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!
Recovery Mode!!
3 months ago
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14 comments:
Dear Amy, Brad and family...
I have no words to express my feelings towards this. I know we haven't even met in person, but you Amy, are a very special person to me since we share so many things in common, like this journey through CDH and the love to photography...
I think of Livi every day, several times a day and I pray the Lord for a miracle for your baby.
You are not alone and you are truly loved by so many people, including me.
I want to give you a call but I don't have your phone numbre. When you have the time and only if you want to, can you send it to me please?
Love!
Fer
The whole Price family holds a special place in my heart. Though we've never met, I feel like I know you through your posts and photos and comments. You've shared your family with so many of us and now we share your fear, worry and other emotions.
I cannot say that I know what you're going through. I cannot say there is anyone on Earth who understands, but I'm looking. In the meantime, I understand the fight with CDH, developmental issues and therapies because of Shane. And I understand the deterioration and fight and worry of watching someone you love struggle because of 2 years of helping nursing my sister as she fought Rhabdomyosarcoma (a very rare bone cancer with no survival rate). If you want to talk, cry, scream, bounce ideas, anything.... I'm here. And I'll pray as hard for Livi as I pray for my own kids.
Love, hugs, prayers,
Dawn
Amy, our thoughts, prayers and best wishes are with you and your family. I am s sorry that you are going through this and amazed at your bravery and outlook. Livi is an angel and a blessing.
All our love,
The Cunninghams
Amy, your heartache is felt thousands of miles away here in Washington. I cry for you, I die a little inside for you. But I also pray for you. Every hour of everyday, I have prayed for you and your family. You all are so loved, you will never be alone through this. Stay strong mama. You're such an amazing mother!
I spent the morning that I found out crying, so I can't even wrap my mind around what you as parents must be feeling, and the dark places your minds must travel. But, you've always been an advocate for that precious girl, and it is her luck that she was born to parents who are so capable in so many ways. What can I do at this point? I hope you open an account, or someone does so on your behalf. I know many of us just feel helpless, and financial help is the only thing I can do at this point, since I am so far away. I know you'll both be missing work, and she'll have medical bills, and soooo many other things. So, please let me know if there is a paypal account or something.
I just read up on MLD and it really sounds like what you have described. It seems they are doing some stem cell studies and bone marrow? That is a light, a little hope in the darkness. I spent my minutes asking "why?" and then "why her?" because she has already been through SOOOO much. What are the chances? Then I spent the rest of my time thinking "well, what the heck can be done about it?" You have a lot of support, and people who will do anything we can to help you and Livi in this fight. Reach out....
----Kara G.
Thanks for the update Amy. I will be following Livi's fight closely and continuing to pray for your amazing and beautiful little girl. She's surrounded by love and has proven time and again what a strong, special little girl she is. Please let me know if I can help in any way!
Love and Prayers,
Jen
Amy, you're right. Livi's inner beauty shines through those gorgeous eyes. I am still holding out for a miracle. I'm experiencing some denial too. I can't wait to see her and hold her. My thoughts wonder to all of you several times in an hour and when they do, I send up a prayer. I love all of you so much and wish I could be there to hold your hands. Hold each other close and give my beautiful niece a hug for me.
Oh, Amy, I'm so sorry you're going through this. I think about Livi a lot. My heart aches for you all. I've loved seeing her grow these last couple years. You and your family continue to be in my thoughts.
Love you,
Lux (Brittany)
I am another CDH momma who has followed your beautiful daughter's story and I will pray, and hope, and believe that there will be treatment and advances that will help her and I know, just from reading your blog, that she will continue to lead a life full of love and happiness.
Hugs!!!!!!!!
Jennifer
Mom to Dakota 12-25-2008
RCDH Survivor
Amy--thanks for sharing your new journey and fight with us. Livi is loved and the Price family cared for by people all over who all want to help in whatever way we can. Prayer is a powerful thing and I know that many are going up on her behalf. My thoughts are with you daily. Kristyn
My heart is breaking for you. My family is praying for yours and the best possible outcome.
Amy I am so sorry,You were one of the people there for me checking in on me when we thought Glenn had cancer and I can only hope I can give you half the comfort you gave to me, please if you need anyhing call me, your family is in our nightly prayers, You are an amazing mom and it pains me that this is happening to such a beautiful family and such a beautiful child, I pray for your families continued strength and unity
I have been thinking about you and your family a lot. Words can't express how I feel, just know that we love you and are thinking of you guys, and praying. Livi is a miracle and such a little fighter. I can picture her sweet face right now. Amy you are such a great mother and such an inspiration to others. If there is anything you need, please ask. We are here for you. And you will remain in our prayers. Give Livi lots of hugs and kisses from KC.
Amy
Dear Amy & Brad - I am so sorry to hear about Liviana. My heart and prayers go out to you and your family. She has proven to be an extraordinary young girl & is a champion! That will never change! God bless you all throughout this journey.
Karen Dear (Kinley's Great-Aunt)
Elk River, MN
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