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  • nichabrad
    Hi, my son is 7 and has a feeding tube too. He has no sucking reflex. He has severe AMC and I have it mildly. He inherited it from me. Feel free to email me if
    Message 1 of 28 , Jun 3, 2005
      Hi, my son is 7 and has a feeding tube too. He has no sucking reflex.
      He has severe AMC and I have it mildly. He inherited it from me. Feel
      free to email me if you want to talk. :)


      --- In arthrogryposissupportgroup@yahoogroups.com, "Marlene"
      <lilgsmomndad@s...> wrote:
      > Hi everyone. My name is Marlene. My daughter Savannah is 2 months
      old
      > and has arthrogryposis. This is me and my husband's second child and
      > our son was born normal. Everything is new to us and can be pretty
      > stressful. My daughter has club feet, feeding tube, her thumbs go
      > inward, and they said she has dysmorphic features. She looks normal
      > and beautiful to me though. I am hoping I will learn a lot from
      > everyone and I am hoping to maybe feel more at ease with everything.
      > Thank you.
    • chhat05
      Hello, my name is Michelle. My son Connor 2 and 1/2 yrs old has arthrogryposis, amniotic banding syndrome and dysphagia. My son had to get a feeding tube at
      Message 2 of 28 , Jun 6, 2005
        Hello, my name is Michelle. My son Connor 2 and 1/2 yrs old has
        arthrogryposis, amniotic banding syndrome and dysphagia. My son had
        to get a feeding tube at 3 weeks old. He had no suck reflex either.
        He did alot of vomiting in the last couple of years. He seems to
        have let up recently, I guess it just took time. My son has club
        feet also and bands around his ankles and wrists. His right hand
        has his index and middle finger not all the way grown and also the
        middle finger was on top of the index finger. He had surgery to fix
        that as well as the banding around the ankles and fix the index toe
        on his right toe. He also had surgery to fix his club feet. His
        toes are nubs, or balls. We are still working on his feeding
        problems. We have other kids as well that don't have any of these
        problems. He doesn't walk or crawl- he does scoot though. He sat
        up on his own at 2 years old. He is our little miracle- he is very
        precious and everybody thinks he is a funny little guy. I am also
        available if you want to email me. I am new to this web site as of
        about an hour ago, I didn't even know it existed. Looking forward
        to meeting people that know about arthrogryposis.





        --- In arthrogryposissupportgroup@yahoogroups.com, "nichabrad"
        <nichabrad@y...> wrote:
        > Hi, my son is 7 and has a feeding tube too. He has no sucking
        reflex.
        > He has severe AMC and I have it mildly. He inherited it from me.
        Feel
        > free to email me if you want to talk. :)
        >
        >
        > --- In arthrogryposissupportgroup@yahoogroups.com, "Marlene"
        > <lilgsmomndad@s...> wrote:
        > > Hi everyone. My name is Marlene. My daughter Savannah is 2
        months
        > old
        > > and has arthrogryposis. This is me and my husband's second child
        and
        > > our son was born normal. Everything is new to us and can be
        pretty
        > > stressful. My daughter has club feet, feeding tube, her thumbs
        go
        > > inward, and they said she has dysmorphic features. She looks
        normal
        > > and beautiful to me though. I am hoping I will learn a lot from
        > > everyone and I am hoping to maybe feel more at ease with
        everything.
        > > Thank you.
      • misskatyoak
        hi everyone, i was here quite a while ago but with school i havnt been as active as i would like to be. my name is katherine and i am 21 and i have
        Message 3 of 28 , Mar 12, 2007
          hi everyone, i was here quite a while ago but with school i havnt been
          as active as i would like to be. my name is katherine and i am 21 and i
          have arthrogryposis. i dont really know much about it because it hasnt
          really affected me that much. i have had to have 4 surgeries on my
          hands and feet to make them bend normally and not curl under as much
          but i use them normally now and i am able to do everything myself. when
          i was born my fingers were in fists against my chest and my feet were
          against my ankles. now i walk with a limp and i am a little off balance
          but i am able to do everything myself and hopefully i wont have to do
          anything more. the thing that affectes me most is scoliosis, i have it
          kinda bad, i had to have a metal rod attached to my spine to keep me
          from being hunched over. anyway, the reason i am posting is because i
          wanted to let everyone know that i am here to talk to people about what
          its like to have arthroryposis if anyone wants another person to just
          ask questions or anything really. it doesnt matter, i am here to help.
        • Naomi
          Hi Katherine. Thank you so much for writting. My 4 year old daughter has arthrogryposis and more often than not I worry about her future. Will she get picked
          Message 4 of 28 , Mar 13, 2007
            Hi Katherine. Thank you so much for writting. My 4 year old daughter has
            arthrogryposis and more often than not I worry about her future. Will
            she get picked on if she goes to public school, should I send her to a
            "special needs" school, if I send her to a "special" school will it be
            hurting her more than it will be helping, will she be able to be self
            reliant? These questions and thousands more run through my head
            everynight and I can't help but wonder if I'm making the right desicions
            for her. Right now she is going to a normal daycare. She's been going to
            the same one for 3 years now, the kids there now about her condition and
            help her around when she needs it. I'm sorry let me back up and tell you
            about my Savannah, She was born through scheduled c-section at full
            term. This was done because while I was pregnat they noticed she had
            dwafism and wanted neonatal specialists there in case there were ant
            complications. During delivery we found out about the arthrogryposis.
            When I first saw my daughter her feet were curled up like yours, she had
            bilateral club foot, her legs were in the "Indian Style" sitting
            position and pressed up against her stomach, I didn't even notice her
            left arm didn't bend until her daddy mentioned it to me later that day.
            When she was one week old they pulled her legs straight and placed them
            in casts with a bar between her legs, at 6 months she went in for her
            first surgery to fix her feet, at one year later she went in for hip
            surgery since one was out of place and there was a flat bone where it's
            socket needed to be. She is now able to walk a little with her maffos
            and a walker. However, lately it seems she's been getting discouraged. I
            went to pick her up from daycare one day and she just looked at me and
            said" Mommy, I can't walk" I almost cried immediatly. Somehow I managed
            to keep it together until I got into the car and let it all unleash. The
            tears wouldn't stop. Until that one moment she had been my little
            trooper, nothing could keep her down or hold her back. I love my
            daughter with all my heart and I just want her to be happy. Please,
            whatever you can tell me to help us get through this will help. Thank
            you.

