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Re: [Parenting Children with Moyamoya] Juliana

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  • Kevin Cave
    Dear Tom, Juliana has a condition called NF 1(neurofibromatosis) which gives her the need to have brain scans every 6 months. The problem that she has is that
    Message 1 of 12 , Jun 9, 2005
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      Dear Tom,

      Juliana has a condition called NF 1(neurofibromatosis) which gives her the need to have brain scans every 6 months. The problem that she has is that her left internal cardioid artery is not present, she was born this way. Obviously Dr Scott would be the person to make the decision about Mallory. I would absolutely follow his advice. I can tell you if he is suggesting that they do two separate surgeries that may make sense. Prior to this surgery my daughter has been under anesthesia 4 times before we even new of any risks. I have done a lot of research on this before I brought my daughter to Boston. This type operation is not like a heart by-pass where the results are immediate, the Brain needs to learn that there is a new source of blood flow. Please keep in mind that the Doctors are obligated to give you the worst possible scenario. If I can help you in any other way please do not hesitate to contact me. We will pray for Mallory.

      Kevin Cave


      tlbusam@... wrote:
      Kevin,
      Our daughter Mallory will be seeing Dr. Scott on June 16 for an evaulation. Would you mind telling me if Juliana had both sides operated on at the same time or under one anesthesia. I hope your daughter does wonderful in her recovery and best wishes.

      Tom Busam
      >
      > From: "kevin_c86" <kevin_c86@...>
      > Date: 2005/06/08 Wed AM 11:36:12 EDT
      > To: parentingchildrenwithmoyamoya@yahoogroups.com
      > Subject: [Parenting Children with Moyamoya] Juliana
      >
      > Juliana had her surgery yesterday with Dr. Scott. He was very happy
      > with surgery and said it went even better then he thought. Juliana is
      > still in the ICU but is recovering fast and will transfer to another
      > roo this afternoon. Thank you all for your support.
      >
      > You've been invited to visit Juliana Cave's online CarePage.
      > A personalized Web page, called a CarePage, has been created
      > for Juliana, so you can easily receive
      > the latest news, view photos and share messages of support.
      >
      > To visit the CarePage, please click the link below:
      >
      > http://www.carepages.com/ServeCarePage?cpn=julianacave
      >
      >
      >
      >
      >
      >
      >
      >
      > Yahoo! Groups Links
      >
      >
      >
      >
      >
      >
      >



      ---------------------------------
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      To visit your group on the web, go to:
      http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

      To unsubscribe from this group, send an email to:
      parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.





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    • tlbusam@fuse.net
      Kevin, Thank you for your response and best of luck! Tom Busam
      Message 2 of 12 , Jun 9, 2005
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        Kevin,
        Thank you for your response and best of luck!

        Tom Busam
        >
        > From: Kevin Cave <kevin_c86@...>
        > Date: 2005/06/09 Thu AM 09:11:33 EDT
        > To: parentingchildrenwithmoyamoya@yahoogroups.com
        > Subject: Re: [Parenting Children with Moyamoya] Juliana
        >
        > Dear Tom,
        >
        > Juliana has a condition called NF 1(neurofibromatosis) which gives her the need to have brain scans every 6 months. The problem that she has is that her left internal cardioid artery is not present, she was born this way. Obviously Dr Scott would be the person to make the decision about Mallory. I would absolutely follow his advice. I can tell you if he is suggesting that they do two separate surgeries that may make sense. Prior to this surgery my daughter has been under anesthesia 4 times before we even new of any risks. I have done a lot of research on this before I brought my daughter to Boston. This type operation is not like a heart by-pass where the results are immediate, the Brain needs to learn that there is a new source of blood flow. Please keep in mind that the Doctors are obligated to give you the worst possible scenario. If I can help you in any other way please do not hesitate to contact me. We will pray for Mallory.
        >
        > Kevin Cave
        >
        >
        > tlbusam@... wrote:
        > Kevin,
        > Our daughter Mallory will be seeing Dr. Scott on June 16 for an evaulation. Would you mind telling me if Juliana had both sides operated on at the same time or under one anesthesia. I hope your daughter does wonderful in her recovery and best wishes.
        >
        > Tom Busam
        > >
        > > From: "kevin_c86" <kevin_c86@...>
        > > Date: 2005/06/08 Wed AM 11:36:12 EDT
        > > To: parentingchildrenwithmoyamoya@yahoogroups.com
        > > Subject: [Parenting Children with Moyamoya] Juliana
        > >
        > > Juliana had her surgery yesterday with Dr. Scott. He was very happy
        > > with surgery and said it went even better then he thought. Juliana is
        > > still in the ICU but is recovering fast and will transfer to another
        > > roo this afternoon. Thank you all for your support.
        > >
        > > You've been invited to visit Juliana Cave's online CarePage.
        > > A personalized Web page, called a CarePage, has been created
        > > for Juliana, so you can easily receive
        > > the latest news, view photos and share messages of support.
        > >
        > > To visit the CarePage, please click the link below:
        > >
        > > http://www.carepages.com/ServeCarePage?cpn=julianacave
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > > Yahoo! Groups Links
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        >
        >
        >
        > ---------------------------------
        > Yahoo! Groups Links
        >
        > To visit your group on the web, go to:
        > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
        >
        > To unsubscribe from this group, send an email to:
        > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
        >
        > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
        >
        >
        >
        >
        >
        > ---------------------------------
        > Discover Yahoo!
        > Stay in touch with email, IM, photo sharing & more. Check it out!
        >
        > [Non-text portions of this message have been removed]
        >
        >
        >
        >
        >
        > Yahoo! Groups Links
        >
        >
        >
        >
        >
        >
        >
      • trekkierick2002
        Kevin, I ve been reading your posts. I m sorry about everything going on, but things seem to be looking on the up and up. This is my first time visiting the
        Message 3 of 12 , Jun 14, 2005
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          Kevin,

