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Re: [avenues2] What is going on?

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  • Jaime and Darrin Brown
    We re still here. Dylan (just turned 11) had a tethered spinal cord release on October 8th and has been in and out of the hospital ever since. It was
    Message 1 of 17 , Nov 4, 2009
    • 0 Attachment
      We're still here. Dylan (just turned 11) had a tethered spinal cord release
      on October 8th and has been in and out of the hospital ever since. It was
      supposed to be a very easy surgery, which was followed by intense headaches,
      and an infection which took more than a month to clear up. Dylan had to go
      back in for surgery November 23 to clean out the infection. He has a 2 inch
      deep wound into the base of his spine and is on a wound vac, which is
      supposed to suck out all the bad stuff and heal the wound. He is on it
      24/7, has to have the dressing changed 3 times a week, and will hopefully be
      able to come off it before Christmas. We are so thankful Dylan is alright,
      but this was anything but an easy surgery. I would continue to worry about
      all the possibilities that could still occur, but I fear my fears. I was
      terrified of this seemingly "simple" surgery, assured everything would be
      ok, and have watched Dylan (who has been amazing through this all) suffer
      for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
      been quiet, but we are still here.

      Jaime
      (mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
      origin
      and Casey - 8 - years-old)

      --------------------------------------------------
      From: "Deb L" <deblop__1@...>
      Sent: Friday, December 04, 2009 1:05 PM
      To: "ave2 Email addy" <avenues2@yahoogroups.com>;
      <adults_with_arthrogryposis@yahoogroups.com>; <amc_adults@yahoogroups.com>;
      <arthrogryposissupport@yahoogroups.com>;
      <arthrogryposissupportgroup@yahoogroups.com>; "Ave Email"
      <avenues@yahoogroups.com>
      Subject: RE: [avenues2] What is going on?

      >
      > I have been recieving only the ads too.. Is anyone still out there????
      >
      >
      > Life is like a play - Length is not nearly as important as performance.
      > ~~~~~~~~~~
      > If God brings you to it-He will bring you through it. Lord I love You and
      > I need You, come into my heart,Today. For without You I can do nothing.
      > ~~~~~~~
      >
      >
      >
      >
      >
      >
      > To: Adults_With_Arthrogryposis@yahoogroups.com;
      > amc_adults@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com;
      > arthrogryposissupportgroup@yahoogroups.com; Avenues@yahoogroups.com;
      > avenues2@yahoogroups.com
      > From: dimitra@...
      > Date: Sun, 22 Nov 2009 20:50:58 +0200
      > Subject: [avenues2] What is going on?
      >
      >
      >
      >
      >
      > Dear all,
      >
      > This is Dimitra from Greece. We have been awfully quit lately. Have I
      > missed
      > something.
      >
      > I have been a member of all AMC groups since 1999 and gone through all
      > changes that have happened due to poor e-mail service. Lately, I keep
      > receiving only commercial e-mails. Does this happen to you as well?
      >
      > Our groups have been a life saver for me. Mom of a girl with AMC. I feel
      > that it is my duty to keep the groups alive in order to help other moms &
      > dads that will feel as I was feeling. Is there something I can do to help?
      >
      > Dimitra
      >
      > [Non-text portions of this message have been removed]
      >
      >
      >
      >
      >
      > _________________________________________________________________
      > Windows Live Hotmail gives you a free,exclusive gift.
      > http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?ocid=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
      >
      > [Non-text portions of this message have been removed]
      >
      >
      >
      > ------------------------------------
      >
      > Yahoo! Groups Links
      >
      >
      >
      >
    • Jaime and Darrin Brown
      Thanks Patty!!! From: Patty Clarke Sent: Saturday, December 05, 2009 1:27 AM To: avenues2@yahoogroups.com Subject: RE: [avenues2] What is going on? Hi Jaime, I
      Message 2 of 17 , Nov 6, 2009
      • 0 Attachment
        Thanks Patty!!!


        From: Patty Clarke
        Sent: Saturday, December 05, 2009 1:27 AM
        To: avenues2@yahoogroups.com
        Subject: RE: [avenues2] What is going on?



        Hi Jaime, I am so sorry to hear about Dylan! Gosh I know I had a hip
        replacement and ended up with so many problems, getting the horrible cdif
        infection.these infections are so brutal and we never saw them back when I
        was a kid going through all my surgeries. I just don't understand why more
        attention isn't being paid to this, seems it is only crisis management never
        anything preventative is being done.hang in there he is young and will be
        resilient to it all!!

        Patty.

        From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
        Of Jaime and Darrin Brown
        Sent: November-04-09 8:19 PM
        To: avenues2@yahoogroups.com
        Subject: Re: [avenues2] What is going on?

        We're still here. Dylan (just turned 11) had a tethered spinal cord release
        on October 8th and has been in and out of the hospital ever since. It was
        supposed to be a very easy surgery, which was followed by intense headaches,

        and an infection which took more than a month to clear up. Dylan had to go
        back in for surgery November 23 to clean out the infection. He has a 2 inch
        deep wound into the base of his spine and is on a wound vac, which is
        supposed to suck out all the bad stuff and heal the wound. He is on it
        24/7, has to have the dressing changed 3 times a week, and will hopefully be

        able to come off it before Christmas. We are so thankful Dylan is alright,
        but this was anything but an easy surgery. I would continue to worry about
        all the possibilities that could still occur, but I fear my fears. I was
        terrified of this seemingly "simple" surgery, assured everything would be
        ok, and have watched Dylan (who has been amazing through this all) suffer
        for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
        been quiet, but we are still here.

        Jaime
        (mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
        origin
        and Casey - 8 - years-old)

        --------------------------------------------------
        From: "Deb L" <deblop__1@... <mailto:deblop__1%40hotmail.com> >
        Sent: Friday, December 04, 2009 1:05 PM
        To: "ave2 Email addy" <avenues2@yahoogroups.com
        <mailto:avenues2%40yahoogroups.com> >;
        <adults_with_arthrogryposis@yahoogroups.com
        <mailto:adults_with_arthrogryposis%40yahoogroups.com> >;
        <amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> >;
        <arthrogryposissupport@yahoogroups.com
        <mailto:arthrogryposissupport%40yahoogroups.com> >;
        <arthrogryposissupportgroup@yahoogroups.com
        <mailto:arthrogryposissupportgroup%40yahoogroups.com> >; "Ave Email"
        <avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> >
        Subject: RE: [avenues2] What is going on?

        >
        > I have been recieving only the ads too.. Is anyone still out there????
        >
        >
        > Life is like a play - Length is not nearly as important as performance.
        > ~~~~~~~~~~
        > If God brings you to it-He will bring you through it. Lord I love You and
        > I need You, come into my heart,Today. For without You I can do nothing.
        > ~~~~~~~
        >
        >
        >
        >
        >
        >
        > To: Adults_With_Arthrogryposis@yahoogroups.com
        <mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
        > amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
        ArthrogryposisSupport@yahoogroups.com
        <mailto:ArthrogryposisSupport%40yahoogroups.com> ;
        > arthrogryposissupportgroup@yahoogroups.com
        <mailto:arthrogryposissupportgroup%40yahoogroups.com> ;
        Avenues@yahoogroups.com <mailto:Avenues%40yahoogroups.com> ;
        > avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
        > From: dimitra@... <mailto:dimitra%40gemdome.gr>
        > Date: Sun, 22 Nov 2009 20:50:58 +0200
        > Subject: [avenues2] What is going on?
        >
        >
        >
        >
        >
        > Dear all,
        >
        > This is Dimitra from Greece. We have been awfully quit lately. Have I
        > missed
        > something.
        >
        > I have been a member of all AMC groups since 1999 and gone through all
        > changes that have happened due to poor e-mail service. Lately, I keep
        > receiving only commercial e-mails. Does this happen to you as well?
        >
        > Our groups have been a life saver for me. Mom of a girl with AMC. I feel
        > that it is my duty to keep the groups alive in order to help other moms &
        > dads that will feel as I was feeling. Is there something I can do to help?
        >
        > Dimitra
        >
        > [Non-text portions of this message have been removed]
        >
        >
        >
        >
        >
        > __________________________________________________________
        > Windows Live Hotmail gives you a free,exclusive gift.
        >
        http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?oc
        id=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
        >
        > [Non-text portions of this message have been removed]
        >
        >
        >
        > ------------------------------------
        >
        > Yahoo! Groups Links
        >
        >
        >
        >