            --- In arthrogryposissupportgroup@yahoogroups.com, "misskatyoak"
            <misskatyoak@...> wrote:
            >
            > hi everyone, i was here quite a while ago but with school i havnt been
            > as active as i would like to be. my name is katherine and i am 21 and
            i
            > have arthrogryposis. i dont really know much about it because it hasnt
            > really affected me that much. i have had to have 4 surgeries on my
            > hands and feet to make them bend normally and not curl under as much
            > but i use them normally now and i am able to do everything myself.
            when
            > i was born my fingers were in fists against my chest and my feet were
            > against my ankles. now i walk with a limp and i am a little off
            balance
            > but i am able to do everything myself and hopefully i wont have to do
            > anything more. the thing that affectes me most is scoliosis, i have it
            > kinda bad, i had to have a metal rod attached to my spine to keep me
            > from being hunched over. anyway, the reason i am posting is because i
            > wanted to let everyone know that i am here to talk to people about
            what
            > its like to have arthroryposis if anyone wants another person to just
            > ask questions or anything really. it doesnt matter, i am here to help.
            >
          • heidi feliciano
            Hi Naomi, My son is 5yrs old with arthrogryposis in his arms and legs he drives a powerchair around. He was also in a school/daycare since he was 1yrs old.The
            Message 5 of 28 , Mar 16, 2007
              Hi Naomi,
              My son is 5yrs old with arthrogryposis in his arms and legs he drives a powerchair around. He was also in a school/daycare since he was 1yrs old.The kids there were great!!!! to they helped him so much I was scared to leave. But now he goes to a regular school, he is in a PI class. (physically impaired) the kids in there have no mentally disability there are very few schools in the area that offer it. At the beginning of the year I went to IEP meeting were the distric and u get together and discuss what u want for her and they place her in the best school for her. You should call your local school and ask them about getting an IEP meeting (department of exceptional student education). My son is doing so well. I love it!!!!!! He also recieves therapy in school. What state do you live in? I live in florida maybe I could help you.

              God Bless!!! Heidi
              Naomi <sosinphilly@...> wrote:

              Hi Katherine. Thank you so much for writting. My 4 year old daughter has
              arthrogryposis and more often than not I worry about her future. Will
              she get picked on if she goes to public school, should I send her to a
              "special needs" school, if I send her to a "special" school will it be
              hurting her more than it will be helping, will she be able to be self
              reliant? These questions and thousands more run through my head
              everynight and I can't help but wonder if I'm making the right desicions
              for her. Right now she is going to a normal daycare. She's been going to
              the same one for 3 years now, the kids there now about her condition and
              help her around when she needs it. I'm sorry let me back up and tell you
              about my Savannah, She was born through scheduled c-section at full
              term. This was done because while I was pregnat they noticed she had
              dwafism and wanted neonatal specialists there in case there were ant
              complications. During delivery we found out about the arthrogryposis.
              When I first saw my daughter her feet were curled up like yours, she had
              bilateral club foot, her legs were in the "Indian Style" sitting
              position and pressed up against her stomach, I didn't even notice her
              left arm didn't bend until her daddy mentioned it to me later that day.
              When she was one week old they pulled her legs straight and placed them
              in casts with a bar between her legs, at 6 months she went in for her
              first surgery to fix her feet, at one year later she went in for hip
              surgery since one was out of place and there was a flat bone where it's
              socket needed to be. She is now able to walk a little with her maffos
              and a walker. However, lately it seems she's been getting discouraged. I
              went to pick her up from daycare one day and she just looked at me and
              said" Mommy, I can't walk" I almost cried immediatly. Somehow I managed
              to keep it together until I got into the car and let it all unleash. The
              tears wouldn't stop. Until that one moment she had been my little
              trooper, nothing could keep her down or hold her back. I love my
              daughter with all my heart and I just want her to be happy. Please,
              whatever you can tell me to help us get through this will help. Thank
              you.

              --- In arthrogryposissupportgroup@yahoogroups.com, "misskatyoak"
              <misskatyoak@...> wrote:
              >
              > hi everyone, i was here quite a while ago but with school i havnt been
              > as active as i would like to be. my name is katherine and i am 21 and
              i
              > have arthrogryposis. i dont really know much about it because it hasnt
              > really affected me that much. i have had to have 4 surgeries on my
              > hands and feet to make them bend normally and not curl under as much
              > but i use them normally now and i am able to do everything myself.
              when
              > i was born my fingers were in fists against my chest and my feet were
              > against my ankles. now i walk with a limp and i am a little off
              balance
              > but i am able to do everything myself and hopefully i wont have to do
              > anything more. the thing that affectes me most is scoliosis, i have it
              > kinda bad, i had to have a metal rod attached to my spine to keep me
              > from being hunched over. anyway, the reason i am posting is because i
              > wanted to let everyone know that i am here to talk to people about
              what
              > its like to have arthroryposis if anyone wants another person to just
              > ask questions or anything really. it doesnt matter, i am here to help.
              >






              ---------------------------------
              Get your own web address.
              Have a HUGE year through Yahoo! Small Business.

              [Non-text portions of this message have been removed]
            • jkleps6
              My name is jessica and am 27 years old who has arthrogryposis. It effects my shoulders, hips, and can t bend my knees all the way. I never knew anyone else
              Message 6 of 28 , Aug 7 7:29 PM
                My name is jessica and am 27 years old who has arthrogryposis. It
                effects my shoulders, hips, and can't bend my knees all the way. I
                never knew anyone else with this disease. I actually thought I was
                alone in this. Doctors told my parents I would never walk, but I proved
                them wrong. I have lived a pretty normal life and wasn't going to let
                this stop me from living my life.
              • karawattleworth
                does anyone have distal arthrogryposis type one A?
                Message 7 of 28 , Mar 9, 2008
                  does anyone have distal arthrogryposis type one A?
                • John McGreevy
                  Hi, there are 9 members of my family with distal arthrogryosis type5 , not one A. How does one A affect you. Would be interested to know the difference.
                  Message 8 of 28 , Mar 10, 2008
                    Hi, there are 9 members of my family with distal arthrogryosis type5 , not one A. How does one A affect you. Would be interested to know the difference.

                    Cheers

                    Janine
                    New Zealand


                    ----- Original Message ----
                    From: karawattleworth <karawattleworth@...>
                    To: arthrogryposissupportgroup@yahoogroups.com
                    Sent: Monday, March 10, 2008 11:08:13 AM
                    Subject: [Arthrogryposis Support Group] hello

                    does anyone have distal arthrogryposis type one A?





                    ____________________________________________________________________________________
                    Looking for last minute shopping deals?
                    Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping

                    [Non-text portions of this message have been removed]
                  • Suraya Nordin
                    Hi there, my name is Suraya and am leaving in Malaysia. I have a daughter named Sofia and she is four years old. My daughter was born with AMC which primarily
                    Message 9 of 28 , Mar 27, 2008
                      Hi there, my name is Suraya and am leaving in
                      Malaysia. I have a daughter named Sofia and she is
                      four years old. My daughter was born with AMC which
                      primarily affects her lower limbs. Her doctors here
                      diagnosed Sofia with AMC but never classify the type
                      of AMC. Appreciate if you can tell me how the
                      classification is determined.

                      Thanks.