          I've been reading your posts. I'm sorry about everything going on,
          but things seem to be looking on the up and up. This is my first
          time visiting the site in quite a while.
          My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
          surgery on May 13th, 2003, in Boston, and has been doing fantastic
          ever since. She received a wonderful report on her one-year follow
          up last June from Dr. Scott. Hayley only had to have surgery on her
          right side, her left side looked great. Dr. Scott asked us to have a
          yearly MRI to keep a check on the left side. Her MRI is scheduled
          for this Friday, June 17th. How old is Juliana? Hayley recovered
          from the surgery quick and still talks about all the wonderful
          people at BCH. She wants to know when she can go back and play in
          the play room and see Will, who also had surgery for MM the same day
          (hope you're reading this Ginny). Best of luck to you and your
          family, I will be praying for all of you. Please let me know if you
          have any questions, you can e-mail me at trekkierick@... if
          you want.

          Ricky

          --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
          <kevin_c86@y...> wrote:
          > Dear Tom,
          >
          > Juliana has a condition called NF 1(neurofibromatosis) which gives
          her the need to have brain scans every 6 months. The problem that
          she has is that her left internal cardioid artery is not present,
          she was born this way. Obviously Dr Scott would be the person to
          make the decision about Mallory. I would absolutely follow his
          advice. I can tell you if he is suggesting that they do two
          separate surgeries that may make sense. Prior to this surgery my
          daughter has been under anesthesia 4 times before we even new of any
          risks. I have done a lot of research on this before I brought my
          daughter to Boston. This type operation is not like a heart by-pass
          where the results are immediate, the Brain needs to learn that there
          is a new source of blood flow. Please keep in mind that the
          Doctors are obligated to give you the worst possible scenario. If I
          can help you in any other way please do not hesitate to contact me.
          We will pray for Mallory.
          >
          > Kevin Cave
          >
          >
          > tlbusam@f... wrote:
          > Kevin,
          > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
          evaulation. Would you mind telling me if Juliana had both sides
          operated on at the same time or under one anesthesia. I hope your
          daughter does wonderful in her recovery and best wishes.
          >
          > Tom Busam
          > >
          > > From: "kevin_c86" <kevin_c86@y...>
          > > Date: 2005/06/08 Wed AM 11:36:12 EDT
          > > To: parentingchildrenwithmoyamoya@yahoogroups.com
          > > Subject: [Parenting Children with Moyamoya] Juliana
          > >
          > > Juliana had her surgery yesterday with Dr. Scott. He was very
          happy
          > > with surgery and said it went even better then he thought.
          Juliana is
          > > still in the ICU but is recovering fast and will transfer to
          another
          > > roo this afternoon. Thank you all for your support.
          > >
          > > You've been invited to visit Juliana Cave's online CarePage.
          > > A personalized Web page, called a CarePage, has been created
          > > for Juliana, so you can easily receive
          > > the latest news, view photos and share messages of support.
          > >
          > > To visit the CarePage, please click the link below:
          > >
          > > http://www.carepages.com/ServeCarePage?cpn=julianacave
          > >
          > >
          > >
          > >
          > >
          > >
          > >
          > >
          > > Yahoo! Groups Links
          > >
          > >
          > >
          > >
          > >
          > >
          > >
          >
          >
          >
          > ---------------------------------
          > Yahoo! Groups Links
          >
          > To visit your group on the web, go to:
          > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
          >
          > To unsubscribe from this group, send an email to:
          > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
          >
          > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
          Service.
          >
          >
          >
          >
          >
          > ---------------------------------
          > Discover Yahoo!
          > Stay in touch with email, IM, photo sharing & more. Check it out!
          >
          > [Non-text portions of this message have been removed]
        • EDNA mojica
          Hi to all: This is my first time writing on this site, however I checked it out back in 1999 but didn t think anything of it because I thought that after my
          Message 4 of 12 , Jun 15, 2005
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            Hi to all:

            This is my first time writing on this site, however I checked it out back in 1999 but didn't think anything of it because I thought that after my surgery it wasn't going to come back.

            I am the person with the MM, I am a puerto rican mom of 2 kids (7 & 8 y/o), lives in Queens New York. I am 36 y/o, non-smoker, non-drug user, basically health & was diagnosed with this damn disease MM back in 1999 & immediatedly had a blockage removed on my left artery, it was preventing blood flowing from one side of my brain to the other. This all started because I was having my right hand side fall asleep after sex, it didn't happen all the time, but enough for me to go & check myself. After my Neurologist Dr. Schick performed some MRI's & also Surgeon (Dr. De Los Reyes), by the way, he was the only surgeon in New York able to diagnose MM. Now I am looking for him & he's no where to be found.

            So now, after that surgery was performed I assumed that I would be cured for ever, well was I wrong, thank god there's nothing paralyzed on my body, but have suffered 3 minor strokes. My numbness & weakness have come back about 2 years ago & again after sex (not as much though), but last month, as I played in the park with my kids, I was running back & tripped on my legs & fell & hit my head hard that my cell phone came off my waist, since this happened I started experimenting bluryness on my vision & numbness of my left leg that would make me fall.

            I have seen my Neurologist again since this & gotten MRI's done at the hospital but he doesn't know what to tell me, I am taking Ecotrin (aspiri) to thin out the blood. He's having a conference call tomorrow with other doctors at Beth Israel Medical Center in Manhattan to see what he can tell me.

