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Re: [CEREBRAL PALSY CLUB] MY PRECIOUS ANGEL, CIERA

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  • debra Marasco-McNulty
    To Jena, My son is in an adult day program, mainly for socialization. He loves to flirt and he goes to program to make those women work , my words not his,
    Message 1 of 7 , Jul 1, 2003
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      To Jena,

      My son is in an adult day program, mainly for
      socialization. He loves to flirt and he goes to
      program to "make those women work", my words not his,
      but it makes him smile.

      He is in a wheelchair, we've found out by a very bad
      experience that he has osteopoisis. He's spastic
      quadraplegic, g-tube, spinal fusion, hip release,
      trach, small insignificant seizures. He had pulmonary
      problems too, but the trach has helped with this; it
      was a hard thing to accept at first, but now it is our
      friend and has added to Jason's quality of life. He
      likes his trach and does not like it capped off. We
      do had a portable suction machine and he likes that
      to.

      We live in California and by the age of 14 a
      transition plan has to be implemented, though many
      schools and agencies are not aware of it but are
      learning.

      Have you checked out assistive technology and
      augmentive communication?

      Debra


      --- Jena <holmanj@...> wrote:
      > Hi Debra,
      > How are things going now that your son is out of
      > school? Does he stay home all day or go to a center
      > or work? I have to think about these things in a few
      > years....Take Care...Jena
      > Children are a Gift from God
      > Kyle, 14, we are adopting, SQCP, Seizure Disorder,
      > Non-Verbal, G-Tube, Swallowing and Lung Issues,
      > Glasses, Hand Braces and Wheel Chair Bound
      > ----- Original Message -----
      > From: debra Marasco-McNulty
      > To: cerebralpalsyclub@yahoogroups.com
      > Sent: Friday, June 27, 2003 4:17 PM
      > Subject: Re: [CEREBRAL PALSY CLUB] MY PRECIOUS
      > ANGEL, CIERA
      >
      >
      > To Jena,
      >
      > Your foster son sounds a great deal like my 26 yr
      > old
      > son, please communicate any sharing.
      >
      > Debra
      > debraphp@...
      >
      > --- Jena <holmanj@...> wrote:
      > > Hello and Welcome.....I will say a prayer for
      > > you....what type of CP does she have? I have a
      > > foster son who we are adopting who has spastic
      > quad
      > > cp, non verbal, g-tube, lung and swallowing
      > issues,
      > > glasses, wheel chair bound and hand braces but
      > he
      > > has a smile and a laugh that lites up a room! He
      > is
      > > 14. Hope to hear from you soon Take Care...Jena
      > > ----- Original Message -----
      > > From: wdcd2003
      > > To: cerebralpalsyclub@yahoogroups.com
      > > Sent: Wednesday, June 25, 2003 9:49 PM
      > > Subject: [CEREBRAL PALSY CLUB] MY PRECIOUS
      > ANGEL,
      > > CIERA
      > >
      > >
      > > Hello, everyone... this is my first x here...
      > but
      > > I'm glad I was
      > > able to find some type of support group. My
      > > daughter Ciera will be
      > > 3 on September 5, she has been diagnosed with
      > > Cerebral Palsy but
      > > really they don't know what is wrong with her
      > or
      > > how it happen. The
      > > only thing they can tell me is that she has
      > lack
      > > of white matter in
      > > her brain and frontal lobe atrophy. She is
      > now
      > > able to sit up for
      > > about 1 minute. She can't grasp anything for
      > a
      > > long period of x.
      > > She is unable to talk, even though I
      > understand
      > > what she wants.
      > > This has been a very hard thing for me to deal
      > > with especially being
      > > told they really don't have a answer for me.
      > > Please keep me and my
      > > angel in your prayers.
      > >
      > >
      > > Yahoo! Groups Sponsor
      > > ADVERTISEMENT
      > >
      > >
      > >
      > >
      > > To unsubscribe from this group, send an email
      > to:
      > > cerebralpalsyclub-unsubscribe@yahoogroups.com
      > >
      > >
      > >
      > > Your use of Yahoo! Groups is subject to the
      > Yahoo!
      > > Terms of Service.
      > >
      > >
      > > [Non-text portions of this message have been
      > > removed]
      > >
      > >
      >
      >
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      > [Non-text portions of this message have been
      > removed]
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      >
    • Jena
      Hi Debra....How is your son doing? and how are you? Take Care..Jena ... From: debra Marasco-McNulty To: cerebralpalsyclub@yahoogroups.com Sent: Tuesday, July
      Message 2 of 7 , Jul 18, 2003
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        Hi Debra....How is your son doing? and how are you? Take Care..Jena
        ----- Original Message -----
        From: debra Marasco-McNulty
        To: cerebralpalsyclub@yahoogroups.com
        Sent: Tuesday, July 01, 2003 12:16 PM
        Subject: Re: [CEREBRAL PALSY CLUB] MY PRECIOUS ANGEL, CIERA


