Loading ...
Sorry, an error occurred while loading the content.
 

Introduction

Expand Messages
  • Nancy
    Hi!! We are in the process of adopting a 6 yr old girl with arthrogryposis from Eastern Europe. All I have is pictures of her. We have been told that she has
    Message 1 of 15 , Feb 17, 2010
      Hi!!
      We are in the process of adopting a 6 yr old girl with arthrogryposis from Eastern Europe.
      All I have is pictures of her. We have been told that she has had 2 hip surgeries and was due for another one and we asked that they not do it so we can take care of it at home. When I asked what they were doing for her hips I was told it was to build a foundation. No idea :)
      Her bilateral club feet have not been touched so we will be having that done too.
      She is mobile and walks around. I have talked to 2 other families that met her and they say she walks well and is able to use her hands well.
      Our pediatrician will be the first to see her once we get home and then we will get referred to an ortho guy.
      Can I get any suggestions on what we should do? what we should ask?
      I am going to try to get copies of all her medical records and have asked for her surgical notes.
      We found out this morning that we will be heading out to get her the second week of march.
      Thanks so much!!
      nancy
    • Wendy
      Congratulations on your upcoming adoption. We are also in the process of adopting but we are adopting a 18 month old boy from foster care. He was born with
      Message 2 of 15 , Feb 17, 2010
        Congratulations on your upcoming adoption. We are also in the process of
        adopting but we are adopting a 18 month old boy from foster care. He was
        born with bilateral club feet also. He has gone through the casting
        process. He is able to bear some weight with the use of feet/ankle support.
        We are having surgery done next month to release contractures in his hips
        and ankles . Hopefully this willa increase his weight bearing and possibly
        allow him to do some walking eventually. We are holding off on knee surgery
        until he is older.

        Sorry I am not the best source of information because we are still learning
        but I wanted to offer my support.


        Wendy



        From: arthrogryposissupportgroup@yahoogroups.com
        [mailto:arthrogryposissupportgroup@yahoogroups.com] On Behalf Of Nancy
        Sent: Wednesday, February 17, 2010 10:46 AM
        To: arthrogryposissupportgroup@yahoogroups.com
        Subject: [Arthrogryposis Support Group] Introduction





        Hi!!
        We are in the process of adopting a 6 yr old girl with arthrogryposis from
        Eastern Europe.
        All I have is pictures of her. We have been told that she has had 2 hip
        surgeries and was due for another one and we asked that they not do it so we
        can take care of it at home. When I asked what they were doing for her hips
        I was told it was to build a foundation. No idea :)
        Her bilateral club feet have not been touched so we will be having that done
        too.
        She is mobile and walks around. I have talked to 2 other families that met
        her and they say she walks well and is able to use her hands well.
        Our pediatrician will be the first to see her once we get home and then we
        will get referred to an ortho guy.
        Can I get any suggestions on what we should do? what we should ask?
        I am going to try to get copies of all her medical records and have asked
        for her surgical notes.
        We found out this morning that we will be heading out to get her the second
        week of march.
        Thanks so much!!
        nancy





        [Non-text portions of this message have been removed]
      • Susie Baker
        I am so happy to read your message that you have so much love in your heart to adopt this little girl. I have a 6 year old daughter with AMC. I can t imagine
        Message 3 of 15 , Feb 17, 2010
          I am so happy to read your message that you have so much love in your
          heart to adopt this little girl. I have a 6 year old daughter with
          AMC. I can't imagine her going thru all those surgeries and treatments
          without a family that loves her unconditionally. Bless your heart!

          It sounds like you are on the right path to helping her. We live in So
          Ca. and take our daughter to Shriners Childrens Hospital where they
          are familiar with AMC. You might want to look into one of their
          hospitals close to you. I don't have any idea about the hip thing. You
          are wise to wait and get second opinions. I'm surprised they haven't
          taken care of her feet already.

          I wish you well on the adoption of your little girl and I would love
          it if you kept us updated. If you have any specific questions or
          somebody to chat with you can contact me directly.

