Saturday, June 26, 2010

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:
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.

Monday, June 21, 2010

Ragnar Baby!!

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.

Sunday, June 13, 2010

Super Clark

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.

No news is often good news

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 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.
alpha-1, liver mum

Tuesday, June 8, 2010

Abdul & Co.

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 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.

Thursday, June 3, 2010

Liver Families Picnic

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.
alpha-1, liver mum

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