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





        [Non-text portions of this message have been removed]
      • Deb L
        I have been recieving only the ads too.. Is anyone still out there???? Life is like a play - Length is not nearly as important as performance. ~~~~~~~~~~ If
        Message 3 of 17 , Dec 4, 2009
        • 0 Attachment
          I have been recieving only the ads too.. Is anyone still out there????


          Life is like a play - Length is not nearly as important as performance.
          ~~~~~~~~~~
          If God brings you to it-He will bring you through it. Lord I love You and I need You, come into my heart,Today. For without You I can do nothing. ~~~~~~~






          To: Adults_With_Arthrogryposis@yahoogroups.com; amc_adults@yahoogroups.com; ArthrogryposisSupport@yahoogroups.com; arthrogryposissupportgroup@yahoogroups.com; Avenues@yahoogroups.com; avenues2@yahoogroups.com
          From: dimitra@...
          Date: Sun, 22 Nov 2009 20:50:58 +0200
          Subject: [avenues2] What is going on?





          Dear all,

          This is Dimitra from Greece. We have been awfully quit lately. Have I missed
          something.

          I have been a member of all AMC groups since 1999 and gone through all
          changes that have happened due to poor e-mail service. Lately, I keep
          receiving only commercial e-mails. Does this happen to you as well?

          Our groups have been a life saver for me. Mom of a girl with AMC. I feel
          that it is my duty to keep the groups alive in order to help other moms &
          dads that will feel as I was feeling. Is there something I can do to help?

          Dimitra

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





          _________________________________________________________________
          Windows Live Hotmail gives you a free,exclusive gift.
          http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?ocid=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009

          [Non-text portions of this message have been removed]
        • Patty Clarke
          Hi Jaime, I am so sorry to hear about Dylan! Gosh I know I had a hip replacement and ended up with so many problems, getting the horrible cdif infection.these
          Message 4 of 17 , Dec 4, 2009
          • 0 Attachment
            Hi Jaime, I am so sorry to hear about Dylan! Gosh I know I had a hip
            replacement and ended up with so many problems, getting the horrible cdif
            infection.these infections are so brutal and we never saw them back when I
            was a kid going through all my surgeries. I just don't understand why more
            attention isn't being paid to this, seems it is only crisis management never
            anything preventative is being done.hang in there he is young and will be
            resilient to it all!!



            Patty.



            From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
            Of Jaime and Darrin Brown
            Sent: November-04-09 8:19 PM
            To: avenues2@yahoogroups.com
            Subject: Re: [avenues2] What is going on?





            We're still here. Dylan (just turned 11) had a tethered spinal cord release
            on October 8th and has been in and out of the hospital ever since. It was
            supposed to be a very easy surgery, which was followed by intense headaches,

            and an infection which took more than a month to clear up. Dylan had to go
            back in for surgery November 23 to clean out the infection. He has a 2 inch
            deep wound into the base of his spine and is on a wound vac, which is
            supposed to suck out all the bad stuff and heal the wound. He is on it
            24/7, has to have the dressing changed 3 times a week, and will hopefully be

            able to come off it before Christmas. We are so thankful Dylan is alright,
            but this was anything but an easy surgery. I would continue to worry about
            all the possibilities that could still occur, but I fear my fears. I was
            terrified of this seemingly "simple" surgery, assured everything would be
            ok, and have watched Dylan (who has been amazing through this all) suffer
            for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
            been quiet, but we are still here.

            Jaime
            (mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
            origin
            and Casey - 8 - years-old)

            --------------------------------------------------
            From: "Deb L" <deblop__1@... <mailto:deblop__1%40hotmail.com> >
            Sent: Friday, December 04, 2009 1:05 PM
            To: "ave2 Email addy" <avenues2@yahoogroups.com
            <mailto:avenues2%40yahoogroups.com> >;
            <adults_with_arthrogryposis@yahoogroups.com
            <mailto:adults_with_arthrogryposis%40yahoogroups.com> >;
            <amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> >;
            <arthrogryposissupport@yahoogroups.com
            <mailto:arthrogryposissupport%40yahoogroups.com> >;
            <arthrogryposissupportgroup@yahoogroups.com
            <mailto:arthrogryposissupportgroup%40yahoogroups.com> >; "Ave Email"
            <avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> >
            Subject: RE: [avenues2] What is going on?

            >
            > I have been recieving only the ads too.. Is anyone still out there????
            >
            >
            > Life is like a play - Length is not nearly as important as performance.
            > ~~~~~~~~~~
            > If God brings you to it-He will bring you through it. Lord I love You and
            > I need You, come into my heart,Today. For without You I can do nothing.
            > ~~~~~~~
            >
            >
            >
            >
            >
            >
            > To: Adults_With_Arthrogryposis@yahoogroups.com
            <mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
            > amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
            ArthrogryposisSupport@yahoogroups.com
            <mailto:ArthrogryposisSupport%40yahoogroups.com> ;
            > arthrogryposissupportgroup@yahoogroups.com
            <mailto:arthrogryposissupportgroup%40yahoogroups.com> ;
            Avenues@yahoogroups.com <mailto:Avenues%40yahoogroups.com> ;
            > avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
            > From: dimitra@... <mailto:dimitra%40gemdome.gr>
            > Date: Sun, 22 Nov 2009 20:50:58 +0200
            > Subject: [avenues2] What is going on?
            >
            >
            >
            >
            >
            > Dear all,
            >
            > This is Dimitra from Greece. We have been awfully quit lately. Have I
            > missed
            > something.
            >
            > I have been a member of all AMC groups since 1999 and gone through all
            > changes that have happened due to poor e-mail service. Lately, I keep
            > receiving only commercial e-mails. Does this happen to you as well?
            >
            > Our groups have been a life saver for me. Mom of a girl with AMC. I feel
            > that it is my duty to keep the groups alive in order to help other moms &
            > dads that will feel as I was feeling. Is there something I can do to help?
            >
            > Dimitra
            >
            > [Non-text portions of this message have been removed]
            >
            >
            >
            >
            >
            > __________________________________________________________
            > Windows Live Hotmail gives you a free,exclusive gift.
            >
            http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?oc
            id=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
            >
            > [Non-text portions of this message have been removed]
            >
            >
            >
            > ------------------------------------
            >
            > Yahoo! Groups Links
            >
            >
            >
            >





            [Non-text portions of this message have been removed]
          • TAHARTT@aol.com
            Oh Jamie I am so sorry for Dylan! Secondary infections are such a problem, especially in kids. Hope everything heals soon! And we are still here too - Ana is
            Message 5 of 17 , Dec 7, 2009
            • 0 Attachment
              Oh Jamie I am so sorry for Dylan! Secondary infections are such a problem, especially in kids.
              Hope everything heals soon!