        To Jena,

        My son is in an adult day program, mainly for
        socialization. He loves to flirt and he goes to
        program to "make those women work", my words not his,
        but it makes him smile.

        He is in a wheelchair, we've found out by a very bad
        experience that he has osteopoisis. He's spastic
        quadraplegic, g-tube, spinal fusion, hip release,
        trach, small insignificant seizures. He had pulmonary
        problems too, but the trach has helped with this; it
        was a hard thing to accept at first, but now it is our
        friend and has added to Jason's quality of life. He
        likes his trach and does not like it capped off. We
        do had a portable suction machine and he likes that
        to.

        We live in California and by the age of 14 a
        transition plan has to be implemented, though many
        schools and agencies are not aware of it but are
        learning.

        Have you checked out assistive technology and
        augmentive communication?

        Debra


        --- Jena <holmanj@...> wrote:
        > Hi Debra,
        > How are things going now that your son is out of
        > school? Does he stay home all day or go to a center
        > or work? I have to think about these things in a few
        > years....Take Care...Jena
        > Children are a Gift from God
        > Kyle, 14, we are adopting, SQCP, Seizure Disorder,
        > Non-Verbal, G-Tube, Swallowing and Lung Issues,
        > Glasses, Hand Braces and Wheel Chair Bound
        > ----- Original Message -----
        > From: debra Marasco-McNulty
        > To: cerebralpalsyclub@yahoogroups.com
        > Sent: Friday, June 27, 2003 4:17 PM
        > Subject: Re: [CEREBRAL PALSY CLUB] MY PRECIOUS
        > ANGEL, CIERA
        >
        >
        > To Jena,
        >
        > Your foster son sounds a great deal like my 26 yr
        > old
        > son, please communicate any sharing.
        >
        > Debra
        > debraphp@...
        >
        > --- Jena <holmanj@...> wrote:
        > > Hello and Welcome.....I will say a prayer for
        > > you....what type of CP does she have? I have a
        > > foster son who we are adopting who has spastic
        > quad
        > > cp, non verbal, g-tube, lung and swallowing
        > issues,
        > > glasses, wheel chair bound and hand braces but
        > he
        > > has a smile and a laugh that lites up a room! He
        > is
        > > 14. Hope to hear from you soon Take Care...Jena
        > > ----- Original Message -----
        > > From: wdcd2003
        > > To: cerebralpalsyclub@yahoogroups.com
        > > Sent: Wednesday, June 25, 2003 9:49 PM
        > > Subject: [CEREBRAL PALSY CLUB] MY PRECIOUS
        > ANGEL,
        > > CIERA
        > >
        > >
        > > Hello, everyone... this is my first x here...
        > but
        > > I'm glad I was
        > > able to find some type of support group. My
        > > daughter Ciera will be
        > > 3 on September 5, she has been diagnosed with
        > > Cerebral Palsy but
        > > really they don't know what is wrong with her
        > or
        > > how it happen. The
        > > only thing they can tell me is that she has
        > lack
        > > of white matter in
        > > her brain and frontal lobe atrophy. She is
        > now
        > > able to sit up for
        > > about 1 minute. She can't grasp anything for
        > a
        > > long period of x.
        > > She is unable to talk, even though I
        > understand
        > > what she wants.
        > > This has been a very hard thing for me to deal
        > > with especially being
        > > told they really don't have a answer for me.
        > > Please keep me and my
        > > angel in your prayers.
        > >
        > >
        > > Yahoo! Groups Sponsor
        > > ADVERTISEMENT
        > >
        > >
        > >
        > >
        > > To unsubscribe from this group, send an email
        > to:
        > > cerebralpalsyclub-unsubscribe@yahoogroups.com
        > >
        > >
        > >
        > > Your use of Yahoo! Groups is subject to the
        > Yahoo!
        > > Terms of Service.
        > >
        > >
        > > [Non-text portions of this message have been
        > > removed]
        > >
        > >
        >
        >
        > __________________________________
        > Do you Yahoo!?
        > SBC Yahoo! DSL - Now only $29.95 per month!
        > http://sbc.yahoo.com
        >
        > Yahoo! Groups Sponsor
        >
        >
        >
        > To unsubscribe from this group, send an email to:
        > cerebralpalsyclub-unsubscribe@yahoogroups.com
        >
        >
        >
        > Your use of Yahoo! Groups is subject to the Yahoo!
        > Terms of Service.
        >
        >
        > [Non-text portions of this message have been
        > removed]
        >
        >




