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 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