          Blessings,

          Susie Baker

          Sent from my iPhone

          On Feb 17, 2010, at 8:46 AM, "Nancy" <nktdft@...> wrote:

          > Hi!!
          > We are in the process of adopting a 6 yr old girl with
          > arthrogryposis from Eastern Europe.
          > All I have is pictures of her. We have been told that she has had 2
          > hip surgeries and was due for another one and we asked that they not
          > do it so we can take care of it at home. When I asked what they were
          > doing for her hips I was told it was to build a foundation. No idea :)
          > Her bilateral club feet have not been touched so we will be having
          > that done too.
          > She is mobile and walks around. I have talked to 2 other families
          > that met her and they say she walks well and is able to use her
          > hands well.
          > Our pediatrician will be the first to see her once we get home and
          > then we will get referred to an ortho guy.
          > Can I get any suggestions on what we should do? what we should ask?
          > I am going to try to get copies of all her medical records and have
          > asked for her surgical notes.
          > We found out this morning that we will be heading out to get her the
          > second week of march.
          > Thanks so much!!
          > nancy
          >
          >


          [Non-text portions of this message have been removed]
        • Rachel Thomas
          Hello Wendy! What kind of contractures in the knee does your son have? Our son was born with arthrogryposis effecting his lower limbs and hands. We have been
          Message 4 of 15 , Feb 17, 2010
            Hello Wendy!
            What kind of contractures in the knee does your son have? Our son was
            born with arthrogryposis effecting his lower limbs and hands. We have
            been able to get 90 degree flexion through physical therapy and
            stretching. What kind of surgery have the drs reccomended for your
            sons knees?
            Rachel- California

            On Feb 17, 2010, at 9:56 AM, "Wendy" <3angelsmommie@...> wrote:

            > Congratulations on your upcoming adoption. We are also in the
            > process of
            > adopting but we are adopting a 18 month old boy from foster care. He
            > was
            > born with bilateral club feet also. He has gone through the casting
            > process. He is able to bear some weight with the use of feet/ankle
            > support.
            > We are having surgery done next month to release contractures in his
            > hips
            > and ankles . Hopefully this willa increase his weight bearing and
            > possibly
            > allow him to do some walking eventually. We are holding off on knee
            > surgery
            > until he is older.
            >
            > Sorry I am not the best source of information because we are still
            > learning
            > but I wanted to offer my support.
            >
            > Wendy
            >
            > From: arthrogryposissupportgroup@yahoogroups.com
            > [mailto:arthrogryposissupportgroup@yahoogroups.com] On Behalf Of Nancy
            > Sent: Wednesday, February 17, 2010 10:46 AM
            > To: arthrogryposissupportgroup@yahoogroups.com
            > Subject: [Arthrogryposis Support Group] Introduction
            >
            > Hi!!
            > We are in the process of adopting a 6 yr old girl with
            > arthrogryposis from
            > Eastern Europe.
            > All I have is pictures of her. We have been told that she has had 2
            > hip
            > surgeries and was due for another one and we asked that they not do
            > it so we
            > can take care of it at home. When I asked what they were doing for
            > her hips
            > I was told it was to build a foundation. No idea :)
            > Her bilateral club feet have not been touched so we will be having
            > that done
            > too.
            > She is mobile and walks around. I have talked to 2 other families
            > that met
            > her and they say she walks well and is able to use her hands well.
            > Our pediatrician will be the first to see her once we get home and
            > then we
            > will get referred to an ortho guy.
            > Can I get any suggestions on what we should do? what we should ask?
            > I am going to try to get copies of all her medical records and have
            > asked
            > for her surgical notes.
            > We found out this morning that we will be heading out to get her the
            > second
            > week of march.
            > Thanks so much!!
            > nancy
            >
            > [Non-text portions of this message have been removed]
            >
            >


