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Hello, once again....

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  • cs1622
    Hi, all! It s been a few months since I ve posted and what a busy time it s been!! Our kitchen is still in remodeling shambles, the kids are STILL on summer
    Message 1 of 296 , Aug 2, 2000
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      Hi, all! It's been a few months since I've posted
      and what a busy time it's been!! Our kitchen is still
      in remodeling shambles, the kids are STILL on summer
      break, a dry heat here in Chicago has now been followed
      by a VERY wet heat and we're one week (HOPEFULLY)
      from Steve losing his trach! Steve continues to thrive
      but his increase in tone is causig me concern. He's
      been tolerating his adductor brace at night fairly
      well altho' I'm wanting to trade him off of clonidine
      and find something else to give him to relax him so
      he can wear his brace more easily. For those of you
      who'd like to start corresponding more, look up my
      earlier posts from in June for a short history of Steve
      and his issues. I'm a stay at home mom (which means
      I'm in the car a lot taking kids all over town!) and
      would love to trade ideas and hopes and information
      with others about CP and g-tube feedings and all that
      goes with caring for a kid such as mine/ours. Hope
      this finds you all very well and keepig cool. Clare
    • mpowals@aol.com
      Hi. My son Zack was 6 1/2 when he died last year. When I went to get him out of befd on New Year s Day he wasn t breathing and was stiff. I called 911 and
      Message 296 of 296 , Aug 9, 2006
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        Hi. My son Zack was 6 1/2 when he died last year. When I went to get him out
        of befd on New Year's Day he wasn't breathing and was stiff. I called 911 and
        they rushe dhim to the hospital. They got his heart started again but he died
        again about 20 minutes later and they were not able to bring him back again.
        It broke my heart. I'm doing better now after a year and a half. I think he
        died during a seizure because he often had severe seizures upon waking that made
        his breathing very difficult. He was pressed into a corner of the bed and I
        tink the movement of the seizure pushed him into a corner of the bed and he was
        unable to get air and being that he was quadraplegic, he could not move
        himself to get air. It was really hard on my two surviving sons. Is this similar to
        what happened to your son in January? Most people don't understand about our
        kids because it is so far out of their realm of experience. Four children out
        of seven have died from his preschool class and one boy from his first grade
        class has also died. I'd love to hear more about your son and any problems you
        are having.
        Melanie


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