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Thread: Hello

  1. #1

    Default Hello

    Hello, I haven't been on Braintalk for years. I started on here in 2004 when my first Grandson Noah was born. Lots of complications, to make a long story short Noah is one of the few persons living with needing 3 shunts each in a different ventrical.
    I see a few folks I recognize from when I was a regular here.
    Just wanted to say hello and give an update on Noah.
    Noah is doing wonderfully. Still non mobile, still tube fed, still needs all 3 shunts. Noah is saying some words. Goes to public school full time and very interactive. Been about 4-5 years since any surgeries. Any of you that may remember Noah we had a tough time getting control of the shunts. 60 surgeries in his first 6 months of life, then 2 or so each year the next few years. All of a sudden things changed and all is very good.
    We took Noah in 4 years ago thought he was having a shunt malfuction. It turned out to be the flu. His nuerosurgeon said his vents were great and small but not slit ventrical. So we asked "when Noah was 6 months old neurosurgeons told us his brain was gone due to how large his ventical had become and that we should stop treatment (shunt malfucntion surgeries), be merciful and let him go, our answer was no.. so we asked the neurosurgen if his vents are so small now what is filling that space? We were told that it doesn't happen often but Noah has regrown his brain was the nuero's answer. He said it will not fuction like a normal brain but he has a full brain and who knows what he will be able to do.
    Noah is still severly disabled, he has a wonderful personality and inspires many.
    My wish is all that comes to this forumn as I did needing support will get what I got here. I got the support I needed so badly, I was devasted and felt there was no where to turn, I was despate for help and that help came in the form of Braintalk.
    Thanks!!!

    Best wishes to all,
    Aggie

  2. #2

    Default

    It's great to hear from you, Aggie! I'm not here much myself anymore, but I check in here and there. I'm so glad to hear Noah is doing well!




    LIZARD :)
    LIZ in Li'l Rhody; hydrocephalus dx'ed at 3 weeks old. No shunt surgery in 32 years! Epilepsy well-controlled and autoimmune issues being worked on. Mom to Caren, 21, successful ablation 4/18/07 for WPW; and Andrew, 18 (autism dx'ed at 2 1/2, 13 mm ACM dx'ed at 5 1/2, no surgery, doing awesome!!) Wife of 22 years to Don...and friend to Gina. RIP. 9/5/66-10/22/07 :(

    http://s.excoboard.com/Livingwithhyd..._Gina_Libonate
    http://health.groups.yahoo.com/group/autism-chiari/

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