                      --- John McGreevy <jmcgreevy78@...> wrote:

                      > Hi, there are 9 members of my family with distal
                      > arthrogryosis type5 , not one A. How does one A
                      > affect you. Would be interested to know the
                      > difference.
                      >
                      > Cheers
                      >
                      > Janine
                      > New Zealand
                      >
                      >
                      > ----- Original Message ----
                      > From: karawattleworth <karawattleworth@...>
                      > To: arthrogryposissupportgroup@yahoogroups.com
                      > Sent: Monday, March 10, 2008 11:08:13 AM
                      > Subject: [Arthrogryposis Support Group] hello
                      >
                      > does anyone have distal arthrogryposis type one A?
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                      ____________________________________________________________________________________
                      > Looking for last minute shopping deals?
                      > Find them fast with Yahoo! Search.
                      >
                      http://tools.search.yahoo.com/newsearch/category.php?category=shopping
                      >
                      > [Non-text portions of this message have been
                      > removed]
                      >
                      >


                      Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old


                      ____________________________________________________________________________________
                      Never miss a thing. Make Yahoo your home page.
                      http://www.yahoo.com/r/hs
                    • Beverly R Hanset-Burch
                      Hi my daughter Bonnie will be four next month. She has a positional form, meaning I have two wombs and she was in both. As she gets her joints mobile and
                      Message 10 of 28 , Mar 27, 2008
                        Hi my daughter Bonnie will be four next month. She has a positional form, meaning I have two wombs and she was in both. As she gets her joints mobile and muscles stronger she gets stronger all around.

                        ----- Original Message -----
                        From: Suraya Nordin
                        To: arthrogryposissupportgroup@yahoogroups.com
                        Sent: Thursday, March 27, 2008 7:35 AM
                        Subject: Re: [Arthrogryposis Support Group] hello



                        Hi there, my name is Suraya and am leaving in
                        Malaysia. I have a daughter named Sofia and she is
                        four years old. My daughter was born with AMC which
                        primarily affects her lower limbs. Her doctors here
                        diagnosed Sofia with AMC but never classify the type
                        of AMC. Appreciate if you can tell me how the
                        classification is determined.

                        Thanks.

                        --- John McGreevy <jmcgreevy78@...> wrote:

                        > Hi, there are 9 members of my family with distal
                        > arthrogryosis type5 , not one A. How does one A
                        > affect you. Would be interested to know the
                        > difference.
                        >
                        > Cheers
                        >
                        > Janine
                        > New Zealand
                        >
                        >
                        > ----- Original Message ----
                        > From: karawattleworth <karawattleworth@...>
                        > To: arthrogryposissupportgroup@yahoogroups.com
                        > Sent: Monday, March 10, 2008 11:08:13 AM
                        > Subject: [Arthrogryposis Support Group] hello
                        >
                        > does anyone have distal arthrogryposis type one A?
                        >
                        >
                        >
                        >
                        >
                        >
                        >
                        __________________________________________________________
                        > Looking for last minute shopping deals?
                        > Find them fast with Yahoo! Search.
                        >
                        http://tools.search.yahoo.com/newsearch/category.php?category=shopping
                        >
                        > [Non-text portions of this message have been
                        > removed]
                        >
                        >

                        Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old

                        __________________________________________________________
                        Never miss a thing. Make Yahoo your home page.
                        http://www.yahoo.com/r/hs





                        [Non-text portions of this message have been removed]
                      • Suraya Nordin
                        Hi there everyone, my husband and I are planning to bring our Sofia, 4 yrs old with AMC to Melbourne, Australia. Has anyone been referred to any specialist in
                        Message 11 of 28 , Apr 29, 2008
                          Hi there everyone, my husband and I are planning to bring our Sofia, 4 yrs old with AMC to Melbourne, Australia. Has anyone been referred to any specialist in the Melbourne Children Hospital who specializes in AMC. We are planning to go in mid May. Thanking you in advance for the info.

                          Rgds,

                          Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old


                          --- On Thu, 3/27/08, Beverly R Hanset-Burch <beverlyhansetburch@...> wrote:

                          > From: Beverly R Hanset-Burch <beverlyhansetburch@...>
                          > Subject: Re: [Arthrogryposis Support Group] hello
                          > To: arthrogryposissupportgroup@yahoogroups.com
                          > Date: Thursday, March 27, 2008, 2:52 PM
                          > Hi my daughter Bonnie will be four next month. She has a
                          > positional form, meaning I have two wombs and she was in
                          > both. As she gets her joints mobile and muscles stronger
                          > she gets stronger all around.
                          >
                          > ----- Original Message -----
                          > From: Suraya Nordin
                          > To: arthrogryposissupportgroup@yahoogroups.com
                          > Sent: Thursday, March 27, 2008 7:35 AM
                          > Subject: Re: [Arthrogryposis Support Group] hello
                          >
                          >
                          >
                          > Hi there, my name is Suraya and am leaving in
                          > Malaysia. I have a daughter named Sofia and she is
                          > four years old. My daughter was born with AMC which
                          > primarily affects her lower limbs. Her doctors here
                          > diagnosed Sofia with AMC but never classify the type
                          > of AMC. Appreciate if you can tell me how the
                          > classification is determined.
                          >
                          > Thanks.
                          >
                          > --- John McGreevy <jmcgreevy78@...> wrote:
                          >
                          > > Hi, there are 9 members of my family with distal
                          > > arthrogryosis type5 , not one A. How does one A
                          > > affect you. Would be interested to know the
                          > > difference.
                          > >
                          > > Cheers
                          > >
                          > > Janine
                          > > New Zealand
                          > >
                          > >
                          > > ----- Original Message ----
                          > > From: karawattleworth
                          > <karawattleworth@...>
                          > > To: arthrogryposissupportgroup@yahoogroups.com
                          > > Sent: Monday, March 10, 2008 11:08:13 AM
                          > > Subject: [Arthrogryposis Support Group] hello
                          > >
                          > > does anyone have distal arthrogryposis type one A?
                          > >
                          > >
                          > >
                          > >
                          > >
                          > >
                          > >
                          >
                          > __________________________________________________________
                          > > Looking for last minute shopping deals?
                          > > Find them fast with Yahoo! Search.
                          > >
                          >
                          > http://tools.search.yahoo.com/newsearch/category.php?category=shopping
                          > >
                          > > [Non-text portions of this message have been
                          > > removed]
                          > >
                          > >
                          >
                          > Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old
                          >
                          >
                          > __________________________________________________________
                          > Never miss a thing. Make Yahoo your home page.
                          > http://www.yahoo.com/r/hs
                          >
                          >
                          >
                          >
                          >
                          > [Non-text portions of this message have been removed]


                          ____________________________________________________________________________________
                          Be a better friend, newshound, and
                          know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                        • vicki blah
                          Leo donnan is a good specialist at childrens hospital in melbourne he is pretty busy u might have to ring to make sure he available in may To:
                          Message 12 of 28 , Apr 30, 2008
                            Leo donnan is a good specialist at childrens hospital in melbourne he is pretty busy u might have to ring to make sure he available in may


                            To: arthrogryposissupportgroup@yahoogroups.comFrom: snordinmy@...: Tue, 29 Apr 2008 22:32:32 -0700Subject: [Arthrogryposis Support Group] A specialist in AMC in Melbourne Children Hospital - Help!