              And we are still here too - Ana is now 12 and doing very well in school with no help and Henry is still plugging along, needing his chair more now but other than that doing well. He had his neck fusion this summer and it went very well.

              Take care,

              Traci Hart-Thomas
              mom to 8, 2 with AMC



              -----Original Message-----
              From: Jaime and Darrin Brown <jddncb@...>
              To: avenues2@yahoogroups.com
              Sent: Fri, Nov 6, 2009 9:04 pm
              Subject: Re: [avenues2] What is going on?




              Thanks Patty!!!

              From: Patty Clarke
              Sent: Saturday, December 05, 2009 1:27 AM
              To: avenues2@yahoogroups.com
              Subject: RE: [avenues2] What is going on?

              Hi Jaime, I am so sorry to hear about Dylan! Gosh I know I had a hip
              replacement and ended up with so many problems, getting the horrible cdif
              infection.these infections are so brutal and we never saw them back when I
              was a kid going through all my surgeries. I just don't understand why more
              attention isn't being paid to this, seems it is only crisis management never
              anything preventative is being done.hang in there he is young and will be
              resilient to it all!!

              Patty.

              From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
              Of Jaime and Darrin Brown
              Sent: November-04-09 8:19 PM
              To: avenues2@yahoogroups.com
              Subject: Re: [avenues2] What is going on?

              We're still here. Dylan (just turned 11) had a tethered spinal cord release
              on October 8th and has been in and out of the hospital ever since. It was
              supposed to be a very easy surgery, which was followed by intense headaches,

              and an infection which took more than a month to clear up. Dylan had to go
              back in for surgery November 23 to clean out the infection. He has a 2 inch
              deep wound into the base of his spine and is on a wound vac, which is
              supposed to suck out all the bad stuff and heal the wound. He is on it
              24/7, has to have the dressing changed 3 times a week, and will hopefully be

              able to come off it before Christmas. We are so thankful Dylan is alright,
              but this was anything but an easy surgery. I would continue to worry about
              all the possibilities that could still occur, but I fear my fears. I was
              terrified of this seemingly "simple" surgery, assured everything would be
              ok, and have watched Dylan (who has been amazing through this all) suffer
              for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
              been quiet, but we are still here.

              Jaime
              (mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
              origin
              and Casey - 8 - years-old)

              --------------------------------------------------
              From: "Deb L" <deblop__1@... <mailto:deblop__1%40hotmail.com> >
              Sent: Friday, December 04, 2009 1:05 PM
              To: "ave2 Email addy" <avenues2@yahoogroups.com
              <mailto:avenues2%40yahoogroups.com> >;
              <adults_with_arthrogryposis@yahoogroups.com
              <mailto:adults_with_arthrogryposis%40yahoogroups.com> >;
              <amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> >;
              <arthrogryposissupport@yahoogroups.com
              <mailto:arthrogryposissupport%40yahoogroups.com> >;
              <arthrogryposissupportgroup@yahoogroups.com
              <mailto:arthrogryposissupportgroup%40yahoogroups.com> >; "Ave Email"
              <avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> >
              Subject: RE: [avenues2] What is going on?

              >
              > I have been recieving only the ads too.. Is anyone still out there????
              >
              >
              > Life is like a play - Length is not nearly as important as performance.
              > ~~~~~~~~~~
              > If God brings you to it-He will bring you through it. Lord I love You and
              > I need You, come into my heart,Today. For without You I can do nothing.
              > ~~~~~~~
              >
              >
              >
              >
              >
              >
              > To: Adults_With_Arthrogryposis@yahoogroups.com
              <mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
              > amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
              ArthrogryposisSupport@yahoogroups.com
              <mailto:ArthrogryposisSupport%40yahoogroups.com> ;
              > arthrogryposissupportgroup@yahoogroups.com
              <mailto:arthrogryposissupportgroup%40yahoogroups.com> ;
              Avenues@yahoogroups.com <mailto:Avenues%40yahoogroups.com> ;
              > avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
              > From: dimitra@... <mailto:dimitra%40gemdome.gr>
              > Date: Sun, 22 Nov 2009 20:50:58 +0200
              > Subject: [avenues2] What is going on?
              >
              >
              >
              >
              >
              > Dear all,
              >
              > This is Dimitra from Greece. We have been awfully quit lately. Have I
              > missed
              > something.
              >
              > I have been a member of all AMC groups since 1999 and gone through all
              > changes that have happened due to poor e-mail service. Lately, I keep
              > receiving only commercial e-mails. Does this happen to you as well?
              >
              > Our groups have been a life saver for me. Mom of a girl with AMC. I feel
              > that it is my duty to keep the groups alive in order to help other moms &
              > dads that will feel as I was feeling. Is there something I can do to help?
              >
              > Dimitra
              >
              > [Non-text portions of this message have been removed]
              >
              >
              >
              >
              >
              > __________________________________________________________
              > Windows Live Hotmail gives you a free,exclusive gift.
              >
              http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?oc
              id=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
              >
              > [Non-text portions of this message have been removed]
              >
              >
              >
              > ------------------------------------
              >
              > Yahoo! Groups Links
              >
              >
              >
              >

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

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







              [Non-text portions of this message have been removed]
            • Darrin and Jaime Brown
              Thanks Traci, Glad to hear your kids are doing well! Jaime To: avenues2@yahoogroups.com From: TAHARTT@aol.com Date: Mon, 7 Dec 2009 09:30:09 -0500 Subject: Re:
              Message 6 of 17 , Dec 7, 2009
              • 0 Attachment
                Thanks Traci,



                Glad to hear your kids are doing well!



                Jaime







                To: avenues2@yahoogroups.com
                From: TAHARTT@...
                Date: Mon, 7 Dec 2009 09:30:09 -0500
                Subject: Re: [avenues2] What is going on?






                Oh Jamie I am so sorry for Dylan! Secondary infections are such a problem, especially in kids.
                Hope everything heals soon!

                And we are still here too - Ana is now 12 and doing very well in school with no help and Henry is still plugging along, needing his chair more now but other than that doing well. He had his neck fusion this summer and it went very well.

                Take care,

                Traci Hart-Thomas
                mom to 8, 2 with AMC

                -----Original Message-----
                From: Jaime and Darrin Brown <jddncb@...>
                To: avenues2@yahoogroups.com
                Sent: Fri, Nov 6, 2009 9:04 pm
                Subject: Re: [avenues2] What is going on?

                Thanks Patty!!!

                From: Patty Clarke
                Sent: Saturday, December 05, 2009 1:27 AM
                To: avenues2@yahoogroups.com
                Subject: RE: [avenues2] What is going on?

                Hi Jaime, I am so sorry to hear about Dylan! Gosh I know I had a hip
                replacement and ended up with so many problems, getting the horrible cdif
                infection.these infections are so brutal and we never saw them back when I
                was a kid going through all my surgeries. I just don't understand why more
                attention isn't being paid to this, seems it is only crisis management never
                anything preventative is being done.hang in there he is young and will be
                resilient to it all!!

                Patty.

                From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf
                Of Jaime and Darrin Brown
                Sent: November-04-09 8:19 PM
                To: avenues2@yahoogroups.com
                Subject: Re: [avenues2] What is going on?

