative to taking it for it's the only way to prevent her from rejecting her liver and dying. So we will deal with whatever comes-as it comes. The greatest worries for me are her (much) increased risk for Melanoma and Lymphatic Cancers. She will probably never conceive a child for the side effects on a fetus are devastating. I learned this at a peak in my own grieving about not getting pregnant again myself. We have chosen not to risk this disease on another child. I am so glad I loved both pregnancies and both deliveries. Labor and delivery is the best thing in the world.

I wish I had known LuLu would be my last, so I could say goodbye to that then, know it was over, the last time I'd take a brand new baby home from the hospital. It's like not being able to say goodbye to someone you love and will never see again. I stopped feeling sad for myself for I've experienced this miracle twice and just felt sorry for my little baby.

I know though that adoption can and will be a wonderful experience for her if she chooses to do so. It will be it's own unique, special journey and she will be a spectacular little mother. (in like 30 years) Babies will be sent to her from God through a different medium but the ones that are suppose to be hers to love. Adoption has been on our minds a lot lately. Even before we got married James and I talked about it being something we'd love to do and we hope we can. Especially with our recent trips to Haiti the need for loving homes for these amazing children is so great. We hope to be so lucky.

After LuLu's fabulous clinic appointment on that Tuesday the 29th she became really ill just hours later. Tuesday, Wednesday, Thursday...starting to get really worried for her and my need to cancel or pursue my trip to Haiti on the following Sunday. We went for labs Friday to check the little lady out and she got really ill in the main lobby of the hospital. We were sent to the ER for testing and to start receiving fluids and meds. I began to say goodbye to Haiti... London was admitted to the hospital and made a really quick turn around. My hopes to go began to flicker again and allowed myself til Saturday to see how she was doing before deciding one way or the other. Tests came back positive for Rotovirus (yes, something she was immunized for) but having already been sick for so many days figured she was at the tail end of it. Her improvement overnight was basically a full recovery and as soon as we were released that afternoon I began to pack and looked forward to an experience of a lifetime.

Thankfully London did so well while we were gone and I had no doubts about ALL the capable hands her and Jonah were left in. And Haiti was the best thing that could have happened to me.

A weekend away-the real kind

2011-03-17T22:24:00.000-07:00

Welcome normalcy. I have missed you for two whole years now. Splashing at the pool with my baby couldn't be sweeter. A little mini vacation to our family condo in St. George has been a long time coming. We needed this weekend. We loved this weekend. We will have many more weekends LIKE this weekend. We were in the greatest of company with dear friends joining us. London was the definition of happiness while in the pool and all I am hearing from her lately is "want to go swimming NOW mama" "want to go swimming NOW mama" "lets go for a trip mama" We will be going swimming MORE LuLu, but not always NOW.

The truest kind of love. James and LuLu. He loves his girl.

He loves this girl too (me) and loved me even more after I learned to ride me a dirt bike. He's gotten really good at this sport the last few years and has been wanting to pull me in to this addiction of his. He did and I love it too. No, I didn't ride in a tank top. I had every piece of protective gear known to man. Thank goodness...or I wouldn't have walked away from this weekend in one piece. Think I know what James will be getting me for my 30th, a little, girly sized dirt bike wrapped up in a hot pink bow to match my riding pants...hint. hint. Thanks for the loaner Chantell.

Sweeties bathing after swimming. This is our little friend Tori. We love her. She is the worlds best 2 year old (no offense Lu). Mind boggling really...chalking her up to really great parents. I took pointers this weekend- believe me.

Happy wedding to Bryce and his beautiful bride Cherise (the real reason we headed south) and cheers to good friends (Tellie, Scott, Jenna and Joe, Kath and Adam), good food and warm weather.

I was so happy to come home to melted snow and growing tulips. Mother Nature knows I need Spring. No more snow. Please. Begging, actually.

Hoping all your weekends were swell too...

xoxo lizzie

Weekend Getaway...

2011-02-27T21:57:00.001-08:00

...JUST NOT WHERE WE WANTED IT TO BE

LuLu had been sick for about a week, throwing up and a bad cold. We took her to the doctor and was assured it was just a cold. But several more days of her feeling miserable and then spiking a fever it was off to the ER Friday night. Well, we had to check in @ the ER but were able to bypass it and go straight to the penthouse of the hospital. 4th floor ICS (Immuno Compromised Services) a very exclusive group of little people-cancer, HIV/AIDS and transplant kids. After a few hours of MISERY-- labs, urinalysis, chest xrays, and a DEEP nose suction for a VRP (viral respitory panel) which always leaves her with a bloody nose.

RESULTS: a double ear infection and RSV (Respiratory Syncytial Virus) which is very scary for little ones like Lu.

Checkin the view...

She received maintence fluids since she wasn't keeping anything down and IV antibiotics for her ears and anything else that could have been lurking in her body. I dreaded the day our mobile, walking, climbing the walls London would have to be attached to a tube, pole and confined to a small room. The days came and went and we survived.

I spent the first night in London's crib with her. She wanted me there and I wanted to be as close to her as I could be. She was inconsolible and after a few hours, so was I--for many reasons that night laying next to her. But her pain and confusion were enough to justify my tears and heartache. We cried ourselves to sleep together until a few hours later when her IV tubing was wrapped around her neck, which again made me glad I was laying right next to her. Oxygen & many hourly vitals later the night finally ended and a new and better day began.

We were getting creative trying to entertain her...whatever makes her happy. She really wanted to go swimming- this is what we came up with and it was good enough for her.

>>>drinking like a kitty cat...however we can get her fluid intake up...

We were able to sneak away while my mom stayed with LuLu to spend time with Jones. We took him to a movie about space (which he's been really into lately) at Clark Planetarium then enjoyed the exhibits. Here's Jones on the Moon... We always say "love you to the moon and back"

Then he hopped over to Mars...the other night Jonah asked James if he knew how much he loved him? James asked how much and Jones said "to Uranus and back, do you know where Uranus is Dad?" He is a funny, smart, quick, witty 4 year old. That comment will go down in our books.

There is a learning curve with chopsticks...

self portraits with my little man. It's important for the "well" child to get mom and dads love and attention while London is sick in the hospital. He was having so much fun staying with his Aunt Maryjane that he didn't really even want to come with us-- but I think he tolerated it ;). He was really glad to return to her after for their second sleep over.

Back to the hospital where Lu was bathing Dora, purple guy and her bouncy ball. She would ask for her Bubby a lot and go to her door knocking for him and wanting to call him on my phone. She loves her brother, always misses him when she is in the hospital.

The most gracious thank you to Aunt Allie for rushing some Dora DVDs to LuLu which she watched around the clock. Dora's voice now makes me want to stab pencils in my ears but I am grateful she entertains London in her time of great need. Thank you Mom for staying with Lu so James and I could be with Jones. Thank you Aunt MJ for taking the best care of Jonah, Thank you James for being the best Dad ever to our two kids. He slept the second night with her while I got to sleep in my own bed. And last but not least thanks to the GI team and to a loving Heavenly Father that is always mindful of London and our little family. We are happily recovering at home now and will be back to the hospital Wednesday for labs.

Not a shabby view from our hospital room.

xoxo

Lizzie

liver mum

How do you get your husband to bathe the dogs?

2011-02-14T13:37:00.000-08:00

....throw them in the shower while he's in there with your kids.

Love it when my kids are clean, dogs are fluffy and husband's not stinky.

PS we don't think we have enough blogs between my liver blog and our family blog, ;) ;) so my mom started another one about one of the things my Daddy does best--building.

visit www.badgerconstruction.blogspot.com

It's a work in progress and will be keeping my Mum busy getting it all up-to-date.

Love is in the air--and the water

2011-02-05T22:43:00.000-08:00

A rare moment, caught forever. I love them and hope one day they can comprehend just how much. I hope they will be the others best friend. I hope they will find someone to love the way I love their daddy. He is my happiness and the thing I am most sure of in life.

They are hungry.

2011-01-18T16:52:00.001-08:00

work-in-progress

Guezmo (director/LDS bishop) and Ken Potter (James's Haiti tour guide/boss man)

James leaves tomorrow night for Haiti to help the work continue on an orphanage outside Port au Prince. We heard today from the director that they are (literally) out of food. Much of James' 2 bags he can take are weighed down with tools they will need and his gear to survive. I begged Delta this afternoon to waive the 100$ fee for a few extra bags we could fill with rice and beans, to no avail.

So this means money will be better spent in country. We are pretty maxed out with James' travel expenses/shots/expedited passport etc. etc. My gracious parents are sending him with several hundred dollars to buy food directly for the orphanage with the hopes I can raise some money to give back to them/pay them when we can. The grocery stores are few and far between and the perimeter is surrounded with huge brick fences. (i.e. no starving people can get in...) Two 80 pound bags of rice costs 100$ and I'm sure beans are roughly in the same price range. I am humbled tonight as I feed my own children Easy Mac and fruit.

If anyone would like to contribute, it would be much appreciated, even 5 or 10 dollars will go far. Please email me at elizabethbarnum@hotmail.com and I'll send you my parents address or my paypal name.

THANK YOU TO ALL WHO HELPED. WE GATHERED ABOUT 1500 FOR JAMES TO BUY FOOD WITH. THIS FAR EXCEEDED ANY EXPECTATIONS I HAD!

xoxo

Ashley's Blog

2011-01-16T23:11:00.000-08:00

Our donors mom is keeping a blog up in Ashley's memory. sweet, sweet pictures. It's HERE and on my sidebar.

enjoy.

1st Transplantaversary

2011-01-16T12:43:00.001-08:00

I made LuLu's favorite soup...which becomes a favorite to all who try it:

Mango Salsa Soup
1 Jar Fresh Mango Salsa, 48 oz. From Costco
1/2 jar of jacks salsa from costco (right next to Mango salsa)
Put ¼ C olive oil in soup pan, simmer these two for 10 minutes

Add 2-4 Cans drained, shredded chicken from Costco
1 quart chicken stock from costco (it thickens quite a bit the next day so I add more then)
Simmer few minutes
Add 3 cups frozen corn from Costco
Squeeze fresh lime in soup

optional goodness!!
In bowl:
Tortilla chips, crushed
Chopped avocado pieces
Yellow/white grated cheese
Sour Cream

Ladle soup over

We celebrated with Grandparents earlier in the week thinking James would be in Haiti on the 15th. We are so glad he was here yesterday...it was a special, wonderful, FUN day with our kids. Jonah made these YuMmY cupcakes for Lulu and helped her blow out the candle...or maybe did it all by himself. ;)

Cream Cheese Filling:
8oz cream cheese
1/3c sugar
1 egg
dash salt
51/2 oz chocolate chips

*Cream first 4 ingredients together, then add chocolate chips
*Use Devils Food cake mix and mix per instructions on box
*Fill cups 1/2 full then add a spoonful of cream cheese mix, then top with more cake mix
*Bake per box instructions
*Let cool to room tempt, then frost.

Frosting:
*1 1/4c powdered sugar
*1/8c Milk
*1/4c Margarine
*1/2t vanilla
*1/2t almond extract

Her liver birthday started out with a surprise cake from NaNa and PaPa that was enjoyed shortly after breakfast...it was fun to compare and contrast this morning with the one a year earlier. I can't believe our sick, little baby turned into this vibrant child.

We could finally take London swimming--so we did. Transplant recipients aren't suppose to swim for a year after surgery while their immune systems are highly suppressed. It's one of those simple pleasures we missed this last summer and will always appreciate a bit more than we would have. She LOVED, loved, LoVeD the pool, the slide, the splashing, climbing, floating- everything. Until she took a good gulp (or a few) of water and started throwing up profusely. James got her out of the pool really quick, we got everything cleaned up and got out-of-there. Luckily we had a few good hours before the eruption. Sincere apologies to all around us were given....

Walking onto the Salt Lake City Library grounds to see the Donor Wall/Memorial. Ashley has a plaque that we couldn't wait to see. James holding her like this choked me up thinking of the long walk a year earlier where I held her limp body just like that down to surgery.

Seen HERE

Lulu and I modeled for this one. No- not really. But think it was made for us.

Unfortunate for us, the wall is covered in the winter, because the plaques are glass I guess. However, just being on the grounds and seeing the beauty of the statues and words on the dedication was good enough for now. I walked along the wall wondering where her name was, we'll find out when the snow melts and spring comes. We love Ashley and for what she's done for our family. For anyone interested the monument is on the far SE corner of the block-- there is a fountain that I'm sure is so impressive when it's on as well as other statues.

Ashley

2011-01-13T12:11:00.000-08:00

Today marks 1 year since Ashley's life ended and LuLu's life would soon begin.

When I ran the Ragnar Relay last summer I had the opportunity to run what most definitely was the most beautiful leg of the whole race. It was through Paradise, Utah...rightfully named. Team Donate Life, we were running to raise awareness for organ donation and I carried Ashley's memory every step I took.

As I ran my first leg through Paradise I felt her with me, in me, around me and everywhere I looked. Tears stained my cheeks the whole run. It was green and lush with rolling hills and horses everywhere. I felt like I was running through her heaven. The air was so clean, the sky was very blue. It was amazing. I was extremely grateful to feel that kind of peace, when all I'd felt for months was guilt that she was gone and I had my London because of her.

