Monday, January 4, 2010

Angels here, angels there, angels everywhere

This beautiful, custom piece of art was made by my friend Ally Christensen. It is Miss Lu asleep in her crib (double click to see her big bow and all the delightful details) with two beautiful angles watching over her. I know there are many surrounding her at all times and even closer to the family who will lose their loved one and allow for London's life to carry on. We are grateful for Gods angels we can't see but feel. We are as grateful for the others....friends, family, strangers, doctors and nurses have all been angels on Earth.
Ally can make anything and is working on her website right now, she can be contacted @ she has done some amazing stuff, I'm so proud of her and wish her luck in this new venture.

It was a party at clinic today. Both her liver BFF's were there and we were able to take quick pictures and give heartfelt hugs. I love these girls mothers. They are just GOOD people, I find comfort in them and knowing we share an uncommon bond. This is Eden, you can tell by her beautiful scar that she is post transplant. Her warrior Mum was able to donate a segment of her liver to her and both are doing well.

Here is Miss Lydia. This little sprite is trying to gain and grow to be big enough for her warrior Mum to donate a segment to her. I wish I could be part of this liver mum sorority, but I've accepted that I can't and wont. Lydia isn't too far behind LuLu as far as when transplant will take place...probably in the coming months.

London's tummy has increased in size, so they are adding more diuretics to the mix hoping to bring it down before more invasive measures are taken. Her team has now widened the parameters of the liver they will accept for her. The last few weeks they would only accept a full liver from someone roughly her same size, now they are open to taking a segment as well from someone older/bigger. Just to clarify, cause I know there is some confusion...her medical team will only do living donation (ex. with Uncle Jordan) when the patients points are too low on the UNOS scale to obtain a liver that way, but sick enough that they really need a transplant. i.e. London a few months ago. There is a huge deficit with livers needed vs. availability and there always will be-until we all become DONORS. Please be one. Heaven doesn't need your organs.
London sits at the very top of this list and will keep her "points" for a total of 3 months at which point her Doctor must resubmit. Her Uncle Jord spared from a serious operation, we think. Lu is next in our 4 state region to receive the soonest available liver within her blood type. So we imagine it will be soon- but who knows when. That's one of the hardest elements about this whole journey, nothing can be planned. And when there is a plan, it changes-we count on it. My heart continues to be with her future donors family. God bless them.

After our clinic visit at Primary Childrens Hospital it was off to see Dr. Owens at St. Marks for immunizations (3 that is). I remember the dread I felt taking Jonah to all his appointments when he'd get shots- small potatoes now. She is resilient beyond belief. I love her beyond belief.


Karen said...

First off, Ally's work is beautiful! I love how Lu's lottle foot is sticking out the crib rails. Adorable. I'll really be looking forward to seeing her website. Second, tears this morning for the liver babes.....oh how strong you mommies need to be for your children. God gave your babies the exact parents they needed. Funny how He does that!! God bless...BTW...I have Lulu's thank-you card on my fridge. Hugs to Jonah and Daddy.

Karen said...

...oops...forgot to edit before I sent....should say 'little' not 'lottle'.....but 'lottle' is kinda funny!So, along with the tears a giggle too. Have a great day.

Sarah said...

awwww... i'm glad LuLu got to hang with some friends today! i hope all three of them grow up hanging out at the pool in bikinis showing off their war wounds together.

Jo Lynn said...

What an incredible piece of art work and I love the bow! I'm sure that is a beautiful thing to look at these other babies and see the one who's gone through what Lulu is about to go through. Incredible survivors who are so very resilient! I hope a liver comes very soon! We love you guys, hang in there!!!!

Jamie N said...

Such little warriors - and cute ones at that. You are just as brave as little Lulu and just as resilient. I can't imagine watching your little love suffer. We continue to keep you in our prayers and are anxiously awaiting updates.

Jamie N said...

BTW, I'm calling you tonight. We have been so out of sorts this past week and are just beginning to recover.

Cydnee said...

The Sisterhood of the transplanting livers ;)!!! What cute little girls! And I LOVE that piece of art for Lulu. So cute and fun!


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