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Re: [Arthrogryposis Support Group] Hello

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  • Dimitra Giannopoulou
    Dear Danette, First of all, congratulations for your grandson. My best to you and your children. I have a daughter, 10yo with AMC, AMyoplacia (clubfeet,
    Message 1 of 13 , Oct 1, 2009
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      Dear Danette,

      First of all, congratulations for your grandson. My best to you and your
      children.

      I have a daughter, 10yo with AMC, AMyoplacia (clubfeet, extended knees &
      knees, rotated inwards hands & shoulders). The first year was extremely
      difficult. Mixed feelings overwhelming us guilt, despair, hope, joy, sadness
      are a few of them.

      I was very lucky to become a member of Avenues very early. At that time our
      group was very strong. They got me through the really bad and "down" times.
      My husband and i finally came through this crisis and stressful time during
      the first 3 years.

      My daughter was EXTREMELY LUCKY too. All the right people beside her.
      Starting from PT therapist to Orthopaedic doctor. We were advised to start
      PT aggressively very early. She started at the age of 6 days old, daily for
      1 hour, whether it was a regular day of holiday. Casting on her feet started
      at 25 days old almost for 10 moths.
      PT did wonders. When she was 1 yo she had 1st surgery for clubfeet. Was
      successful and some time after Melina walked. All the "work" had been done
      with PT and stretcing from us. surgery put the final touch.
      Years later we found out that her doctor had forecasted when first saw her
      that she has 5% to become Sooooome time in her life shelf dependant. A year
      later he was doing her a surgery to see her run.

      It would be too long to write now what we have done after that...
      Melina loves soccer, swims and can eat & dress herself, wipe her nose. She
      is a great child.

      I will advise you what i was advised, but i do know that it is very
      difficult to comprehend and accept now.
      Enjoy your little angel
      Take one step at a time
      find a doctor you FEEL right with
      work a lot and hard. This is the "thing" you are to provide your child with.
      Not clothes and studies etc.

      I would strongly recomend PT if it is applicable to your case.

      And for you grandma stay by your children side. They will definitely need
      you.

      Feel free to contact me personally.

      Dimitra
      Greece




      2009/9/16 danette_bashaw <danette_bashaw@...>

      >
      >
      > Hello, I am new to the group. I have a grandson who was 2 months premature
      > with 3 diagnosis, arthrogrposis is being one of them. I am trying to get as
      > much feedback as possible on this. I would love to have any words of wisdom
      > and what me and my daughter should expect. Thank you, Danette
      >
      >
      >


      [Non-text portions of this message have been removed]
    • Emily Diehl
      Danetta, Congratulations again on your new bundl of joy. I know your family will be getting all kinds of suggestions and ideas. My oldest child who is now 13
      Message 2 of 13 , Oct 1, 2009
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        Danetta,
        Congratulations again on your new bundl of joy.
        I know your family will be getting all kinds of suggestions and ideas. My oldest child who is now 13 was born with AMC. She is lucky and has a very mild form of it, however she also has neuromuscular disease as well. We have yet to find a doctor who has seen the combintaion that she has. With that being said my advice is to lover him like the gift he is. Larn as much about his disorders as you can and always go with your gut. WE havae seen so many specialist and they have wanted to do so many surgeries. She has yet to have a surgery for AMC or the others but she walked for about 4 years b4 she had to go into a wheelchair full time. She is in regular classes at scchool and has agreat social life. She is my hero and inspiration. At 13 she knows more about her disorders than most doctors she sees. Just keep you head up and be proud of your new grandson the good vibes from you will help him too!

        --- On Thu, 10/1/09, Dimitra Giannopoulou <dimigian@...> wrote:


        From: Dimitra Giannopoulou <dimigian@...>
        Subject: Re: [Arthrogryposis Support Group] Hello
        To: arthrogryposissupportgroup@yahoogroups.com
        Date: Thursday, October 1, 2009, 1:28 PM


         



        Dear Danette,

        First of all, congratulations for your grandson. My best to you and your
        children.