I'll always mourn her, love her, speak her name and see a glimmer of her in Lulu's eyes. The day will come when we meet this sweet love in the next life and I can't wait to pick her up and thank her.

xoxo
lizzie
A-1, liver mum

It was a Very, Merry Christmas

2011-01-03T19:48:00.001-08:00

The very best part of Christmas Day was going to the hospital...to bring toys. The ones we collected for London's birthday became a sick child's gift. How gratifying it was. I wonder where the gift London received last year at Primarys came from-- or from whom I should say.

Opening gifts was pretty fun too...

Christmas Eve was splendid. Emotional. And just so happy to be together as a family.

The whole month of December was wonderful and festive and so very different than last year. For this we are very grateful.

Foyer de Sion Haitian Orphanage - Please Help

2010-12-29T20:10:00.001-08:00

I have shared with some of you that James is going to Haiti in January. He'll be leaving with my dear friends father, who has been dedicated to completing an orphanage just outside of Port au Prince, where a tragic earthquake struck. Everyone who is going down will do so at their own expense, and all funds donated are going for labor and materials.

The organization has raised over $250,000 but is still short on funds to complete the orphanage.

I'M ASKING FOR YOUR HELP.

CLICK THIS BUTTON TO DONATE

Another $70k will get the building to a point where the children can move into the new building. Conditions in Haiti are very dangerous at this time, cholera has killed hundreds and kidnappings still take place. This new orphanage is located out in the country, safe from the horrible situation they face in Port au Prince.

While the goal of having the kids in by Christmas was not met, a lot of progress has been made. The $53,000 needed to complete the tile work was generously donated and work should start this coming Monday.

An extremely large donation was made that allowed the purchase of two 40’ containers, which were loaded last Thursday & Friday. By Friday night, they were on a train and en route to Haiti. They should arrive in Port au Prince, Haiti about the first week of January and will be delivered by the 15th. My friends dad will be taking five or six men, including James to with him to Haiti to help work on doors, skylights, painting, etc. and to meet the containers on their scheduled delivery date.

For those who HAVE or are INTERESTED in donating to this cause, please join us for an open house at the home of Ken & Laura Potter and meet Bishop Mardy (who runs the orphanage) in person.

January 2nd from 5:00 to 8:00 p.m.
551 S. Ranch Circle
Alpine, Utah 84004

This is a rare opportunity to meet the director as he is in the country for a short time visiting his family. Light refreshment served. He will be returning to Haiti Tuesday morning.

other birthdays...

2010-12-15T13:39:00.000-08:00

hours old... let the big bows begin...

1st birthday. big needle in the belly procedure with conscious sedation. she was tripping, see video below for a good (but sad) laugh. that's a contradiction.

lunch of champions @ the hospital-- milk a-la-tube and cheetos

checking out her sweet heart, to be sure she'd be okay for transplant among other things

she wouldn't eat her breakfast birthday cookie. before i had kids i decided we'd always do cupcakes, ice cream or something sweet for (and or with) their breakfast. this year i think all she had was sugar on her birthday.

i was so broken hearted this first birthday of lulu's, or just broken is also a good way to describe how i felt at the time. i thank god for the difference a year made for me as well.

the better part of the night HERE

happiest 2nd birthday, ever

2010-12-13T19:37:00.000-08:00

LuLu's BFF LaLa from next door...London lights up when she sees her. They are so sweet to each other and play so well. They are above acting like "2" year olds.

Make a wish...mine was that nothing will stand between us and being home rather than the hospital for Christmas like last year. I'm very sure it will come true...

Lu was determined to get the plastic off that lollipop....

and she did.

Our dear friends Jen and Aaron

Badger Cousins

Aunty Anna, Bubby's Ben and PT and my dear, sweet niece Abbie

One happy aunt

Pink has been my new favorite color since transplant. Pink--like a healthy liver.

My beautiful, wonderful Grandma Badger

Aunty Kath and Taydo

Big, beautiful eyed Miss Kaia

She's become really good at giving gnarly looks. This is just one of many she may flash at you if for no good reason

My Mum and the Rex Family

Aunt JuJu and some lovely princess gifts for Lu. She's really only known cars, transformers and Super Heroes...but I'm sure she will soon love all things girly.

Jonni and Carlie

NaNa and PaPa

Aunt MJ and Uncle D

In "lieu" of gifts for LuLu we asked for donations to Primary Childrens which made this night even sweeter. We will get to deliver the presents as a family...

What a difference a year makes, a saying we hear and say often when it comes to London's healing and progression. ( click to see : Birthday #1 )was a sad day for all of us. We spent a good part of the day at the hospital with a cardiologist, to the liver clinic and a procedure where they had to insert a large needle into her belly to drain off some of the excess fluid she carried in her distended tummy due to hypertension. I had tears all day as I sang Happy Birthday to her many, many times.

We got home that evening in time for an intimate party with Jonah and grandparents. Kathryn had decorated my home beautifully, because I couldn't. She is the kind of friend I'm so blessed to have.

LuLu was too sick to eat any cake, ice cream, treats or food other than what was being pumped into her nose and arm. I couldn't help but wonder if she'd have another birthday she was so sick and continued to get much sicker throughout the month of December. I vowed if possible her 2nd birthday would be a big, wonderful bash. It was. She had nearly 100 of our closest friends and family drop in to love on her and give well wishes.

Happy 2nd Birthday Hummingbird. Thank you Ashes, we love you.

xoxo

Terrible 2?

2010-12-07T09:58:00.000-08:00

No way...not our London. She'll never be terrible. Difficult- sure. Sassy and bossy- you bet. Grumpy- sometimes. I'll take her any which way she decides to be. Even terrible, because she's here, with us. I'm just glad we can celebrate another year with her, which came at a high cost to others. She is perfect and wonderful and funny and happy and beautiful and smart. And mine.

Happy almost birthday LuLu. It'll be so much better than last year, I promise. No needles. No hospital. No procedures. No tube in your nose, no IV in your arm. Tomorrow will be full of fun. Family, friends, neighbors. Candy, cupcakes, brownies, cookies, candy and more candy.

Happy almost Birthday # 2

little miss, we love you.

xoxo

100,001

2010-11-22T10:30:00.000-08:00

I just logged onto LuLus blog and was the 100,001 visitor since last December! I never could have imagined when my sister started this to keep friends and family informed that it would serve as anything more than "keeping friends and family informed."

I'm grateful for the support we've had, it's been overwhelming. I'm grateful LuLu has been able to touch the lives of others with her fighting spirit and witness the miracles that have happened. I hope we've helped spread the word on the shortage of viable organs being donated and the importance of blood donation. Also, I think it's been theraputic for me to write and share-and to give a glimpse of what it's like to walk in an ill baby's shoes.

Thank you, thank you, thank you.

xoxo

news story

2010-11-18T14:00:00.000-08:00

http://www.abc4.com/content/news/top_stories/story/Donor-transplant-brings-two-Utah-families-together/_A0j2PcCfEOkr4N_XWaMmw.cspx

click on the video tab to see the news clip (it takes a minute to load up)

xoxo

modern sick girl

2010-11-16T10:52:00.001-08:00

my friend from jr. high and high school is gearing up for her 2nd kidney transplant. yes 2nd. and she's not even 30.

follow her blog @ http://www.modernsickgirl.blogspot.com/

she's positive, funny and witty. it's transplant time for someone, somewhere at all times. blows my mind.

xoxo

Growth Charts

2010-11-14T13:31:00.000-08:00

It's been on my mental list to start making and selling these beauties for FOUR years, so here I am. FINALLY. Hoping to develop a little homebased-business....

These growth charts are solid wood (5 1/4 inches wide x 6 ft. tall), come with a hook on the back for hanging and will be a family treasure. I can customize colors or stencils to your liking.

These make great baby gifts, birthday gifts.....or Christmas gifts! My mom loves marking her grandkids on hers a few times a year too.

Email me @ elizabethbarnum(at)hotmail(dot)com Cost:50$, shippping 23$ or if you are local (SLC)we can arrange pick-up.

xoxo

Breaking News.....

2010-11-12T17:41:00.000-08:00

Lu & Ashley's story will be on channel 4 tonight @10 & the article in Womans World Magazine comes out Monday the 15th....spread organ donation awareness, SPREAD!!

Here's an abc4 news link for a written version of the story:

http://www.abc4.com/content/news/top_stories/story/Donor-transplant-brings-two-Utah-families-together/_A0j2PcCfEOkr4N_XWaMmw.cspx

Happy Birthday Ashes

2010-11-12T13:58:00.000-08:00

It's NOT my party, but I'll cry if I want to.

Cheers to Ashley, they say.

Sunday was Ashley's birthday.

What do you do for the girl that saved your baby?

How do you celebrate when it's such a tragedy that she is gone?

We, with her parents, friends and family scattered across the US decided to send balloons up to heaven. This will be a new family tradition.

13 from us- blue and purple, her favorite. She would have been a teenager. I remember how special turning 13 was. We sang Happy Birthday and let them go to her. Jonah really wanted to send her a cupcake but a smudge of frosting on his balloon had to do.

I know her parents wished to celebrate differently. I wish they could have. I wish she never got hit. We would have found a liver elsewhere.

They would have made it such a special day, cause that's just the kind of people they are. I imagine she would have gone horseback riding, been gifted a new pet and eaten lots of cake and ice cream and posed her pretty little self for many happy pictures.

We feel so lucky to have the connection we do with her and her family. It's healing for all of us. They LOVE LuLu and have taken her in like their own.

Happy 13th Birthday Ashes. I know you had a big old bash in Heaven with your Grandma and Jesus. We love you to pieces.

xoxo

lizzie

i'll never say knock on wood again...

2010-11-05T18:55:00.000-07:00

We spent the day in the ER, expected to be admitted but were able to come home tonight. (an early Christmas miracle ;)) LuLu has had a stomach bug that come day 4 today left her lethargic and dehydrated. Her liver team takes things like this very seriously as imbalances for her can cause big problems. After labs and more labs she was able to receive two rounds of IV fluids and we were released. My mom and I celebrated over diet cokes and Cheetos, she even let LuLu have a sip.

Highlight Reel from this ER trip:

1- going home after, that's never happened before

2-when the nurse was doing vitals and needing to look in London's mouth with her little light, LuLu stuck out her tongue and put the compressor down on it and said "ahhh." She loves opening them and playing with them so the timing was just perfect. (she'd opened about 50 before they came in, my mom and I kept throwing them away as to not leave any evidence behind, but she still had the one in her hand)

3-When they drew her blood (for the second time this week) she didn't flinch, make a peep, move her arm, squiggle or wiggle. The nurse was dumb founded. She was given the honorary best patient ever award--which is a bit sad to me but hey-- we'll take whatever accolades we can get. The scarring up and down her arms testify to all her practice.

4-The YUMMY sandwich and bowl-of-beets from the U of U's cafeteria. It is much (much) better than PCMC's. Make a mental note. And of course the Diet Cokes courtesy of our nurse.

We are extremely grateful to be home...there really is no place like it. Our new house really (and finally) feels like home-sweet-home.

On a different note our sweet, sweet friend Lydia is back in the hospital with serious complications that are any liver mum's worst nightmare. Please pray for them, send them your love and good energy. Be so grateful if you are a parent of healthy children, never, ever take that for granted because you never know if one day that may change.

http://www.lydiasliverstory.blogspot.com/

xoxo
lizzie

Then & Now

2010-11-01T21:58:00.001-07:00

Last Halloween was spent in the hospital, so no Halloween was a sweet as this year where we were together as a family. Primary Children's always does their best to make things as special as possible for their kids, but being tied to tubes, confined to her room and without her brother was one of several sad 2009 holidays. We look forward to Thanksgiving together this year, her birthday together this year and most of all Christmas together this year. We are on quite a streak with staying out of the hospital. Knock on wood. Knock on wood. Knock on wood.

Needless to say she loved Halloween in it's entirety. Neighbor party, Trunk or Treat and Halloween night Trick-or-Treating with cousins and friends. My mind wandered to the kids that were in the hospital this year and had hopes for a better one next year.

xoxo

Apple Fest 2010

2010-10-07T14:26:00.000-07:00

My dear friend Marcae (far right) celebrates the life of her Baby Kate with the 3rd Annual Apple Fest. She died at 2 years old at Primary Children's after a long and complicated fight for her life. Apple Fest is a wonderful celebration- a 2 day event in Fillmore, Utah at her family ranch. We had a wonderful dinner, dancing, hayrides and fresh pressed apple cider.... followed by a 5k and more celebrating the next morning. All proceeds benefited Primary Children's in Kates name. Last year they generously donated the money to LuLu. I am very blessed to have such amazing friends in my life. Marcae shines bright--she always has.

Teeter

Totter

bread and water....

Never a good shot of all four of us....This was the funnest, most wonderful, care free weekend we have had in as long as I can remember. Thank you Roper & Rosenvall Family!! We love and miss you Baby Kate.

Bunny

2010-09-30T14:31:00.000-07:00

A friend from my gym, Bunny Bradley was hit and killed while cycling in July. Friends and family have organized a great even that will include a dinner/silent auction Oct. 8 and a 5k Sat. Oct. 9 (there will be LOTS of fun stuff going on) Please check http://www.runforbun.com/ for details and to buy tickets/ register. Money raised will be donated to her town of Draper to make a new section of hard trail for bikers or a rest stop on the trails. Hope to see you there!