                            Hi there everyone, my husband and I are planning to bring our Sofia, 4 yrs old with AMC to Melbourne, Australia. Has anyone been referred to any specialist in the Melbourne Children Hospital who specializes in AMC. We are planning to go in mid May. Thanking you in advance for the info.Rgds,Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old--- On Thu, 3/27/08, Beverly R Hanset-Burch <beverlyhansetburch@...> wrote:> From: Beverly R Hanset-Burch <beverlyhansetburch@...>> Subject: Re: [Arthrogryposis Support Group] hello> To: arthrogryposissupportgroup@yahoogroups.com> Date: Thursday, March 27, 2008, 2:52 PM> Hi my daughter Bonnie will be four next month. She has a> positional form, meaning I have two wombs and she was in> both. As she gets her joints mobile and muscles stronger> she gets stronger all around.> > ----- Original Message ----- > From: Suraya Nordin > To: arthrogryposissupportgroup@yahoogroups.com > Sent: Thursday, March 27, 2008 7:35 AM> Subject: Re: [Arthrogryposis Support Group] hello> > > > Hi there, my name is Suraya and am leaving in> Malaysia. I have a daughter named Sofia and she is> four years old. My daughter was born with AMC which> primarily affects her lower limbs. Her doctors here> diagnosed Sofia with AMC but never classify the type> of AMC. Appreciate if you can tell me how the> classification is determined.> > Thanks.> > --- John McGreevy <jmcgreevy78@...> wrote:> > > Hi, there are 9 members of my family with distal> > arthrogryosis type5 , not one A. How does one A> > affect you. Would be interested to know the> > difference.> > > > Cheers> > > > Janine > > New Zealand > > > > > > ----- Original Message ----> > From: karawattleworth> <karawattleworth@...>> > To: arthrogryposissupportgroup@yahoogroups.com> > Sent: Monday, March 10, 2008 11:08:13 AM> > Subject: [Arthrogryposis Support Group] hello> > > > does anyone have distal arthrogryposis type one A?> > > > > > > > > > > > > >> > __________________________________________________________> > Looking for last minute shopping deals? > > Find them fast with Yahoo! Search. > >> > http://tools.search.yahoo.com/newsearch/category.php?category=shopping> > > > [Non-text portions of this message have been> > removed]> > > > > > Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old> > > __________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs> > > > > > [Non-text portions of this message have been removed]__________________________________________________________Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ







                            [Non-text portions of this message have been removed]
                          • Suraya Nordin
                            Hi Vicki, tqsm for the info. It s much appreciated. Rgds Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old ...
                            Message 13 of 28 , May 3, 2008
                              Hi Vicki, tqsm for the info. It's much appreciated. Rgds

                              Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old


                              --- On Thu, 5/1/08, vicki blah <vlbrown76@...> wrote:

                              > From: vicki blah <vlbrown76@...>
                              > Subject: RE: [Arthrogryposis Support Group] A specialist in AMC in Melbourne Children Hospital - Help!
                              > To: arthrogryposissupportgroup@yahoogroups.com
                              > Date: Thursday, May 1, 2008, 1:00 AM
                              > Leo donnan is a good specialist at childrens hospital in
                              > melbourne he is pretty busy u might have to ring to make
                              > sure he available in may
                              >
                              >
                              > To: arthrogryposissupportgroup@yahoogroups.comFrom:
                              > snordinmy@...: Tue, 29 Apr 2008 22:32:32
                              > -0700Subject: [Arthrogryposis Support Group] A specialist
                              > in AMC in Melbourne Children Hospital - Help!
                              >
                              >
                              >
                              >
                              > Hi there everyone, my husband and I are planning to bring
                              > our Sofia, 4 yrs old with AMC to Melbourne, Australia. Has
                              > anyone been referred to any specialist in the Melbourne
                              > Children Hospital who specializes in AMC. We are planning
                              > to go in mid May. Thanking you in advance for the
                              > info.Rgds,Suraya, mother to Merissa, 8yrs old and Sofia,
                              > 4yrs old--- On Thu, 3/27/08, Beverly R Hanset-Burch
                              > <beverlyhansetburch@...> wrote:> From:
                              > Beverly R Hanset-Burch
                              > <beverlyhansetburch@...>> Subject: Re:
                              > [Arthrogryposis Support Group] hello> To:
                              > arthrogryposissupportgroup@yahoogroups.com> Date:
                              > Thursday, March 27, 2008, 2:52 PM> Hi my daughter Bonnie
                              > will be four next month. She has a> positional form,
                              > meaning I have two wombs and she was in> both. As she
                              > gets her joints mobile and muscles stronger> she gets
                              > stronger all around.> > ----- Original Message -----
                              > > From: Suraya Nordin > To:
                              > arthrogryposissupportgroup@yahoogroups.com > Sent:
                              > Thursday, March 27, 2008 7:35 AM> Subject: Re:
                              > [Arthrogryposis Support Group] hello> > > > Hi
                              > there, my name is Suraya and am leaving in> Malaysia. I
                              > have a daughter named Sofia and she is> four years old.
                              > My daughter was born with AMC which> primarily affects
                              > her lower limbs. Her doctors here> diagnosed Sofia with
                              > AMC but never classify the type> of AMC. Appreciate if
                              > you can tell me how the> classification is
                              > determined.> > Thanks.> > --- John McGreevy
                              > <jmcgreevy78@...> wrote:> > > Hi,
                              > there are 9 members of my family with distal> >
                              > arthrogryosis type5 , not one A. How does one A> >
                              > affect you. Would be interested to know the> >
                              > difference.> > > > Cheers> > > >
                              > Janine > > New Zealand > > > > > >
                              > ----- Original Message ----> > From:
                              > karawattleworth> <karawattleworth@...>>
                              > > To: arthrogryposissupportgroup@yahoogroups.com>
                              > > Sent: Monday, March 10, 2008 11:08:13 AM> >
                              > Subject: [Arthrogryposis Support Group] hello> > >
                              > > does anyone have distal arthrogryposis type one A?>
                              > > > > > > > > > > > > >
                              > >> >
                              > __________________________________________________________>
                              > > Looking for last minute shopping deals? > > Find
                              > them fast with Yahoo! Search. > >> >
                              > http://tools.search.yahoo.com/newsearch/category.php?category=shopping>
                              > > > > [Non-text portions of this message have
                              > been> > removed]> > > > > > Suraya,
                              > mother to Merissa, 8yrs old and Sofia, 4yrs old> >
                              > >
                              > __________________________________________________________>
                              > Never miss a thing. Make Yahoo your home page. >
                              > http://www.yahoo.com/r/hs> > > > > >
                              > [Non-text portions of this message have been
                              > removed]__________________________________________________________Be
                              > a better friend, newshound, and know-it-all with Yahoo!
                              > Mobile. Try it now.
                              > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                              >
                              >
                              >
                              >
                              >
                              >
                              >
                              > [Non-text portions of this message have been removed]


