My dear friend Abdul

Abdul, myself and sweet, sweet Saja. The search is on for Strawberry Shortcake in Arabic. Anyone got one? ;)

Luly waving Goodbye for now to Saja as we were transfered to the Immuno Comprimised Unit this afternoon.

The Iraqi man I mentioned before became my friend when I shook his hand and we've just become better friends everyday. He is accompanied by a beautiful, wonderful American soldier who has spent countless days here at the hospital by his daughter Saja's bedside. I'll call her St. T. She is a second mother to all his 6 children, they love her dearly. She has done 3 tours of duty in Iraq. She is such a hero on so many levels. And that is all I will say about her. :) Another hero in their story is Warrant Officer Russel Hayes of Idaho. He, being a father of a Little Person made it his mission with the help of Matt Roloff (Little People, Big World. TLC) to get this family out of Iraq and provide their 3 dwarf children with life saving surgeries as well as Abdul with his brain surgery around the corner. It would not have been detected without the intuition of Warrant Officer Hayes.

As I said before, Abdul speaks very little English and Arabic interpreters are only sent for important care meetings with Doctors and other experts. St. T doesn't speak Arabic although Abdul's children speak English very well, thanks to her. I know first hand as I spoke with 3 of them on the phone yesterday. So needless to say, it must be very hard for Abdul to have no one to talk to, no one to fully communicate with.

James and I put our heads together and thought...."who do we know that speaks Arabic?" Most Utahans would probably not know anyone but LUCKILY we do. One of James' clients and now a friend named Waleed is from the Middle East. With excitement we called him and within hours 2 Iraqi consulates were at the hospital meeting with Abdul. VICTORY! He now has visitors everyday. Tonight he will be dining on authentic Iraqi food and speaking in his own tongue to people that are familiar with him, his beliefs and culture. He's been surrounded. He deserves everything good that can come his way. Religious leaders will be meeting with him soon and allow the means for him to worship as he pleases.

This man is also a Hero. In Iraq he was asked by Al-Qaeda to help with their terrorism against American soldiers. He declined. They then offered him money. Declined again. Then they put him on a death list. He was able to find refuge for him and his family in a green zone, his nephew not being as lucky. Tortured and killed by AL-Qaeda for his non-cooperation. They were granted visas under the Specail Immigrant Program to the amazing US of A. His daughter Saja has made improvements in the last 24 hours. Please pray for her and his family as you all have for my LuLu and ours. Please take the time to look at the links below to get to know Abdul and his precious family better. Saja is now LuLu's first Little Friend, but hopefully not her last.

http://www.dwarfchildren.org/

www.facebook.com/pages/International-Dwarf-Advocacy-Association/239523298386?v=wall

http://tlc.discovery.com/videos/little-people-big-world-meet-the-iraqi-family.html

Define: LuLu

She's baaaaaaaaack! Smiley, happy, giggly, lovely, bright eyed, full of life.

Little LuLu riding Little Cookie, courtesy of Auntie Mary Jane.

Killin' me.

lu·lu (loo-loo)
noun.

Slang
A remarkable person, object, or idea

spot on!

xoxo

Liver MuM

MY WEEK IN REVIEW

*This week my child's life was preserved with a perfect pink liver.

*This week another child died in order for that to happen.

*This week her mother and I got to cry in each others arms and told the other thank you, I love you.

*This week I've met MANY amazing people who have humbled me, changed me. Y'all know who you are.

*This week I am more grateful than ever for my life, for everything we've endured this last year.I wouldn't change it, other than taking the suffering away from my Lu.

*This week I laughed with great friends til I cried and felt so lucky to be surrounded by amazing friends and family (one-in-the-same) ALL the time.

*This week I chatted with a Mum and Dad while their 6 year old was undergoing his 20th back surgery which most definitely wont be his last.

*This week I chatted with a Mum who's little boy has endured 2 open heart surgeries and is hoping and praying to avoid a transplant.