I had a conversation with Bunny a few weeks before her death about LuLu. Her liver transplant. Her donor. The miracles and heartaches. Bunny became a donor. Several others spared when she was taken away. Someone has her beautiful eyes. Someone has her strong heart, healthy kidneys and beautiful, pink LIVER. Being on the receiving end ourselves I can only imagine the gratitude the individuals and families have for whomever DONATED LIFE to them. Bunny was an amazing person, one interaction with her and it made you want to be a better person.

Paige needs Prayers

2010-09-28T13:33:00.000-07:00

Though we are through it and pushing forward in our lives...someone else is in the middle of it- and it breaks my heart. WAITING, waiting, waiting for a liver is a hard thing to do. Paige is a top priority in the PICU in great need of a new organ.

Meet Miss PAIGE.

Ashley's Gift: A liver for LuLu

2010-09-26T22:52:00.000-07:00

http://166.70.44.68/multimedia/2010/Liver_for_Lulu%2002122010/index.html

Since the link to the Tribune story is now expired, I wanted to post the article for people who are new to London's blog and so we have it to read when I print the blog to an album....

Ashley's gift: A liver for LuLu

Heather May The Salt Lake Tribune

"A lot of my emotions are tied up in thinking about that family and praying for that family. It's amazing in someone's darkest hour they can say, 'Take what you can from this person that we love and give life to [up to] eight other people.'" -- Liz Badger

Murray » Liz Badger is scouring every cupboard and drawer, tossing enough kitchen containers, blankets and clothes to fill at least a dozen bags for charity.

This time, though, she's not nesting before bringing a baby home from the hospital. She's working off her anxiety about taking her dying daughter back there.

In a pink bedroom down the hall, 12-month-old London slumbers most of the day, in end-stage liver failure.

Affectionately called LuLu, the dark-haired, dark-eyed girl is one of the sickest children on the pediatric transplant waiting list in the Western United States. Without a new liver soon, her doctors fear, she won't make it.

Her family mostly stays home to avoid germs so she remains healthy enough for surgery. They watch movies. They play games.

They wait for someone else's child to die.

Liz's cell phone is always within reach.

But part of her hopes it won't ring, not yet. LuLu is sick but stable. And in the silence there is solace: Another family has another day with their baby.

The phone is quiet for now, but not for much longer. The life of another dark-haired, dark-eyed girl is also fading.

'I love you, mom' » Nearly 200 miles away, Camie Lacey drives her daughter, Ashley Maynard, to her bus stop in a small eastern Utah town on Jan. 5. It isn't their routine, but it's too cold for her 12-year-old to walk. As the bus approaches, Ashley steps out of the car and says, "I love you, mom."

Camie sees her wait for one car to drive by. Realizing Ashley doesn't see the next one, Camie calls out her name and watches Ashley turn toward her. The car strikes Ashley, and she rolls onto the hood, then falls to the street.

Camie knows there is little hope when she gently pushes up Ashley's eyelids in the Vernal emergency room: The sparkle is gone.

In the coming days, Camie will pray for her firstborn to let go.

Time running out » At 2 months old, doctors diagnosed LuLu with Alpha-1 Antitrypsin Deficiency. The rare genetic disorder traps a protein in her liver, causing scaring and preventing it from controlling infections, filtering toxins and processing food.

As she grew, LuLu didn't have the fat, dimpled fists of a healthy baby. Every protruding vertebra in her back was a reminder of the food she couldn't eat. The disease made her nauseated and prevented her from digesting the nutrients she eventually had to take through a tube.

Yet her belly was so swollen. High blood pressure in the veins leading to her liver caused fluids to leak into her abdomen, which had to be drained by a needle.

Before her first birthday, it was clear she needed a liver transplant.

Liz and her husband James, both 28, were determined one of them would give their daughter life for a second time. In theory, a surgeon could remove a portion of one of their livers for LuLu.

"I want us to have matching scars," Liz wrote in November on a blog chronicling LuLu's illness. "I want her to be able to look at me whenever she feels self-conscious and see how proud I am of my scar."

But both parents were ruled out, and doctors at Primary Children's Medical Center in Salt Lake City put LuLu on the waiting list for a deceased organ donor. When her kidneys started to fail in December, she advanced to the top.

Liz learned LuLu's ideal match would come from a child. That kept her up at night. Will he or she have been ill for months? Or will the death be unexpected?

"I will be sick for that mom that wants to die because her baby is no longer in her arms," Liz wrote at about 2 a.m. in late December during LuLu's third extended hospital stay for an infection and care that had her kidneys working again.

"I would want to die, too. And that is why I feel heartbroken tonight and every night as I lay thinking about this wonderful yet horrible process of organ donation."

Letting go » At LuLu's weekly appointment on Jan. 8, Liz sings the Bob Marley song "Three Little Birds." LuLu likes to shake her belly up and down to the words: "Don't worry about a thing, 'cause every little thing gonna be all right." Today, Liz wants to calm LuLu, who has just thrown up, and convince herself that the lyrics are true.

Linda Book, Primary's medical director of liver transplantation, tells her and James, "I know you're anxious to get this finished and get her well."

Liz struggles to agree. "We are," she says, thinking of where the liver will come from, "but it's a strange spot to be in."

Just down the hall, unknown to Liz and James, Ashley lies still in the pediatric intensive care unit.

The sister of 7-year-old Samantha, 5-year-old Abigail and 13-year-old stepsister Danyeal, Ashley is in sixth grade at Vernal Middle School. She is the type to comfort a crying classmate at lunch and to correct her Sunday school teacher's grammar.

She dreams of becoming a veterinarian. As a younger child, she toted around a toy bat dressed in doll clothes, trotted through the house pretending to be a horse and made nests in the backyard.

The crash fractured her skull and stopped her heart.

Emergency room physician Aaron Bradbury was just ending his shift at Ashley Valley Medical Center, where severe trauma cases are unusual. Hearing an ambulance was on its way carrying Ashley, he stayed to help.

Several of the staff resuscitating Ashley knew her. When they found a pulse -- she may have gone up to 20 minutes without one -- Bradbury felt something like regret.

"I knew what was going to be in store for the family," he said later. "She might die in the ICU or she could persist in a vegetative state for years."

Ashley was flown to Primary Children's, where doctors left her in a medically induced coma, controlled her temperature and increased her blood pressure to move blood through her brain.

But days later, her brain is still swollen.

Camie, 35, already knows it's time to let go. She's been looking in Ashley's eyes every day and can't find her daughter.

"The best part of Ashley was her heart, her soul, and then her brain, her intelligence," Camie says later. "I knew she wasn't going to come back."

'The most difficult thing to do' » Refusing to let Ashley become an organ donor, Camie felt, would be like killing another child. She asks doctors for reassurance that the drugs keeping Ashley paralyzed and sedated aren't ruining her organs.

Camie has a choice: If she turns off the ventilator and Ashley's heart stops quickly, she could likely donate her liver and kidneys. But if she survives longer than an hour, low blood pressure and oxygen would damage her organs.

If Camie waits and Ashley's brain stops first, doctors can keep her on life support and more lives can be saved.

Camie, a member of the Church of Christ, starts to pray for Ashley's brain to stop. She also hopes families awaiting a call don't feel guilty.

"It's got to be the most difficult thing to do - wait for another child to die," Camie says later. "I can't imagine the feeling."

To better assess Ashley, doctors stop administering the drugs sedating her, and she begins showing primitive responses, blinking and coughing.

Camie runs into her room and kisses her, asking, Are you going to be my miracle baby? She is so close she can taste a salty tear from Ashley's eye.

Ashley's father, stepfather, aunts and uncles gather at her bedside. She isn't awake. But for the first time, Camie feels Ashley is there, spiritually, to hear them say goodbye.

After her last visitor leaves in the morning, Ashley stops responding. The swelling has forced her brain stem into her spinal column.

She is pronounced dead around noon on Jan. 13. On a ventilator, her heart continues to beat. Ashley will give her heart, pancreas, kidneys and liver.

Camie can't part with her eyes.

She lays in bed with her daughter. She bathes her and combs her hair.

'Can you say a little prayer?' » At 3 the next morning, Gina Wiser's pager wakes her up.
A transplant coordinator at Primary Children's, she confirms the liver offered to LuLu is a good match, then dials Liz.

Liz cries, thinking of the donor's family.

Wiser consoles her, sharing how tissue donation helped her own family cope with the death of her 14-year-old brother, Zachary. "This is a good thing," Wiser tells her.

Behind the scenes, the symphony of donation is playing out.

Intermountain Donor Services must find a home for the donor's organs, and the transplant surgeons must be in the room at the same time to remove them.

As LuLu's family waits more than 30 hours in the hospital, they hold and play with her as much as they can. She sits on a mat on the floor as James and Liz blow bubbles into her startled face.

When surgery finally starts, at noon on Jan. 15, LuLu's 3-year-old brother, Jonah, her parents and grandparents say good-bye. "LuLu's about to get a liver. Can you say a little prayer in your heart?" Liz asks Jonah as she touches his chest.

Jonah folds his arms and bows his head {and says a beautiful prayer}.

The surgery lasts for about 10 hours. Chief pediatric surgeon Rebecka Meyers works on disconnecting LuLu's bumpy, scarred liver. At the same time, Willem Van der Werf, Primary's surgical director for liver transplants, is removing organs from the donor.

Once he divides the liver for LuLu and a child in California, Van der Werf walks the soft, pink left lobe to LuLu, whose room is next door.

"You just want her to move without being connected to anything," James says of his post-surgery hopes. "I want her to be able to wrestle with Jonah. [Go] on a simple walk."

At midnight in the ICU, Liz places a gloved hand over LuLu's already-shrunken abdomen and on top of her new liver. She quietly says a prayer of thanks to her daughter's "donor angel."

Caressing LuLu's head, she says: "You did it. You got a new liver."

'She's dying a hero' » Officially, Liz and James only know LuLu received the left segment of a liver. But they're convinced they've seen their angel.

On the morning of LuLu's surgery, Liz received an e-mail from her sister urging her to read a story in The Salt Lake Tribune.

Liz stares at Ashley's quiet smile and reads about her family's decision. "I always had a feeling in my heart that my little girl would one day become a hero," William Antico, Ashley's father, told the newspaper. "She's dying a hero."

Organ donation is anonymous to allow families to give and accept freely, without the pressure of knowing each other, says Karen Hannahs, a family liaison for Intermountain Donor Services.

Liz and James feel compelled to go to Ashley's funeral to pay their respects. They need to know about the girl who saved LuLu's life.

Three days after LuLu's surgery, they leave her in intensive care to drive 170 miles east through the night and snow to Vernal.

They arrive early to the viewing, offered by the LDS Church to be held at a stake center, and are alone with Ashley, in her white casket with images of horses, for a half hour. Liz gently strokes her cheek, holds her hand and touches her where her liver was.

Thank you, Liz says, I am sorry you had to die.

An LDS bishop comes in and, seeing Liz and James' tears, asks how they know Ashley. The couple, also members of the church, hesitate. They hadn't planned to explain their connection to Ashley, wanting to keep the day's focus on her. {and avoid meeting the family}

After the bishop asks for a third time, Liz whispers, "We believe Ashley was the donor for our baby."

In tears, the bishop embraces them, insisting Camie will want to know.

At peace » Driving to the stake center, Camie prays, wondering how she will make it through the day. When she walks into the room, she sees her answer: James and Liz are standing next to Ashley's coffin.

A relative eagerly tells Camie their little girl got Ashley's liver, and Camie instantly feels at peace.

The two mothers hold each other and cry.

Without knowing it, they had been praying for each other for days.

Invited to stay as the casket is closed, Liz and James listen as the family prays for the driver who hit Ashley and the people who received her organs. They watch as Camie kisses Ashley for the last time.

At the funeral, Camie guides them to sit among Ashley's relatives.

"She's a piece of our family," Camie says of LuLu. "They always will be."

'You can be OK' » A week later on Jan. 26, Camie and Liz sit on a couch, holding hands at Primary Children's. Camie has been following LuLu's progress on Liz's blog and she and Ashley's stepfather, Len Lacey, want to meet her.

As the two couples talk for more than an hour, the mothers occasionally touch their matching letter-A pendants.

Liz wants a picture of Ashley to sit next to photos of her children. She vows to Camie she will raise a daughter to make her proud; Ashley, she says, has set the bar.

"I wish more than anything she was alive," Liz says.

Camie comforts Liz. "You can be OK, because I'm OK," she says. "I've spent my whole life trying to get me and my family, my kids, to heaven, and I got one there."

Bradbury, Ashley's emergency room doctor, now says he is comforted she lived so that she could save five other people. Camie is proud that a boy in Canada has her heart; a girl in San Francisco has part of her liver; a Minnesota woman has one kidney while a Utah woman has the other, along with her pancreas.

Intermountain Donor Services confirms LuLu has Ashley's liver. There will always be a risk she could reject it, though the chances are highest in the next year. A lifetime of anti-rejection drugs will bring their own problems.

But within days, LuLu will be home, rolling on her stomach, finally hungry, eating cereal and cupcakes and chocolate. She will jump higher in her bouncy swing and laugh louder. Liz will feel Ashley gave LuLu not only life, but some of her own zest to fully live it.