                              ____________________________________________________________________________________
                              Be a better friend, newshound, and
                              know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                            • Suraya Nordin
                              I have tried making an appointment and he is only available in mid june. Since I will be there from end may onwards, do you happen to know of any arthryposis
                              Message 14 of 28 , May 5, 2008
                                I have tried making an appointment and he is only available in mid june. Since I will be there from end may onwards, do you happen to know of any arthryposis centre(s) in melbourne that I can visit? I've been going online to search but to no avail. Thx

                                Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old


                                --- On Thu, 5/1/08, vicki blah <vlbrown76@...> wrote:

                                > From: vicki blah <vlbrown76@...>
                                > Subject: RE: [Arthrogryposis Support Group] A specialist in AMC in Melbourne Children Hospital - Help!
                                > To: arthrogryposissupportgroup@yahoogroups.com
                                > Date: Thursday, May 1, 2008, 1:00 AM
                                > Leo donnan is a good specialist at childrens hospital in
                                > melbourne he is pretty busy u might have to ring to make
                                > sure he available in may
                                >
                                >
                                > To: arthrogryposissupportgroup@yahoogroups.comFrom:
                                > snordinmy@...: Tue, 29 Apr 2008 22:32:32
                                > -0700Subject: [Arthrogryposis Support Group] A specialist
                                > in AMC in Melbourne Children Hospital - Help!
                                >
                                >
                                >
                                >
                                > Hi there everyone, my husband and I are planning to bring
                                > our Sofia, 4 yrs old with AMC to Melbourne, Australia. Has
                                > anyone been referred to any specialist in the Melbourne
                                > Children Hospital who specializes in AMC. We are planning
                                > to go in mid May. Thanking you in advance for the
                                > info.Rgds,Suraya, mother to Merissa, 8yrs old and Sofia,
                                > 4yrs old--- On Thu, 3/27/08, Beverly R Hanset-Burch
                                > <beverlyhansetburch@...> wrote:> From:
                                > Beverly R Hanset-Burch
                                > <beverlyhansetburch@...>> Subject: Re:
                                > [Arthrogryposis Support Group] hello> To:
                                > arthrogryposissupportgroup@yahoogroups.com> Date:
                                > Thursday, March 27, 2008, 2:52 PM> Hi my daughter Bonnie
                                > will be four next month. She has a> positional form,
                                > meaning I have two wombs and she was in> both. As she
                                > gets her joints mobile and muscles stronger> she gets
                                > stronger all around.> > ----- Original Message -----
                                > > From: Suraya Nordin > To:
                                > arthrogryposissupportgroup@yahoogroups.com > Sent:
                                > Thursday, March 27, 2008 7:35 AM> Subject: Re:
                                > [Arthrogryposis Support Group] hello> > > > Hi
                                > there, my name is Suraya and am leaving in> Malaysia. I
                                > have a daughter named Sofia and she is> four years old.
                                > My daughter was born with AMC which> primarily affects
                                > her lower limbs. Her doctors here> diagnosed Sofia with
                                > AMC but never classify the type> of AMC. Appreciate if
                                > you can tell me how the> classification is
                                > determined.> > Thanks.> > --- John McGreevy
                                > <jmcgreevy78@...> wrote:> > > Hi,
                                > there are 9 members of my family with distal> >
                                > arthrogryosis type5 , not one A. How does one A> >
                                > affect you. Would be interested to know the> >
                                > difference.> > > > Cheers> > > >
                                > Janine > > New Zealand > > > > > >
                                > ----- Original Message ----> > From:
                                > karawattleworth> <karawattleworth@...>>
                                > > To: arthrogryposissupportgroup@yahoogroups.com>
                                > > Sent: Monday, March 10, 2008 11:08:13 AM> >
                                > Subject: [Arthrogryposis Support Group] hello> > >
                                > > does anyone have distal arthrogryposis type one A?>
                                > > > > > > > > > > > > >
                                > >> >
                                > __________________________________________________________>
                                > > Looking for last minute shopping deals? > > Find
                                > them fast with Yahoo! Search. > >> >
                                > http://tools.search.yahoo.com/newsearch/category.php?category=shopping>
                                > > > > [Non-text portions of this message have
                                > been> > removed]> > > > > > Suraya,
                                > mother to Merissa, 8yrs old and Sofia, 4yrs old> >
                                > >
                                > __________________________________________________________>
                                > Never miss a thing. Make Yahoo your home page. >
                                > http://www.yahoo.com/r/hs> > > > > >
                                > [Non-text portions of this message have been
                                > removed]__________________________________________________________Be
                                > a better friend, newshound, and know-it-all with Yahoo!
                                > Mobile. Try it now.
                                > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                                >
                                >
                                >
                                >
                                >
                                >
                                >
                                > [Non-text portions of this message have been removed]


                                ____________________________________________________________________________________
                                Be a better friend, newshound, and
                                know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                              • vicki blah
                                the only other doctor that may be able to help is scott fletcher in burnie tasmania he looked after my son ,no doctor in hobart would touch him, he & leo
                                Message 15 of 28 , May 7, 2008
                                  the only other doctor that may be able to help is scott fletcher in burnie tasmania he looked after my son ,no doctor in hobart would touch him, he & leo donnan did their training at the same hospital ,i dont know of any arthrogryposis clinics sorry thats the best i can do good luck with dr fletcher he is a good man


                                  To: arthrogryposissupportgroup@yahoogroups.comFrom: snordinmy@...: Mon, 5 May 2008 22:14:36 -0700Subject: RE: [Arthrogryposis Support Group] A specialist in AMC in Melbourne Children Hospital - Help!