            Please advise on any other medication out there.
            Thanks,
            Edna Mojica

            trekkierick2002 <trekkierick@...> wrote:
            Kevin,

            I've been reading your posts. I'm sorry about everything going on,
            but things seem to be looking on the up and up. This is my first
            time visiting the site in quite a while.
            My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
            surgery on May 13th, 2003, in Boston, and has been doing fantastic
            ever since. She received a wonderful report on her one-year follow
            up last June from Dr. Scott. Hayley only had to have surgery on her
            right side, her left side looked great. Dr. Scott asked us to have a
            yearly MRI to keep a check on the left side. Her MRI is scheduled
            for this Friday, June 17th. How old is Juliana? Hayley recovered
            from the surgery quick and still talks about all the wonderful
            people at BCH. She wants to know when she can go back and play in
            the play room and see Will, who also had surgery for MM the same day
            (hope you're reading this Ginny). Best of luck to you and your
            family, I will be praying for all of you. Please let me know if you
            have any questions, you can e-mail me at trekkierick@... if
            you want.

            Ricky

            --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
            <kevin_c86@y...> wrote:
            > Dear Tom,
            >
            > Juliana has a condition called NF 1(neurofibromatosis) which gives
            her the need to have brain scans every 6 months. The problem that
            she has is that her left internal cardioid artery is not present,
            she was born this way. Obviously Dr Scott would be the person to
            make the decision about Mallory. I would absolutely follow his
            advice. I can tell you if he is suggesting that they do two
            separate surgeries that may make sense. Prior to this surgery my
            daughter has been under anesthesia 4 times before we even new of any
            risks. I have done a lot of research on this before I brought my
            daughter to Boston. This type operation is not like a heart by-pass
            where the results are immediate, the Brain needs to learn that there
            is a new source of blood flow. Please keep in mind that the
            Doctors are obligated to give you the worst possible scenario. If I
            can help you in any other way please do not hesitate to contact me.
            We will pray for Mallory.
            >
            > Kevin Cave
            >
            >
            > tlbusam@f... wrote:
            > Kevin,
            > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
            evaulation. Would you mind telling me if Juliana had both sides
            operated on at the same time or under one anesthesia. I hope your
            daughter does wonderful in her recovery and best wishes.
            >
            > Tom Busam
            > >
            > > From: "kevin_c86" <kevin_c86@y...>
            > > Date: 2005/06/08 Wed AM 11:36:12 EDT
            > > To: parentingchildrenwithmoyamoya@yahoogroups.com
            > > Subject: [Parenting Children with Moyamoya] Juliana
            > >
            > > Juliana had her surgery yesterday with Dr. Scott. He was very
            happy
            > > with surgery and said it went even better then he thought.
            Juliana is
            > > still in the ICU but is recovering fast and will transfer to
            another
            > > roo this afternoon. Thank you all for your support.
            > >
            > > You've been invited to visit Juliana Cave's online CarePage.
            > > A personalized Web page, called a CarePage, has been created
            > > for Juliana, so you can easily receive
            > > the latest news, view photos and share messages of support.
            > >
            > > To visit the CarePage, please click the link below:
            > >
            > > http://www.carepages.com/ServeCarePage?cpn=julianacave
            > >
            > >
            > >
            > >
            > >
            > >
            > >
            > >
            > > Yahoo! Groups Links
            > >
            > >
            > >
            > >
            > >
            > >
            > >
            >
            >
            >
            > ---------------------------------
            > Yahoo! Groups Links
            >
            > To visit your group on the web, go to:
            > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
            >
            > To unsubscribe from this group, send an email to:
            > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
            >
            > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
            Service.
            >
            >
            >
            >
            >
            > ---------------------------------
            > Discover Yahoo!
            > Stay in touch with email, IM, photo sharing & more. Check it out!
            >
            > [Non-text portions of this message have been removed]





            ---------------------------------
            Yahoo! Groups Links

            To visit your group on the web, go to:
            http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

            To unsubscribe from this group, send an email to:
            parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

            Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


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          • Kevin Cave
            Thanks for your support, Juliana will be 4 on July 28, so far she has been doing fine, and has been difficult to keep at a slow pace. I was curios where you
            Message 5 of 12 , Jun 15, 2005
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              Thanks for your support,

              Juliana will be 4 on July 28, so far she has been doing fine, and has been difficult to keep at a slow pace. I was curios where you live, we live about 25 miles from Philadelphia. Juliana's NF doctor is at Children's Hospital of Pennsylvania and he has recommended that Juliana get MRI'S every 6 months to check for tumors on her optical nerve's, that is how we discovered the Moyamoya in the first place.

              Best Regards,

              Kevin Cave

              trekkierick2002 <trekkierick@...> wrote:
              Kevin,

              I've been reading your posts. I'm sorry about everything going on,
              but things seem to be looking on the up and up. This is my first
              time visiting the site in quite a while.
              My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
              surgery on May 13th, 2003, in Boston, and has been doing fantastic
              ever since. She received a wonderful report on her one-year follow
              up last June from Dr. Scott. Hayley only had to have surgery on her
              right side, her left side looked great. Dr. Scott asked us to have a
              yearly MRI to keep a check on the left side. Her MRI is scheduled
              for this Friday, June 17th. How old is Juliana? Hayley recovered
              from the surgery quick and still talks about all the wonderful
              people at BCH. She wants to know when she can go back and play in
              the play room and see Will, who also had surgery for MM the same day
              (hope you're reading this Ginny). Best of luck to you and your
              family, I will be praying for all of you. Please let me know if you
              have any questions, you can e-mail me at trekkierick@... if
              you want.

