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A quick question

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  • smashintwo66
    Hi everyone, I am just wondering where people are geographically located. I know that Jessica lives in Australia, Amanda lives in Florida, and Tina lives in
    Message 1 of 7 , Nov 1, 2003
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      Hi everyone,

      I am just wondering where people are geographically located. I know
      that Jessica lives in Australia, Amanda lives in Florida, and Tina
      lives in Connecticut. We live in Oregon. I am just trying to get a
      mental picture. Last night was Halloween and I took Javad and our
      10 year old out trick-or-treaing. It was cold last night (almost 35)
      so we made it quick. It was kind of a new experience. I took Javad
      in his "limo" (what we call his kid kart), but of course couldn't
      get him to all houses due to the stairs. It was good...one of
      those "normal" family times. Our older ones had some friends over
      to watch movies (not scary ones...thankfully!)I went to coffe with
      my dad this am and told him how this group has been a total
      lifesaver for me. It's been interesting...since the diagnosis last
      week and getting connected with you all, it really ahs been the
      first time that I don't feel angry. My dad said something really
      interesting to me this morning..He said he had been thinking about
      my statement in the past that asked "why me?". He said, "I think I
      know...because if it hadn't have been you, Shannon, Javad would be
      dead." He talked about how much I have advocated in the last two
      years. It was kind of nice to hear. Now that we have a diagnosis,
      I have looked back on the last two years and realized how many times
      Javad was in potential danger that was narrowly averted. Maybe it
      was good that I didn't know and was able to approach each illness as
      an individual, not as the end. I never had to deal with the doctors
      telling me that he wouldn't live. Maybe they thought it in the back
      of their minds, but it was never expressed. I read some of the
      other storoes and my heart breaks! They did tell us that we may
      never know. We were thrilled when we got a diagnosis (even thought
      that was wrong!) :) Now I feel that we are finally moving in a
      direction. I know that I will be a bit more panicky next time he
      gets sick, but we have made it through some pretty bad stuff. We
      are lucky to have great nurses...many who work at our local
      children's hospital and began doing home health just to take care of
      Javad. We get incredible continuity of care. Please continue to
      write experiences, etc. I, too, am here to give background, answer
      questions, etc. Talk to you soon!

      Shannon
    • connie guinn
      Hi, Shannon, We are located in Texas. Halloween night sounded like it was warm even while so cold:) Cherish those nights- they are so dear. Your dad is
      Message 2 of 7 , Nov 1, 2003
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        Hi, Shannon,
        We are located in Texas. Halloween night sounded like
        it was warm even while so cold:) Cherish those
        nights- they are so dear. Your dad is right. I know
        that it is such a help to be able to connect with
        others about such an important and integral part of
        our lives- it is for me, too. I am so glad that you
        are part of this group and can share what's on your
        heart. I look forward to many 'swappings' of
        information and stories. Javad is blessed to know you
        as 'mom'. Godspeed.
        -Connie
        --- smashintwo66 <smashintwo66@...> wrote:
        > Hi everyone,
        >
        > I am just wondering where people are geographically
        > located. I know
        > that Jessica lives in Australia, Amanda lives in
        > Florida, and Tina
        > lives in Connecticut. We live in Oregon. I am just
        > trying to get a
        > mental picture. Last night was Halloween and I took
        > Javad and our
        > 10 year old out trick-or-treaing. It was cold last
        > night (almost 35)
        > so we made it quick. It was kind of a new
        > experience. I took Javad
        > in his "limo" (what we call his kid kart), but of
        > course couldn't
        > get him to all houses due to the stairs. It was
        > good...one of
        > those "normal" family times. Our older ones had
        > some friends over
        > to watch movies (not scary ones...thankfully!)I went
        > to coffe with
        > my dad this am and told him how this group has been
        > a total
        > lifesaver for me. It's been interesting...since the
        > diagnosis last
        > week and getting connected with you all, it really
        > ahs been the
        > first time that I don't feel angry. My dad said
        > something really
        > interesting to me this morning..He said he had been
        > thinking about
        > my statement in the past that asked "why me?". He
        > said, "I think I
        > know...because if it hadn't have been you, Shannon,
        > Javad would be
        > dead." He talked about how much I have advocated in
        > the last two
        > years. It was kind of nice to hear. Now that we
        > have a diagnosis,
        > I have looked back on the last two years and
        > realized how many times
        > Javad was in potential danger that was narrowly
        > averted. Maybe it
        > was good that I didn't know and was able to approach
        > each illness as
        > an individual, not as the end. I never had to deal
        > with the doctors
        > telling me that he wouldn't live. Maybe they
        > thought it in the back
        > of their minds, but it was never expressed. I read
        > some of the
        > other storoes and my heart breaks! They did tell us
        > that we may
        > never know. We were thrilled when we got a
        > diagnosis (even thought
        > that was wrong!) :) Now I feel that we are finally
        > moving in a
        > direction. I know that I will be a bit more panicky
        > next time he
        > gets sick, but we have made it through some pretty
        > bad stuff. We
        > are lucky to have great nurses...many who work at
        > our local
        > children's hospital and began doing home health just
        > to take care of
        > Javad. We get incredible continuity of care. Please
        > continue to
        > write experiences, etc. I, too, am here to give
        > background, answer
        > questions, etc. Talk to you soon!
        >
        > Shannon
        >
        >


