Wednesday, January 20, 2010

Just finished meeting with a team of doctors. Rachels current status is that she is intubated and heavily sedated. They tried waking her this morning but it did not go well. After reviewing her ct scan, the neurologist and neurosugeon determined that she is experiencing brainstem pressure. They believe her disease is progressing to the point where it is affecting many parts of her brain. The brainstem controls vital, involuntary functions of the body like breathing, heart regulations, etc. After meeting with the team of doctors, We have decided that this friday, the doctors will put rachels shunt back in and after the surgery, they will take her off the respirator and let her try to wake up and breathe on her own. She may not do that and if she doesn't, it's time to say goodbye. After experiencing what we have the last two weeks, we know what a miracle we have witnessed the last two years. We thank god for that. Continue to pray for all of us, that we can accept gods will. And for Rachel, that she knows only peace and comfort. She may surprise us yet and look at us and say "why are u crying, I need lipstick. And where's my blankey"?

19 comments:

  1. amy and mike I am in shock.. I am so glad I got to meet Rachel last january. I will continue to pray for a miracle and that God may hold you up.. christa

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  2. That is so heartbreaking, we're praying for you all and not giving up on a miracle that she will say those things to you on Friday....Carol Hoch

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  3. Amy and Michael We are praying for you all and hope she wakes up Friday and asks you all those questions and many many more also. Love to you all. (Bubbles)

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  5. Mike and Amy, you know our prayers and thoughts are with you and your whole family. Know that we love you and are here for you. We pray for a miraculous healing for Rachel, but we also pray for peace. We love you!

    Janise and Matt

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  6. Amy and Mike,

    I have been keeping up with Rachel for a long time via your blog. I can't even imagine what you are feeling. My prayers and tears are with you both. May God's grace sustain you and give you strength. Much love, Donna

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  7. Amy and Mike, this is Robyn's friend Brittany . . .I am praying and sending this info to all my prayer partners. I believe in the power of prayer. I have been very blessed to meet Rachel and experience the joy of her wonderful personality. I am so grateful for the opportunity of meeting your wonderful baby girl . . . she is an angel!!!

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  8. Your entire family is in my thoughts. I pray for a miracle on Friday for Rachel and that God will surround you all with His love during this difficult time.

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  9. I'm speechless, I wish my tears could express how bad I feel for you. Little Rachel is no doubt a miracle and I'll be praying for her constantly! So much love goes out to you all. Cassie

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  10. I'm speechless, I wish my tears could express how bad I feel for you. Little Rachel is no doubt a miracle and I'll be praying for her constantly! So much love goes out to you all. Cassie

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  11. Praying SO hard for your sweet baby girl this evening and always. May your family find peace in whatever it is that God has planned for this angel.

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  12. Tim and Lynlee GerneJanuary 21, 2010 at 3:42 AM

    Mike and Amy - Rachel and your family are constantly in our prayers. I am so glad that I was able to meet Rachel on the occassions that I have, and see her enjoying life ~ playing Rockband with Mike. You guys have been and continue to be the strongest parents I know. We love you guys and will be praying for a mircale and your peace.
    Tim and Lynlee

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  13. Amy and Michael, Your family has always been in our prayers. Extra prayers and love sending your way. David and Brenda

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  14. Amy and Mike,
    We have not met, but Terry and I live in Stockdale and we know Rachels story through Shane and Anna, our prayers are with Rachel and all of your family. We pray that God will hold Rachel in his arms and bring her through this, and give you the comfort that you will need during this time.

    Terry and Rena Mills

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  15. Amy and Mike,
    We have not met but we know Rachels story through Shane and Anna. Our prayers are with Rachel and your family. Please hold to your faith that God will hold Rachel in his hands and bring her through this.

    God Bless, Terry and Rena Mills

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  16. Mike and Amy,
    I worked with Malford and have kept up with Rachael through your blog. Thanks so much for taking the time to write when it must have been very hard at times. I have loved all the pictures of Rachael. She is such a precious little angel. My prayers are with Rachael and the entire family. I know your faith in God will give you the strength you need.

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  17. Amy and Michael,,please know you are all in our thoughts and prayers. God's grace will give you strength and we will continue to pray for that miracle! Our love to you all! David & Myrt

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  18. I only know you through the internet via Anna and Shane. God certainly gave this precious child to the right family. Your entire family always seems positive and there are always smiles even when your hearts must be breaking. I so admire you faith and courage...our prayers are with you as you face this latest and possibly greatest challenge. God be with you.
    Blessings, Patty Stahl

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