                                  I have tried making an appointment and he is only available in mid june. Since I will be there from end may onwards, do you happen to know of any arthryposis centre(s) in melbourne that I can visit? I've been going online to search but to no avail. ThxSuraya, mother to Merissa, 8yrs old and Sofia, 4yrs old--- On Thu, 5/1/08, vicki blah <vlbrown76@...> wrote:> From: vicki blah <vlbrown76@...>> Subject: RE: [Arthrogryposis Support Group] A specialist in AMC in Melbourne Children Hospital - Help!> To: arthrogryposissupportgroup@yahoogroups.com> Date: Thursday, May 1, 2008, 1:00 AM> Leo donnan is a good specialist at childrens hospital in> melbourne he is pretty busy u might have to ring to make> sure he available in may > > > To: arthrogryposissupportgroup@yahoogroups.comFrom:> snordinmy@...: Tue, 29 Apr 2008 22:32:32> -0700Subject: [Arthrogryposis Support Group] A specialist> in AMC in Melbourne Children Hospital - Help!> > > > > Hi there everyone, my husband and I are planning to bring> our Sofia, 4 yrs old with AMC to Melbourne, Australia. Has> anyone been referred to any specialist in the Melbourne> Children Hospital who specializes in AMC. We are planning> to go in mid May. Thanking you in advance for the> info.Rgds,Suraya, mother to Merissa, 8yrs old and Sofia,> 4yrs old--- On Thu, 3/27/08, Beverly R Hanset-Burch> <beverlyhansetburch@...> wrote:> From:> Beverly R Hanset-Burch> <beverlyhansetburch@...>> Subject: Re:> [Arthrogryposis Support Group] hello> To:> arthrogryposissupportgroup@yahoogroups.com> Date:> Thursday, March 27, 2008, 2:52 PM> Hi my daughter Bonnie> will be four next month. She has a> positional form,> meaning I have two wombs and she was in> both. As she> gets her joints mobile and muscles stronger> she gets> stronger all around.> > ----- Original Message -----> > From: Suraya Nordin > To:> arthrogryposissupportgroup@yahoogroups.com > Sent:> Thursday, March 27, 2008 7:35 AM> Subject: Re:> [Arthrogryposis Support Group] hello> > > > Hi> there, my name is Suraya and am leaving in> Malaysia. I> have a daughter named Sofia and she is> four years old.> My daughter was born with AMC which> primarily affects> her lower limbs. Her doctors here> diagnosed Sofia with> AMC but never classify the type> of AMC. Appreciate if> you can tell me how the> classification is> determined.> > Thanks.> > --- John McGreevy> <jmcgreevy78@...> wrote:> > > Hi,> there are 9 members of my family with distal> >> arthrogryosis type5 , not one A. How does one A> >> affect you. Would be interested to know the> >> difference.> > > > Cheers> > > >> Janine > > New Zealand > > > > > >> ----- Original Message ----> > From:> karawattleworth> <karawattleworth@...>>> > To: arthrogryposissupportgroup@yahoogroups.com>> > Sent: Monday, March 10, 2008 11:08:13 AM> >> Subject: [Arthrogryposis Support Group] hello> > >> > does anyone have distal arthrogryposis type one A?>> > > > > > > > > > > > >> >> >> __________________________________________________________>> > Looking for last minute shopping deals? > > Find> them fast with Yahoo! Search. > >> >> http://tools.search.yahoo.com/newsearch/category.php?category=shopping>> > > > [Non-text portions of this message have> been> > removed]> > > > > > Suraya,> mother to Merissa, 8yrs old and Sofia, 4yrs old> >> >> __________________________________________________________>> Never miss a thing. Make Yahoo your home page. >> http://www.yahoo.com/r/hs> > > > > >> [Non-text portions of this message have been> removed]__________________________________________________________Be> a better friend, newshound, and know-it-all with Yahoo!> Mobile. Try it now.> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > [Non-text portions of this message have been removed]__________________________________________________________Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ







                                  [Non-text portions of this message have been removed]
                                • Suraya Nordin
                                  how far is Burnie Tasmania from Melbourne? BTW how old is your son? Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old ...
                                  Message 16 of 28 , May 8, 2008
                                    how far is Burnie Tasmania from Melbourne? BTW how old is your son?

                                    Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old


                                    --- On Wed, 5/7/08, vicki blah <vlbrown76@...> wrote:

                                    > From: vicki blah <vlbrown76@...>
                                    > Subject: RE: [Arthrogryposis Support Group] A specialist in AMC in Melbourne Children Hospital - Help!
                                    > To: arthrogryposissupportgroup@yahoogroups.com
                                    > Date: Wednesday, May 7, 2008, 8:34 AM
                                    > the only other doctor that may be able to help is scott
                                    > fletcher in burnie tasmania he looked after my son ,no
                                    > doctor in hobart would touch him, he & leo donnan did
                                    > their training at the same hospital ,i dont know of any
                                    > arthrogryposis clinics sorry thats the best i can do good
                                    > luck with dr fletcher he is a good man
                                    >
                                    >
                                    > To: arthrogryposissupportgroup@yahoogroups.comFrom:
                                    > snordinmy@...: Mon, 5 May 2008 22:14:36
                                    > -0700Subject: RE: [Arthrogryposis Support Group] A
                                    > specialist in AMC in Melbourne Children Hospital - Help!
                                    >
                                    >
                                    >
                                    >
                                    > I have tried making an appointment and he is only available
                                    > in mid june. Since I will be there from end may onwards, do
                                    > you happen to know of any arthryposis centre(s) in
                                    > melbourne that I can visit? I've been going online to
                                    > search but to no avail. ThxSuraya, mother to Merissa, 8yrs
                                    > old and Sofia, 4yrs old--- On Thu, 5/1/08, vicki blah
                                    > <vlbrown76@...> wrote:> From: vicki blah
                                    > <vlbrown76@...>> Subject: RE:
                                    > [Arthrogryposis Support Group] A specialist in AMC in
                                    > Melbourne Children Hospital - Help!> To:
                                    > arthrogryposissupportgroup@yahoogroups.com> Date:
                                    > Thursday, May 1, 2008, 1:00 AM> Leo donnan is a good
                                    > specialist at childrens hospital in> melbourne he is
                                    > pretty busy u might have to ring to make> sure he
                                    > available in may > > > To:
                                    > arthrogryposissupportgroup@yahoogroups.comFrom:>
                                    > snordinmy@...: Tue, 29 Apr 2008 22:32:32>
                                    > -0700Subject: [Arthrogryposis Support Group] A
                                    > specialist> in AMC in Melbourne Children Hospital -
                                    > Help!> > > > > Hi there everyone, my husband
                                    > and I are planning to bring> our Sofia, 4 yrs old with
                                    > AMC to Melbourne, Australia. Has> anyone been referred
                                    > to any specialist in the Melbourne> Children Hospital
                                    > who specializes in AMC. We are planning> to go in mid
                                    > May. Thanking you in advance for the> info.Rgds,Suraya,
                                    > mother to Merissa, 8yrs old and Sofia,> 4yrs old--- On
                                    > Thu, 3/27/08, Beverly R Hanset-Burch>
                                    > <beverlyhansetburch@...> wrote:> From:>
                                    > Beverly R Hanset-Burch>
                                    > <beverlyhansetburch@...>> Subject: Re:>
                                    > [Arthrogryposis Support Group] hello> To:>
                                    > arthrogryposissupportgroup@yahoogroups.com> Date:>
                                    > Thursday, March 27, 2008, 2:52 PM> Hi my daughter
                                    > Bonnie> will be four next month. She has a>
                                    > positional form,> meaning I have two wombs and she was
                                    > in> both. As she> gets her joints mobile and muscles
                                    > stronger> she gets> stronger all around.> >
                                    > ----- Original Message -----> > From: Suraya Nordin
                                    > > To:> arthrogryposissupportgroup@yahoogroups.com
                                    > > Sent:> Thursday, March 27, 2008 7:35 AM>
                                    > Subject: Re:> [Arthrogryposis Support Group] hello>
                                    > > > > Hi> there, my name is Suraya and am
                                    > leaving in> Malaysia. I> have a daughter named Sofia
                                    > and she is> four years old.> My daughter was born
                                    > with AMC which> primarily affects> her lower limbs.
                                    > Her doctors here> diagnosed Sofia with> AMC but never
                                    > classify the type> of AMC. Appreciate if> you can tell
                                    > me how the> classification is> determined.> >
                                    > Thanks.> > --- John McGreevy>
                                    > <jmcgreevy78@...> wrote:> > > Hi,>
                                    > there are 9 members of my family with distal> >>
                                    > arthrogryosis type5 , not one A. How does one A>
                                    > >> affect you. Would be interested to know the>
                                    > >> difference.> > > > Cheers> >
                                    > > >> Janine > > New Zealand > > >
                                    > > > >> ----- Original Message ----> >
                                    > From:> karawattleworth>
                                    > <karawattleworth@...>>> > To:
                                    > arthrogryposissupportgroup@yahoogroups.com>> >
                                    > Sent: Monday, March 10, 2008 11:08:13 AM> >>
                                    > Subject: [Arthrogryposis Support Group] hello> >
                                    > >> > does anyone have distal arthrogryposis type
                                    > one A?>> > > > > > > > > >
                                    > > > >> >> >>
                                    > __________________________________________________________>>
                                    > > Looking for last minute shopping deals? > >
                                    > Find> them fast with Yahoo! Search. > >>
                                    > >>
                                    > http://tools.search.yahoo.com/newsearch/category.php?category=shopping>>
                                    > > > > [Non-text portions of this message have>
                                    > been> > removed]> > > > > >
                                    > Suraya,> mother to Merissa, 8yrs old and Sofia, 4yrs
                                    > old> >> >>
                                    > __________________________________________________________>>
                                    > Never miss a thing. Make Yahoo your home page. >>
                                    > http://www.yahoo.com/r/hs> > > > > >>
                                    > [Non-text portions of this message have been>
                                    > removed]__________________________________________________________Be>
                                    > a better friend, newshound, and know-it-all with Yahoo!>
                                    > Mobile. Try it now.>
                                    > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                                    > > > > > > > > > [Non-text portions
                                    > of this message have been
                                    > removed]__________________________________________________________Be
                                    > a better friend, newshound, and know-it-all with Yahoo!
                                    > Mobile. Try it now.
                                    > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                                    >
                                    >
                                    >
                                    >
                                    >
                                    >
                                    >
                                    > [Non-text portions of this message have been removed]