For now, holding LuLu in the hospital, Liz points to Camie and tells her baby, "You can say, 'Mama.' She gave you life, too."

Camie kisses LuLu's bandaged stomach, saying. "I love you, sweetheart."

In the room, she can feel Ashley again.

The sparkle is back.

hmay@sltrib.com

Note to readers

In hopes of encouraging organ donation, Liz and James Badger allowed The Salt Lake Tribune to follow their daughter London and her wait for a liver. In January, by coincidence, the newspaper separately covered the decision of Ashley Maynard's family to donate her organs. As the two stories intertwined, both families agreed to The Tribune's continued reporting.

Eore take 2

2010-09-26T22:17:00.000-07:00

Camie asked me if we'd want this Eore costume that was Ashleys. She wore it for her first Halloween. I of course said yes and LuLu has loved it. It's always neat when we have tangible Ashley things, connections to someone we love so much but have never met. I was able to spend time with Camie this last week. Woman's World Magazine has asked us if they could do a story on Ashley and LuLu. So we did our photo shoot for it. The issue will be their November/Thanksgiving issue. Appropriate, I feel. I hope we can touch many through the power of our girls and further organ donation awareness. I just want Oprah to mention sometime on her last season to the world to check yes--cause then everyone would. Until then we will go about it every which way we can so that other "LuLu's" can have a second chance at life.

Gratitude, by Grandma Barnum

2010-09-15T21:19:00.001-07:00

Psalms 100

Eight months ago, today, Lulu received her new liver. We're grateful for a healthy and happy Lulu. We're ever mindful of Ashley (Lulu's angel donor) and her family. We send our love to them.

delicious baby.

2010-09-02T09:10:00.001-07:00

Our friend Harmonee

2010-08-29T12:33:00.000-07:00

http://www.deseretnews.com/article/700061126/Utah-baby-gets-a-new-lease-on-life-with-a-liver-transplant.html?pg=1

I was with Farrah and Brandon the night they signed a DNR. With the loss of her own baby's life looming, Farrah voiced her desire for anything that was still viable to be donated. She is amazing. I am so glad miracles happened and with God's hand the skilled Doctors and Nurses saved her life.

Grateful

2010-08-14T20:40:00.000-07:00

dog sitting ramsi (who is now roxy)

http://www.aolnews.com/article/colorado-hospital-suspends-procedure-after-ryan-arnold-transplant-tragedy/19593822

It was sobering to read this article tonight that was emailed to me by my sister Cydnee. She was one of 4 who were screened to be a living donor for LuLu. One of four who were willing to risk everything for LuLu to live.

I am so grateful that Ashley's family made the decision to allow her to be a donor. It spared someone from having to undergo major surgery.

Being an organ donor is so incredibly important. It is miraculous for donor family's despite their grief and loss and for recipients and their family's for preservation of life that could be done no other way but to receive a new organ.

It's been a little over six months since LuLu's transplant and besides a few hospitalizations, medications, appointments, therapy and blood draws...life is so normal. I'm happily adjusting to it. I'm trying not anticipate the next hospital stay- though we know it will happen. I'm trying to shelter her less, leave the house more and let her explore the world a bit...the germs that come with it and all. I'm never far off with a bottle of hand sanitizer.

After going through a year with Lu as we did...we pretty much put our battle gear on and did what we had to do. We always tried to put our best foot forward, enduring with her as best we could. We thought that something magical would happen as soon as she got her transplant and was "better". Like life would be easy again. But the road has felt rougher at times the last several months than it did prior to her transplant. I think it's because we now have to process that year and everything that came with it. It's traumatic but getting better.

Whether we knew our donors family or not we'd still grieve the death of the child that saved our LuLu. It's difficult. Our appreciation is beyond measure.

Again, GRATEFUL neither James or our siblings had to go through with being a live donor.

GRATEFUL to Ashleys MuM and Dad for allowing her to be OUR donor as well as for several others.

xoxo

lizzie

alpha-1, liver mum

Growing up too fast.

2010-08-03T08:14:00.000-07:00

She insisted, I caved. Her woobie showered too.

Tid Bits and what nots

2010-07-18T19:23:00.000-07:00

Ashley's (Lulu's donor) family came to see us today as they were in Salt Lake for a baseball tournament. It was so nice to see them and to feel their love for LuLu despite their great loss. This is a really neat family with 3 amazing kids. Its a privilage to know them.

Tappy toes on our piano

Not all childrens markers are washable. Found this out first hand. Didn't come off for days...don't think this is her color.

Love him.

Love her.

"Her" is doing very well. Her EBV levels are under control and all the other markers they look for with her labs all look great. We are proud of her and haven't had to be inpatient for a few MONTHS! She passed clinic last Monday with flying colors. She is still on the wee side when it comes to LB's, only in the 3rd percentile but we are glad she's on the charts.

She is filled with good spirits and lots of energy. She doesn't ever crawl, rarely walks, just usually sprints on her tippy toes to wherever she is headed. I love it. I love her. What a miracle I hold in my arms everyday.

Love you LuLu.

xoxo

Mum

Live, Laugh, Breathe

2010-07-08T21:07:00.001-07:00

My sweet friend Kendra lost her baby to a rare genetic disease several months ago. She is honoring what would have been her FIRST birthday with a carnival to benefit funding to find a cure for SMARD. This will be an amazing event that she has worked her heart out for. Open to all, please come! We all drive up to Farmington for Lagoon...this will be so much better.

This is an amazing Mum showing her love to her baby. Honoring her, helping others. Her Mum is quite wonderful.

2010-06-26T16:53:00.000-07:00

JACOB MOULTON
Jacob A. Moulton "Forever In Our Hearts" Our strong little angel, Jacob Andrew Moulton, lost his battle with liver cancer on June 17, 2010. He was born on April 20, 2000 in Salt Lake City, Utah to Anthony Miles and Christina Farr Moulton. He was loved and will be missed by everyone he met. He loved camping, astronomy and video games. Survived by his parents; siblings, Connor, Bailey and Madison; grandparents, Almie and Peggy Moulton, Andrew and Patricia Farr; and many aunts, uncles and cousins. Funeral Services on Wednesday, June 23, 2010 at 11:00 a.m. at Riverbend Ward, 895 West 4800 South, Taylorsville, Utah, with viewings on Tuesday from 6-8 p.m. at Jenkins Soffe Mortuary, 4760 S State, and one hour prior to services at the church. Interment Elysian Burial Gardens. In lieu of flowers, donations may be made to the Jacob A. Moulton memorial fund at Mountain America Credit Union. Online condolences: www.jenkins-soffe.com

I heard about this little boy through a friend who knew him. She told me they had a liver ready for transplant but didn't know any other details. I am again reminded of the great need for donors. I am again reminded of how lucky we were that time didn't run out for LuLu. God bless this family and the families/people willing to donate.

Ragnar Baby!!

2010-06-21T13:24:00.000-07:00

When more pictures (from team mates) and time allow...I'll post more about the race. But for now I'll just say it was THE MOST FUN James and I have had in a long time. Our team did great despite injuries, most being rookie-runners and 2 pregnant chicks. I know, crazy...lots of running & no sleep shouldn't seem like a great time. But it was. We had the best team and the funnest van ever. And, running for a good cause- the closest to my heart made it worth the while.

Super Clark

2010-06-13T23:50:00.000-07:00

Rest in peace, fellow liver friend. My heart is broken as I read the latest blog entry, he fought THE fight of a lifetime. He was an amazing man that took it all in stride, the pain, suffering, adversity at every turn for him. Nothing seemed to go right or ever be easy--but I don't think he complained much. He was optimistic. He had a lot of faith.

We will miss you. We will miss following your blog and being inspired by you. Your family and friends will be in my thoughts and my prayers tonight. I will look at LuLu with even greater appreciation. God bless everyone that cared for you, especially your dear, sweet, amazing sister. What an angel on earth.

http://www.superclarkkimble.blogspot.com/

No news is often good news

2010-06-13T22:25:00.000-07:00

We will start saving for braces. She has some pretty funky teeth going on right now.

Loves licorice and black beans....I know, seems like a really bad combo.

He loves chocolate.

So does she.

LuLu is doing exceptionally well. Her labs are about perfect and she's been without her feeding tube for a few weeks now. Not so much because WE felt like she was ready to be done with it and more like SHE was done with it. We were replacing it almost everyday, which is horrible for all parties involved and can't be good for her physically or emotionally. Her growth has remained steady as we have been adding whole cream to about everything she eats and drinks (even water).

She is doing well enough on her own with meds that we have finally resigned and will do our best. Her cheeks are no longer raw from tape ripping off and going back on, no more pumps or syringes to force milk down her throat. (YAY) But I'm still adjusting to seeing her without it. It's been about a year since we first placed it...and of course I am so glad to be done with it but a little part of me is sad. I don't know quite why. Maybe because I thought she was so cute with it...it became an extension of my baby's beautiful face and maybe because I'm realizing my baby isn't so much a baby anymore. But she may be MY baby, my caboose, my second and final. So with each progression she makes there is celebration but a little bit of mourning as well. Don't get me wrong I'm glad the tube is gone- just a little sad she is growing so quickly-there is no going back. Trying to take in everyday.

So, LuLu is tubeless and I am camera-less. I lost it and someone found it, I feel like I lost an arm. Someones lucky day. I've been extremely sad about it but trying to keep perspective-it is something that can be replaced. Maybe not right away...but replaced none-the-less. The last pictures I took were on Memorial Day, we took LuLu on our first "real" family outing. We had a great time at a park across from the zoo. LuLu held a baby duck and chick and fell in love with a new born goat and wouldn't leave him alone. She took her first train ride and looked like she'd seen heaven on her daddy's lap. I really wish I had the pictures to show but I will always remember that day. It was a special day for us. Monumental.

Hours later my camera was history. Whoever the lucky finder was would have scrolled through hundreds of pictures, many of which depicted a very sick child and ended with pics I snapped Memorial Day morning as Jonah and Lu took a shower together for the first time. James' butt may or may not have been a casualty in a few of them. (which would of course have been edited out) and then our lovely afternoon at Heritage Park. So where ever you are dear camera and memory card, we will miss you and I hope to have one just like you real soon.

This was also a day that a moment didn't go by that I didn't think of Ashley, our donor. Made my heart sad that her MuM and Dad would have to go to the cemetery to be close to her as I had my LuLu by my side because of her. I think of her parents all the time. I think of her sisters all the time and how hard the day to day must be without her. I think of her...all the time. Jonah knows who she is. I'll point to her picture in our family room and he will say "that is... Ashley, she gave LuLu some of her liver" that's all he needs to know for now. He loves her and knows she is special to us. I love her and know how extremely exceptional she was. Memorial Day will never be the same.

xoxo,

lizzie

alpha-1, liver mum

Abdul & Co.

2010-06-08T21:04:00.000-07:00

For anyone in the Boise, Idaho area...there will be a fund raising event to support the International Dwarfism Advocacy Association (IDAA) Thursday June 10 from 6-9:00 pm @ the Basque Center: 601 W Grove St. Boise, ID 83702-5971

Matt Roloff from Big People Little World and his son Matt will be there to speak and for a meet and greet. Call 1-208-336-3335 for tickets ext.: 13 or 14. Please go to http://dwarfchildren.org/ to find out more about the Salmans and make a donation if at all possible. This great family and their sponsor family could really use love and support right now. I wish we could be there but LuLu, distance and prior obligations wont allow. Love you Abdul & Co.

Liver Families Picnic

2010-06-03T22:30:00.001-07:00

We had a great time getting together with some of our liver friends, some we already knew well- like the Lais...the rest we met for the first time in person, though tied through our blogs. It's a comfortable feeling being around these strangers as we are linked together by something so near and dear to us all. Our sick babies. At one point I started laughing out loud as we were all asking each others blood types, liver sizes, previous surgeries etc. How many other picnics going on in Sugar House Park that day were people being asked about their blood type? We're a unique group- you could say.

An underlying theme of the day: how great it is to have Dr. Book on our side. I've thought many times before how there is always someone new coming into this scary process of finding out their child has a disease, feeling alone, scared, uncertain, depressed, overwhelmed- (do you want me to keep going?) etc. etc. There is such comfort in numbers. To know you aren't alone-someone else understands-really, really knows what your are going through. Eden was our first we watched go through the transplant process. Edens parents are also the ones who've organized Utah Liver Families, an organization to bring Utah (and Idaho/Wyoming) families dealing with liver problems together for support and friendship. There was no such group, so amongst dealing with their own very sick daughter they created this wonderful organization that will grow exponentially over the years and bless the lives of many to come. Thanks Doug and Erica, bravo to you both. They could have just gone on their way but they stopped and dedicated themselves to ways they could improve this process for all involved. If we would all do that in our own lives....(cliche) we'd live in a better world.

Love you Liver Familes, the ones I know and don't know yet.

xoxo

lizzie

alpha-1, liver mum

Big Shoes to FILL

2010-05-29T15:09:00.000-07:00

No, not mine-- although those are my running shoes. Of course I mean Ashley, our donor. She was only 12 when she died but she was so good and she was wise and she was smart and she was kind and she was beautiful from the inside out. She was so beyond her years it's incredible. She had an undeniable spark.

