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922Re: [CEREBRAL PALSY CLUB] MY PRECIOUS ANGEL, CIERA

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  • debra Marasco-McNulty
    Jul 1 10:16 AM
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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.
      > >
      > >
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