                We're still here. Dylan (just turned 11) had a tethered spinal cord release
                on October 8th and has been in and out of the hospital ever since. It was
                supposed to be a very easy surgery, which was followed by intense headaches,

                and an infection which took more than a month to clear up. Dylan had to go
                back in for surgery November 23 to clean out the infection. He has a 2 inch
                deep wound into the base of his spine and is on a wound vac, which is
                supposed to suck out all the bad stuff and heal the wound. He is on it
                24/7, has to have the dressing changed 3 times a week, and will hopefully be

                able to come off it before Christmas. We are so thankful Dylan is alright,
                but this was anything but an easy surgery. I would continue to worry about
                all the possibilities that could still occur, but I fear my fears. I was
                terrified of this seemingly "simple" surgery, assured everything would be
                ok, and have watched Dylan (who has been amazing through this all) suffer
                for 2 months. Sometimes life is just so unfair to our kids. Sorry we have
                been quiet, but we are still here.

                Jaime
                (mom to Dylan - 11-years-old, Neurogenic Arthrogryposis from an unknown MD
                origin
                and Casey - 8 - years-old)

                --------------------------------------------------
                From: "Deb L" <deblop__1@... <mailto:deblop__1%40hotmail.com> >
                Sent: Friday, December 04, 2009 1:05 PM
                To: "ave2 Email addy" <avenues2@yahoogroups.com
                <mailto:avenues2%40yahoogroups.com> >;
                <adults_with_arthrogryposis@yahoogroups.com
                <mailto:adults_with_arthrogryposis%40yahoogroups.com> >;
                <amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> >;
                <arthrogryposissupport@yahoogroups.com
                <mailto:arthrogryposissupport%40yahoogroups.com> >;
                <arthrogryposissupportgroup@yahoogroups.com
                <mailto:arthrogryposissupportgroup%40yahoogroups.com> >; "Ave Email"
                <avenues@yahoogroups.com <mailto:avenues%40yahoogroups.com> >
                Subject: RE: [avenues2] What is going on?

                >
                > I have been recieving only the ads too.. Is anyone still out there????
                >
                >
                > Life is like a play - Length is not nearly as important as performance.
                > ~~~~~~~~~~
                > If God brings you to it-He will bring you through it. Lord I love You and
                > I need You, come into my heart,Today. For without You I can do nothing.
                > ~~~~~~~
                >
                >
                >
                >
                >
                >
                > To: Adults_With_Arthrogryposis@yahoogroups.com
                <mailto:Adults_With_Arthrogryposis%40yahoogroups.com> ;
                > amc_adults@yahoogroups.com <mailto:amc_adults%40yahoogroups.com> ;
                ArthrogryposisSupport@yahoogroups.com
                <mailto:ArthrogryposisSupport%40yahoogroups.com> ;
                > arthrogryposissupportgroup@yahoogroups.com
                <mailto:arthrogryposissupportgroup%40yahoogroups.com> ;
                Avenues@yahoogroups.com <mailto:Avenues%40yahoogroups.com> ;
                > avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
                > From: dimitra@... <mailto:dimitra%40gemdome.gr>
                > Date: Sun, 22 Nov 2009 20:50:58 +0200
                > Subject: [avenues2] What is going on?
                >
                >
                >
                >
                >
                > Dear all,
                >
                > This is Dimitra from Greece. We have been awfully quit lately. Have I
                > missed
                > something.
                >
                > I have been a member of all AMC groups since 1999 and gone through all
                > changes that have happened due to poor e-mail service. Lately, I keep
                > receiving only commercial e-mails. Does this happen to you as well?
                >
                > Our groups have been a life saver for me. Mom of a girl with AMC. I feel
                > that it is my duty to keep the groups alive in order to help other moms &
                > dads that will feel as I was feeling. Is there something I can do to help?
                >
                > Dimitra
                >
                > [Non-text portions of this message have been removed]
                >
                >
                >
                >
                >
                > __________________________________________________________
                > Windows Live Hotmail gives you a free,exclusive gift.
                >
                http://www.microsoft.com/windows/windowslive/hotmail_bl1/hotmail_bl1.aspx?oc
                id=PID23879::T:WLMTAGL:ON:WL:en-ww:WM_IMHM_7:092009
                >
                > [Non-text portions of this message have been removed]
                >
                >
                >
                > ------------------------------------
                >
                > Yahoo! Groups Links
                >
                >
                >
                >

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

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

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





                _________________________________________________________________
                Get gifts for them and cashback for you. Try Bing now.
                http://www.bing.com/shopping/search?q=xbox+games&scope=cashback&form=MSHYCB&publ=WLHMTAG&crea=TEXT_MSHYCB_Shopping_Giftsforthem_cashback_1x1

                [Non-text portions of this message have been removed]
              • Gail Brookhart
                We re doing pretty well here in Indiana. Alec is 12 now and in middle school getting good grades and being social with the world. Our other son is missing his
                Message 7 of 17 , Dec 7, 2009
                • 0 Attachment
                  We're doing pretty well here in Indiana.

                  Alec is 12 now and in middle school getting good grades and being social with the world. Our other son is missing his brother since he's still in elementary school.

                  Husband lost his job. He works in IT/Computer or Customer Support if you have any leads.

                  Gail & Bill, the parents
                  Alec & Dane, the children, I think


                  ----- Original Message -----
                  From: Dimitra Giannopoulou
                  To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ; 'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'
                  Sent: Sunday, November 22, 2009 1:50 PM
                  Subject: [avenues2] What is going on?



                  Dear all,

                  This is Dimitra from Greece. We have been awfully quit lately. Have I missed
                  something.

                  I have been a member of all AMC groups since 1999 and gone through all
                  changes that have happened due to poor e-mail service. Lately, I keep
                  receiving only commercial e-mails. Does this happen to you as well?

                  Our groups have been a life saver for me. Mom of a girl with AMC. I feel
                  that it is my duty to keep the groups alive in order to help other moms &
                  dads that will feel as I was feeling. Is there something I can do to help?

                  Dimitra

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






                  ------------------------------------------------------------------------------



                  No virus found in this incoming message.
                  Checked by AVG - www.avg.com
                  Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09 02:38:00


                  [Non-text portions of this message have been removed]
                • Darrin and Jaime Brown
                  Wow Gail, We are in the same position. My husband lost his job back in August. He is in HR. I can t believe how bad it is out there. Very scary!!! Good
                  Message 8 of 17 , Dec 7, 2009
                  • 0 Attachment
                    Wow Gail,



                    We are in the same position. My husband lost his job back in August. He is in HR. I can't believe how bad it is out there. Very scary!!!

                    Good luck!



                    Jaime




                    To: avenues2@yahoogroups.com
                    From: brookhart1@...
                    Date: Mon, 7 Dec 2009 10:36:00 -0500
                    Subject: Re: [avenues2] What is going on?





                    We're doing pretty well here in Indiana.

                    Alec is 12 now and in middle school getting good grades and being social with the world. Our other son is missing his brother since he's still in elementary school.

                    Husband lost his job. He works in IT/Computer or Customer Support if you have any leads.

                    Gail & Bill, the parents
                    Alec & Dane, the children, I think

                    ----- Original Message -----
                    From: Dimitra Giannopoulou
                    To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ; 'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'
                    Sent: Sunday, November 22, 2009 1:50 PM
                    Subject: [avenues2] What is going on?

                    Dear all,

                    This is Dimitra from Greece. We have been awfully quit lately. Have I missed
                    something.

                    I have been a member of all AMC groups since 1999 and gone through all
                    changes that have happened due to poor e-mail service. Lately, I keep
                    receiving only commercial e-mails. Does this happen to you as well?

                    Our groups have been a life saver for me. Mom of a girl with AMC. I feel
                    that it is my duty to keep the groups alive in order to help other moms &
                    dads that will feel as I was feeling. Is there something I can do to help?