Every parent wants to do their very best by their children. Raise them right, turn their good little ones into good big ones. I want nothing more. I hope LuLu will be much like Ashley. I hope she will have a deep love for animals because a good heart is not far behind and care about the weak and friendless like Ashley did. I feel pressure that is hard to explain, my daughter is alive because someones daughter isn't. I think about this everyday. LuLu's liver MuM just sent me a picture text of Ashley's sisters, Abby and Sammy. It was taken from behind, the sun setting in front of them. It was peaceful and beautiful and so very Vernal. I was sorry that Ashley wasn't sitting next to them. There was room for her in the frame. I'm sure Camie thinks that every time she snaps a shot. Some days this makes me so sad I cry while I'm vacuuming, folding laundry or catch a delicious glimpse of LuLu laughing and playing. I'm crying for what they lost and for what I gained. I remember that so many people are missing Ashley while we are devouring LuLu. A day will never go by where I wont recognize Ashley in our lives. Camie and I never end a conversation or a text message without an I love you. And I do LOVE her. And I do LOVE Ashley's Dad.

God knew we needed each other to get through this. That is why the stars aligned as they did so we could meet just days after LuLu's transplant and Ashley's death. What nobility these parents and loved ones of donors have to give life when their loved ones couldn't be preserved any longer. And what a responsibility us parents of recipients and recipients themselves have of living lives worthy of that sacrifice. It is both a burden and an inspiration to me at the same time

Fill those shoes LuLu. Fill those shoes.

xoxo

lizzie

alpha1-liver mum

Challenge accepted.

2010-05-19T13:47:00.000-07:00

See this:

utahlais.blogspot.com/2010/05/tube-time.html

Bravo, well done. Thanks for the laugh, needed it today.

xoxo
lizzie
alpha-1, liver mum

Sayonara PCMC...til tomorrow that is.

2010-05-19T12:03:00.000-07:00

New trick-head stands. Hate that it's on the hospital floor...but, what can I do? Whatever floats her boat at this point.

London's scans went well today (hooray!), no blockages. Blood flow, kidneys, spleen, LIVER all look good. Q. Book is chalking her liver inflammation to the Epstein-Barr virus. So they will let us leave today, with another medication (Valcyte) to control the EVB as well as lower her immunosuppressent drugs to help fight the virus. We will go back to the hospital early in the morning for more blood work and she'll be followed closely (as always).

Dr. Book is so amazing. She is always calm, cool and collected. She always knows what to do and how to do it and how to get it done quicker than anyone else could. I have such respect and love for her and her team. We couldn't have been placed in better hands than hers. It will be a sad day in Utah for liver families when that woman retires. I declare a Holiday called Dr. Book Day--I'll let y'all know when it is and what to do...Sometimes the only peace I can find in all of this and what is ahead is that she will be there to take care of us.

xoxo

lizzie

alpha-1, liver mum

Congrats Harmonee on being so brave and strong. I can't believe these tiny little bodies with huge spirits can endure so much. We are SO proud of her and can't wait to see the new life her new liver brings.

She's not a reject! ;)

2010-05-18T20:57:00.000-07:00

...I already knew SHE wasn't but her liver isn't rejecting either. (don't think I've used that horrible term since 7th grade) So now we just need to find out what IS going on with her liver. Really, I should say "their" liver. I'll always think of it as Ashley's too.

The biopsy showed inflammation/hepatitis which isn't a good thing. Tomorrow she'll have more testing, an ultrasound and venogram. This will give them a good look at her liver and check for clotting where her and Ashley's veins connect. I don't have a lot of information right now but am looking forward to rounds tomorrow so I can pick Q. Books amazing brain. (or whichever amazing GI Doc Brain is on service) I'm relieved but also scared. I wanted her cold a few weeks ago to be the last thing to get her down, for a while at least.

My Mum came up last night with her overnight bag and forced me home to sleep in my bed with my James. I fell asleep to him rubbing my scalp and tickling my back. It was so strange to wake up together in a house without our kids. One at NaNas the other at the hospital. It's still weird that this is our life. I am grateful for the good night sleep I got and for the cozy cushion my Mom left behind on my chair-that-converts-to-a-tiny-bed at the hospital. She is to me what I am to Lu and Jones. Their comforter, their best friend, their number one fan, someone who will love them no matter what. I can't believe I am THAT to two perfect little humans of my own and my Mom is still that to me 29 years later.

My Mom went through a lot to have me. I caused severe complications during her pregnancy that were life threatening to her and more so during delivery. Her Doctor highly recommended she abort me several times and save herself and preserve the family she already had. She wouldn't. He wouldn't. My poor Dad having to face the possibility of being a young widower with 5 kids all 18-months apart and losing his sweetheart. They didn't even flirt with the idea, her Doctor probably thought them crazy. They had faith it would work out and she already loved me enough that she would have died trying. They were willing to sacrifice so much to bring me into their family. I can understand now being a parent myself. I would sacrifice anything, myself included to save my family. That is why I was so hurt when I couldn't be the one to save LuLu and give her MY liver. Moms want to make things better. I just want to make her better.

So, my plan for now is to buck up--face a few more days in the hospital with London and many more hospital stays in the future. I'll be happy to be here and stop mourning what I'd really like for us to be doing. I am her Mum and will continue to do whatever it takes. We have HER. It's amazing.

She doesn't nap well in the hospital. I know, go figure. A well lit, noisy room with people coming in and out and me sitting here trying not to make eye contact doesn't scream "I want to go to sleep" for a one year old. So after a few hours of her pittering and pattering in her metal crib I decided to climb in with her. It was a beautiful experience. After many little fingers up my nose, in my eye and trying to pry open my mouth she finally settled down and I got to sleep next to my baby, who will not be a baby much longer. And what if she's my last baby? I've always wanted three but as I've learned life doesn't always go as planned. There are a lot of logistics for us to now think of with having a third. So for now I'll savor her as if she were my last but hope one day she will be a big sister.

More news tomorrow, hopes to get to the bottom of this.

xoxo

lizzie

alpha-1, liver mum

Knock on wood

2010-05-17T21:13:00.000-07:00

Seconds after finishing my post yesterday my phone rang. Caller ID said it wasDr. Book. I couldn't wait to say "I was right about clinic today, ha, ha, ha, ha, ha-ha" to our nurse...I know, I'm so mature. After I told Corinne and she lovingly gave me a courtesy laugh, she said "well it's a very good thing you did come in today to do labs". My heart dropped to my big toe. Tears already flowing. No. No. No. No. Whatever she was about to say...No. I can't do it. My poor Lu, we can't do it. We can't go back to the hospital, we just got out. There can't be something major wrong, we're just barely on the right track. She SEEMS just fine.

She said her liver numbers are very alarming. I am sobbing now. I walked out to James in the kitchen. All he sees are my tears and knows something is seriously wrong, he just doesn't know what. I am on the floor at this point, my legs wouldn't hold me up. We needed to hurry back to the hospital, there would be a room ready for us (bypassing the ER) and she'd be getting a liver biopsy done tomorrow. Her liver enzymes should be around 60, but one was 700 the other over 1000.

Fast forward to the present moment. London is positive for a virus called Epstein Barr which could be contributing to the elevation in her liver numbers but the only way to know if it's in combination to rejection is the liver biopsy. She just got out of surgery and is recovering well from the anesthesia. We'll hopefully have results in the coming hours from her biopsy.

Dr. Book calmed me last night. We don't even need to be thinking about another transplant. They can most always treat rejection. The EB will be monitored very closely and be treated with antivirals. Again EB is no big deal for the common population but for a liver transplantee and immunosuppressed baby it's dangerous and will be treated seriously.

So for now we wait. I worry and am exhausted. I want off this roller-coaster. I don't want have to worry about London every day. I am sad for her and for what has been her normal life. She hasn't been to the zoo, has been to a park once (and got sick after) and rarely leaves our house unless it's to go to the hospital or to stay in the hospital. She's been to few family functions, and is a novelty to her cousins. I know it will get better and easier...I'm just ready for that to be now.

xoxo

lizzie downer ;)

alpha-1, liver mum

ps Harmonee is still in surgery, it's been a long, rough night but she is persevering.

pps Ragnar relay is a month away...whenever I get serious about training for my 13.5 miles that I'll be running, we end up back in the hospital. New method of training- James will drop me off 10 miles away from home and I'll make my way back. :) Do or die at this point. If we weren't running for "Donate Life" I'd probably have forfeited by now.

Such a MONDAY

2010-05-17T13:51:00.000-07:00

After 2 blood draws, trying to eat some berries....

Wonder who did this....??

DEEP BREATH. Got up late this morning. Luckily my barking dogs did what my internal clock or alarm clock didn't. I might have slept all day. (sigh, that would be nice) I was 15 minutes late giving London her Prograf. Bad Mum. Jonah is still sleeping, so here's the plan-finish meds, get LuLu's milk-pump-a-pumpin', get her some nibbles that she probably wont nibble. (lately she seems to not need to eat or drink, ever) then I'll wake Jones up to get him ready for Preschool, feed and water him while getting London ready for her clinic appointment at Primarys, where I'll go straight to after dropping Jonah off in Murray by our old house for his school, (opposite ends of town) after the hospital I'll dash straight back out to pick him up (hopefully somewhat on time), somewhere in the midst of all this I'll brush my teeth and get myself ready-eating would be a luxury I'll do without this morning.

LuLu wouldn't eat but played in her food and made herself a big mess, there's no time for a bath. She likes to use her morning strawberries (or anything else on her plate) as a phone-which is adorable but makes for awfully sticky hair. Luckily, she has a the trusty tube down her nose as a backup which has been more of a primary feeding source lately. Jonah was Jonah, cute and sweet...but slow as can be. I sounded like a broken record all morning, he probably gets sick of hearing me rush him along too, that is if he's even hearing me. Maybe I need to get his ears checked. Put that on my list.

LuLu pooped right after I got her in her car seat so five more minutes lost...can't be mad at her. We all poop. Her timing is just always bad. I'm getting later by the minute but am finally on the freeway with no phone- I left it in James' truck last night. Can't call Miss Joy to tell her we are running late, can't call the hospital to tell them we are running even later. My gas light is on. How long has that been there? Pray to the Gasoline Gods to just let me get to the hospital before we run out on the side of the road. I then got pulled over for speeding. More time lost. Shame on me I thought as I looked at what was in my backseat. Embarassing. Who cares if we're a bit late?-slow down, I remind myself. But let me tell you.. being late to clinic, making Q. (short for Queen) Book wait is comparable in my book to being late for a job interview. You just don't do it. It provokes such anxiety in me. I value her time, I'd never want them waiting on ME. Mondays are VERY busy with clinic and if you make them behind, you make a lot of other people behind too.

I arrive, 25 minutes late and check in, I wanted to put a bag over my head--the waiting room is packed. I fell asleep standing up for a bit, then snagged us a chair. I was greeted a few minutes later by Natalie (clinic coordinator, and sweetest person ever) saying they didn't have us on the schedule. (all this for nothin'? I am thinking, fight back the tears LIZ) We tried to reconcile the mix-up and she offered to squeeze me in to be seen. THANKS, but NO THANKS. I don't feel London is in any imminent danger and we'd be waiting forever. I decide we will just do labs and they can review them and we will reschedule to be seen. So, I go down to pre-register for labs and the lady asks me if I'll be seeing Dr. Book as well- "no, not today" I say, she doesn't need to hear about the mix up or how my days been going thus far. "Well, I have you down for seeing her at 11, you should already be up there." My day planner never lies. I explain to her now there was a scheduling error and I'll just be doing the labs.

So we're off to the lab, more waiting. Trying to breathe, ZENness Liz, keep it together Liz, center yourself a bit Liz. I still have a long day ahead. We go back for her blood draw, she knows where she is and what's about to go down. The woman sticks her arm, nothing-no blood. It didn't even look like she was anywhere near a vein. She fished around for a few minutes as Lu is crying and fighting for what she must think is her life, looking at ME as I'm holding her tight in my arms trying to sing our song over her screams. Please pull it out lady, try again. It might have been her first day. I am always extra kind and understanding when someone is learning...but it's hard to be patient when your child is suffering because of a lack of expertise. I kept silent, was nice. Second try in her hand-- no blood. Bloody hell, please get some blood soon or I will cry. She hit the button for some back up and finally drew some blood back all the while London is watching my face as she screams and I'm worried her tiny arm is going to detach from her body like my Barbie doll's use to. There were 3 of us holding it as her body thrashed.

They were preparing for a third stick and I was preparing for an anxiety attack as they caluculated they barely had enough to get by. Thanks to the blood God's for that. I would have like to have seen Farrah and Harmonee but I had to get out of the hospital and AGAIN-I didn't have my phone to call her, I couldn't have gone into the PICU with Lu anyways and I would barely be getting Jonah on time as it was. So off we went, fingers crossed again that we make it to a gas station in time. I just wanted to call someone who cared. Which would be James so I could complain or laugh or whatever...but I couldn't cause I didn't have my PHONE. I made it to Phillips 66 and what do you know? They had a payphone that was half way pulled out of the ground so I'd have been surprised if it worked anyways. I started filling up my car and even though it was just several steps away, I took my keys out and locked the doors (windows down of course)- I had flashes of being on the evening news. "Carjacked with baby in the back seat...needs medication ASAP etc etc. AMBER alert etc. etc." No thank you, not today. So I watched my car as I put a DOLLAR in the phone for a local call and called my better half.