*This week I held the hand of an Iraqi man named Abdul who speaks little, almost zero English. I could feel the overwhelming goodness of him just by looking at him and standing before him. His daughter is not doing well to say the least and has found out he has a brain tumor that will be operated on in the coming weeks, while his little girl is hopefully still hanging on in the PICU. 3 out of his 6 children are Little People. The country of Iraq, not able to provide any medical care they all have all desperately needed. Bless Him, Bless His family.

*This week we've added another dog to our family that didn't have a home before but deserves a good one. (this is news to our MuM's and Dad's--Surprise!) She belongs with us. She shall be called RAMSI. (named after my BF that doesn't like dogs :))I've taught her to sit and shake today and to stop clobbering me and jumping on me. We are so in love.

*This week I met another MuM and Dad who's 10 week old girl just had intestinal surgery, she was about the same age LuLu was when we found out she'd have a very long uncertain road ahead. She actually looked a bit like LuLu, BIG bow on her head and all.

*This week I was invited to help and attend a Birthday Party/Benefit Fundraiser for my sister-in-laws friend MILO who has stage 3a testicular cancer. Please contact me if you have goods or services you'd like to donate to his silent auction. elizabethbarnum@hotmail.com it is the 10th of February. He deserves all the help we can give. FIGHTING a TOUGH FIGHT.

*This week a random man in the hospital asked James if he knew where he needed to go to donate a kidney. I happen to be talking with my friend Jill at the moment who works in the Pediatric Kidney Transplant program. She knew the number he needed to first call by heart. I high-fived this man who many, maybe myself included (but I hope not) would have judged him a bit by his appearance. Never, never judge a book by it's cover. By the time we were done chatting I was hugging him, thanking him for what he would be doing for another person. A complete stranger to him. What an amazing, incredible man. (he had a bag packed, like he was ready to do it that moment-the screening though, being a rather long process with formal beginnings) Come to find out he has a very rare blood type--Jill saying with excitement "We need your kidney!" We need his blood. That was a divine run-in. MADE MY DAY.

*This week my heart has been broken for every Haitian. Feelings of guilt that we are receiving such amazing treatment and so many others aren't.

*This week, the same as every week I see children with cancer and am humbled thinking our road could be harder than it is.

*This week I've had correspondence with a sweet, young MuM who lost her baby in December. Angel Kenz was a donor and most definitely saved lives. I think her MuM will become a good friend of mine.

* LuLu's blog has been viewed over 20,000 times in the last month. I think she'll have saved some lives somewhere down the road. It's been viewed all over America, in Italy, Switzerland, Australia, South Africa, Canada, Portugal, the UK, China, Singapore, India, Malaysia, Belgum and Germany. How connected we all are... never could we have imagined delivering our journey to so many.

*This morning London came off her ventilator and is in much better spirits, sitting up laughing with her Dad as I type.

***I feel really lucky to be Jonah & London's MuM, THIS WEEK has most definitely made me a better human, a better parent****

That was just this week and not really the half of it. More to come on that...

xoxo
Liver MuM

Organ Donation Facts and Fiction - Be a Donor............(pretty please)

http://organdonor.gov/donor/index.htm (Facts & Fiction, Please read)

http://organdonor.gov/donor/index.htm

(How to become a donor, Please do-that's a plead)

Lulu Continues to do well, all things considered...we are hoping to take her off the ventilator sometime this afternoon. There is much crying, wincing and pain-arms tied to the bed so she doesn't pull out her tubes. Because of the ventilator she doesn't make a peep. Complete silence, her eyes telling me exactly how she feels. It's like the stereo-typical nightmare where you are trying to scream but can't.

They are doing a wonderful job in the PICU, have loved all the staff. Miss our girls on the 3rd and 4th floors though. We made some great relationships with nurses and techs. Sadly we will never return there as she will now always be on the ICS. (Immuno Compromised Services) Where no doubt we will be regulars and make new friends. LuLu is quite easy to fall in love with as are all ill children.

xoxo

Liver MuM

See you later Alligator 7:30 AM

"Nay"

Riding her horse! Giddy up!

Last smile-for-awhile

Dr. Meyers, pre-scrubbed.

