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Thread: Update on my daughter Eilizabeth

  1. #1
    Community Member mom2nfautism's Avatar
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    Default Update on my daughter Eilizabeth

    Well i'ts been a while since I posted on here so I thought I would update
    it..
    In Feb. I took beth to the Neurosurgen, Neurologist, and Lung doctors. and
    all 3 gave me bad news.. The neurosurgen said the by pass operattions didnt do
    what they were supose to do. and brain is still getting poor blood supply.. and that there was Nothing else they can do..

    Neurology said that that means she will continue to have mini storkes (TIA"s) till a stroke takes her life. when that will be we don't know but it will happen.. so i have to sit and watch her have TIA's about 5 or more times a week.

    The lung doctor said her lungs have gotton worse and that
    the muscles around her lungs are starting to quit working. in Feb. they were
    at 35% and in aug. they were down to 5%..

    We have moved to Texas and I am in the process of switching things over and
    doing my best to get her into the NF clinic as soon as I can..

    Praying that they have answers and can do someething for her

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Bea & Elizabeth))))))

    Praying along with you that the NF clinic can do something for Elizabeth.

    Please remember to take care of yourself. You are under a tremendous amount of stress, and you need to make sure that you eat a healthy diet, drink plenty of water, take vitamins, and get rest when you can.

    Like the nurses always say to me, "You're no good to your child, if you're sick or exhausted, or something happens to you."

    And that is true, so please do take care of yourself.

    Please also keep us updated as you can.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3

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    Hugs and Prayers for you and your daughter and all that this reaches out to.
    I am sorry things didn't work out with the proceedure and that this news is now with you.
    As Rose said, please take care of yourself, I know how easy it is to not do so when we focus on our kids especially during the most difficult times.

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