                                    ____________________________________________________________________________________
                                    Be a better friend, newshound, and
                                    know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                                  • vicki blah
                                    burnie is about 1hr plane ride from melbourne my son is 11 To: arthrogryposissupportgroup@yahoogroups.comFrom: snordinmy@yahoo.comDate: Thu, 8 May 2008
                                    Message 17 of 28 , May 13, 2008
                                      burnie is about 1hr plane ride from melbourne my son is 11


                                      To: arthrogryposissupportgroup@yahoogroups.comFrom: snordinmy@...: Thu, 8 May 2008 18:25:18 -0700Subject: RE: [Arthrogryposis Support Group] A specialist in AMC in Melbourne Children Hospital - Help!




                                      how far is Burnie Tasmania from Melbourne? BTW how old is your son? Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old--- On Wed, 5/7/08, vicki blah <vlbrown76@...> wrote:> From: vicki blah <vlbrown76@...>> Subject: RE: [Arthrogryposis Support Group] A specialist in AMC in Melbourne Children Hospital - Help!> To: arthrogryposissupportgroup@yahoogroups.com> Date: Wednesday, May 7, 2008, 8:34 AM> the only other doctor that may be able to help is scott> fletcher in burnie tasmania he looked after my son ,no> doctor in hobart would touch him, he & leo donnan did> their training at the same hospital ,i dont know of any> arthrogryposis clinics sorry thats the best i can do good> luck with dr fletcher he is a good man> > > To: arthrogryposissupportgroup@yahoogroups.comFrom:> snordinmy@...: Mon, 5 May 2008 22:14:36> -0700Subject: RE: [Arthrogryposis Support Group] A> specialist in AMC in Melbourne Children Hospital - Help!> > > > > I have tried making an appointment and he is only available> in mid june. Since I will be there from end may onwards, do> you happen to know of any arthryposis centre(s) in> melbourne that I can visit? I've been going online to> search but to no avail. ThxSuraya, mother to Merissa, 8yrs> old and Sofia, 4yrs old--- On Thu, 5/1/08, vicki blah> <vlbrown76@...> wrote:> From: vicki blah> <vlbrown76@...>> Subject: RE:> [Arthrogryposis Support Group] A specialist in AMC in> Melbourne Children Hospital - Help!> To:> arthrogryposissupportgroup@yahoogroups.com> Date:> Thursday, May 1, 2008, 1:00 AM> Leo donnan is a good> specialist at childrens hospital in> melbourne he is> pretty busy u might have to ring to make> sure he> available in may > > > To:> arthrogryposissupportgroup@yahoogroups.comFrom:>> snordinmy@...: Tue, 29 Apr 2008 22:32:32>> -0700Subject: [Arthrogryposis Support Group] A> specialist> in AMC in Melbourne Children Hospital -> Help!> > > > > Hi there everyone, my husband> and I are planning to bring> our Sofia, 4 yrs old with> AMC to Melbourne, Australia. Has> anyone been referred> to any specialist in the Melbourne> Children Hospital> who specializes in AMC. We are planning> to go in mid> May. Thanking you in advance for the> info.Rgds,Suraya,> mother to Merissa, 8yrs old and Sofia,> 4yrs old--- On> Thu, 3/27/08, Beverly R Hanset-Burch>> <beverlyhansetburch@...> wrote:> From:>> Beverly R Hanset-Burch>> <beverlyhansetburch@...>> Subject: Re:>> [Arthrogryposis Support Group] hello> To:>> arthrogryposissupportgroup@yahoogroups.com> Date:>> Thursday, March 27, 2008, 2:52 PM> Hi my daughter> Bonnie> will be four next month. She has a>> positional form,> meaning I have two wombs and she was> in> both. As she> gets her joints mobile and muscles> stronger> she gets> stronger all around.> >> ----- Original Message -----> > From: Suraya Nordin> > To:> arthrogryposissupportgroup@yahoogroups.com> > Sent:> Thursday, March 27, 2008 7:35 AM>> Subject: Re:> [Arthrogryposis Support Group] hello>> > > > Hi> there, my name is Suraya and am> leaving in> Malaysia. I> have a daughter named Sofia> and she is> four years old.> My daughter was born> with AMC which> primarily affects> her lower limbs.> Her doctors here> diagnosed Sofia with> AMC but never> classify the type> of AMC. Appreciate if> you can tell> me how the> classification is> determined.> >> Thanks.> > --- John McGreevy>> <jmcgreevy78@...> wrote:> > > Hi,>> there are 9 members of my family with distal> >>> arthrogryosis type5 , not one A. How does one A>> >> affect you. Would be interested to know the>> >> difference.> > > > Cheers> >> > >> Janine > > New Zealand > > >> > > >> ----- Original Message ----> >> From:> karawattleworth>> <karawattleworth@...>>> > To:> arthrogryposissupportgroup@yahoogroups.com>> >> Sent: Monday, March 10, 2008 11:08:13 AM> >>> Subject: [Arthrogryposis Support Group] hello> >> >> > does anyone have distal arthrogryposis type> one A?>> > > > > > > > > >> > > >> >> >>> __________________________________________________________>>> > Looking for last minute shopping deals? > >> Find> them fast with Yahoo! Search. > >>> >>> http://tools.search.yahoo.com/newsearch/category.php?category=shopping>>> > > > [Non-text portions of this message have>> been> > removed]> > > > > >> Suraya,> mother to Merissa, 8yrs old and Sofia, 4yrs> old> >> >>> __________________________________________________________>>> Never miss a thing. Make Yahoo your home page. >>> http://www.yahoo.com/r/hs> > > > > >>> [Non-text portions of this message have been>> removed]__________________________________________________________Be>> a better friend, newshound, and know-it-all with Yahoo!>> Mobile. Try it now.>> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > > > > > > > > [Non-text portions> of this message have been> removed]__________________________________________________________Be> a better friend, newshound, and know-it-all with Yahoo!> Mobile. Try it now.> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > [Non-text portions of this message have been removed]__________________________________________________________Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ







                                      [Non-text portions of this message have been removed]
                                    • Lisa Lumley ( McLean)
                                      Hi I was wondering if anyone could give me their experiences on these procedures either from having it done themselves or maybe their child? My son is 5 1/2
                                      Message 18 of 28 , May 14, 2008
                                        Hi I was wondering if anyone could give me their experiences on these procedures either from having it done themselves or maybe their child? My son is 5 1/2 and his left foot has really reverted back to its pre-opertive position (Which is quite turned inward) we were at sick kids yesterday and the orthropedic Doc said these were the procedures he would do......If people could share their experiences about having foot surgery the for the second time around it would be really appriciated!!
                                        Thanks so much!!



                                        [Non-text portions of this message have been removed]
                                      • kelli peasley
                                        Hi Lisa, My son who just turn 6 is also having a problem with his left foot getting worse.  They did the entire tendon release at 1 yrs old, and he continues
                                        Message 19 of 28 , May 15, 2008
                                          Hi Lisa, My son who just turn 6 is also having a problem with his left foot getting worse.  They did the entire tendon release at 1 yrs old, and he continues to wear his DAFO braces on his feet, but for some reason the left side, that has always been worse, is getting much worse.  We head to Pamplona Monday to see the surgeon and I am curious to see what he is going to say.  In the braces his feet are great, thus is it really necessary to operate if the braces are maintaining the feet?  Eventually I know they will have to operate again, but the longer we can wait, I would imagine it would be better.. Let me know what they end up doing, but I am curious does your child still wear the braces on his feet? and what was the first procedure they did intially?. Good luck and please keep me informed on what happens, it is curious that are sons are about the same age, and having the same problem with the same foot...
                                          Good luck,
                                          Kelli and Santiago



                                          ----- Original Message ----
                                          From: Lisa Lumley ( McLean) <pomba_99@...>
                                          To: arthrogryposissupportgroup@yahoogroups.com
                                          Sent: Thursday, May 15, 2008 12:25:46 AM
                                          Subject: [Arthrogryposis Support Group] Midfoot Osteotomy/Supra-Malleolar osteotomy




                                          Hi I was wondering if anyone could give me their experiences on these procedures either from having it done themselves or maybe their child? My son is 5 1/2 and his left foot has really reverted back to its pre-opertive position (Which is quite turned inward) we were at sick kids yesterday and the orthropedic Doc said these were the procedures he would do......If people could share their experiences about having foot surgery the for the second time around it would be really appriciated! !
                                          Thanks so much!!

                                          [Non-text portions of this message have been removed]






                                          [Non-text portions of this message have been removed]
                                        • Scott Campbell
                                          ... left foot getting worse.  They did the entire tendon release at 1 yrs old, and he continues to wear his DAFO braces on his feet, but for some reason the
                                          Message 20 of 28 , May 15, 2008
                                            --- In arthrogryposissupportgroup@yahoogroups.com, kelli peasley
                                            <santiamor2002@...> wrote:
                                            >
                                            > Hi Lisa, My son who just turn 6 is also having a problem with his
                                            left foot getting worse.  They did the entire tendon release at 1
                                            yrs old, and he continues to wear his DAFO braces on his feet, but
                                            for some reason the left side, that has always been worse, is
                                            getting much worse.  We head to Pamplona Monday to see the surgeon
                                            and I am curious to see what he is going to say.  In the braces his
                                            feet are great, thus is it really necessary to operate if the braces
                                            are maintaining the feet?  Eventually I know they will have to
                                            operate again, but the longer we can wait, I would imagine it would
                                            be better.. Let me know what they end up doing, but I am curious
                                            does your child still wear the braces on his feet? and what was the
                                            first procedure they did intially?. Good luck and please keep me
                                            informed on what happens, it is curious that are sons are about the
                                            same age, and having the same problem with the same foot...
                                            > Good luck,
                                            > Kelli and Santiago
                                            >
                                            >
                                            >
                                            > ----- Original Message ----
                                            > From: Lisa Lumley ( McLean) <pomba_99@...>
                                            > To: arthrogryposissupportgroup@yahoogroups.com
                                            > Sent: Thursday, May 15, 2008 12:25:46 AM
                                            > Subject: [Arthrogryposis Support Group] Midfoot Osteotomy/Supra-
                                            Malleolar osteotomy
                                            >
                                            >
                                            >
                                            >
                                            > Hi I was wondering if anyone could give me their experiences on
                                            these procedures either from having it done themselves or maybe
                                            their child? My son is 5 1/2 and his left foot has really reverted
                                            back to its pre-opertive position (Which is quite turned inward) we
                                            were at sick kids yesterday and the orthropedic Doc said these were
                                            the procedures he would do......If people could share their
                                            experiences about having foot surgery the for the second time around
                                            it would be really appriciated! !
                                            > Thanks so much!!
                                            >
                                            > [Non-text portions of this message have been removed]
                                            > My name is Scott I have arthrogryposis in my lower limbs. Mainly
                                            in my feet, I've had seven surgeries. Ask your doctor about a
                                            possible ankle fusion, I've had both of my ankles done and what a
                                            difference it made. i hope this will give you some helpful
                                            information.
                                            >
                                            >
                                            >
                                            >
                                            >
                                            > [Non-text portions of this message have been removed]
                                            >
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