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  • marcusdeanasmum
    ... ventricular ... crawls ... surgery ... for her. ... same ... mine ... sit ... anytime. ... only ... she ... It is so great to hear about your daughter. I
    Message 1 of 7 , Oct 1, 2007
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      --- In cerebralpalsyclub@yahoogroups.com, "lbruneian"
      <lbruneian@...> wrote:
      >
      > --- In cerebralpalsyclub@yahoogroups.com, "marcusdeanasmum"
      > <marcusdeanasmum@> wrote:
      > >
      > > Hi My name is Rosalie i have a 4 year old son and a 2.5 yr old
      > > daughter who has spastic displegia cerebral palsy and peri
      ventricular
      > > leukomalacia.She was diagnosed at 1 yr.
      > > I am just wondering what the future is for her atm she can sit
      > > independently and can almost position herself to sit,commando
      crawls
      > > and pulls herself to her knees.She sees a st,pt and ot.
      > > She is due to have botox in the new year and will also have
      surgery
      > > for her strabumis, she will also get afo's nex week.
      > > I guess i am wondering walking etc.. wise what things will be
      for her.
      > > She is a very smart little girl.
      > > Is there anyone who has children with similar issues..
      > >
      > Hi Rosalie. I'm Lucy and I too have a 6 yr old daughter with the
      same
      > CP as yours. But you are very lucky because she can sit whereas
      mine
      > can't sit, crawl, stand or walk at all. Of course when we let her
      sit
      > on the chair ie with support, she can but without she'll fall
      anytime.
      > I've heard about botox but according to our doctors here, they'll
      only
      > give botox when the child is fleshy and strong enough. Wondering
      > whether this treatment (botox) is safe?
      > My little girl can say Daddy, Mummy & rest are babbling. Although
      she
      > can't speak much, I love her-my SPECIAL ANGEL.
      >


      It is so great to hear about your daughter. I now that i am very
      lucky. They usually will assess the child to see if it's beneficial
      or not at this point they feel that she would benefit from it. Also
      the side effect are minimal.
    • Erika
      Hello Roaslie! My son has a similar diagnosis. Although, he is a spastic quadriplegic. He too has periventricular leukomalacia due to prematurity. He just
      Message 2 of 7 , Oct 1, 2007
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        Hello Roaslie! My son has a similar diagnosis. Although, he is a
        spastic quadriplegic. He too has periventricular leukomalacia due to
        prematurity. He just had his second birthday!! He is able to sit,
        commando crawl and is starting to pull himself up to his knees. From
        the research that I have done, it is next to impossible to gage what
        will become of his abilities in the future. For right now, my only
        advice to you is to keep up the good work. Continue ST,OT,&PT...and
        go ahead with the botox injections if your doctor sees it to be
        beneficial for your daughter. I have heard lots of good things about
        botox injections and it is very minimally invasive. My son's doctors
        and therapists have began to discuss future injections with my son.
        You are blessed to have such a special little girl! Keep your head
        up and remember that "Rome wasn't built in a day" your daughter will
        do everything that God intends for her to do. He never gives us more
        than he thinks that we can handle. Have a great week!!!

        ~Erika~

        --- In cerebralpalsyclub@yahoogroups.com, "marcusdeanasmum"
        <cruze@...> wrote:
        >
        > --- In cerebralpalsyclub@yahoogroups.com, "lbruneian"
        > <lbruneian@> wrote:
        > >
        > > --- In cerebralpalsyclub@yahoogroups.com, "marcusdeanasmum"
        > > <marcusdeanasmum@> wrote:
        > > >
        > > > Hi My name is Rosalie i have a 4 year old son and a 2.5 yr old
        > > > daughter who has spastic displegia cerebral palsy and peri
        > ventricular
        > > > leukomalacia.She was diagnosed at 1 yr.
        > > > I am just wondering what the future is for her atm she can sit
        > > > independently and can almost position herself to sit,commando
        > crawls
        > > > and pulls herself to her knees.She sees a st,pt and ot.
        > > > She is due to have botox in the new year and will also have
        > surgery
        > > > for her strabumis, she will also get afo's nex week.
        > > > I guess i am wondering walking etc.. wise what things will be
        > for her.
        > > > She is a very smart little girl.
        > > > Is there anyone who has children with similar issues..
        > > >
        > > Hi Rosalie. I'm Lucy and I too have a 6 yr old daughter with the
        > same
        > > CP as yours. But you are very lucky because she can sit whereas
        > mine
        > > can't sit, crawl, stand or walk at all. Of course when we let her
        > sit
        > > on the chair ie with support, she can but without she'll fall
        > anytime.
        > > I've heard about botox but according to our doctors here, they'll
        > only
        > > give botox when the child is fleshy and strong enough. Wondering
        > > whether this treatment (botox) is safe?
        > > My little girl can say Daddy, Mummy & rest are babbling. Although
        > she
        > > can't speak much, I love her-my SPECIAL ANGEL.
        > >
        >
        >
        > It is so great to hear about your daughter. I now that i am very
        > lucky. They usually will assess the child to see if it's beneficial
        > or not at this point they feel that she would benefit from it. Also
        > the side effect are minimal.
        >
      • lbruneian
        ... Hi Rosalie Thanks for your reply and thanks for the info about botox. At least I m not worried of the side effect now that you say it s minimal. I ll see
        Message 3 of 7 , Oct 8, 2007
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          --- In cerebralpalsyclub@yahoogroups.com, "marcusdeanasmum"
          <cruze@...> wrote:
          >
          > --- In cerebralpalsyclub@yahoogroups.com, "lbruneian"
          > <lbruneian@> wrote:
          > >
          > > --- In cerebralpalsyclub@yahoogroups.com, "marcusdeanasmum"
          > > <marcusdeanasmum@> wrote:
          > > >
          > > > Hi My name is Rosalie i have a 4 year old son and a 2.5 yr old
          > > > daughter who has spastic displegia cerebral palsy and peri
          > ventricular
          > > > leukomalacia.She was diagnosed at 1 yr.
          > > > I am just wondering what the future is for her atm she can sit
          > > > independently and can almost position herself to sit,commando
          > crawls
          > > > and pulls herself to her knees.She sees a st,pt and ot.
          > > > She is due to have botox in the new year and will also have
          > surgery
          > > > for her strabumis, she will also get afo's nex week.
          > > > I guess i am wondering walking etc.. wise what things will be
          > for her.
          > > > She is a very smart little girl.
          > > > Is there anyone who has children with similar issues..
          > > >
          > > Hi Rosalie. I'm Lucy and I too have a 6 yr old daughter with the
          > same
          > > CP as yours. But you are very lucky because she can sit whereas
          > mine
          > > can't sit, crawl, stand or walk at all. Of course when we let her
          > sit
          > > on the chair ie with support, she can but without she'll fall
          > anytime.
          > > I've heard about botox but according to our doctors here, they'll
          > only
          > > give botox when the child is fleshy and strong enough. Wondering
          > > whether this treatment (botox) is safe?
          > > My little girl can say Daddy, Mummy & rest are babbling. Although
          > she
          > > can't speak much, I love her-my SPECIAL ANGEL.
          > >
          >
          >
          > It is so great to hear about your daughter. I now that i am very
          > lucky. They usually will assess the child to see if it's beneficial
          > or not at this point they feel that she would benefit from it. Also
          > the side effect are minimal.
          >
          Hi Rosalie
          Thanks for your reply and thanks for the info about botox. At least
          I'm not worried of the side effect now that you say it's minimal. I'll
          see what my daughter's doctor will say about botox on her next
          appointment in November. Keep in touch Rosalie.
        • marcusdeanasmum
          Thanks so much.. ... to ... sit, ... From ... what ... only ... ST,OT,&PT...and ... about ... doctors ... son. ... head ... will ... more ... old ... sit ...
          Message 4 of 7 , Oct 10, 2007
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            Thanks so much..