              Ricky

              --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
              <kevin_c86@y...> wrote:
              > Dear Tom,
              >
              > Juliana has a condition called NF 1(neurofibromatosis) which gives
              her the need to have brain scans every 6 months. The problem that
              she has is that her left internal cardioid artery is not present,
              she was born this way. Obviously Dr Scott would be the person to
              make the decision about Mallory. I would absolutely follow his
              advice. I can tell you if he is suggesting that they do two
              separate surgeries that may make sense. Prior to this surgery my
              daughter has been under anesthesia 4 times before we even new of any
              risks. I have done a lot of research on this before I brought my
              daughter to Boston. This type operation is not like a heart by-pass
              where the results are immediate, the Brain needs to learn that there
              is a new source of blood flow. Please keep in mind that the
              Doctors are obligated to give you the worst possible scenario. If I
              can help you in any other way please do not hesitate to contact me.
              We will pray for Mallory.
              >
              > Kevin Cave
              >
              >
              > tlbusam@f... wrote:
              > Kevin,
              > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
              evaulation. Would you mind telling me if Juliana had both sides
              operated on at the same time or under one anesthesia. I hope your
              daughter does wonderful in her recovery and best wishes.
              >
              > Tom Busam
              > >
              > > From: "kevin_c86" <kevin_c86@y...>
              > > Date: 2005/06/08 Wed AM 11:36:12 EDT
              > > To: parentingchildrenwithmoyamoya@yahoogroups.com
              > > Subject: [Parenting Children with Moyamoya] Juliana
              > >
              > > Juliana had her surgery yesterday with Dr. Scott. He was very
              happy
              > > with surgery and said it went even better then he thought.
              Juliana is
              > > still in the ICU but is recovering fast and will transfer to
              another
              > > roo this afternoon. Thank you all for your support.
              > >
              > > You've been invited to visit Juliana Cave's online CarePage.
              > > A personalized Web page, called a CarePage, has been created
              > > for Juliana, so you can easily receive
              > > the latest news, view photos and share messages of support.
              > >
              > > To visit the CarePage, please click the link below:
              > >
              > > http://www.carepages.com/ServeCarePage?cpn=julianacave
              > >
              > >
              > >
              > >
              > >
              > >
              > >
              > >
              > > Yahoo! Groups Links
              > >
              > >
              > >
              > >
              > >
              > >
              > >
              >
              >
              >
              > ---------------------------------
              > Yahoo! Groups Links
              >
              > To visit your group on the web, go to:
              > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
              >
              > To unsubscribe from this group, send an email to:
              > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
              >
              > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
              Service.
              >
              >
              >
              >
              >
              > ---------------------------------
              > Discover Yahoo!
              > Stay in touch with email, IM, photo sharing & more. Check it out!
              >
              > [Non-text portions of this message have been removed]





              ---------------------------------
              Yahoo! Groups Links

              To visit your group on the web, go to:
              http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

              To unsubscribe from this group, send an email to:
              parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

              Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




              ---------------------------------
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              [Non-text portions of this message have been removed]
            • EDNA mojica
              Hi Kevin: I am glad that Juliana has been doing okay, this is so hard for us adults, I can only imagine for kids. As of right now, I don t even know what to
              Message 6 of 12 , Jun 16, 2005
              • 0 Attachment
                Hi Kevin:
                I am glad that Juliana has been doing okay, this is so hard for us adults, I can only imagine for kids. As of right now, I don't even know what to do, I am getting my symptons every day, once or twice a day with nothing to do. I don't even know when I am going to suffer my weakness, I just take it when it comes. I live in Queens New York and the hospital where I had my surgery was in Beth Israel Medical Center in Manhattan.

                Regards,
                Edna Mojica


                Kevin Cave <kevin_c86@...> wrote:
                Thanks for your support,

                Juliana will be 4 on July 28, so far she has been doing fine, and has been difficult to keep at a slow pace. I was curios where you live, we live about 25 miles from Philadelphia. Juliana's NF doctor is at Children's Hospital of Pennsylvania and he has recommended that Juliana get MRI'S every 6 months to check for tumors on her optical nerve's, that is how we discovered the Moyamoya in the first place.

                Best Regards,

                Kevin Cave

                trekkierick2002 <trekkierick@...> wrote:
                Kevin,

                I've been reading your posts. I'm sorry about everything going on,
                but things seem to be looking on the up and up. This is my first
                time visiting the site in quite a while.
                My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
                surgery on May 13th, 2003, in Boston, and has been doing fantastic
                ever since. She received a wonderful report on her one-year follow
                up last June from Dr. Scott. Hayley only had to have surgery on her
                right side, her left side looked great. Dr. Scott asked us to have a
                yearly MRI to keep a check on the left side. Her MRI is scheduled
                for this Friday, June 17th. How old is Juliana? Hayley recovered
                from the surgery quick and still talks about all the wonderful
                people at BCH. She wants to know when she can go back and play in
                the play room and see Will, who also had surgery for MM the same day
                (hope you're reading this Ginny). Best of luck to you and your
                family, I will be praying for all of you. Please let me know if you
                have any questions, you can e-mail me at trekkierick@... if
                you want.

