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DBS

Last week I met my parents in Gainesville at my grandparents house. They drove down here with my aunt to go to my doctor's appointment with me. Thank god they did because it was a very scary day and I couldn't have gone there alone. I went to a clinic known as Tyler's Hope for a Dystonia Cure. I thought I was going to go in there and get botox and meds and walk out and be better in a few weeks. Things didn't work out like that. The doctor doesn't think botox or meds would help me. They think that deep brain stimulation (DBS) would be the best thing for me. I have to go through some testing and they have to watch a video of me then they will make their final decision. I am very happy they want to do something and they want to help me but at the same time I am more nervous then I have ever been. I have all these thoughts running through my head and I don't know where to stop. Every night I have nightmares of them cutting my head open and its terrifying. I am mostly scared for Hailey. What if something goes wrong? What if it doesn't work? All I want is to get my hand back and pick her up and squeeze her so tight with 2 hands!! I really hope this works but I am so scared I dont know what to do.

Comments

  1. Marilyn TremblayJanuary 30, 2011 at 6:10 PM

    Oh Mandy! It just makes me so sad to hear of your trials and tribulations with this awful disease. And then it makes me so happy to hear of your unconditional love and happiness you have with your daughter! I know that whatever you decide to do will be the right thing. My thoughts and prayers and love are always with you, honey.

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  2. asleeperJanuary 30, 2011 at 7:02 PM

    Thank you so much.

    ReplyDelete
  3. MarleneJanuary 30, 2011 at 9:18 PM

    Mandi,
    It is time to pray to God. He knew you the from the moment he knit you in your mother's womb. He has plans for you. I pray that you have peace and comfort in knowing that God will provide for your needs. Pray for a sign that DBS is right answer. He will tell you, you just have to trust in him completely.
    Good luck, Darling! You will find what you're looking for.

    ReplyDelete

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