            --- In cerebralpalsyclub@yahoogroups.com, "Erika" <sullykidsmom@...>
            wrote:
            >
            > Hello Roaslie! My son has a similar diagnosis. Although, he is a
            > spastic quadriplegic. He too has periventricular leukomalacia due
            to
            > prematurity. He just had his second birthday!! He is able to
            sit,
            > commando crawl and is starting to pull himself up to his knees.
            From
            > the research that I have done, it is next to impossible to gage
            what
            > will become of his abilities in the future. For right now, my
            only
            > advice to you is to keep up the good work. Continue
            ST,OT,&PT...and
            > go ahead with the botox injections if your doctor sees it to be
            > beneficial for your daughter. I have heard lots of good things
            about
            > botox injections and it is very minimally invasive. My son's
            doctors
            > and therapists have began to discuss future injections with my
            son.
            > You are blessed to have such a special little girl! Keep your
            head
            > up and remember that "Rome wasn't built in a day" your daughter
            will
            > do everything that God intends for her to do. He never gives us
            more
            > than he thinks that we can handle. Have a great week!!!
            >
            > ~Erika~
            >
            > --- In cerebralpalsyclub@yahoogroups.com, "marcusdeanasmum"
            > <cruze@> wrote:
            > >
            > > --- In cerebralpalsyclub@yahoogroups.com, "lbruneian"
            > > <lbruneian@> wrote:
            > > >
            > > > --- In cerebralpalsyclub@yahoogroups.com, "marcusdeanasmum"
            > > > <marcusdeanasmum@> wrote:
            > > > >
            > > > > Hi My name is Rosalie i have a 4 year old son and a 2.5 yr
            old
            > > > > daughter who has spastic displegia cerebral palsy and peri
            > > ventricular
            > > > > leukomalacia.She was diagnosed at 1 yr.
            > > > > I am just wondering what the future is for her atm she can
            sit
            > > > > independently and can almost position herself to
            sit,commando
            > > crawls
            > > > > and pulls herself to her knees.She sees a st,pt and ot.
            > > > > She is due to have botox in the new year and will also have
            > > surgery
            > > > > for her strabumis, she will also get afo's nex week.
            > > > > I guess i am wondering walking etc.. wise what things will
            be
            > > for her.
            > > > > She is a very smart little girl.
            > > > > Is there anyone who has children with similar issues..
            > > > >
            > > > Hi Rosalie. I'm Lucy and I too have a 6 yr old daughter with
            the
            > > same
            > > > CP as yours. But you are very lucky because she can sit
            whereas
            > > mine
            > > > can't sit, crawl, stand or walk at all. Of course when we let
            her
            > > sit
            > > > on the chair ie with support, she can but without she'll fall
            > > anytime.
            > > > I've heard about botox but according to our doctors here,
            they'll
            > > only
            > > > give botox when the child is fleshy and strong enough.
            Wondering
            > > > whether this treatment (botox) is safe?
            > > > My little girl can say Daddy, Mummy & rest are babbling.
            Although
            > > she
            > > > can't speak much, I love her-my SPECIAL ANGEL.
            > > >
            > >
            > >
            > > It is so great to hear about your daughter. I now that i am very
            > > lucky. They usually will assess the child to see if it's
            beneficial
            > > or not at this point they feel that she would benefit from it.
            Also
            > > the side effect are minimal.
            > >
            >
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