                Ricky

                --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
                <kevin_c86@y...> wrote:
                > Dear Tom,
                >
                > Juliana has a condition called NF 1(neurofibromatosis) which gives
                her the need to have brain scans every 6 months. The problem that
                she has is that her left internal cardioid artery is not present,
                she was born this way. Obviously Dr Scott would be the person to
                make the decision about Mallory. I would absolutely follow his
                advice. I can tell you if he is suggesting that they do two
                separate surgeries that may make sense. Prior to this surgery my
                daughter has been under anesthesia 4 times before we even new of any
                risks. I have done a lot of research on this before I brought my
                daughter to Boston. This type operation is not like a heart by-pass
                where the results are immediate, the Brain needs to learn that there
                is a new source of blood flow. Please keep in mind that the
                Doctors are obligated to give you the worst possible scenario. If I
                can help you in any other way please do not hesitate to contact me.
                We will pray for Mallory.
                >
                > Kevin Cave
                >
                >
                > tlbusam@f... wrote:
                > Kevin,
                > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
                evaulation. Would you mind telling me if Juliana had both sides
                operated on at the same time or under one anesthesia. I hope your
                daughter does wonderful in her recovery and best wishes.
                >
                > Tom Busam
                > >
                > > From: "kevin_c86" <kevin_c86@y...>
                > > Date: 2005/06/08 Wed AM 11:36:12 EDT
                > > To: parentingchildrenwithmoyamoya@yahoogroups.com
                > > Subject: [Parenting Children with Moyamoya] Juliana
                > >
                > > Juliana had her surgery yesterday with Dr. Scott. He was very
                happy
                > > with surgery and said it went even better then he thought.
                Juliana is
                > > still in the ICU but is recovering fast and will transfer to
                another
                > > roo this afternoon. Thank you all for your support.
                > >
                > > You've been invited to visit Juliana Cave's online CarePage.
                > > A personalized Web page, called a CarePage, has been created
                > > for Juliana, so you can easily receive
                > > the latest news, view photos and share messages of support.
                > >
                > > To visit the CarePage, please click the link below:
                > >
                > > http://www.carepages.com/ServeCarePage?cpn=julianacave
                > >
                > >
                > >
                > >
                > >
                > >
                > >
                > >
                > > Yahoo! Groups Links
                > >
                > >
                > >
                > >
                > >
                > >
                > >
                >
                >
                >
                > ---------------------------------
                > Yahoo! Groups Links
                >
                > To visit your group on the web, go to:
                > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
                >
                > To unsubscribe from this group, send an email to:
                > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                >
                > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                Service.
                >
                >
                >
                >
                >
                > ---------------------------------
                > Discover Yahoo!
                > Stay in touch with email, IM, photo sharing & more. Check it out!
                >
                > [Non-text portions of this message have been removed]





                ---------------------------------
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                To unsubscribe from this group, send an email to:
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              • trekkierick2002
                Kevin, Glad to hear Juliana is doing well. We live in Virginia, about 45 miles north-west of Roanoke. Hayley s neurologist is in Roanoke. She had never had a
                Message 7 of 12 , Jun 16, 2005
                • 0 Attachment
                  Kevin,

                  Glad to hear Juliana is doing well. We live in Virginia, about 45
                  miles north-west of Roanoke. Hayley's neurologist is in Roanoke. She
                  had never had a MRI until the TIA that she had on 2/1/03. She then
                  MRIs in Oct '03 and one in May '04. Everything has been looking
                  great so far. Will Juliana need surgery on the other side?