The phone was dirty (dirty, dirty), didn't work well and I was limited on time anyways so our conversation was brief and to the point. I word vomited, he listened and loved me. He did give me some really good news though, he got word (since he had my cell) that Harmonee received a good offer for a liver. Surgery tonight!!!!! I got in the car sanitized my hands and my right ear (promise I did) and off I went to get Jonah. No speeding this time. Made it home to the house I can't keep clean but is filled with love and happiness. LuLu asleep in her crib, Jonah next door playing with friends. Life is good. Anyone have a Xanax?

xoxo

lizzie

alpha 1, liver mum

ps....phone just rang. being rushed back up to the hospital. bad labs....to be continued.

Thank You

2010-05-13T09:48:00.001-07:00

I've tried to be diligent in sending LuLu thank-you cards to the many friends, family and strangers that have shown us a great deal of love and support this last year. With that being said, I know I've missed a few...so Thank-You.

Thank you to all the people who take the time to check in on our LuLu, for love and concern about a baby you've never met before. Thank-you for sweet comments, encouraging emails and for the connections we have made with amazing people across the globe because of London's blog. I use to think blogs were for the birds, boy have I eaten my words. Blogs are quite amazing.

From the bottom of my heart, Thank-you.

xoxo
Lizzie
alpha-1, liver mum

Welcome to Holland

2010-05-12T10:29:00.000-07:00

(December 2009)

"Welcome to Holland"
By Emily Perl Kingsley, 1987.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, go away...because the loss of that dream is a very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

We are so thankful our London took us to Holland. It's the most lovely place we have ever been. The unexpected change in destination is exactly where we were suppose to go all along, changed us to whom we have become and changed how we will live the course of our lives. As hard as it's been in "Holland" at times...to think we could have missed "ALL" that was this last year makes my heart sad.

xoxo

lizzie

alpha-1, liver mum

Miss Ramsi

2010-05-10T11:09:00.000-07:00

Sometimes I think I can take on the world. Save this, do that...and then I realize I can't do it all. It's too much, I've pulled myself too thin. I love Ramsi. She is a GOOD dog. I wanted to keep her forever. She deserves the BEST. A loving FAMILY a BIG yard. I thought I could manage 3 dogs and 2 kids, but I can't. I'd also like to take on a third kid one day and that would make 3 dogs and 3 kids. I know I can't do that. I feel a lot of guilt for letting her go, but am reminded she would have died if James and I didn't pick her up of the highway 4 months ago and nursed her back to health. I can't keep every dog we find. Lesson learned.

We won't give her up to a shelter. We will foster her til we find her a forever home. We've been without a fenced yard since the move so my dear parents have had her down in Lehi in their big, beautiful back yard. If you or anyone you know is interested, PLEASE contact me. I'd love to be able to keep tabs on her and know she is doing well. She is great with other dogs (haven't tested cats but think it could work) and with kids. She is great indoors/outdoors. IS potty trained and comes with a Dogloo and kennel. She sleeps in her kennel at night without a whine. She is very smart and beautiful. We love her, but can't keep her. Can you?

elizabethbarnum@hotmail.com

***Ramsi has found a FOREVER home with an AMAZING family. (LuLu's pharmacist actually!!) We found her so she could get to them, I'm sure of it.***

We are excited to be her built in dogsitters, so we'll still get to see her & love her!

Love being their MuM...throw-up, poop and all

2010-05-09T21:18:00.000-07:00

The day started out ever so lovely. A Badger brunch at my sister-in-law Whitney's house. Love seeing my nieces and nephews who I've missed dearly this last year. The food was amazing, as always. Above our dear Grandpa Badger.

Not so amazing coming back up....

Shortly after we left Whitney's Jonah told me twice that his tummy hurt, did I take him seriously? No, not til he started vomiting all over the place. I'll believe him next time. Luckily, I had one of LuLu's blankies handy which took the brunt of it but it was still what I'll call Mothers Day Disaster of 2010. We pulled over to handle the situation then flipped a U and headed straight home cancelling the rest of the days celebrations.

Casualties: new carseat, my car interior, his clothes, Londons blankie, the pleasent smell that use to reside in my vehicle. This is when leather seats would come in handy.

Diet Coke--the only liquid in the car.

Parading while we (mostly James) cleaned up the aftermath.

Good thing we always travel with Clorox wipes which served 2 purposes- the wipes for cleaning up and the empty container for a barf bucket for the drive home.

We were almost home when Jonah warned me he needed to poop. I begged him to wait a few more blocks, "squeeze your cheeks" I said, we were almost home. "Too late" was his reply. We hurried and pulled over to a Blockbuster to borrow their bathroom and finish the job right. We returned to the car with him wrapped in paper towels- for modesty of course. Poor child, we all laughed with him/at him. So glad I had my camerra today.

The ride home....nothing but a paper towell and a seat belt to cover up with. So glad we weren't pulled over for any reason. Wouldn't have wanted to explain to the officer why we have a young, naked child without clothes or a carseat.

Of course it was a Happy Mothers day because I was with my family. I am lucky to have 2 wonderful children. This day didn't pass without much thinking of our donor Ashley and her SWEET Mum and family. Their first Mothers Day not together. Camie without her firstborn by her side.

A day most of us celebrate and reflect on the joys of being a Mother, many suffer and feel their deepest sorrow about not having been able to have children of their own, feel the void of a child that has passed away or miss their own MuM's that are no longer with them. I am LUCKY our donor family decided to be a donor family and that this Mothers Day I wasn't without my beautiful, perfect, tough-as-nails London.

Love you MoM, Love you Cindy, Love you Grandmas of mine, Love you CAMIE, Love you Laura, Carol, Rob, April, Anna, MJ and all the other Mommas that treated me like their own growing up. Love you Jonah, Love you LuLu-thank you for making me a MOM.

Must mention another highlight of this day...seeing a cute OLD man riding a bike and smoking a pipe. Don't see that everyday. Laughs.

Later Gator

2010-05-06T10:04:00.001-07:00

AND, WERE HOME. (sweet home) Lu was so happy to drive the car down the halls into the elevator and out the door. She'd been waiting for days to bust out of her room for this joy ride. Welcome home LuLu, welcome back Jonah. Thank you Grandma and Grandpa for taking him the last few days.

xoxo

lizzie

alpha-1, liver mum

ps Jones get better, Mum and Lu don't want to go back to the hospital anytime soon.

Chaser Man

2010-05-04T21:08:00.001-07:00

My friend's little boy was recently diagnosed with leukemia. His name is Chase and he's incredible as are ALL kiddos that deal with childhood illness. Come enjoy a wonderful carnival (promise there will be no "carnies") and support a great, big wonderful cause.

Our morale was lifted during our toughest times with London by the support of friends, family and strangers alike. Please show this family the love.

God speed little man.

xoxo
lizzie
alpha 1, liver mum

Verdict is in...

2010-05-04T18:17:00.000-07:00

We were both very smelly this morning so Lu got a good bath and I got to go home and shower thanks to Aunt Mary Jane. I do not enjoy showering in public bathrooms, I'd rather be dirty til I can make it home.

You bet I'll blackmail my daughter with this picture one day. It made me laugh, hope it makes you too...

Ahh, that's more like it. Enjoying room service-a perk to being isolated to our room. Hospital food gets a bad rap, but it's actually really good- as long as you aren't eating it more than a few days straight, then it turns bad fast.

Poo for dinner or so it looks. It was actually dessert. Chocolate dipped Oreos- a favorite hospital splurge.

A visit from Jonah is always good medicine. Thanks to Nana, PaPa, cousin Jen, Miss Joy and Miss Julie for all your help with him. Jonah also loves self declared take-your-son-to-work-days like today.

RHINO VIRUS

..sounds really scary, but in all actuality it's a strain of the common cold. Not a big deal for most. For LuLers it is. Hence my paranoia about hand washing, shoe removing, Clorox wiping, limited visitors, aversion to public places etc. It's my life to keep her healthy we aren't ever "out of the woods."

"Rhino viruses can cause clinically significant, chronic lower respiratory tract infections in immunosuppressed patients. Respiratory syncytial virus, influenza viruses, and para influenza viruses have all been reported to cause serious lower respiratory tract infections in immunocompromised host."

We are happy it isn't anything worse but also realize that trips to the ER for a cold/fever is what is in store for us, forever. I'm not complaining- we are grateful she's here with us and we have access to the best medicine whenever she needs it. These few day stints are good reminders of just how lucky we are and how important our little family is to us. Life is so fragile and London is our constant reminder of this.

Get well & keep well my Little Lu.

xoxo,
Lizzie

Alpha 1, liver Mum

The Best medicine + Gods Hand = Big Fat Miracles

2010-05-03T18:13:00.000-07:00

Harmonee is doing AMAZING. see http://www.harmoneesliver.blogspot.com/2010/05/blue-eyes.html for her Mum's update today. WOW is all I can say. They will start accepting offers in the next few days. Thank you to every ones love and support for her. I've had emails from people offering to undergo live testing for her...wondering if there is anything they can do for this family. Thanks blog friends! Ya'll are some good people.

This is about 2 am last night, still in the ER. We got into our room around 3 and to bed by 4. She had just been through the ringer when this was taken. She was cathed, nose/throat suction/IV/labs which didn't go so well and chest xrays in a 30 minute period on top of being seriously exhausted- that's gotta hurt. James always gets a little PTS after seeing and holding London down like we have to and witness her suffering.

She's SO forgiving.

Last night we ruled out rejection issues, her liver numbers are fabulous. Bacterial infections were also ruled out...so we are still waiting labs trying to figure out what is causing fevers that persisted today as well. Doctors suspect it's something viral,(CMV, EBV) with her weak immune system fighting anything off is difficult. She's been treated with antivirals and antibiotics since last night and receiving fluids to help combat the fever. She has been in good spirits all day which is promising. We will stay until they figure out what's buggin' my girl. Hopefully this doesn't turn into more than a few days.

We are so grateful for London and her fighting spirit. She was born with a great purpose in her life, so much good has come out of being born ill. She has taught James and I lessons we could never have learned, changed us for the better. I'm excited to see her fulfill her God given potential. I know she will continue to change the world we live in.

Get well soon Lu.

xoxo

lizzie

alpha-1, liver mum

Wee Harmonee & Little LuLu under the same roof

2010-05-02T21:11:00.000-07:00

Liver MuM Love. (last night)

On the phone tonight with one of her GI Docs...no messin' around post transplant. And per Dr. Jackson...we're off to the ER. A quick shower, packing of bags, dealings with dogs, sending Jones to NaNa's and we are ready to go. I don't ER-alone.

Waiting...waiting and more waiting. Just how it goes.

Typical.

I am so happy to say that Wee Harmonee has been stable today. (see her blog for yesterdays update & more pictures I posted for her Mum) She has also had negative cultures for infections today. HOORAY! If they can get 3 straight days of negative results they will accept an offer for a liver when the right one comes in. This brings HOPE for HARM and her family.

In other breaking news, James and I are sitting in the ER with Little LuLu as she has a high fever (103) and respitory distress (72 br/p/m). She had a fever last night too, but broke and we'd hoped it would be nothing. This could mean an infection or be signs of rejection. If it is rejection it's caught early and would most likely be treated with an increase in her anti rejection drugs. If it's an infection, will be treated with antibiotics...so hopefully this wont be a big deal or a long stay. She is such a tough little love, we're lucky she's ours.

They will start an IV soon, draw labs, treat her with a broadspectrum antibiotic, chest xray, nose suction, get admitted to her suite and figure out what is wrong. Sorry for not calling Mum, but didn't want to worry you til morning.

This still feels like our home-away-from-home.

xoxo

lizzie

alpha-1, liver mum

Wee Harmonee

2010-05-01T13:50:00.000-07:00

This love isn't thriving as we all hoped she would. Her condition has continued to diminish over this last week in the PICU. She's been in multiple organ failure. Besides her liver and kidneys her heart and lungs have also suffered. Harm has been on dialysis for a few days. She survived an emergency surgery last night in hopes it would send her in the right direction. She is very sick. The night was steady but this morning she couldn't keep her blood pressure up. Mum and Dad would love a miracle...but are also preparing for the worst with wee Harmonee.

Today her Mum and Dad signed a DNR as well as papers for her to be an organ donor of any viable organs. They hope her heart, lungs and pancreas will be healthy enough to give to another. If we lose one of our "liver kids" to Biliary Atresia, these parents are so loving & willing to give a "heart kid", "lung kid", "pancreas kid"......another shot at life--the same shot London got, the same one we're hoping Harmonee will have. Organ donation is giving them some peace right now.

Harmonee has been in the same room our donor Ashley was in. I pray Ashley will be close by today. I pray for miracles, please do to.

xoxo

lizzie

alpha1, liver mum

Our little Stair Master

2010-04-29T17:28:00.000-07:00

A little over three months ago she couldn't lay on her bloated belly. Then she got a new liver, that liver was like a SUPER POWER. 2 weeks after transplant she was on her haunches. Days later crawling. Weeks later walking, now-sprinting and going up and down our stairs like it's no ones business. What a miracle. Thank-you Ashley and all donors who have given life to another. But we need many more. Our liver friend Harmonee is holding on tight to dear life in the PICU...waiting for a liver. I hope she gets her SUPER LIVER POWERS soon too. We love you Harm.