        __________________________________
        Do you Yahoo!?
        Exclusive Video Premiere - Britney Spears
        http://launch.yahoo.com/promos/britneyspears/
      • dhahjh
        Shannon, You are so right about us being the only advocate for our sons. My husband and I, from the very beginning, have fought for what we knew was best for
        Message 3 of 7 , Nov 2, 2003
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          Shannon, You are so right about us being the only advocate for our
          sons. My husband and I, from the very beginning, have fought for
          what we knew was best for Jacob. We didn't care what the medical
          literature said, only what our hearts told us. I wouldn't trade
          these past 21 months of my life for anything in this world. I think
          I have really grown, not only as a mother and wife, but as a
          person. I look at things so differently now. It is so easy to get
          into the groove of life and let things pass you by, but I don't do
          that anymore. Every morning when I walk into my son's room, I am
          thinking to myself, "What am I going to do today to make his day
          special?" It really makes for a better life. In the beginning, we
          were absolutely devastated that this was happening to us. We were
          scared and anxious and nervous, but, with all of that, we decided
          not to have home nursing. We have done it all on our own and it has
          been the greatest experience ever. We have been very fortunate that
          I have been able to stay home and care for Jacob and we moved back
          home last year to be closer to our families, who help out
          tremendously with him. My mom and step-father actually watched
          Jacob yesterday so my husband and I could go celebrate his
          birthday. It was great to be able to get out for awhile, but we
          were actually ready to get back to him. It is amazing what children
          will do to you:-)

          Take care, Amanda


          --- In Myotubular_Myopathy@yahoogroups.com, "smashintwo66"
          <smashintwo66@y...> wrote:
          > Hi everyone,
          >
          > I am just wondering where people are geographically located. I
          know
          > that Jessica lives in Australia, Amanda lives in Florida, and Tina
          > lives in Connecticut. We live in Oregon. I am just trying to get
          a
          > mental picture. Last night was Halloween and I took Javad and our
          > 10 year old out trick-or-treaing. It was cold last night (almost
          35)
          > so we made it quick. It was kind of a new experience. I took
          Javad
          > in his "limo" (what we call his kid kart), but of course couldn't
          > get him to all houses due to the stairs. It was good...one of
          > those "normal" family times. Our older ones had some friends over
          > to watch movies (not scary ones...thankfully!)I went to coffe with
          > my dad this am and told him how this group has been a total
          > lifesaver for me. It's been interesting...since the diagnosis
          last
          > week and getting connected with you all, it really ahs been the
          > first time that I don't feel angry. My dad said something really
          > interesting to me this morning..He said he had been thinking about
          > my statement in the past that asked "why me?". He said, "I think
          I
          > know...because if it hadn't have been you, Shannon, Javad would be
          > dead." He talked about how much I have advocated in the last two
          > years. It was kind of nice to hear. Now that we have a
          diagnosis,
          > I have looked back on the last two years and realized how many
          times
          > Javad was in potential danger that was narrowly averted. Maybe it
          > was good that I didn't know and was able to approach each illness
          as
          > an individual, not as the end. I never had to deal with the
          doctors
          > telling me that he wouldn't live. Maybe they thought it in the
          back
          > of their minds, but it was never expressed. I read some of the
          > other storoes and my heart breaks! They did tell us that we may
          > never know. We were thrilled when we got a diagnosis (even
          thought
          > that was wrong!) :) Now I feel that we are finally moving in a
          > direction. I know that I will be a bit more panicky next time he
          > gets sick, but we have made it through some pretty bad stuff. We
          > are lucky to have great nurses...many who work at our local
          > children's hospital and began doing home health just to take care
          of
          > Javad. We get incredible continuity of care. Please continue to
          > write experiences, etc. I, too, am here to give background, answer
          > questions, etc. Talk to you soon!
          >
          > Shannon
        • Toni Louise Abram
          Hello Shannon I m Toni and I have only been a member of this message group for a short while. My father and I have the dominant form of the condition - there
          Message 4 of 7 , Nov 2, 2003
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            Hello Shannon

            I'm Toni and I have only been a member of this message group for a
            short while.

            My father and I have the dominant form of the condition - there are
            not many of us. I am hoping to meet other adult sufferers - as you
            will already found it is very beneficial to talk to others.

            I noted you were asking about where everyone lived. I live in the
            United Kingdom (Chester), a small city about 5 minutes from the North
            Wales border and about 50 minutes - 1 hour from Liverpool and
            Manchester.

            A couple of months ago, I installed a Guest Map on my website as I
            thought it would be fun / interesting to see where visitors to my
            site came from. Presently, I am the only person who has entered any
            details (and I'm lonely on my sea bound island), so would love to
            have another virtual person for company - please feel free to enter
            your details there if you would like.

