Saturday, November 27, 2010

Guest Post

A short introduction :)

Hi. My name is Vicki and Amy is graciously letting me do a guest post on Livi's blog. I met Amy in a natural childbirth group when she was pregnant with Livi about three years ago. I feel so incredibly blessed to have found a great friend in Amy. I started learning photography a couple years ago and her feedback and encouragement has been invaluable to me, so much so, that I started my own business. She has this great ability to showcase people's hearts in her photographs and I am sure many of you who are clients know of this talent. I am lucky now that Amy and I have gotten closer and she is one of my best friends. I will do anything I can to help her and her family.

So I am writing to everyone tonight because I want to let you know how you can help the Price family. We all are hoping and praying for a miracle, but we also need to understand the realities of the situation. Amy isn't doing many sessions now so she can be with Liviana. Her income is a large part of the Price family's cash flow. Without it, they cannot pay for basic necessities, not to mention Liviana's supplements, which will hopefully slow the progression of this devastating disorder.

Please don't get me wrong. This is not a guilt-trip. This is a plea for help. A plea to allow this family to spend their days together without having to worry about whether or not they will have heat through the winter. Without worrying about what they will eat. And without worrying about how they will need to pay for a funeral. It would mean so much to me if you could sacrifice your morning coffee or buying the newspaper for a few weeks and instead, give to this family in need. If you are a client, try and buy an extra canvas or other product.

Here is an easy place to donate

If you cannot help financially and live nearby, instead of saying, "I'll help you with whatever you need" or the like, perhaps offer to cook them all a meal and bring it over or maybe even clean her bathrooms. :) If you are not nearby, pass the information about Liviana around to all your friends. The least we can all do is bring awareness of this terrible disorder to those like myself who had never even heard of it prior to Liviana being diagnosed.

Let's help this beautiful angel and her family.

Tuesday, November 23, 2010

The Front

If I smile, laugh and seem to be enjoying myself, it is a front. While I am human and completely capable of enjoyment despite what we are facing, I feel pain down deep into the core of me all the the time. I feel guilt when I enjoy myself, fear when I see Livi's unsteadiness and overwhelming sadness when I see clothes in her closet that I had been setting aside from Aria that she may never wear. Walking through TJMaxx and seeing clothes and thinking, "This would be cute for Liviana" and then realizing, "Oh...she may not even get to wear that size, or make it to that season" was more than I could handle yesterday.

I really feel like I am an empty shell going from room to room, task to task. I love my time with the kids, they still make me smile and happy but for the absolute love of all that is can I possibly live for one minute of any day without thinking of losing my baby. I cry, when I am alone, at the fleeting thought of our days without Liviana. She is part of us. We love her, we laugh with her, we imitate her saying "alright" in her funny, sweet little voice.

It really is such a deep, deep pain. I don't know what we are facing either, which makes it worse. I can handle the physical deficits. I will be by her side for every feeding, walk across a room...anything she needs. I am overcome with fear however about mental decline. I don't know how I will handle Livi not being "all there" mentally. I want her to know love every minute of her day and I am fearful that she won't be able to feel that love as she mentally declines.

I want to tell everyone I see about her, despite me being a somewhat private person. I want everyone to know that amazing face, those big eyes and those long, dark lashes. I want everyone to hear her sweet voice, see her kindness and how she takes care of her little brother and watch her grow. How, how, how can we possibly live without her. I want to scream as loud as I can, "This isn't F------ fair". I am wasting away inside as I wait for what comes next and live this nightmare for Liviana. I would give anything and everything for her as long as I could still be a mother to my kids. I have actually thought that if I could give my legs and just be a half a person I would still be able to mother them, hug and love them and she would still be here.

Blah...dinner is waiting thanks to some amazing, wonderful people from our church. I don't know what we would do without all of the people in our lives, whether they have known us for years and years, are family, are long lost friends or our new family at church. No parent should have to go through this and I would give anything in the world for Liviana to not have to go through this.

Thank you from the bottom of my heart for all of you.

Sunday, November 21, 2010

Another Journey, Another Fight

I always felt bad that I didn't keep Liviana's blog updated. She was doing great though and part of me was happy to not have to update on medical issues.

I am saddened beyond sadness however to make this newest update and begin a new journey and fight in Liviana's life.

At this time, I am not going to recap the slow, progressive decline that led us to this new diagnosis. I likely will throughout upcoming posts but I told the same story about 10 times in the hospital this week and don't have it in me to go through it again.

Liviana has been diagnosed with a rare genetic disorder called Leukodystrophy. There are 2 dozen types of LD and we are awaiting tests to determine what type she has. The hard part....LD is not treatable. It is a progressive, degenerative brain disease. She is basically losing the white matter on her brain. I am sure I will talk in more detail about LD later but that is the basics for now.

Livi has significant gross and now, fine motor skill deficits. She has difficulty walking, although she surprises us at the end of the day with a mini-rebound of sorts. She has balance and coordination issues and hand tremors. She has lost her gag reflex and is on thickened liquids to prevent further aspiration (which a swallow test revealed) into her lungs.

She is still so so beautiful, funny, witty and a ray of sunshine wherever she goes.
She is surrounded by love and we will do all we can possibly do for her.

This is short and sweet. Her blog will become active again so there will be more updates. I am overwhelmingly fearful, in denial that my daughter will not be here one day and hoping that the doctors are wrong, although that is 99.9% not possible at this point.

I welcome all of the research warriors out there to search out information on Leukodystrophy. She does not have ADL, which only effects boys. They believe she may have one of a few types...the two they mentioned were Metachromatic and Krabbe's Disease. At this point her EEG looked normal and she her optic nerve looks great. There is experimental gene therapy being done in Europe for Metachromatic LD.

That is all for now. When I have a chance I will update her photos on the blog. She is an amazing beauty, inside and out.

Thank you to everyone for your support and love. It keeps us going!