Harmonee has had multiple blood transfusions, receiving platelets and plasma to help her body hold on and fight hard. All that are able to donate blood, please do. You never know when you or someone you love may need it. Contact ARUP (local) or the Red Cross for an appointment, then consider yourself a HERO because it will save a life.

Loving LuLu

2010-04-28T23:23:00.000-07:00

Tube time....

2010-04-27T22:40:00.001-07:00

Cousin Jeff, sitting back, sipping a diet root beer and about to have some Sunday afternoon entertainment Badger style....

Don't worry, I'm a pro...we've probably done this to LuLu over a hundred times. :(

Quick and dirty....

Jeff trying to restrain James as he started to fight it....

I had it almost all the way down...

...and he yanked it out.

Maybe you had to be there...but it was one of the funniest things I've seen in a while.

He was gagging and all sorts of about to throw up..., thinking to myself that my tough husband is kind of a baby. LuLu does this all the time.

I'm surprised I didn't reflexively get chucked off the island.

Much coughing to follow, a continued burning, itchy nose and throat....

He's a champ for trying.

And I'm up...thought I could handle it. I've birthed 2 babies naturally at home. Just kidding, totally drugged and in the hospital but still I birthed 2 babies. My foot was pounding the counter trying to endure the momentary torture and secretly hoping I could do something James couldn't.

No such luck. Child birth was easier than this.

Poser. This is just taped to his face and barely in his nose. Neither of us could hack it...which made it even harder knowing we had to put it back down LuLu's nose immediately as she will not consume the amount of fluid/calories she needs to keep her kidneys flushed and add pounds to her tiny frame. But that's being a parent I guess, doing what you know is best for your child even when it's hard to do.

Wrapped like a burrito, Dad on top, head pinned with MuM's knees makes for a defenseless little baby. We're quick, she's tough and forgiving. It was a good few days to see her without it but it's not time to flush it down the toilet yet. Anyone up for the tube challenge??

Save Lives

2010-04-27T22:20:00.000-07:00

WHAT YOU CAN DO TO SAVE LIVES
1. Register with your State's organ & tissue donor registry. To learn how: www.organdonor.gov
2. Speak with your family, friends and colleagues about your decision to be a donor.
3. Encourage your workplace ,church, schools, neighborhood organizations, and city to adopt donation as a mission.
4. Encourage your elected officials to support donation legislation.
5. Speak at your local High School, College or University. Ask them to participate in the National Donation Campus Challenge. www.organdonor/campus.gov
6. Participate in events sponsored by your local organ procurement organization.
ONE organ donor can SAVE the lives of up to 8 people
ONE tissue donor can SAVE / ENHANCE the lives of up to 50 people. Help our returning solders from Iraq and Afghanistan who require tissue for reconstructive surgery

(from YES UTAH website)

Red Cross

2010-04-22T20:52:00.000-07:00

I've been privileged to speak at a few Red Cross functions to share LuLu's story. I love promoting organ donation as you know if you read this blog but it's important to remember we cant have successful, life saving transplants without donor blood. LuLu received 9 units of blood during and after surgery. She needed platelets for days. I am so grateful to blood donors, whether or not their blood went to my Lu, in theory it's all the same.

I will continue to do my part to pay it forward and hope that others waiting for their kidney, liver, heart, pancreas, lungs etc...won't wait as long or die trying. I had a rad (you know who you are) guy approach me after I spoke about LuLu and Ashley and said he was going home that day to sign up to be an organ donor. Mission accomplished.

I've made it clear to my James and declare it now to the world that if I can be a donor when my life comes to an end I want nothing left of me. Take my eyes, my face (you know they do face transplants, right?) every viable organ, every bit of tissue and skin on my body. Cremate me or have a closed casket with the coffin nailed shut, I don't care which.

I laugh now, because I've asked my friends who've done my hair for years to make sure it looks good when I die and Kathryn to be sure my makeup looks good when people are walking through and giving their condolences. Please don't leave it to the old lady working at the mortuary to style me up for my final hoorah.... Very vain, I know. Let's just say I've come a long way. Take it all.

****added on by Auntie Julia below*****
This blog post made me think of a recent road trip Lizzie and I took with our sons. We were in the car for 12 hours, and much of that time was spent reflecting on LuLu's diagnosis, treatment, and subsequent transplant. Lizzie is so passionate about organ donation. We started talking about reasons why someone wouldn't want to be an organ donor, and couldn't think of too many. Lizzie got all fired up and said, "When I die, I want them to take it all. My organs, my bones, my face, even the skin off my body. Then, I want an open casket funeral..." momentarily horrified and a little nauseous thinking about it , I looked over at Lizzie like she was insane. It took her a second for her mind to catch up to her words. We busted out laughing until we cried as we talked about the horror of loved ones, especially little kids viewing her open casket without anything left of her. Closed casket indeed!!!

From LuLu's Uncle D

2010-04-21T09:33:00.000-07:00

A Poem to LuLu

I cannot remember ever praying a more beautiful miracle call!

GOD has made you perfect, hair, frame, fingers, liver and all.

There could never be a more beautiful you our sweet little LuLu.

Come dancing and singing and playing as the answer to our prayer,

with that hair that goes everywhere and eyes that capture our stare.

There could never be a more beautiful you our sweet little LuLu.

Light our faith with that cheeky smiling face of pure innocence and grace

while we praise the Name of JESUS for healing you in your place.

There could never be a more beautiful you our sweet little LuLu.

We see our LORD in your laughter and your fun

and we are reminded that to HIM we must always run.

There could never be a more beautiful you our sweet little LuLu.

We love GOD more for your new liver that came in the final hour

and we thank HIM always for such awesome healing power.

There could never be a more beautiful you our sweet little LuLu.

You are just a miracle of hope and joy in who you are and all you do.

Oh what a blessing you are through and through.

There could never be a more beautiful you our sweet little LuLu.

I cannot remember ever praying a more beautiful miracle call!

I’ve never seen a more beautiful miracle at all.

There could never be a more beautiful you, our sweet little LuLu

Tubeless and Good at Drugs

2010-04-20T14:19:00.000-07:00

Lulers gets her tube out, we put it back. It is a regular occurrence and a two person job. I was alone yesterday morning when she woke up sans tube, James wouldn't be home til late evening... so I gave her meds orally with a little trickery (syringe with water) in between syringes of drugs. She loves water but shouldn't have it much because of the empty calories. Long story short she's doing great with her medications by mouth so maybe we will drop the hose sooner than later. I was thinking we'd have another year with it....

The only other reason for keeping it is to get enough calories in her per day which I track closely. Whatever she wouldn't take by mouth we'd drop down her tube. she doesn't want to drink anywhere near the amount of ounces she should but we are working hard and being creative. Chocolate milk, strawberry milk, vanilla etc. etc.

It will be so nice for her not to have a tube up her nose and down her throat, dangling from her body. It will be nice not to have to plaster her cheek with tape. It is nice to see her without it only if it is temporary for now. James wants me to put one down his nose...just to know how it feels. Pictures to follow.

Note to future LuLu: tubeless is good, topless is bad. Anti-rejection drugs are good, the rest are bad. I love you more than life London.

xoxo

lizzie

alpha-1, liver mum

Run Alec, Run.

2010-04-15T10:02:00.000-07:00

Alec and Megan

I think anyone who completes a marathon is quite amazing. That is a lotta miles to run, a huge feat, crazy training, much motivation and intense discipline. I'm tired just thinking about it. For some running comes more naturally than for others, some people actually LIKE it. (imagine that?!) For most running is much more difficult. Many endure more, have to try harder, have something to overcome but still get to the finish line. For THIS guy getting to the starting line was spurred by a long road he was forced to travel. Meet Alec.

He had a liver transplant less than a year ago and he is running the Salt Lake Marathon this weekend. He wasn't a "runner" before, but he's a "runner" now and loves it. He wanted to mark his first year post transplant with something huge--and he is! I'm sure he'll think of and praise his donor every step of 26.21875 mile way. Alec may be running on our Ragnar Relay Donate Life Team.

Good Luck Alec, show Salt Lake what transplantees can do!!

www.alecandmeganrampton.blogspot.com/2009_05_01_archive.html

xoxo

lizzie

alpha-1, liver mum

Peace, Harmonee & Perspective

2010-04-12T14:59:00.000-07:00

"Meet little Miss Harmonee"

Today is Monday which equates to CLINIC at Primary Children's. With our recent move our commute has been cut in half which is a nice perk for me being a Liver-Mum, Hospital-Mom, Medical-Mom...whatever you choose to call whatever it is I have been this last year. Her appointment was great-all is well with London. LuLu entertained/IMPRESSED everyone with her new skills, squawking, talking & walking. She worked the office between exams in her diaper, purple Mukluks (boots) and signature over sized bow. Everyone in that office knows LuLu and LuLu knows everyone. It feels like we are surrounded by our friends and family when we are there. We love Primarys and everyone in it. We are lucky, we are grateful and we are feeling more at PEACE every day.

Lu is well enough to start being seen every other Monday as well as labs every other week too. We will start going back into the real world a little bit as RSV and all the other yucky stuff is winding down. Wow, are we really here already? I'm eager to have play dates with friends. Lateovers with cousins sounds like a dream. I'm excited to go to the Zoo and see Batty with my kids (Ashley, our donors favorite @ Hogal Zoo). I'm looking forward to family functions and going to church again. We've been isolated for quite sometime but it's been in the name of LuLu, which makes it all worth it.

As we near the end (well sort of, it never really ends though) of our time in Liverland others are just starting, some are in the middle and one-by-one crossing the finish line with a life saving transplant. It would be ignorant of me not to remember that many don't make it. For some, time runs out waiting. Imagine that-watching your child die, your Mum die, your best friend or neighbor because there aren't enough organs available. P.L.E.A.S.E. consider being a donor if you are not. Please talk with your friends and family about it and your wishes. Dying someones hero, being someones Savior- what could be better than that? I'm grateful we didn't suffer the pain of losing a child.

Meet Lu's friend Miss HARMONEE, she is 1 of the many waiting. http://www.harmoneesliver.blogspot.com/ She is from Brigham City, Utah and has had quite the go lately. Back-and-forth, back-and-forth, long hospital stays and a lot of complications. I have anxiety just thinking about it. MuM Farrah is waiting for a call telling her they have a liver for her 6 month old baby who's has Biliary Atresia. This will be her second life saving surgery. Neither Mum nor Dad qualifies as a good living donor match for Harmonee. PS Dad is in the military and will most likely be deployed when she has her transplant. I can't even imagine for both of them how difficult this must be.

I met her about an hour before Harmonee's first surgery that took place the day after she was diagnosed with BA, talk about a whirlwind for them. During our admission in December I couldn't hold myself back from entering an obviously scared, heartbroken couples room whose Doctors name on the door was BOOK (you know--the Queen) I wondered...does that baby have Alpha-1 too? A beautiful friendship was instantly forged as it is with all Liver Mums. I had to let her know she wasn't alone, theoretically and physically. I was right down the hall in the middle of a month stay at Hotel Primarys. They needed to know there are other people dealing with similar issues and we're all here to help. I felt absolutely alone after London's diagnosis until I met some Liver Mums myself.

What great PERSPECTIVE we've been able to gain because of London. How lucky our little family has been to travel on this road. Sick child or not, and hopefully NOT- Perspective in all our lives is what we need to get through it happily. Figure out whats MOST important to you and yours, then focus. We have and it helps.

xoxo

lizzie

Alpha-1, Liver Mum

A day in the life of Lus and Lyds

2010-04-07T21:01:00.000-07:00

Last bath with Bro-V. Will not miss our non-fun baths because of it. Soon LuLu and Jones can splash in the tub together, as little brothers and sisters should. It will be a momentous occassion.

Last picture of Lu with this flashy accessory. Here Daddy is saying goodbye for what we hope will be her last surgery EVER. Note to LuLu: this means no tonsils out, no horrible accidents-let's not even do stiches, no liver related re-do's and definitely never any elective surgery. Your MuM has worried enough about you for a few lifetimes.

After London was "out like a light" LITERALLY she was on one second and out the next, we went up to visit Lydia's family and bring them some well deserved comfort food in the waiting room. Even though we were meeting her Daddy Brian and her Grandparents for the first time, it felt like seeing family. They had to say two very tough see-ya-in-a-whiles today, here we found them shortly after Mum Jeanene's surgery began.... Little Lyds was tired, hungry and obviously uncomfortable-she was in great need of a new liver. :( She was on deck for a few hours- hangin' tough in the waiting room where the waiting would soon begin for her as well.

When we were paged overhead we rushed down to find a LIVELY Lu, chucking Cheerios, sipping juice, keeping several nurses entertained and busy. She was not one bit groggy, it was like she'd just slept all Winter and was ready for Spring. In actuality it was no more than an hour later. It always feels good to have her back in my arms where she fits so well. As soon as she was done being observed and vitals were good we took her up to say ta-ta to Lyds and let her family see what they can look forward to in a couple of months for Lydia.

I am delighed to say this family has a spectacular support system. Jeanene is one of 10 kids. Need I say more?

