Fundraiser Botique for LuLu

I am EXTREMELY blessed to have the friends and family that I do. Dale, Tabitha and Amy Rex, Hallie Peay and my sister Julia have put together an amazing boutique to collaborate funds for Lulu's future medical expenses. I will be there for the whole thing, which will be amazing to see so many of you that have been such a support to us. If you have any questions or want more information you can look to Tabitha's blog- daleandtabitha.blogspot.com

Loves!
Lizzie

Be Good

Jonah was leaving with James this morning to go to the job site and I said "be good Jonah, listen to daddy" he replied "be good mommy, listen to grandma." I turned to my mom and we laughed. He is such a smart, funny boy.

BTW we are finally home from the hospital- http://www.liverforlulu.blogspot.com/ for an update

I love you too, Jonah

Jonah gave me an unsolicited kiss this morning and said, "I love you mom, lets get married in the temple today." Wherever he chooses to marry, I hope it's to a girl that loves him as much as I do.

Happy Halloween (for one, not the other)

LuLu-Ladybug-Princess-Fairy-Love

Speed Racer (Go Speed Racer, Go Speed Racer, Go Speed Racer Go...sung by Jonah many, many times a day)

Our sweet little Lulu had a not-so-Happy-Halloween, it was day 7 of 11 and counting at Primary Children's Hospital. PCMC did a great job to make it special for all the kids. Lu received a darling tutu that was made and donated by someone in case we didn't retrieve her costume for the day. They also brought her (as in ME) an awesome trick-or-treat bag full of great goodies. Almost all staff was in costume which I'm sure cheered the older kids up who were confined on this great holiday.

There are many volunteers at the hospital, they do really great things. I see them all over the place in their bright red shirts, some are young and some (very) old. They do many things from running the little gift shop to playing with kids and holding babies that don't have anyone else to hold them. I am thankful for them. I don't need them to hold my baby but they are holding someones. I painfully pass the room next to us who is one of those babies not being held by a mom, dad, grandpa or grandma. I cried for him today and wish I could hold him and love him. I'll be a volunteer one day when this is all behind us.

I'm so glad I was able to break away for the evening to be with Jones & family. (thanks to Aunt Tellie and Uncle Jordan who took shifts with London) As tradition has it we hit Nana & Papa's neighborhood for our loot. It made me happy to see how many Ute fans made it to the game, leaving big buckets of candy on their porch for the kids. "Take 2 if you are a Utah fan, 1 if you are not..." read one of the signs. James took the night shift with Lulu while I got to enjoy my bed with little Jonah-man by my side. That was the best TREAT for me, it made my Halloween happy.

JONAH

Jonah has started preschool and is loving it! Conquering his ABC's and 123's and working on not hitting the girls in his class. :) We can also check potty training off of our long list of things to do. Gee, I've never been so proud! I can only imagine how I'll feel when he graduates high school and college etc. etc. if I think being potty trained is such a big deal. Jonah is obsessed with cars right now and anything with wheels. He loves to tell me how to drive..."speed up mom, go faster!" all the while making race car noises.

He is a great brother to London and is very intuitive. He can tell you all about her feeding tube, what it does and that her liver is sick. He prays at night that she will get better and that is very touching to James and I. He likes to help administer her medicines and is very patient that she requires much of my time.

This boy is funny and witty and I am lucky he is mine...well, ours.

liver for lulu

my SWEET sister julia has started a blog to chronicle London's health, dr. appointments etc. etc. it can be found at liverforlulu.blogspot.com and between the two of us we will try to keep it fairly up to date as i am obviously not very good at keeping our family blog current. thanks for the support we feel from all of YOU. xoxo

LuLu & LeMoNs

(jacki, kathryn & chantell)

Where, oh where to begin?.....5 months ago our LuLu was diagnosed with a genetic disease called Alpha1 Antitrypsin Deficiency. Never heard of it? Us either until it became ours. In a nutshell:

Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin or AAT that is produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as pollution and tobacco smoke. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.

So, London has advanced liver disease and we just finished up our first-but-not-last hospital stay. Our goal right now is to try and "hang" on to her liver as long as possible and treat all the fun stuff that comes along with it (portal hyper tension, ascites, poor nutrition etc. etc.) since there is no treatment for liver disease other than a transplant-which is inevitable within the next year. So right now we try to fatten her up (hence the feeding tube you will notice in all her upcoming pics), get her stronger and buy some time.

James or myself hope to be a good donor match as they can take part of the left lobe that regenerates in the donor and grows in to a fully functioning liver in the recipient. Wonderful, isn't it? We continue to meet with her Doctor and amazing team weekly at Primary Children's and are SO grateful for the great care she receives. The silver lining? After getting her transplant (that WILL be successful) she will be cured of this disease and avoid damage to her lungs and the possibility of a lung transplant later in life.

We have struggled more than words can express but have faith in our Heavenly Father and all his plans for us. London is a lover and a fighter and a little angel all neatly wrapped into approximately 14 pounds and (finally) growing... I must say we are so grateful for the tremendous amount of love and support we have received-so thank you from the very bottoms of our little hearts.