                    Dimitra

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

                    ----------------------------------------------------------

                    No virus found in this incoming message.
                    Checked by AVG - www.avg.com
                    Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09 02:38:00

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





                    _________________________________________________________________
                    Windows 7: Unclutter your desktop. Learn more.
                    http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&media=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_WIN_7secdemo:122009

                    [Non-text portions of this message have been removed]
                  • Dee Dee HARRINGTON
                    We are still here as well. Elijah is seven now and doing good. He loves math and science but is really struggling with reading and writing. He was just
                    Message 9 of 17 , Dec 7, 2009
                    • 0 Attachment
                      We are still here as well. Elijah is seven now and doing good. He loves math and science but is really struggling with reading and writing. He was just diagnosed with a bilateral moderate hearing loss and will be having surgery on his right ear soon to rebuild the bones in his ear. We also need to get to Seattle again and get his thumb released. Other than that he is doing good. Does anyone know the dates of the next Seattle Arthro clinic?Dee Dee
                      > To: avenues2@yahoogroups.com
                      > From: jddncb@...
                      > Date: Mon, 7 Dec 2009 10:41:35 -0500
                      > Subject: RE: [avenues2] What is going on?
                      >
                      >
                      > Wow Gail,
                      >
                      >
                      >
                      > We are in the same position. My husband lost his job back in August. He is in HR. I can't believe how bad it is out there. Very scary!!!
                      >
                      > Good luck!
                      >
                      >
                      >
                      > Jaime
                      >
                      >
                      >
                      >
                      > To: avenues2@yahoogroups.com
                      > From: brookhart1@...
                      > Date: Mon, 7 Dec 2009 10:36:00 -0500
                      > Subject: Re: [avenues2] What is going on?
                      >
                      >
                      >
                      >
                      >
                      > We're doing pretty well here in Indiana.
                      >
                      > Alec is 12 now and in middle school getting good grades and being social with the world. Our other son is missing his brother since he's still in elementary school.
                      >
                      > Husband lost his job. He works in IT/Computer or Customer Support if you have any leads.
                      >
                      > Gail & Bill, the parents
                      > Alec & Dane, the children, I think
                      >
                      > ----- Original Message -----
                      > From: Dimitra Giannopoulou
                      > To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ; 'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'
                      > Sent: Sunday, November 22, 2009 1:50 PM
                      > Subject: [avenues2] What is going on?
                      >
                      > Dear all,
                      >
                      > This is Dimitra from Greece. We have been awfully quit lately. Have I missed
                      > something.
                      >
                      > I have been a member of all AMC groups since 1999 and gone through all
                      > changes that have happened due to poor e-mail service. Lately, I keep
                      > receiving only commercial e-mails. Does this happen to you as well?
                      >
                      > Our groups have been a life saver for me. Mom of a girl with AMC. I feel
                      > that it is my duty to keep the groups alive in order to help other moms &
                      > dads that will feel as I was feeling. Is there something I can do to help?
                      >
                      > Dimitra
                      >
                      > [Non-text portions of this message have been removed]
                      >
                      > ----------------------------------------------------------
                      >
                      > No virus found in this incoming message.
                      > Checked by AVG - www.avg.com
                      > Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09 02:38:00
                      >
                      > [Non-text portions of this message have been removed]
                      >
                      >
                      >
                      >
                      >
                      > _________________________________________________________________
                      > Windows 7: Unclutter your desktop. Learn more.
                      > http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&media=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_WIN_7secdemo:122009
                      >
                      > [Non-text portions of this message have been removed]
                      >
                      >
                      >
                      > ------------------------------------
                      >
                      > Yahoo! Groups Links
                      >
                      >
                      >


                      [Non-text portions of this message have been removed]
                    • MARK & MARY HEINEN
                      Hi All, We are still here too...just trying to weather the economic storm. My husband was diagnosed with lymphatic cancer a couple of years ago (right around
                      Message 10 of 17 , Dec 7, 2009
                      • 0 Attachment
                        Hi All,

                        We are still here too...just trying to weather the economic storm. My husband was diagnosed with lymphatic cancer a couple of years ago (right around the time the economy really started to tank). Thankfully he came through the cancer with flying colors, but his industry which is construction obviously did not. He is self employed and work has been very sparse with no unemployment to draw on. Thankfully I am employed so although I don't make a ton of money, I do have a paying, secure (I hope) job.

                        On a better note, Juliet is now 10 years old and in 5th grade and doing wonderfully. Our big news is that after 2 years of being on a waiting list for a service dog, we have finally moved to the top of the list and will be heading out for Columbus, Ohio Feb 1-13 for team training. How we are going to pay for the trip costs and whether my 10 year old van can actually make the trip remains to be seen, but we are in "damn the torpedoes" mode and are going for it!

                        Nice to hear everyone's updates as it sure had been quite awhile. Peace to everyone and may good things come your way!

                        Mary (mom to Avery age 12, Juliet age 10 and Camryn age 8)

                        ----- Original Message -----

                        From: Dee Dee HARRINGTON

                        To: avenues2

                        Sent: Mon, 7 Dec 2009 12:36:12 -0500 (EST)

                        Subject: RE: [avenues2] What is going on?




























































                        We are still here as well. Elijah is seven now and doing good. He loves math and science but is really struggling with reading and writing. He was just diagnosed with a bilateral moderate hearing loss and will be having surgery on his right ear soon to rebuild the bones in his ear. We also need to get to Seattle again and get his thumb released. Other than that he is doing good. Does anyone know the dates of the next Seattle Arthro clinic?Dee Dee


                        > To: avenues2@yahoogroups.com


                        > From: jddncb@...


                        > Date: Mon, 7 Dec 2009 10:41:35 -0500


                        > Subject: RE: [avenues2] What is going on?


                        >


                        >


                        > Wow Gail,


                        >


                        >


                        >


                        > We are in the same position. My husband lost his job back in August. He is in HR. I can't believe how bad it is out there. Very scary!!!


                        >


                        > Good luck!


                        >


                        >


                        >


                        > Jaime


                        >


                        >


                        >


                        >


                        > To: avenues2@yahoogroups.com


                        > From: brookhart1@...


                        > Date: Mon, 7 Dec 2009 10:36:00 -0500


                        > Subject: Re: [avenues2] What is going on?


                        >


                        >


                        >


                        >


                        >


                        > We're doing pretty well here in Indiana.


                        >


                        > Alec is 12 now and in middle school getting good grades and being social with the world. Our other son is missing his brother since he's still in elementary school.


                        >


                        > Husband lost his job. He works in IT/Computer or Customer Support if you have any leads.


                        >


                        > Gail & Bill, the parents


                        > Alec & Dane, the children, I think


                        >


                        > ----- Original Message -----


                        > From: Dimitra Giannopoulou


                        > To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ; 'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'


                        > Sent: Sunday, November 22, 2009 1:50 PM


                        > Subject: [avenues2] What is going on?


                        >


                        > Dear all,


                        >


                        > This is Dimitra from Greece. We have been awfully quit lately. Have I missed


                        > something.


                        >


                        > I have been a member of all AMC groups since 1999 and gone through all


                        > changes that have happened due to poor e-mail service. Lately, I keep


                        > receiving only commercial e-mails. Does this happen to you as well?


                        >


                        > Our groups have been a life saver for me. Mom of a girl with AMC. I feel


                        > that it is my duty to keep the groups alive in order to help other moms &


                        > dads that will feel as I was feeling. Is there something I can do to help?


                        >


                        > Dimitra


                        >


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


                        >


                        > ----------------------------------------------------------


                        >


                        > No virus found in this incoming message.


                        > Checked by AVG - www.avg.com


                        > Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09 02:38:00


                        >


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


                        >


                        >


                        >


                        >


                        >


                        > __________________________________________________________


                        > Windows 7: Unclutter your desktop. Learn more.