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        [Non-text portions of this message have been removed]
      • debra Marasco-McNulty
        Hi Jena He is doing great. Flirting every chance he gets, hate to upset the apple cart by having a hip eval done, but the wheelchair is getting so
        Message 3 of 7 , Jul 22, 2003
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          Hi Jena

          He is doing great. Flirting every chance he gets,
          hate to upset the "apple cart" by having a hip eval
          done, but the wheelchair is getting so uncomfortable
          for him and if things keep going , he will be sraight
          on a gurney.

          One thing I don't see addressed by the CP club is
          special needs trusts. I've set up one for my son and
          am organizing an information night at the resource
          center that I work for. Any parent of special needs
          people should check into this.

          Debra
          --- Jena <holmanj@...> wrote:
          > Hi Debra....How is your son doing? and how are you?
          > Take Care..Jena
          > ----- Original Message -----
          > From: debra Marasco-McNulty
          > To: cerebralpalsyclub@yahoogroups.com
          > Sent: Tuesday, July 01, 2003 12:16 PM
          > Subject: Re: [CEREBRAL PALSY CLUB] MY PRECIOUS
          > ANGEL, CIERA
          >
          >
          > To Jena,
          >
          > My son is in an adult day program, mainly for
          > socialization. He loves to flirt and he goes to
          > program to "make those women work", my words not
          > his,
          > but it makes him smile.
          >
          > He is in a wheelchair, we've found out by a very
          > bad
          > experience that he has osteopoisis. He's spastic
          > quadraplegic, g-tube, spinal fusion, hip release,
          > trach, small insignificant seizures. He had
          > pulmonary
          > problems too, but the trach has helped with this;
          > it
          > was a hard thing to accept at first, but now it is
          > our
          > friend and has added to Jason's quality of life.
          > He
          > likes his trach and does not like it capped off.
          > We
          > do had a portable suction machine and he likes
          > that
          > to.
          >
          > We live in California and by the age of 14 a
          > transition plan has to be implemented, though many
          > schools and agencies are not aware of it but are
          > learning.
          >
          > Have you checked out assistive technology and
          > augmentive communication?
          >
          > Debra
          >
          >
          > --- Jena <holmanj@...> wrote:
          > > Hi Debra,
          > > How are things going now that your son is out
          > of
          > > school? Does he stay home all day or go to a
          > center
          > > or work? I have to think about these things in a
          > few
          > > years....Take Care...Jena
          > > Children are a Gift from God
          > > Kyle, 14, we are adopting, SQCP, Seizure
          > Disorder,
          > > Non-Verbal, G-Tube, Swallowing and Lung Issues,
          > > Glasses, Hand Braces and Wheel Chair Bound
          > > ----- Original Message -----
          > > From: debra Marasco-McNulty
          > > To: cerebralpalsyclub@yahoogroups.com
          > > Sent: Friday, June 27, 2003 4:17 PM
          > > Subject: Re: [CEREBRAL PALSY CLUB] MY PRECIOUS
          > > ANGEL, CIERA
          > >
          > >
          > > To Jena,
          > >
          > > Your foster son sounds a great deal like my 26
          > yr
          > > old
          > > son, please communicate any sharing.
          > >
