Savannah had her MRI yesterday. It basically showed what they were looking for - grey matter on the brain and some brain damage. They diagnosed her with Alpers syndrome which can affect brain and liver and can stem from a mito disorder. They basically gave us the decision to keep her on vent and prolong everything or take her off and let her go like that. There is a 50/50 chance of the other 2 getting it even though they show no signs. They wanted us to maybe wait until Monday so they talk to the doctor where we sent the muscle for testing for the mito to see if they need any additional tissue to test to try to still find answers for the mito so we know for the other children.
We will probably take her off the vent sometime next week after they do this. We would still have no certain idea of how long she would have after that- they said it could be days, weeks, or months but more than likely shorter. If anyone would like to come see her they are more than welcome. Thank you for the prayers that everyone has given the past 2 months. I know that they did help and had a lot to do with why she is still here now. Please pray for peace for the family. I worry especially about Jeff and how he will handle it. Anyone who knows him and has seen him with her knows that she was his world. From the time she was born she was always Daddy's girl. She practically slept on his chest the 1st year of her life and he did not know how to say no to her.
We will come away from this knowing that Savannah touched many lives. She loved everyone she met and had the ability to draw anyone in to love her just as much. She did not like anyone being upset or hurt and was very nurturing. She hated for anyone to be mad at her or anyone else. We know that she will be better off as she has gone through so much in her 9 years. She hardly ever complained about anything.
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I just want you all to know how much I love you and that you have been in my thoughts and in my prayers. I know that Heavenly Father is watching over Savannah and that He loves her so much. I can't imagine the pain and frustration you are going through but I do know that Heavenly Father loves us too and will bring comfort and peace to you at this time. Jeff, Jennifer, Savannah, Preston and Aimee, I love you - David
ReplyDeleteWe definitely continue to pray for Savannah and you all. From the very moment, we learned about what you all were enduring, I cannot tell you how many people, though never able to meet Savannah, have been touched by her a way none of us seem able to describe. I pray that God continues to be with you all, giving you wisdom & comfort as you continue to endure. In His Love-- Kara, Brian, & Owen Webb
ReplyDeleteJennifer - I continue to follow the blog and love the updates. I worry about you guys and all that you are going through right now, especially you. I know I get defensive about Jeff, but he's been through so much. I know that doesn't excuse his behavior and I'm sorry about that. I don't know how you've dealt with it all. Thanks again for the updates, and the photos. I love the photos. I love you all...
ReplyDeleteCandice
We all continue to pray for all of you. I love Savannah so much and we all miss her greatly at school. I miss my morning greeting and hugs. I miss getting so aggravated that I could pull my hair out :) I miss hearing, "Momma do you love me? are you mad at me? why are you mad at me?" I miss hearing her read anything I put in front of her! Most of all I will miss her bright eyes, adorable smile, and big hugs! Although Savannah often got under my skin, she made her way to my heart and she will always be there. Love you guys!
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