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Thread: Doctors say nothing else can be done for my 17 y old daughter please read..

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    Community Member mom2nfautism's Avatar
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    Unhappy Doctors say nothing else can be done for my 17 y old daughter please read..

    Hi i'm not even sure what to write here.. so i will post this

    IN DEC. 2010 MY DAUGHTER ELIZABETH 15 Y OLD AT THE TIME HAD A MASSIVE STROKE.. DURING THIS PERIOD OF TIME SHE WAS DIGANOSED WITH A DISORDERED CALLED MOYAMOYA.... THIS IS DISORDER WHERE THE CAROTID ARTERY CLOSES OFF AND NOTHING CAN BE DONE. IN APRIL 2011 AND MAY 2011 THEY DID BRAIN BYPASS OPERATIONS TO TRY TO GET HER BRAIN THE O2 AND BLOOD SUPLLY IT NEEDS. THEY DID NOT TAKE. THEY HAVE TOLD ME THAT SHE WILL CONTINUE TO HAVE SMALL TIA (MINI STROKES) TILL A STOKE TAKES HER LIFE.. SHE ALSO HAS RESTRICTIVE LUNG DISIEASE (THE MUSSCLES AROUND HER LUNGS ARE NOT WORKING) AND NOTHING CAN BE DONE.. SHE HAS A COUGH OUT PUT OF 35% AND A INTAKE OF AIR OF 45% .. SHE WILL BE 18 IN DEC.. SHE HAS THE AUTISM/ASPERGERS, NEUROFIBROMATOSIS, ADHD, AND MILD SPASTIC DEPLISA CP OF HER LEGS. THEY DON'T KNOW HOW MUCH TIME SHE HAS JUST KNOWS THAT SHE WILL CONTINUE TO HAVE SMALL STROKES TILL A BIG STROKE TAKES HER LIFE..

    I am ok most of the time then every once and a while something happens and I just start crying.. like yesterday was a bad day for her for TIA's mini strokes and I was very emotional knowing that it could be anytime.. I'm trying to get her to live life as normal as possiable, we are waiting on make a wish to come through for her..

    I have good days then i have bad days with my emotions of knowing what will happen and not knowing when...

    Thank you
    mom2nfautism(moyamoya)

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    Distinguished Community Member Ging's Avatar
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    Dear Mom2, I am so sorry you are facing this heartbreaking diaganois, Honey you will need to live all your moments with your precious girl in a right now , that is the best. I have a grandchild with cystic Fibro. and their lung function has had those same numbers , it is heart breaking all they suffer through.
    I do hope make a wish comes through for her and you all can have some great times that you can talk about over and over, and relive and celebrate your precious time together.
    God Bless you and your daughter , please come and let us hear from you ...someone is usually on at any hour of the day!
    This isn't my fourm, but when someone's heart is breaking , we can certainly reach out to help give some support if we can, hurt and pain is something we all experience at one time or another, I am sending you a cyber hug (((hug))) and prayers for the strength you need to to make it throught this hard part of your life.

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    Distinguished Community Member houghchrst's Avatar
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    Mom I was just wondering how you are faring. Sounds stupid to say cause I can't imagine but we are here for you if you need us.

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    Community Member mom2nfautism's Avatar
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    Default haning in

    hi I'm hanging in there.. she had a bad TIA yesterday with vomiting but she is doing ok. thank you

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    Mom, your story is heartbreaking. ((((gentle cyber hugs)))) Pati

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((mom2nf))))))

    My heart goes out to you, and I'm here to support you through this difficult journey. I have been and am now where you are.

    I call it "pre-grieving," where we try to steel ourselves for the predicted outcome. Our thoughts go in directions no parent should ever travel. The stress of wondering if and when is enormous. We strive for normalcy, while being protective. We drink in every aspect, every nuance of our beloved child, keeping them close to us.

    Please allow yourself to feel all of your feelings, to let the tears flow, as they are a balm for your soul. Embrace Elizabeth, and cherish the moments you have together. Create new memories.

    May you find some comfort in knowing that others are praying for you and Elizabeth and that we will be here for you, whenever you need to talk and share.

    Sending healing and strengthening prayers ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

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    Community Member mom2nfautism's Avatar
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    Thank you.. her make a wish trip is Aug. 7 to the 13th so excited for her. :)

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    ((((((Bea & Elizabeth))))))

    That's wonderful news! My prayers are with you for safe travels and a wonderful experience. I'm sure that your camera will be working overtime!

    Meanwhile, please keep us posted on how Elizabeth and you are faring.

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

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    Distinguished Community Member houghchrst's Avatar
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    Gettin' to be time! Hope all is going fairly well so you can enjoy a bit of excitement.

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    I'm so sorry to hear that! I have spastic diplegia myself. As long as she has a happy life,albeit a short one, and feels loved, it is all worth it. I hope you do not mind my asking, how did the trip go?

    I will be praying for you!

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