Lu nearly dove out of her wheelchair to get to Lydia...Sweet little liver sisters, they are. My mom joked that all these little girls should be college roommates one day. Never know.... Other MuM's: Barnums (my maiden)/Badgers are Utes through and through FYI

Dear Mr. White Bear,

Please make my little friend Lyds happy, if only for a moment today.

Sincerely...yours truly...my warmest regards,

London Kate Badger

Mission Accomplished.

All is well with MuM and Babe...See http://www.lydiasliverstory.blogspot.com/ for her Daddy's updates of today. YOU ARE A ROCKSTAR BRIAN!!!!!!!

Prayers, thoughts & well wishes Please.

2010-04-06T16:19:00.000-07:00

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

2010-04-05T20:39:00.000-07:00

"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

2010-04-04T17:22:00.000-07:00

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

2010-04-04T15:20:00.000-07:00

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

2010-04-03T21:13:00.001-07:00

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

2010-04-01T22:01:00.000-07:00

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

2010-04-01T21:37:00.001-07:00

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.

Happy Birthday Daddy!

2010-03-26T13:02:00.001-07:00

Dearest Dad,

You are the BEST Daddy ever! You work hard, play hard and love with all your heart. You sacrifice so much for us and we appreciate you! Mum loves you so much and says you are her very best friend. We are lucky to say we all belong together.

HAPPY 29th BIRTHDAY!!

Love,

LuLu and Jones

True Beauty

2010-03-23T16:28:00.000-07:00

Thanks for the bows Rex girls!! I wear them allll the time!

Thanks for the hairy DNA MuM and Dad.
*****

I'm exhausted from living in a world where people are judged so harshly because of what they look like. Some of the most beautiful people are ugly on the inside-yet valued so highly by the public. Others, by the "worlds" standards may be overlooked, missed, looked down on...but are so incredibly beautiful- the only kind of beauty that really matters.

Before my first date with Mr. Badger I was incredibly worried, maybe even obsessed with my weight and appearance. James, without knowing helped save me from that incredibly shallow place I was in. He cared more about what was on the inside than out and my healing naturally began. I know he thought I was cute...or whatever and I definitely thought he was the most gorgeous thing I'd ever seen, but our relationship was anything but superficial from day one. My Mr. Right combined with a great book my friend Miranda recommended called "The 10 Step No Diet Fitness Plan" (look for it on Amazon for a penny plus shipping) flipped a switch in my brain and I have been free from diets, crazy work-outs and a sick obsession with weight ever since. I am lucky to live with a man who really loves me-for-me. If I was burned, he'd still love me, if I was crippled, he'd still love ME, we'd be as happy together as we are now. He loves all that is ME for that I sleep well at night (unless I'm in the hospital with Lu). :)

I promised myself a long time ago I wouldn't have children until my demons with body image were won. Jonah came a bit earlier than we planned for (years earlier, to be exact) but I was grateful/relieved that he was a boy. I didn't want a little girl until I could be the example I wanted to be. I wanted to teach her by how I lived, what kind of beauty to be her priority. And well before we tried getting pregnant again- I felt more than ready.

Not to say I don't enjoy shopping, a pedicure or a bottle of self tanner (I'm way pasty without it) but how I look is NOT a top priority of mine anymore and I hope it wont be hers, EVER. It is self defeating, shallow and depressing because when that is what's most important in ones life, you'll never feel "good" enough. Striving for perfection is impossible and all consuming. It is a disease.

I lived it for a time.

Of course all Mums think their children are beautiful, they should and I do. They are. London's...eyes, that hair, her million dollar gummy smile-all so delicious, but without a good heart which I know she has- it means absolutely nothing. I will praise her for being sweet, being smart, being funny...not for being beautiful. I want her to be a girl, a woman of substance.

I believe in Heaven. And I know it will not matter one bit there what we looked like on Earth-we will be seen for our hearts, our inner beauty and it will be what we did with our lives on Earth that will make us "beautiful" in others eyes, God's most importantly.

I will not buy magazines printing about someones weight loss or another persons weight gain, best/worst beach bodies, crash diets, how the celebrities did it etc. etc. I will not give that my money, my time or my attention. London will not ever hear me complain about weight or wrinkles. She will see me respect and admire those who act decently, treat others kindly and serve without expecting anything in return.

I feel more confident when my focus is on my inner beauty, what I'm doing with my life-and not what I look like. We live in a scary world and if a Mum isn't setting a healthy example for her children (boys too), who will? A BIG thanks to my own Mum for not ever letting me hear her say she was "fat" or complain about her appearance when I was young and so easily influenced. She does complain now and I get mad at her. She is crazy beautiful inside and out. She's the best woman I know. I pray LuLu will be beautiful from the inside out...

xoxo

lizzie

alpha-1, liver mum

As Dorothy would say- there's no place like home

2010-03-21T10:16:00.000-07:00

"4th and final day,I'm going home!!"

Baby behind bars

A visit from Bubby

We came home Friday afternoon and it's been nothing but a whirlwind since. It's always good to come home but hard to get caught up. The house doesn't clean itself. Bills keep coming, food rots, dogs that are deprived of their master get board...and naughty.

I don't come home well rested, because it's nearly impossible to get any sleep when we are admitted to the hospital. So that means I am emotionally drained cause I've held it together for so long as I've needed to be it 4 days or 24... I miss my James terribly while I'm there because he is so busy working and caring for Jonah that his visits have to be relatively brief. Our thanks to Grandmums and others that help with Jones too...

Just to make things more interesting this week, I slept wrong the first night in the hospital because I woke up and was unable to use my right hand...and haven't been able to use it much since. I was diagnosed with Radial Nerve Palsy which is just a fancy way of saying a pinched nerve. So now with physical therapy and a sweet brace I'm on my way to a short, full recovery. I'm no good without 2 hands that work, 2 kids require a bare minimum of 2 hands.

LuLu is doing well. We are giving her the IV antibiotics 3 times a day. It feels like much more work than it sounds. It is a sterile procedure which is anxiety provoking and time consuming. We have to start them at 9, noon and 1 am and it takes 70minutes each time time. So instead of going to bed for an hour or 2 one of us stays up til the 1 AM dose to start it...then instead of going back to bed for an hour and 10 minutes and being more disoriented and possibly slipping up on the "sterile-ness" of it all, it makes more sense to wait. Tiring-yes. Would I rather do this than be in the hospital for 14 days more days-you betcha.

I do try to stay positive for as long as I can and as much as I can. It's easier to smile and say I'm fine than give someone a sob story. But, I'd be a liar not to admit that sometimes our life has felt like more than we can handle. That sometimes I just cry and want a break from hospitals and worry. I wonder when will we not feel so upside down and inside out? Pulled in so many directions. Soon, I hope. I'm tired, worn down and burnt out at times. I'm not complaining...I'm just on my way to making a point. Would I have it any other way?- No, because that would mean either London would not have made it or we would NOT have had a year full of hard but rich experiences nor met many wonderful people that we love so dearly.

I'll say it now. I wouldn't have survived losing her. My heart would still beat because I have Jonah and James to live for but I would feel dead inside. My heart is ever so heavy for Mums and Dads that have lost a child. So, I do feel lucky I am ABLE to do all we "do," cause LuLu is here with us. I'm not writing this for ANY sympathy or any praise. So please...no comments of sympathy on me or praise for me. I'm writing this cause I hope that others going through difficult times similar to ours don't feel abnormal if they feel like giving up at times. Or, can't smile for another second. Or, just cant bring themselves to returning phone calls or cleaning their houses or not wanting to get out of bed in the morning. Been there, done that...

I did want to be really private about "this" because I think at the time I was a little ashamed or embarrassed. But since our life has been very un-private this last year as I've been open to sharing our journey with anyone that wanted to come along-I feel it fair to share "this" too.

I am lucky to have an uncle who is so good to me in every way. He always has been, I've been spoiled by him (them) for as long as I can remember. I've never in my life needed any help from him "professionally," until last year. He is a psychiatrist, a very good one at that. I didn't think I was clinically depressed or had anxiety (who was I kidding?)...I just needed to keep pushing through, all things come to an end eventually, right? (side note: he treated Heather Armstrong, a local, famous Bloggy Mum--she sings him praises in her book about fighting depression--I read my uncles "signed" copy a few months ago :))

Needless to say I started an anti-depressant several months ago. It has helped. I didn't think I needed them, definitely didn't want them, felt like if I started taking them that would mean I lost and everything that we were fighting won. I thought it would make me feel like I wasn't strong enough to get through all that was/is our life. My uncle helped me to realize it was my strength of character that had gotten me thus far and....I surrendered, quickly. I feel no shame in taking them and would encourage people that need to seek a little help--to do so. (despite what Tom Cruise might think...) Whether it's for a temporary time like myself or life long for those who battle chronic depression or other problems, it takes a big person to be open to getting to the bottom of it. I am waiting a few more weeks until we are moved and settled then I will start getting off of them. I will say I am grateful for a glimpse of what depression feels like, I am a different type of empathetic for others who struggle-battle-fight it daily. When you are doing all you can--and it's still not feeling better, ask for help. NO SHAME IN IT. (Since posting this I've had a few friends email me with more questions...feel free to do so in confidence if you want to- elizabethbarnum@hotmail.com)

I must also say when life has felt the roughest reaching out to someone else in need has saved me. My family is first, James, London and Jonah's needs always met. But in order to HELP ME, getting outside of my own problems has made me better and helped me deal with my own life. Service is a great remedy for most all problems or at least puts your own troubles into perspective. Try it. You'll like it. (...as DJ Lance from Yo Gabba Gabba would say. :))

xoxo

lizzie

(an often times frazzled-trying to keep it all together, yet always grateful) Alpha-1, Liver Mum

Day 3

2010-03-18T14:02:00.000-07:00

Cutest alarm clock, EVER.

" MuM, do my hair. I find it a bit embarassing."

Music Therapy, so much fun! She loved it....

...as you can see.

"...This little light of mine.....,I'm gunna let it shine....." a new favorite for us.

"Bath Time!! Finally you are doing something about this mop!"

"My new friend, Ali" (All-EEE)

London has continued to improve and the plan is to be released tomorrow. YAY. I have so much laundry...cleaning...packing...etc. etc. to do and it's just ALWAYS good to go HOME.

The plan had been to take Jonah to Disneyland this Sunday with our friends Cade, Leslie and their kiddos. We were going to leave LuLu in very capable hands while we soaked up some one-on-one with Jonah, since he really hasn't had any of that this last year or been to Disney ever. (may be (is) due to mine and James' lack of liking Disneyland, I know we must be evil) But, Jones will LOVE it-he deserves it, and the Smiths were gracious enough to let us tag along. It seemed like great timing when we planned it but as we know "things come up."

With London's hospital stay we felt like one of us should stay back. Naturally, James volunteered because he's awesome and Leslie has been a BF for 25 years....so my sister Julia is going in his stead (everything has been paid for, Jones has been counting down the days) and bringing her little Noah along too, they are both in need of some R & R.

London will go home with a 14 day IV antibiotic and then we will have her broviack removed. (sigh of relief) One less thing to be ultra-paranoid about. The only downside is being poked each week for blood draws rather than the ease of the central line...but I'll (she'll) take it. She's tough. She can handle a few needles. The risk for infection is so high with central lines. She will be so happy to start taking baths with her brother and not having to avoid getting her chest wet. Picturing the two of them splashing in the tub together is so normal for most Mums but a huge, enormous victory for us.

Today we had a few visitors. Aunt MJ came by, PaPa and Officer Hayes, Abdul and his son Ali (11). They came down from Idaho for a follow up appointment for Abdul's brain surgery. They brought her some wonderful gifts that she'll love so much! Daddy and Jonah will come up later this evening. Even though she can't say it- I know LuLu misses her buddy.

A better day

2010-03-17T10:15:00.000-07:00

Lemme out!

Zoomin.......

Eating AND keeping it down. :) (above pics are from this morning)

Auntie Mary Jane

Last night (above)she couldn't keep her head up, today--a million times better. I can't keep up with her...that's the way we like it.

After MANY tests, some results still outstanding...it has been determined she has an infection in her line that goes near her heart. SO, no one needs to feel guilty (myself included) of who might have given her what. They have been hitting her hard with antibiotics since we arrived and they have definitely helped. She is back to herself this morning. Cruising around our room in her walker, wanting to get out of her tight quarters. Which we can't because we are on the immunocomprimised unit. No one is really allowed out to prevent spreading anything to anyone else that is also immunosuppressed. Totally understandable, but makes for a little cabin fever.

They are running more labs and waiting to determine what kind of organism it is. This will determine whether they pull the line out, treat it with more antibiotics etc. etc. So for now, we feel lucky that this hospitalization isn't because of "liver" problems, per say. She'll fight this and we will be back to life as usual, hopefully home by the weekend. Cheers to LuLu for her sweet, fighting spirit God blessed her with.

P.S. Happy St. Patty's Day. Another, luckily less important holiday spent in the hospital. Didn't know it was today til a volunteer brought me a pot of gold (chocolate) that I've been eating for breakfast. Luckily, I packed a green shirt so LuLu isn't allowed to pinch me...or I'll pinch her back, really hard. (wink, wink) That's how this holiday works, right? She has no green, but I'll spare her this year.