          > > Debra
          > > debraphp@...
          > >
          > > --- Jena <holmanj@...> wrote:
          > > > Hello and Welcome.....I will say a prayer
          > for
          > > > you....what type of CP does she have? I have
          > a
          > > > foster son who we are adopting who has
          > spastic
          > > quad
          > > > cp, non verbal, g-tube, lung and swallowing
          > > issues,
          > > > glasses, wheel chair bound and hand braces
          > but
          > > he
          > > > has a smile and a laugh that lites up a
          > room! He
          > > is
          > > > 14. Hope to hear from you soon Take
          > Care...Jena
          > > > ----- Original Message -----
          > > > From: wdcd2003
          > > > To: cerebralpalsyclub@yahoogroups.com
          > > > Sent: Wednesday, June 25, 2003 9:49 PM
          > > > Subject: [CEREBRAL PALSY CLUB] MY PRECIOUS
          > > ANGEL,
          > > > CIERA
          > > >
          > > >
          > > > Hello, everyone... this is my first x
          > here...
          > > but
          > > > I'm glad I was
          > > > able to find some type of support group.
          > My
          > > > daughter Ciera will be
          > > > 3 on September 5, she has been diagnosed
          > with
          > > > Cerebral Palsy but
          > > > really they don't know what is wrong with
          > her
          > > or
          > > > how it happen. The
          > > > only thing they can tell me is that she
          > has
          > > lack
          > > > of white matter in
          > > > her brain and frontal lobe atrophy. She
          > is
          > > now
          > > > able to sit up for
          > > > about 1 minute. She can't grasp anything
          > for
          > > a
          > > > long period of x.
          > > > She is unable to talk, even though I
          > > understand
          > > > what she wants.
          > > > This has been a very hard thing for me to
          > deal
          > > > with especially being
          > > > told they really don't have a answer for
          > me.
          > > > Please keep me and my
          > > > angel in your prayers.
          > > >
          > > >
          > > > Yahoo! Groups Sponsor
          > > > ADVERTISEMENT
          > > >
          > > >
          > > >
          > > >
          > > > To unsubscribe from this group, send an
          > email
          > > to:
          > > >
          > cerebralpalsyclub-unsubscribe@yahoogroups.com
          > > >
          > > >
          > > >
          > > > Your use of Yahoo! Groups is subject to
          > the
          > > Yahoo!
          > > > Terms of Service.
          > > >
          > > >
          > > > [Non-text portions of this message have been
          > > > removed]
          > > >
          > > >
          > >
          > >
          > > __________________________________
          > > Do you Yahoo!?
          > > SBC Yahoo! DSL - Now only $29.95 per month!
          > > http://sbc.yahoo.com
          > >
          > > Yahoo! Groups Sponsor
          > >
          > >
          > >
          > > To unsubscribe from this group, send an email
          > to:
          > > cerebralpalsyclub-unsubscribe@yahoogroups.com
          > >
          > >
          > >
          > > Your use of Yahoo! Groups is subject to the
          > Yahoo!
          > > Terms of Service.
          > >
          > >
          > > [Non-text portions of this message have been
          > > removed]
          > >
          > >
          >
          >
          >
          >
          > Yahoo! Groups Sponsor
          >
          >
          >
          === message truncated ===


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