        I have a daughter, 10yo with AMC, AMyoplacia (clubfeet, extended knees &
        knees, rotated inwards hands & shoulders). The first year was extremely
        difficult. Mixed feelings overwhelming us guilt, despair, hope, joy, sadness
        are a few of them.

        I was very lucky to become a member of Avenues very early. At that time our
        group was very strong. They got me through the really bad and "down" times.
        My husband and i finally came through this crisis and stressful time during
        the first 3 years.

        My daughter was EXTREMELY LUCKY too. All the right people beside her.
        Starting from PT therapist to Orthopaedic doctor. We were advised to start
        PT aggressively very early. She started at the age of 6 days old, daily for
        1 hour, whether it was a regular day of holiday. Casting on her feet started
        at 25 days old almost for 10 moths.
        PT did wonders. When she was 1 yo she had 1st surgery for clubfeet. Was
        successful and some time after Melina walked. All the "work" had been done
        with PT and stretcing from us. surgery put the final touch.
        Years later we found out that her doctor had forecasted when first saw her
        that she has 5% to become Sooooome time in her life shelf dependant. A year
        later he was doing her a surgery to see her run.

        It would be too long to write now what we have done after that...
        Melina loves soccer, swims and can eat & dress herself, wipe her nose. She
        is a great child.

        I will advise you what i was advised, but i do know that it is very
        difficult to comprehend and accept now.
        Enjoy your little angel
        Take one step at a time
        find a doctor you FEEL right with
        work a lot and hard. This is the "thing" you are to provide your child with.
        Not clothes and studies etc.

        I would strongly recomend PT if it is applicable to your case.

        And for you grandma stay by your children side. They will definitely need
        you.

        Feel free to contact me personally.

        Dimitra
        Greece

        2009/9/16 danette_bashaw <danette_bashaw@ yahoo.com>

        >
        >
        > Hello, I am new to the group. I have a grandson who was 2 months premature
        > with 3 diagnosis, arthrogrposis is being one of them. I am trying to get as
        > much feedback as possible on this. I would love to have any words of wisdom
        > and what me and my daughter should expect. Thank you, Danette
        >
        >
        >

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



















        [Non-text portions of this message have been removed]
      • cynthia reyes
        hello im sorry i havent responded i didnt find my password i would like to share pictures with u if you would like...my son is the same way he is very
        Message 3 of 13 , Oct 25, 2009
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          hello im sorry i havent responded i didnt find my password i would like to share pictures with u if you would like...my son is the same way he is very independent and he love to play and he also goes to normal school...

          --- On Thu, 10/1/09, Emily Diehl <e_kay_d@...> wrote:


          From: Emily Diehl <e_kay_d@...>
          Subject: Re: [Arthrogryposis Support Group] Hello
          To: arthrogryposissupportgroup@yahoogroups.com
          Date: Thursday, October 1, 2009, 11:43 AM


           



          Danetta,
          Congratulations again on your new bundl of joy.
          I know your family will be getting all kinds of suggestions and ideas. My oldest child who is now 13 was born with AMC. She is lucky and has a very mild form of it, however she also has neuromuscular disease as well. We have yet to find a doctor who has seen the combintaion that she has. With that being said my advice is to lover him like the gift he is. Larn as much about his disorders as you can and always go with your gut. WE havae seen so many specialist and they have wanted to do so many surgeries. She has yet to have a surgery for AMC or the others but she walked for about 4 years b4 she had to go into a wheelchair full time. She is in regular classes at scchool and has agreat social life. She is my hero and inspiration. At 13 she knows more about her disorders than most doctors she sees. Just keep you head up and be proud of your new grandson the good vibes from you will help him too!