            Take care Shannon.

            Toni xx

            http://tonilouise.tripod.com



            --- In Myotubular_Myopathy@yahoogroups.com, "smashintwo66"
            <smashintwo66@y...> wrote:
            > Hi everyone,
            >
            > I am just wondering where people are geographically located. I
            know
            > that Jessica lives in Australia, Amanda lives in Florida, and Tina
            > lives in Connecticut. We live in Oregon. I am just trying to get
            a
            > mental picture. Last night was Halloween and I took Javad and our
            > 10 year old out trick-or-treaing. It was cold last night (almost
            35)
            > so we made it quick. It was kind of a new experience. I took
            Javad
            > in his "limo" (what we call his kid kart), but of course couldn't
            > get him to all houses due to the stairs. It was good...one of
            > those "normal" family times. Our older ones had some friends over
            > to watch movies (not scary ones...thankfully!)I went to coffe with
            > my dad this am and told him how this group has been a total
            > lifesaver for me. It's been interesting...since the diagnosis last
            > week and getting connected with you all, it really ahs been the
            > first time that I don't feel angry. My dad said something really
            > interesting to me this morning..He said he had been thinking about
            > my statement in the past that asked "why me?". He said, "I think I
            > know...because if it hadn't have been you, Shannon, Javad would be
            > dead." He talked about how much I have advocated in the last two
            > years. It was kind of nice to hear. Now that we have a diagnosis,
            > I have looked back on the last two years and realized how many
            times
            > Javad was in potential danger that was narrowly averted. Maybe it
            > was good that I didn't know and was able to approach each illness
            as
            > an individual, not as the end. I never had to deal with the
            doctors
            > telling me that he wouldn't live. Maybe they thought it in the
            back
            > of their minds, but it was never expressed. I read some of the
            > other storoes and my heart breaks! They did tell us that we may
            > never know. We were thrilled when we got a diagnosis (even thought
            > that was wrong!) :) Now I feel that we are finally moving in a
            > direction. I know that I will be a bit more panicky next time he
            > gets sick, but we have made it through some pretty bad stuff. We
            > are lucky to have great nurses...many who work at our local
            > children's hospital and began doing home health just to take care
            of
            > Javad. We get incredible continuity of care. Please continue to
            > write experiences, etc. I, too, am here to give background, answer
            > questions, etc. Talk to you soon!
            >
            > Shannon
          • redscootee@webtv.net
            Shannon, Make sure through each trial you may have to face with Javad you remember what your dad said to you. Such a heartwarming statement! One we could all
            Message 5 of 7 , Nov 3, 2003
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              Shannon,
              Make sure through each trial you may have to face with Javad you
              remember what your dad said to you.
              Such a heartwarming statement! One we could all learn by.
              Unfortunately when we are given these dx's we have to learn more about
              them than we ever care to know. In many cases it can be an uphill fight
              but well worth the results in the end.
              Keep fighting for Javad you are doing an excellent job! I hope you don't
              have to face many trials but just know you have the inner strength you
              need to get you both through anything.
              take care God Bless, pat
            • redscootee@webtv.net
              Amanda, Keep up the great job for Jacob! What a great way to approach each day! We could all take a lesson from that. I am 52 and try to always stay upbeat.
              Message 6 of 7 , Nov 3, 2003
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                Amanda,
                Keep up the great job for Jacob! What a great way to approach each day!
                We could all take a lesson from that.
                I am 52 and try to always stay upbeat. (Not Always Easy) (S) There are
                many ppl who know me do not realize the pain I am in everyday. I try to
                keep positive and find it makes each day a little easier to deal with.
                Hope you and your husband had a nice b-day celebration.
                Keep up the great job Amanda,
                take care pat
              • Amanda
                Pat, Thank you for the kind words. I feel very blessed to have Jacob. I had no idea that you suffer with pain as a result of mtm. Actually, I guess I never
                Message 7 of 7 , Nov 5, 2003
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                  Pat, Thank you for the kind words. I feel very blessed to have
                  Jacob.

                  I had no idea that you suffer with pain as a result of mtm.
                  Actually, I guess I never thought of it causing pain, because, as
                  far as I know, our boys don't have any pain. I hope you are able to
                  have good pain medication to help you cope. I am glad that you have
                  such a good husband who really cares - that probably makes a huge
                  difference for you.

                  I hope you have a great day!
                  Amanda

                  --- In Myotubular_Myopathy@yahoogroups.com, redscootee@w... wrote:
                  > Amanda,
                  > Keep up the great job for Jacob! What a great way to approach each
                  day!
                  > We could all take a lesson from that.
                  > I am 52 and try to always stay upbeat. (Not Always Easy) (S) There
                  are
                  > many ppl who know me do not realize the pain I am in everyday. I
                  try to
                  > keep positive and find it makes each day a little easier to deal
                  with.
                  > Hope you and your husband had a nice b-day celebration.
                  > Keep up the great job Amanda,
                  > take care pat
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