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

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Bea & Elizabeth))))))

    Checking for an update from you. Hoping that all is well and that Elizabeth was able to enjoy her Make A Wish trip.

    You are in my 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.

  2. #12
    Community Member mom2nfautism's Avatar
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    Default not good news..

    she had a good make a wish trip.. she had a TIA while on the tirp that made her sick at her stomach.. and then on way home from trip she had TIA all the way home...

    When we got back we finished packing up to move to texas.. the day before we loaded the truck I took her to her lung doctor and got bad news.. In feb. 2012 her muscles around her lungs were down to 35% use.. well in Aug. of 2012 they are down to 5% use..

    which means if she gets a cold, it will turn to phemunioa and she may not recover casue she can not cough things of her lungs anymore.

    waiting to into NF doctors in Texas..

  3. #13
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Bea & Elizabeth))))))

    Thankfully, Elizabeth was able to take her trip, but I'm so sorry that she suffered with TIAs. I do hope that she enjoyed some of her trip.

    She has so many challenges. God Bless Her. And all of this is so very wearing on you. God Bless You.

    Did Elizabeth's lung doctor mention the possibility of a trache? It is beneficial for deep suctioning to keep the lungs clear and the SATS up. My son has a trache, and I know it's saved his life numerous times in just the past year. It isn't scary at all. Like everything else, you get used to it. If the docs suggest a trache, let us know, and I'd be happy to answer any of your questions or concerns.

    Keeping you in my 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.

  4. #14
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    I'm so sorry to hear that her lungs are worse!! But I'm very glad she had her trip. The trache might help.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  5. #15
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    mom2nfautism - As a minister I am praying for you and yours and also praying for a miracle to happen - I have witnessed many things so I am always hopeful. Tons of gentle hugs to you and yours, as well as blessings and prayers. I am so glad That Make A Wish is sponsoring ya'll - I am sure it will mean the world to you and yours.
    Love and Light
    Blessings
    Alex44
    Skypilot

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