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Re: Mom of 9 year old twins with only on

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  • l888333
    Hi, Robyn, I have two sons, one typical and the other with mild hypotonic (floppy) cerebral palsy. We got a late diagnosis. My son was 4 before we were
    Message 1 of 296 , Jan 8, 2001
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      Hi, Robyn,<br>I have two sons, one typical and
      the other with mild hypotonic (floppy) cerebral
      palsy. We got a late diagnosis. My son was 4 before we
      were given the diagnosis (and I went into the ped.
      office with a copy of twins magazine that detailed cp);
      We are virtual "frequent flyers" at the doctors
      office. He has alot of respiratory issues along with fine
      motor, gross motor, speech and cognitive problems. The
      little guys are now 5 and 4 months. They were a month
      premature when they were born in August of 1995.
      <br><br>There is such a great range of variation in the way cp
      affects different children. My understanding is that the
      more severe the injury to the brain the more severe
      the issues that you need to take care of.
      <br><br>While my son is considered mild, I feel a great loss,
      even knowing that there are so many worse cases than
      ours. I have only to look at his brother to see "what
      could of been". I know this is a very unhealthy and
      unhappy perspective and I want to stop comparing them in
      this way. It is hard not to and to feel my little guy
      has been cheated a "typical existence".<br><br>I feel
      I need to be apologetic for complaining when it
      really could be so much worse. <br><br>I'd like to hear
      more about your twins. What grade they are in? Is your
      affected child in a special needs setting like mine? Are
      they good friends? How did you explain cp to them when
      they were younger? <br><br>I've gone on a bit long
      here. I'd better end now. <br><br>Rachel
    • 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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