          --- On Thu, 10/1/09, Dimitra Giannopoulou <dimigian@gmail. com> wrote:

          From: Dimitra Giannopoulou <dimigian@gmail. com>
          Subject: Re: [Arthrogryposis Support Group] Hello
          To: arthrogryposissuppo rtgroup@yahoogro ups.com
          Date: Thursday, October 1, 2009, 1:28 PM

           

          Dear Danette,

          First of all, congratulations for your grandson. My best to you and your
          children.

          I have a daughter, 10yo with AMC, AMyoplacia (clubfeet, extended knees &
          knees, rotated inwards hands & shoulders). The first year was extremely
          difficult. Mixed feelings overwhelming us guilt, despair, hope, joy, sadness
          are a few of them.

          I was very lucky to become a member of Avenues very early. At that time our
          group was very strong. They got me through the really bad and "down" times.
          My husband and i finally came through this crisis and stressful time during
          the first 3 years.

          My daughter was EXTREMELY LUCKY too. All the right people beside her.
          Starting from PT therapist to Orthopaedic doctor. We were advised to start
          PT aggressively very early. She started at the age of 6 days old, daily for
          1 hour, whether it was a regular day of holiday. Casting on her feet started
          at 25 days old almost for 10 moths.
          PT did wonders. When she was 1 yo she had 1st surgery for clubfeet. Was
          successful and some time after Melina walked. All the "work" had been done
          with PT and stretcing from us. surgery put the final touch.
          Years later we found out that her doctor had forecasted when first saw her
          that she has 5% to become Sooooome time in her life shelf dependant. A year
          later he was doing her a surgery to see her run.

          It would be too long to write now what we have done after that...
          Melina loves soccer, swims and can eat & dress herself, wipe her nose. She
          is a great child.

          I will advise you what i was advised, but i do know that it is very
          difficult to comprehend and accept now.
          Enjoy your little angel
          Take one step at a time
          find a doctor you FEEL right with
          work a lot and hard. This is the "thing" you are to provide your child with.
          Not clothes and studies etc.

          I would strongly recomend PT if it is applicable to your case.

          And for you grandma stay by your children side. They will definitely need
          you.

          Feel free to contact me personally.

          Dimitra
          Greece

          2009/9/16 danette_bashaw <danette_bashaw@ yahoo.com>

          >
          >
          > Hello, I am new to the group. I have a grandson who was 2 months premature
          > with 3 diagnosis, arthrogrposis is being one of them. I am trying to get as
          > much feedback as possible on this. I would love to have any words of wisdom
          > and what me and my daughter should expect. Thank you, Danette
          >
          >
          >

          [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]
        • Danette
          Hello, its been awhile. We are flying to the Dupont clinic in Delaware tomorrow for my grandson.Has anyone been there and if so how was it for you. We are
          Message 4 of 13 , Jan 13, 2010
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            Hello, its been awhile. We are flying to the Dupont clinic in Delaware tomorrow for my grandson.Has anyone been there and if so how was it for you. We are going down to have him casted and looked at pretty much as there is noone around our state who has dealt with the artro and amodysplasia that he has. I apreciate any feedback. Thank you Danette
          • tracey_schalk
            I ve heard good things about Dupont I go to the Shriners in Philadelphia. They have a lower extremity orthopedist here who specializes in Arthrogryposis & he
            Message 5 of 13 , Jan 14, 2010
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              I've heard good things about Dupont

              I go to the Shriners in Philadelphia. They have a lower extremity orthopedist here who specializes in Arthrogryposis & he works along side an excellent hand surgeon. They're able to collaborate on surgeries so the child isn't put under as often.

              Shriners is amazing!!

              --- In arthrogryposissupportgroup@yahoogroups.com, "Danette" <danette_bashaw@...> wrote:
              >
              > Hello, its been awhile. We are flying to the Dupont clinic in Delaware tomorrow for my grandson.Has anyone been there and if so how was it for you. We are going down to have him casted and looked at pretty much as there is noone around our state who has dealt with the artro and amodysplasia that he has. I apreciate any feedback. Thank you Danette
              >
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