                  Regards,
                  Ricky

                  --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
                  <kevin_c86@y...> wrote:
                  > Thanks for your support,
                  >
                  > Juliana will be 4 on July 28, so far she has been doing fine, and
                  has been difficult to keep at a slow pace. I was curios where you
                  live, we live about 25 miles from Philadelphia. Juliana's NF doctor
                  is at Children's Hospital of Pennsylvania and he has recommended
                  that Juliana get MRI'S every 6 months to check for tumors on her
                  optical nerve's, that is how we discovered the Moyamoya in the first
                  place.
                  >
                  > Best Regards,
                  >
                  > Kevin Cave
                  >
                  > trekkierick2002 <trekkierick@n...> wrote:
                  > Kevin,
                  >
                  > I've been reading your posts. I'm sorry about everything going on,
                  > but things seem to be looking on the up and up. This is my first
                  > time visiting the site in quite a while.
                  > My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
                  > surgery on May 13th, 2003, in Boston, and has been doing fantastic
                  > ever since. She received a wonderful report on her one-year follow
                  > up last June from Dr. Scott. Hayley only had to have surgery on
                  her
                  > right side, her left side looked great. Dr. Scott asked us to have
                  a
                  > yearly MRI to keep a check on the left side. Her MRI is scheduled
                  > for this Friday, June 17th. How old is Juliana? Hayley recovered
                  > from the surgery quick and still talks about all the wonderful
                  > people at BCH. She wants to know when she can go back and play in
                  > the play room and see Will, who also had surgery for MM the same
                  day
                  > (hope you're reading this Ginny). Best of luck to you and your
                  > family, I will be praying for all of you. Please let me know if
                  you
                  > have any questions, you can e-mail me at trekkierick@n... if
                  > you want.
                  >
                  > Ricky
                  >
                  > --- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
                  > <kevin_c86@y...> wrote:
                  > > Dear Tom,
                  > >
                  > > Juliana has a condition called NF 1(neurofibromatosis) which
                  gives
                  > her the need to have brain scans every 6 months. The problem that
                  > she has is that her left internal cardioid artery is not present,
                  > she was born this way. Obviously Dr Scott would be the person to
                  > make the decision about Mallory. I would absolutely follow his
                  > advice. I can tell you if he is suggesting that they do two
                  > separate surgeries that may make sense. Prior to this surgery my
                  > daughter has been under anesthesia 4 times before we even new of
                  any
                  > risks. I have done a lot of research on this before I brought my
                  > daughter to Boston. This type operation is not like a heart by-
                  pass
                  > where the results are immediate, the Brain needs to learn that
                  there
                  > is a new source of blood flow. Please keep in mind that the
                  > Doctors are obligated to give you the worst possible scenario. If
                  I
                  > can help you in any other way please do not hesitate to contact
                  me.
                  > We will pray for Mallory.
                  > >
                  > > Kevin Cave
                  > >
                  > >
                  > > tlbusam@f... wrote:
                  > > Kevin,
                  > > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
                  > evaulation. Would you mind telling me if Juliana had both sides
                  > operated on at the same time or under one anesthesia. I hope your
                  > daughter does wonderful in her recovery and best wishes.
                  > >
                  > > Tom Busam
                  > > >
                  > > > From: "kevin_c86" <kevin_c86@y...>
                  > > > Date: 2005/06/08 Wed AM 11:36:12 EDT
                  > > > To: parentingchildrenwithmoyamoya@yahoogroups.com
                  > > > Subject: [Parenting Children with Moyamoya] Juliana
                  > > >
                  > > > Juliana had her surgery yesterday with Dr. Scott. He was very
                  > happy
                  > > > with surgery and said it went even better then he thought.
                  > Juliana is
                  > > > still in the ICU but is recovering fast and will transfer to
                  > another
                  > > > roo this afternoon. Thank you all for your support.
                  > > >
                  > > > You've been invited to visit Juliana Cave's online CarePage.
                  > > > A personalized Web page, called a CarePage, has been created
                  > > > for Juliana, so you can easily receive
                  > > > the latest news, view photos and share messages of support.
                  > > >
                  > > > To visit the CarePage, please click the link below:
                  > > >
                  > > > http://www.carepages.com/ServeCarePage?cpn=julianacave
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > > Yahoo! Groups Links
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > > >
                  > >
                  > >
                  > >
                  > > ---------------------------------
                  > > Yahoo! Groups Links
                  > >
                  > > To visit your group on the web, go to:
                  > > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
                  > >
                  > > To unsubscribe from this group, send an email to:
                  > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                  > >
                  > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                  > Service.
                  > >
                  > >
                  > >
                  > >
                  > >
                  > > ---------------------------------
                  > > Discover Yahoo!
                  > > Stay in touch with email, IM, photo sharing & more. Check it
                  out!
                  > >
                  > > [Non-text portions of this message have been removed]
                  >
                  >
                  >
                  >
                  >
                  > ---------------------------------
                  > Yahoo! Groups Links
                  >
                  > To visit your group on the web, go to:
                  > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
                  >
                  > To unsubscribe from this group, send an email to:
                  > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                  >
                  > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                  Service.
                  >
                  >
                  >
                  >
                  > ---------------------------------
                  > Discover Yahoo!
                  > Get on-the-go sports scores, stock quotes, news & more. Check it
                  out!
                  >
                  > [Non-text portions of this message have been removed]
                • dareinhart@yahoo.com
                  ... Edna, even though you are an adult, you can still contact Dr. Scott at Boston Children s hospital. You could also ask your doctors to consult with him.
                  Message 8 of 12 , Jun 16, 2005
                  • 0 Attachment
                    --- EDNA mojica <jasjosh2003@...> wrote:
                    Edna, even though you are an adult, you can still
                    contact Dr. Scott at Boston Children's hospital. You
                    could also ask your doctors to consult with him. Dr.
                    Steinberg in California at Stanford is spoken highly
                    of by many adults -- but he is on the other coast, so
                    Dr. Scott might be easier to get to.

                    You can send him an e-mail, just look him up on the
                    Boston Neurological Society list.

                    Hope you get some answers soon.

