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4636Re: I'm new here

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  • Erika
    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!!!


      --- 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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