                        > http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&media=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_WIN_7secdemo:122009


                        >


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


                        >


                        >


                        >


                        > ------------------------------------


                        >


                        > Yahoo! Groups Links


                        >


                        >


                        >








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

















































                        [Non-text portions of this message have been removed]
                      • Gail Brookhart
                        Keep us posted on the service dog. Alec has made noises about wanting a service dog so he s watching all the dog training shows on Animal Planet and likes to
                        Message 11 of 17 , Dec 7, 2009
                        • 0 Attachment
                          Keep us posted on the service dog. Alec has made noises about wanting a service dog so he's watching all the dog training shows on Animal Planet and likes to sit down with me to look at my dog breed books.

                          I assume that this is a Canine Companions for Independence placement?

                          Anyone else with news of interest about AMC and service dogs, sing out.

                          Thanks,

                          Gail


                          ----- Original Message -----
                          From: MARK & MARY HEINEN
                          To: avenues2@yahoogroups.com
                          Sent: Monday, December 07, 2009 1:36 PM
                          Subject: RE: [avenues2] What is going on?



                          Hi All,

                          We are still here too...just trying to weather the economic storm. My husband was diagnosed with lymphatic cancer a couple of years ago (right around the time the economy really started to tank). Thankfully he came through the cancer with flying colors, but his industry which is construction obviously did not. He is self employed and work has been very sparse with no unemployment to draw on. Thankfully I am employed so although I don't make a ton of money, I do have a paying, secure (I hope) job.

                          On a better note, Juliet is now 10 years old and in 5th grade and doing wonderfully. Our big news is that after 2 years of being on a waiting list for a service dog, we have finally moved to the top of the list and will be heading out for Columbus, Ohio Feb 1-13 for team training. How we are going to pay for the trip costs and whether my 10 year old van can actually make the trip remains to be seen, but we are in "damn the torpedoes" mode and are going for it!

                          Nice to hear everyone's updates as it sure had been quite awhile. Peace to everyone and may good things come your way!

                          Mary (mom to Avery age 12, Juliet age 10 and Camryn age 8)

                          ----- Original Message -----

                          From: Dee Dee HARRINGTON

                          To: avenues2

                          Sent: Mon, 7 Dec 2009 12:36:12 -0500 (EST)

                          Subject: RE: [avenues2] What is going on?

                          We are still here as well. Elijah is seven now and doing good. He loves math and science but is really struggling with reading and writing. He was just diagnosed with a bilateral moderate hearing loss and will be having surgery on his right ear soon to rebuild the bones in his ear. We also need to get to Seattle again and get his thumb released. Other than that he is doing good. Does anyone know the dates of the next Seattle Arthro clinic?Dee Dee

                          > To: avenues2@yahoogroups.com

                          > From: jddncb@...

                          > Date: Mon, 7 Dec 2009 10:41:35 -0500

                          > Subject: RE: [avenues2] What is going on?

                          >

                          >

                          > Wow Gail,

                          >

                          >

                          >

                          > We are in the same position. My husband lost his job back in August. He is in HR. I can't believe how bad it is out there. Very scary!!!

                          >

                          > Good luck!

                          >

                          >

                          >

                          > Jaime

                          >

                          >

                          >

                          >

                          > To: avenues2@yahoogroups.com

                          > From: brookhart1@...

                          > Date: Mon, 7 Dec 2009 10:36:00 -0500

                          > Subject: Re: [avenues2] What is going on?

                          >

                          >

                          >

                          >

                          >

                          > We're doing pretty well here in Indiana.

                          >

                          > Alec is 12 now and in middle school getting good grades and being social with the world. Our other son is missing his brother since he's still in elementary school.

                          >

                          > Husband lost his job. He works in IT/Computer or Customer Support if you have any leads.

                          >

                          > Gail & Bill, the parents

                          > Alec & Dane, the children, I think

                          >

                          > ----- Original Message -----

                          > From: Dimitra Giannopoulou

                          > To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ; 'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'

                          > Sent: Sunday, November 22, 2009 1:50 PM

                          > Subject: [avenues2] What is going on?

                          >

                          > Dear all,

                          >

                          > This is Dimitra from Greece. We have been awfully quit lately. Have I missed

                          > something.

                          >

                          > I have been a member of all AMC groups since 1999 and gone through all

                          > changes that have happened due to poor e-mail service. Lately, I keep

                          > receiving only commercial e-mails. Does this happen to you as well?

                          >

                          > Our groups have been a life saver for me. Mom of a girl with AMC. I feel

                          > that it is my duty to keep the groups alive in order to help other moms &

                          > dads that will feel as I was feeling. Is there something I can do to help?

                          >

                          > Dimitra

                          >

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

                          >

                          > ----------------------------------------------------------

                          >

                          > No virus found in this incoming message.

                          > Checked by AVG - www.avg.com

                          > Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09 02:38:00

                          >

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

                          >

                          >

                          >

                          >

                          >

                          > __________________________________________________________

                          > Windows 7: Unclutter your desktop. Learn more.

                          > http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&media=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_WIN_7secdemo:122009

                          >

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

                          >

                          >

                          >

                          > ------------------------------------

                          >

                          > Yahoo! Groups Links

                          >

                          >

                          >

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

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






                          ------------------------------------------------------------------------------



                          No virus found in this incoming message.
                          Checked by AVG - www.avg.com
                          Version: 9.0.709 / Virus Database: 270.14.97/2550 - Release Date: 12/07/09 02:33:00


                          [Non-text portions of this message have been removed]
                        • Beki
                          We are here and life is Crazy. Jason is doing pretty well. He had a tendon transfer this summer, and is walking better for it on the one foot. They are going
                          Message 12 of 17 , Dec 7, 2009
                          • 0 Attachment
                            We are here and life is Crazy. Jason is doing pretty well. He had a tendon transfer this summer, and is walking better for it on the one foot. They are going to do his other foot next summer. He's weathering the VEPTR surgeries just fine. His sister is a grumpy teenager, and I am not quite sure what to do with her (I think that's pretty normal) I'm still working 50 hour weeks, my  husband is still employed, which is a good thing since they laid off about 3/4 of the workforce where he works. Umm.. That's all I can think of.




                            ----- Original Message -----
                            From: "MARK & MARY HEINEN" <mmajch94@...>
                            To: avenues2@yahoogroups.com
                            Sent: Monday, December 7, 2009 10:36:25 AM GMT -08:00 US/Canada Pacific
                            Subject: RE: [avenues2] What is going on?

                            Hi All,

                            We are still here too...just trying to weather the economic storm. My husband was diagnosed with lymphatic cancer a couple of years ago (right around the time the economy really started to tank). Thankfully he came through the cancer with flying colors, but his industry which is construction obviously did not. He is self employed and work has been very sparse with no unemployment to draw on.  Thankfully I am employed so although I don't make a ton of money, I do have a paying, secure (I hope) job.

                            On a better note, Juliet is now 10 years old and in 5th grade and doing wonderfully. Our big news is that after 2 years of being on a waiting list for a service dog, we have finally moved to the top of the list and will be heading out for Columbus, Ohio Feb 1-13 for team training.  How we are going to pay for the trip costs  and whether my 10 year old van can actually make the trip remains to be seen,  but we are in "damn the torpedoes" mode and are going for it!

                            Nice to hear everyone's updates as it sure had been quite awhile. Peace to everyone and may good things come your way!

                            Mary (mom to Avery age 12, Juliet age 10 and Camryn age 8)

                            ----- Original Message -----

                            From: Dee Dee HARRINGTON

                            To: avenues2

                            Sent: Mon, 7 Dec 2009 12:36:12 -0500 (EST)

                            Subject: RE: [avenues2] What is going on?

