                    Denyse


                    > Hi Kevin:
                    > I am glad that Juliana has been doing okay, this is
                    > so hard for us adults, I can only imagine for kids.
                    > As of right now, I don't even know what to do, I am
                    > getting my symptons every day, once or twice a day
                    > with nothing to do. I don't even know when I am
                    > going to suffer my weakness, I just take it when it
                    > comes. I live in Queens New York and the hospital
                    > where I had my surgery was in Beth Israel Medical
                    > Center in Manhattan.
                    >
                    > Regards,
                    > Edna Mojica
                    >
                    >
                    > Kevin Cave <kevin_c86@...> wrote:
                    > Thanks for your support,
                    >
                    > Juliana will be 4 on July 28, so far she has been
                    > doing fine, and has been difficult to keep at a slow
                    > pace. I was curios where you live, we live about 25
                    > miles from Philadelphia. Juliana's NF doctor is at
                    > Children's Hospital of Pennsylvania and he has
                    > recommended that Juliana get MRI'S every 6 months to
                    > check for tumors on her optical nerve's, that is how
                    > we discovered the Moyamoya in the first place.
                    >
                    > Best Regards,
                    >
                    > Kevin Cave
                    >
                    > trekkierick2002 <trekkierick@...> wrote:
                    > Kevin,
                    >
                    > I've been reading your posts. I'm sorry about
                    > everything going on,
                    > but things seem to be looking on the up and up. This
                    > is my first
                    > time visiting the site in quite a while.
                    > My 5-year old daughter, Hayley, also has NF1 and
                    > MoyaMoya. She had
                    > surgery on May 13th, 2003, in Boston, and has been
                    > doing fantastic
                    > ever since. She received a wonderful report on her
                    > one-year follow
                    > up last June from Dr. Scott. Hayley only had to have
                    > surgery on her
                    > right side, her left side looked great. Dr. Scott
                    > asked us to have a
                    > yearly MRI to keep a check on the left side. Her MRI
                    > is scheduled
                    > for this Friday, June 17th. How old is Juliana?
                    > Hayley recovered
                    > from the surgery quick and still talks about all the
                    > wonderful
                    > people at BCH. She wants to know when she can go
                    > back and play in
                    > the play room and see Will, who also had surgery for
                    > MM the same day
                    > (hope you're reading this Ginny). Best of luck to
                    > you and your
                    > family, I will be praying for all of you. Please let
                    > me know if you
                    > have any questions, you can e-mail me at
                    > trekkierick@... if
                    > you want.
                    >
                    > Ricky
                    >
                    > --- In
                    > parentingchildrenwithmoyamoya@yahoogroups.com, Kevin
                    > Cave
                    > <kevin_c86@y...> wrote:
                    > > Dear Tom,
                    > >
                    > > Juliana has a condition called NF
                    > 1(neurofibromatosis) which gives
                    > her the need to have brain scans every 6 months. The
                    > problem that
                    > she has is that her left internal cardioid artery is
                    > not present,
                    > she was born this way. Obviously Dr Scott would be
                    > the person to
                    > make the decision about Mallory. I would absolutely
                    > follow his
                    > advice. I can tell you if he is suggesting that
                    > they do two
                    > separate surgeries that may make sense. Prior to
                    > this surgery my
                    > daughter has been under anesthesia 4 times before we
                    > even new of any
                    > risks. I have done a lot of research on this before
                    > I brought my
                    > daughter to Boston. This type operation is not like
                    > a heart by-pass
                    > where the results are immediate, the Brain needs to
                    > learn that there
                    > is a new source of blood flow. Please keep in mind
                    > that the
                    > Doctors are obligated to give you the worst possible
                    > scenario. If I
                    > can help you in any other way please do not hesitate
                    > to contact me.
                    > We will pray for Mallory.
                    > >
                    > > Kevin Cave
                    > >
                    > >
                    > > tlbusam@f... wrote:
                    > > Kevin,
                    > > Our daughter Mallory will be seeing Dr. Scott on
                    > June 16 for an
                    > evaulation. Would you mind telling me if Juliana
                    > had both sides
                    > operated on at the same time or under one
                    > anesthesia. I hope your
                    > daughter does wonderful in her recovery and best
                    > wishes.
                    > >
                    > > Tom Busam
                    > > >
                    > > > From: "kevin_c86" <kevin_c86@y...>
                    > > > Date: 2005/06/08 Wed AM 11:36:12 EDT
                    > > > To:
                    > parentingchildrenwithmoyamoya@yahoogroups.com
                    > > > Subject: [Parenting Children with Moyamoya]
                    > Juliana
                    > > >
                    > > > Juliana had her surgery yesterday with Dr.
                    > Scott. He was very
                    > happy
                    > > > with surgery and said it went even better then
                    > he thought.
                    > Juliana is
                    > > > still in the ICU but is recovering fast and will
                    > transfer to
                    > another
                    > > > roo this afternoon. Thank you all for your
                    > support.
                    > > >
                    > > > You've been invited to visit Juliana Cave's
                    > online CarePage.
                    > > > A personalized Web page, called a CarePage, has
                    > been created
                    > > > for Juliana, so you can easily receive
                    > > > the latest news, view photos and share messages
                    > of support.
                    > > >
                    > > > To visit the CarePage, please click the link
                    > below:
                    > > >
                    > > >
                    >
                    http://www.carepages.com/ServeCarePage?cpn=julianacave
                    > > >
                    > > >
                    > > >
                    > > >
                    > > >
                    > > >
                    > > >
                    > > >
                    > > > Yahoo! Groups Links
                    > > >
                    > > >
                    > > >
                    > > >
                    > > >
                    > > >
                    > > >
                    > >
                    > >
                    > >
                    > > ---------------------------------
                    > > Yahoo! Groups Links
                    > >
                    > > To visit your group on the web, go to:
                    > >
                    >
                    http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
                    > >
                    > > To unsubscribe from this group, send an email
                    > to:
                    > >
                    >
                    parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                    > >
                    > > Your use of Yahoo! Groups is subject to the
                    > Yahoo! Terms of
                    > Service.
                    > >
                    > >
                    > >
                    > >
                    > >
                    > > ---------------------------------
                    > > Discover Yahoo!
                    > > Stay in touch with email, IM, photo sharing &
                    > more. Check it out!
                    > >
                    > > [Non-text portions of this message have been
                    > removed]
                    >
                    >
                    >
                    === message truncated ===




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                  • mandy harmon
                    My daughter is again experiencing some similiar issues, we are now putting her on oxygen for the symptoms Mandy
                    Message 9 of 12 , Jun 20, 2005
                    • 0 Attachment
                      My daughter is again experiencing some similiar issues, we are now putting
                      her on oxygen for the symptoms