Mom, pre-teeth brushed- for real. Gross.

I sent Lulu into surgery again this morning. This time with so much comfort and peace. She had her woobie that was made by a lovely neighbor of mine as well as a horse stuffed animal that she has REALLY taken a liking to. We'll call her Cookie. She loved it so much that when I gave it to her yesterday her attentive nurse Beau rushed into the room to make sure she was okay as he had seen a major spike in her heart rate for a moment. We discovered it's just because she loves horses.

Lulu and I chatted for a bit in the OR waiting room. I sang her goofy songs about having a happy liver. I have a very bad voice, she's the only one that doesn't mind it. Jonah politely asks me to stop singing to him.

We got more serious and I assured her that Angels would be with her when I had to leave her side. Her Head Angel leading the others. I told her Pa and Georgie would be around as well as her other "Greats." Our dear friends Bridger, Kate, Den-boy and cousin Carly would be hovering too. Sophie Peanut and Sadie Lady running a muck below her gurney. Those are our barking Angels. They will all be surrounding her all making it easier for her and me.

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

and waaa-laaa, like magic. We are done. Dr. Meyers has waved her wand. She just came out to tell me everything was PERFECT. That's not a word I hear often. She was glowing when she was telling me. They were able to completely close her, (VICTORY is OURS!) place her broviack (sp?) which is just like her PICC but placed in a different vein on her chest as well as a new line on the other side of her neck.

She said her liver is so soft, pink and beautiful.( i don't know if she actually said beautiful to me, but that is what I heard) Usually they would do a biopsy of the liver at this point but she opted not to because of the sheer visual perfection of it. She also said she has a "happy liver"! Sigh, my song must have helped..

xoxo

A very happy Liver MuM

Here we go... (posted by Aunt Julia)

...More surgery for LuLu in the morning. They will be closing her up internally and implanting her PICC line-thingy (Lizzie you can edit this later with the technical name...) into her heart. After transplanting her liver, the surgeons left her ab muscles separated and just did some minor stitching on her skin to close the incisions. This allowed room in her chest cavity for swelling to take place.

Jonah got to spend time with Mommy and Daddy today, and last I heard, he was feeling pretty miserable with a fever, etc.

I should probably mention that LuLu's doctor ordered no visitors for the immediate future. Her immune system is compromised and she's hard-pressed to get more rest so her precious little body can heal. Once LuLu gets stronger, maybe her doctor will lift the no-visitor rule.

Thank you to everyone for your overwhelming support and love!

xoxoxo

Julia

I held my baby today

It's almost been a week since LuLu's been in my arms. I can't help but think it has been a week since our Angel's parents held their baby girl in theirs, for the last time. In this life, I mean. We are so eternally thankful for the bond we will have through our London to the most amazing girl that's ever lived. I am so in LOVE with this child, she really made this world a better place because she was simply in it. In the coming days I'll be able to share more about Her, Her family, our experiences and just how bitter sweet life and death have been for us. Through a series of divine circumstances we've been able to connect so much sooner than the norm which has indeed been orchestrated by God for Us and for Them. We are seeking an expedited confirmation of identities, but I really don't need it, I know who our Angel is.

I am so grateful to her gracious family that I am still able to hold my baby close to me yet so sad they can't do the same. I'll enjoy every minute she spends in my arms now and hopefully for years and years and years to come-until she just wont have it anymore. What I will always remember is that none of us are guaranteed tomorrow. So I will always live my life that way and whenever I need a reminder I have a major one right under my nose. Lulu's liver.

London goes in for her closure surgery tomorrow morning. We hope they will be able to accomplish this completely. Otherwise we will have another surgery in several months to do so.

I was told by Dr. Meyers tonight that she will feel worse and seem sicker following more so than after transplant. So thank goodness for pain medication when they are really needed. Continued prayers please.

This last week has been the hardest yet. It has been heart wrenching for many reasons. It has been intense. It has been happy, sad and every emotion in between. It has definitely been the most sacred week of my life and I have many people to thank for the miracle of London being alive.

xoxo

Liver MuM