                             








                              






                                


                                  

                                  

                                  



                            We are still here as well. Elijah is seven now and doing good. He loves math and science but is really struggling with reading and writing. He was just diagnosed with a bilateral moderate hearing loss and will be having surgery on his right ear soon to rebuild the bones in his ear. We also need to get to Seattle again and get his thumb released. Other than that he is doing good. Does anyone know the dates of the next Seattle Arthro clinic?Dee Dee


                            > To: avenues2@yahoogroups.com


                            > From: jddncb@...


                            > Date: Mon, 7 Dec 2009 10:41:35 -0500


                            > Subject: RE: [avenues2] What is going on?


                            >


                            >


                            > Wow Gail,


                            >


                            >  


                            >


                            > We are in the same position.  My husband lost his job back in August.  He is in HR.  I can't believe how bad it is out there.  Very scary!!!


                            >


                            > Good luck!


                            >


                            >  


                            >


                            > Jaime


                            >


                            >  


                            >


                            >


                            > To: avenues2@yahoogroups.com


                            > From: brookhart1@...


                            > Date: Mon, 7 Dec 2009 10:36:00 -0500


                            > Subject: Re: [avenues2] What is going on?


                            >


                            >  


                            >


                            >


                            >


                            > We're doing pretty well here in Indiana.


                            >


                            > Alec is 12 now and in middle school getting good grades and being social with the world. Our other son is missing his brother since he's still in elementary school.


                            >


                            > Husband lost his job. He works in IT/Computer or Customer Support if you have any leads.


                            >


                            > Gail & Bill, the parents


                            > Alec & Dane, the children, I think


                            >


                            > ----- Original Message -----


                            > From: Dimitra Giannopoulou


                            > To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ; 'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'


                            > Sent: Sunday, November 22, 2009 1:50 PM


                            > Subject: [avenues2] What is going on?


                            >


                            > Dear all,


                            >


                            > This is Dimitra from Greece. We have been awfully quit lately. Have I missed


                            > something.


                            >


                            > I have been a member of all AMC groups since 1999 and gone through all


                            > changes that have happened due to poor e-mail service. Lately, I keep


                            > receiving only commercial e-mails. Does this happen to you as well?


                            >


                            > Our groups have been a life saver for me. Mom of a girl with AMC. I feel


                            > that it is my duty to keep the groups alive in order to help other moms &


                            > dads that will feel as I was feeling. Is there something I can do to help?


                            >


                            > Dimitra


                            >


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


                            >


                            > ----------------------------------------------------------


                            >


                            > No virus found in this incoming message.


                            > Checked by AVG - www.avg.com


                            > Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09 02:38:00


                            >


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


                            >


                            >


                            >


                            >


                            >                            


                            > __________________________________________________________


                            > Windows 7: Unclutter your desktop. Learn more.


                            > http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&media=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_WIN_7secdemo:122009


                            >


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


                            >


                            >


                            >


                            > ------------------------------------


                            >


                            > Yahoo! Groups Links


                            >


                            >


                            >


                                                      





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









                                

                                



                                

                                














                              
















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



                            ------------------------------------

                            Yahoo! Groups Links





                            [Non-text portions of this message have been removed]
                          • Patty Clarke
                            I do now someone here in BC, Canada that has AMC and has a service dog. She has her second dog now ad she is a professional woman, works full time etc and the
                            Message 13 of 17 , Dec 7, 2009
                            • 0 Attachment
                              I do now someone here in BC, Canada that has AMC and has a service dog. She has her second dog now ad she is a professional woman, works full time etc and the dog has been an amazing support to her. She uses a wheelchair but does walk short distances and the dog pulls her chair on hills slopes, all terrains. I keep thinking of getting one but I use a power chair and am very independent so I cannot see what yet a dog may do for me…..for kids, I know the dogs have given an enormous boost in quality of life. I would say to get a dog for the kids with amc especially who have limited upper body….these dogs make a huge difference and I have seen a leap in the feeling of independence for kids who can’t pick things up, pull doors open, even I have seen these dogs help people who are quadriplegics, get dressed….I bet there could be a whole dog assistance agency trained just for kids with amc, muscular dystrophy, cp with (cognitive function etc….)



                              Go for it Alec J



                              Patty.



                              From: avenues2@yahoogroups.com [mailto:avenues2@yahoogroups.com] On Behalf Of Gail Brookhart
                              Sent: December-07-09 2:50 PM
                              To: avenues2@yahoogroups.com
                              Subject: Re: [avenues2] What is going on?





                              Keep us posted on the service dog. Alec has made noises about wanting a service dog so he's watching all the dog training shows on Animal Planet and likes to sit down with me to look at my dog breed books.

                              I assume that this is a Canine Companions for Independence placement?

                              Anyone else with news of interest about AMC and service dogs, sing out.

                              Thanks,

                              Gail

                              ----- Original Message -----
                              From: MARK & MARY HEINEN
                              To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>
                              Sent: Monday, December 07, 2009 1:36 PM
                              Subject: RE: [avenues2] What is going on?

                              Hi All,

                              We are still here too...just trying to weather the economic storm. My husband was diagnosed with lymphatic cancer a couple of years ago (right around the time the economy really started to tank). Thankfully he came through the cancer with flying colors, but his industry which is construction obviously did not. He is self employed and work has been very sparse with no unemployment to draw on. Thankfully I am employed so although I don't make a ton of money, I do have a paying, secure (I hope) job.

                              On a better note, Juliet is now 10 years old and in 5th grade and doing wonderfully. Our big news is that after 2 years of being on a waiting list for a service dog, we have finally moved to the top of the list and will be heading out for Columbus, Ohio Feb 1-13 for team training. How we are going to pay for the trip costs and whether my 10 year old van can actually make the trip remains to be seen, but we are in "damn the torpedoes" mode and are going for it!

                              Nice to hear everyone's updates as it sure had been quite awhile. Peace to everyone and may good things come your way!

                              Mary (mom to Avery age 12, Juliet age 10 and Camryn age 8)

                              ----- Original Message -----

                              From: Dee Dee HARRINGTON

                              To: avenues2

                              Sent: Mon, 7 Dec 2009 12:36:12 -0500 (EST)

                              Subject: RE: [avenues2] What is going on?

                              We are still here as well. Elijah is seven now and doing good. He loves math and science but is really struggling with reading and writing. He was just diagnosed with a bilateral moderate hearing loss and will be having surgery on his right ear soon to rebuild the bones in his ear. We also need to get to Seattle again and get his thumb released. Other than that he is doing good. Does anyone know the dates of the next Seattle Arthro clinic?Dee Dee

                              > To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>

                              > From: jddncb@... <mailto:jddncb%40hotmail.com>

                              > Date: Mon, 7 Dec 2009 10:41:35 -0500

                              > Subject: RE: [avenues2] What is going on?

                              >

                              >

                              > Wow Gail,

                              >

                              >

                              >

                              > We are in the same position. My husband lost his job back in August. He is in HR. I can't believe how bad it is out there. Very scary!!!

                              >

                              > Good luck!

                              >

                              >

                              >

                              > Jaime

                              >

                              >

                              >

                              >

                              > To: avenues2@yahoogroups.com <mailto:avenues2%40yahoogroups.com>

                              > From: brookhart1@... <mailto:brookhart1%40comcast.net>

                              > Date: Mon, 7 Dec 2009 10:36:00 -0500

                              > Subject: Re: [avenues2] What is going on?

                              >

                              >

                              >

                              >

                              >

                              > We're doing pretty well here in Indiana.

