Loading ...
Sorry, an error occurred while loading the content.
 

Re: I'm new here

Expand Messages
  • lbruneian
    ... 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,
    Message 1 of 7 , Sep 27, 2007
      --- 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.
    • marcusdeanasmum
      ... ventricular ... crawls ... surgery ... for her. ... same ... mine ... sit ... anytime. ... only ... she ... It is so great to hear about your daughter. I
      Message 2 of 7 , Oct 1, 2007
        --- 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 3 of 7 , Oct 1, 2007
          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 4 of 7 , Oct 8, 2007
            --- 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 5 of 7 , Oct 10, 2007
              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.
              > >
              >
            Your message has been successfully submitted and would be delivered to recipients shortly.