                      Mandy

                      >From: EDNA mojica <jasjosh2003@...>
                      >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
                      >To: parentingchildrenwithmoyamoya@yahoogroups.com
                      >Subject: Re: [Parenting Children with Moyamoya] Re: Juliana
                      >Date: Wed, 15 Jun 2005 12:31:22 -0700 (PDT)
                      >
                      >Hi to all:
                      >
                      >This is my first time writing on this site, however I checked it out back
                      >in 1999 but didn't think anything of it because I thought that after my
                      >surgery it wasn't going to come back.
                      >
                      >I am the person with the MM, I am a puerto rican mom of 2 kids (7 & 8 y/o),
                      >lives in Queens New York. I am 36 y/o, non-smoker, non-drug user, basically
                      >health & was diagnosed with this damn disease MM back in 1999 &
                      >immediatedly had a blockage removed on my left artery, it was preventing
                      >blood flowing from one side of my brain to the other. This all started
                      >because I was having my right hand side fall asleep after sex, it didn't
                      >happen all the time, but enough for me to go & check myself. After my
                      >Neurologist Dr. Schick performed some MRI's & also Surgeon (Dr. De Los
                      >Reyes), by the way, he was the only surgeon in New York able to diagnose
                      >MM. Now I am looking for him & he's no where to be found.
                      >
                      >So now, after that surgery was performed I assumed that I would be cured
                      >for ever, well was I wrong, thank god there's nothing paralyzed on my body,
                      >but have suffered 3 minor strokes. My numbness & weakness have come back
                      >about 2 years ago & again after sex (not as much though), but last month,
                      >as I played in the park with my kids, I was running back & tripped on my
                      >legs & fell & hit my head hard that my cell phone came off my waist, since
                      >this happened I started experimenting bluryness on my vision & numbness of
                      >my left leg that would make me fall.
                      >
                      >I have seen my Neurologist again since this & gotten MRI's done at the
                      >hospital but he doesn't know what to tell me, I am taking Ecotrin (aspiri)
                      >to thin out the blood. He's having a conference call tomorrow with other
                      >doctors at Beth Israel Medical Center in Manhattan to see what he can tell
                      >me.
                      >
                      >Please advise on any other medication out there.
                      >Thanks,
                      >Edna Mojica
                      >
                      >trekkierick2002 <trekkierick@...> wrote:
                      >Kevin,
                      >
                      >I've been reading your posts. I'm sorry about everything going on,
                      >but things seem to be looking on the up and up. This is my first
                      >time visiting the site in quite a while.
                      >My 5-year old daughter, Hayley, also has NF1 and MoyaMoya. She had
                      >surgery on May 13th, 2003, in Boston, and has been doing fantastic
                      >ever since. She received a wonderful report on her one-year follow
                      >up last June from Dr. Scott. Hayley only had to have surgery on her
                      >right side, her left side looked great. Dr. Scott asked us to have a
                      >yearly MRI to keep a check on the left side. Her MRI is scheduled
                      >for this Friday, June 17th. How old is Juliana? Hayley recovered
                      >from the surgery quick and still talks about all the wonderful
                      >people at BCH. She wants to know when she can go back and play in
                      >the play room and see Will, who also had surgery for MM the same day
                      >(hope you're reading this Ginny). Best of luck to you and your
                      >family, I will be praying for all of you. Please let me know if you
                      >have any questions, you can e-mail me at trekkierick@... if
                      >you want.
                      >
                      >Ricky
                      >
                      >--- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
                      ><kevin_c86@y...> wrote:
                      > > Dear Tom,
                      > >
                      > > Juliana has a condition called NF 1(neurofibromatosis) which gives
                      >her the need to have brain scans every 6 months. The problem that
                      >she has is that her left internal cardioid artery is not present,
                      >she was born this way. Obviously Dr Scott would be the person to
                      >make the decision about Mallory. I would absolutely follow his
                      >advice. I can tell you if he is suggesting that they do two
                      >separate surgeries that may make sense. Prior to this surgery my
                      >daughter has been under anesthesia 4 times before we even new of any
                      >risks. I have done a lot of research on this before I brought my
                      >daughter to Boston. This type operation is not like a heart by-pass
                      >where the results are immediate, the Brain needs to learn that there
                      >is a new source of blood flow. Please keep in mind that the
                      >Doctors are obligated to give you the worst possible scenario. If I
                      >can help you in any other way please do not hesitate to contact me.
                      >We will pray for Mallory.
                      > >
                      > > Kevin Cave
                      > >
                      > >
                      > > tlbusam@f... wrote:
                      > > Kevin,
                      > > Our daughter Mallory will be seeing Dr. Scott on June 16 for an
                      >evaulation. Would you mind telling me if Juliana had both sides
                      >operated on at the same time or under one anesthesia. I hope your
                      >daughter does wonderful in her recovery and best wishes.
                      > >
                      > > Tom Busam
                      > > >
                      > > > From: "kevin_c86" <kevin_c86@y...>
                      > > > Date: 2005/06/08 Wed AM 11:36:12 EDT
                      > > > To: parentingchildrenwithmoyamoya@yahoogroups.com
                      > > > Subject: [Parenting Children with Moyamoya] Juliana
                      > > >
                      > > > Juliana had her surgery yesterday with Dr. Scott. He was very
                      >happy
                      > > > with surgery and said it went even better then he thought.
                      >Juliana is
                      > > > still in the ICU but is recovering fast and will transfer to
                      >another
                      > > > roo this afternoon. Thank you all for your support.
                      > > >
                      > > > You've been invited to visit Juliana Cave's online CarePage.
                      > > > A personalized Web page, called a CarePage, has been created
                      > > > for Juliana, so you can easily receive
                      > > > the latest news, view photos and share messages of support.
                      > > >
                      > > > To visit the CarePage, please click the link below:
                      > > >
                      > > > http://www.carepages.com/ServeCarePage?cpn=julianacave
                      > > >
                      > > >
                      > > >
                      > > >
                      > > >
                      > > >
                      > > >
                      > > >
                      > > > Yahoo! Groups Links
                      > > >
                      > > >
                      > > >
                      > > >
                      > > >
                      > > >
                      > > >
                      > >
                      > >
                      > >
                      > > ---------------------------------
                      > > Yahoo! Groups Links
                      > >
                      > > To visit your group on the web, go to:
                      > > http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
                      > >
                      > > To unsubscribe from this group, send an email to:
                      > > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                      > >
                      > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                      >Service.
                      > >
                      > >
                      > >
                      > >
                      > >
                      > > ---------------------------------
                      > > Discover Yahoo!
                      > > Stay in touch with email, IM, photo sharing & more. Check it out!
                      > >
                      > > [Non-text portions of this message have been removed]
                      >
                      >
                      >
                      >
                      >
                      >---------------------------------
                      >Yahoo! Groups Links
                      >
                      > To visit your group on the web, go to:
                      >http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
                      >
                      > To unsubscribe from this group, send an email to:
                      >parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
                      >
                      > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                      >
                      >
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