                              >

                              > Alec is 12 now and in middle school getting good grades and being social with the world. Our other son is missing his brother since he's still in elementary school.

                              >

                              > Husband lost his job. He works in IT/Computer or Customer Support if you have any leads.

                              >

                              > Gail & Bill, the parents

                              > Alec & Dane, the children, I think

                              >

                              > ----- Original Message -----

                              > From: Dimitra Giannopoulou

                              > To: 'Adults_With_Arthrogryposis' ; 'amc_adults' ; 'ArthrogryposisSupport' ; 'arthrogryposissupportgroup' ; 'Avenues' ; 'avenues2'

                              > Sent: Sunday, November 22, 2009 1:50 PM

                              > Subject: [avenues2] What is going on?

                              >

                              > Dear all,

                              >

                              > This is Dimitra from Greece. We have been awfully quit lately. Have I missed

                              > something.

                              >

                              > I have been a member of all AMC groups since 1999 and gone through all

                              > changes that have happened due to poor e-mail service. Lately, I keep

                              > receiving only commercial e-mails. Does this happen to you as well?

                              >

                              > Our groups have been a life saver for me. Mom of a girl with AMC. I feel

                              > that it is my duty to keep the groups alive in order to help other moms &

                              > dads that will feel as I was feeling. Is there something I can do to help?

                              >

                              > Dimitra

                              >

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

                              >

                              > ----------------------------------------------------------

                              >

                              > No virus found in this incoming message.

                              > Checked by AVG - www.avg.com

                              > Version: 9.0.709 / Virus Database: 270.14.76/2519 - Release Date: 11/22/09 02:38:00

                              >

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

                              >

                              >

                              >

                              >

                              >

                              > __________________________________________________________

                              > Windows 7: Unclutter your desktop. Learn more.

                              > http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec <http://www.microsoft.com/windows/windows-7/videos-tours.aspx?h=7sec&slideid=1&media=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_WIN_7secdemo:122009> &slideid=1&media=aero-shake-7second&listid=1&stop=1&ocid=PID24727::T:WLMTAGL:ON:WL:en-US:WWL_WIN_7secdemo:122009

                              >

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

                              >

                              >

                              >

                              > ------------------------------------

                              >

                              > Yahoo! Groups Links

                              >

                              >

                              >

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

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

                              ----------------------------------------------------------

                              No virus found in this incoming message.
                              Checked by AVG - www.avg.com
                              Version: 9.0.709 / Virus Database: 270.14.97/2550 - Release Date: 12/07/09 02:33:00

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





                              [Non-text portions of this message have been removed]
                            • Everett, Lori and Masha Johnson
                              Okay, I ll reply. Masha is now 15, an 11th grader, dual enrolled (after this week, she will also be a sophomore in college) and is doing extremely well. She
                              Message 14 of 17 , Dec 7, 2009
                              • 0 Attachment
                                Okay, I'll reply.

                                Masha is now 15, an 11th grader, dual enrolled (after this week, she will
                                also
                                be a sophomore in college) and is doing extremely well. She has had a
                                few surgeries on her ankles, but all is well. Her doctor gave her the
                                option of have her wrists placed in a neutral position, but she chose
                                to not have this surgery.

                                We've been in FL for 4 years now and still don't think of this place
                                as home......sad, isn't it. Who would have thought that living within
                                a hour of Mickey Mouse and Pooh
                                would be less than wonderful?

                                Merry Christmas (to heck with politically correct!!!) to all (oh, go ahead
                                and enjoy your holiday of choice!)!!!

                                Lori


                                --
                                Patriotism means to stand by the country. It does not mean to stand by the
                                president or any other public official, save exactly to the degree in which
                                he himself stands by the country. It is patriotic to support him insofar as
                                he efficiently serves the country. It is unpatriotic not to oppose him to
                                the exact extent that by inefficiently or otherwise he fails in his duty to
                                stand by the country. In either event, it is unpatriotic not to tell the
                                truth, whether about the president or anyone else.

                                Theodore Roosevelt

                                In God We Trust!!!!!

                                Big Government IS the problem...not the solution.


                                [Non-text portions of this message have been removed]
                              • TAHARTT@aol.com
                                Oh my heaven, Masha is a junior!?!? I am getting old : ) Take care, Traci Hart-Thomas Mom to Ana & Henry with AMC and 6 more ... From: Everett, Lori and Masha
                                Message 15 of 17 , Dec 8, 2009
                                • 0 Attachment
                                  Oh my heaven, Masha is a junior!?!?
                                  I am getting old : )

                                  Take care,

                                  Traci Hart-Thomas
                                  Mom to Ana & Henry with AMC and 6 more



                                  -----Original Message-----
                                  From: Everett, Lori and Masha Johnson <elm31178@...>
                                  To: avenues2@yahoogroups.com
                                  Sent: Mon, Dec 7, 2009 9:55 pm
                                  Subject: Re: [avenues2] What is going on?




                                  Okay, I'll reply.

                                  Masha is now 15, an 11th grader, dual enrolled (after this week, she will
                                  also
                                  be a sophomore in college) and is doing extremely well. She has had a
                                  few surgeries on her ankles, but all is well. Her doctor gave her the
                                  option of have her wrists placed in a neutral position, but she chose
                                  to not have this surgery.

                                  We've been in FL for 4 years now and still don't think of this place
                                  as home......sad, isn't it. Who would have thought that living within
                                  a hour of Mickey Mouse and Pooh
                                  would be less than wonderful?

                                  Merry Christmas (to heck with politically correct!!!) to all (oh, go ahead
                                  and enjoy your holiday of choice!)!!!

                                  Lori

                                  --
                                  Patriotism means to stand by the country. It does not mean to stand by the
                                  president or any other public official, save exactly to the degree in which
                                  he himself stands by the country. It is patriotic to support him insofar as
                                  he efficiently serves the country. It is unpatriotic not to oppose him to
                                  the exact extent that by inefficiently or otherwise he fails in his duty to
                                  stand by the country. In either event, it is unpatriotic not to tell the
                                  truth, whether about the president or anyone else.

                                  Theodore Roosevelt

                                  In God We Trust!!!!!

                                  Big Government IS the problem...not the solution.

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







                                  [Non-text portions of this message have been removed]
                                • Everett, Lori and Masha Johnson
                                  I know what you mean!!! Happening way to fast, isn t it? Lori ... -- Patriotism means to stand by the country. It does not mean to stand by the president or
                                  Message 16 of 17 , Dec 8, 2009
                                  • 0 Attachment
                                    I know what you mean!!! Happening way to fast, isn't it?

                                    Lori

                                    On Tue, Dec 8, 2009 at 8:45 AM, <TAHARTT@...> wrote:

                                    >
                                    >
                                    >
                                    > Oh my heaven, Masha is a junior!?!?
                                    > I am getting old : )
                                    >
                                    >
                                    > Take care,
                                    >
                                    > Traci Hart-Thomas
                                    > Mom to Ana & Henry with AMC and 6 more
                                    >
                                    >

                                    --
                                    Patriotism means to stand by the country. It does not mean to stand by the
                                    president or any other public official, save exactly to the degree in which
                                    he himself stands by the country. It is patriotic to support him insofar as
                                    he efficiently serves the country. It is unpatriotic not to oppose him to
                                    the exact extent that by inefficiently or otherwise he fails in his duty to
                                    stand by the country. In either event, it is unpatriotic not to tell the
                                    truth, whether about the president or anyone else.

                                    Theodore Roosevelt

                                    In God We Trust!!!!!

                                    Big Government IS the problem...not the solution.


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