            [Non-text portions of this message have been removed]
          • gumyee
            Congrats! While I don t know for sure, usually building a foundation means they are building up the hip socket so that the ball will fit in better and
            Message 5 of 15 , Feb 18, 2010
              Congrats!
              While I don't know for sure, usually "building a foundation" means they are building up the hip "socket" so that the "ball" will fit in better and not come out (she may have a subluxation or dislocation of the hip?). If you have the time, I would ask your pediatrician Now for several doctors he refers to for orthopedics and then interview them about their arthrogryposis and pediatric experience to make a choice ahead of time of who you would like to work with.
              Diane
              --- In arthrogryposissupportgroup@yahoogroups.com, "Nancy" <nktdft@...> wrote:
              >
              > Hi!!
              > We are in the process of adopting a 6 yr old girl with arthrogryposis from Eastern Europe.
              > All I have is pictures of her. We have been told that she has had 2 hip surgeries and was due for another one and we asked that they not do it so we can take care of it at home. When I asked what they were doing for her hips I was told it was to build a foundation. No idea :)
              > Her bilateral club feet have not been touched so we will be having that done too.
              > She is mobile and walks around. I have talked to 2 other families that met her and they say she walks well and is able to use her hands well.
              > Our pediatrician will be the first to see her once we get home and then we will get referred to an ortho guy.
              > Can I get any suggestions on what we should do? what we should ask?
              > I am going to try to get copies of all her medical records and have asked for her surgical notes.
              > We found out this morning that we will be heading out to get her the second week of march.
              > Thanks so much!!
              > nancy
              >
            • Wendy
              We have had two appts with the ortho doctor since having our son placed with us. The first time they were rushed and did not really tell us much. The second
              Message 6 of 15 , Feb 18, 2010
                We have had two appts with the ortho doctor since having our son placed with us. The first time they were rushed and did not really tell us much. The second time I was better prepared. I came with our PT reports and a list of questions. I pushed for surgery on his hips because he does no weight bearing on his right side due to the contracture of the hip. The doctor said since we were in surgery he would possibly do the ankles also. He said that knees were not an option for surgery due to his age so we did not get into what our options are in the future. I am just hopeful at this point that we will be able to get some weight bearing on the right side so he can hold himself up or stand using furniture or a walker for support.



                As I understand arthrogryposis there are several different causes. Is this correct? We have been to the genetics clinic, neuro, and ortho and all of them tell me that the cause for our son is unknown. I have also been told that we have to “keep digging for clues in the puzzle”. Only his lower limbs are affected. We were told when he was placed with us he had no developmental issues but now that time has gone by it has been determined that he does have some delays and has started speech therapy.



                Wendy



                From: arthrogryposissupportgroup@yahoogroups.com [mailto:arthrogryposissupportgroup@yahoogroups.com] On Behalf Of Rachel Thomas
                Sent: Wednesday, February 17, 2010 3:05 PM
                To: arthrogryposissupportgroup@yahoogroups.com
                Subject: Re: [Arthrogryposis Support Group] Introduction





                Hello Wendy!
                What kind of contractures in the knee does your son have? Our son was
                born with arthrogryposis effecting his lower limbs and hands. We have
                been able to get 90 degree flexion through physical therapy and
                stretching. What kind of surgery have the drs reccomended for your
                sons knees?
                Rachel- California

                On Feb 17, 2010, at 9:56 AM, "Wendy" <3angelsmommie@... <mailto:3angelsmommie%40charter.net> > wrote:

                > Congratulations on your upcoming adoption. We are also in the
                > process of
                > adopting but we are adopting a 18 month old boy from foster care. He
                > was
                > born with bilateral club feet also. He has gone through the casting
                > process. He is able to bear some weight with the use of feet/ankle
                > support.
                > We are having surgery done next month to release contractures in his
                > hips
                > and ankles . Hopefully this willa increase his weight bearing and
                > possibly
                > allow him to do some walking eventually. We are holding off on knee
                > surgery
                > until he is older.
                >
                > Sorry I am not the best source of information because we are still
                > learning
                > but I wanted to offer my support.
                >
                > Wendy
                >
                > From: arthrogryposissupportgroup@yahoogroups.com <mailto:arthrogryposissupportgroup%40yahoogroups.com>
                > [mailto:arthrogryposissupportgroup@yahoogroups.com <mailto:arthrogryposissupportgroup%40yahoogroups.com> ] On Behalf Of Nancy
                > Sent: Wednesday, February 17, 2010 10:46 AM
                > To: arthrogryposissupportgroup@yahoogroups.com <mailto:arthrogryposissupportgroup%40yahoogroups.com>
                > Subject: [Arthrogryposis Support Group] Introduction
                >
                > Hi!!
                > We are in the process of adopting a 6 yr old girl with
                > arthrogryposis from
                > Eastern Europe.
                > All I have is pictures of her. We have been told that she has had 2
                > hip
                > surgeries and was due for another one and we asked that they not do
                > it so we
                > can take care of it at home. When I asked what they were doing for
                > her hips
                > I was told it was to build a foundation. No idea :)
                > Her bilateral club feet have not been touched so we will be having
                > that done
                > too.
                > She is mobile and walks around. I have talked to 2 other families
                > that met
                > her and they say she walks well and is able to use her hands well.
                > Our pediatrician will be the first to see her once we get home and
                > then we
                > will get referred to an ortho guy.
                > Can I get any suggestions on what we should do? what we should ask?
                > I am going to try to get copies of all her medical records and have
                > asked
                > for her surgical notes.
                > We found out this morning that we will be heading out to get her the
                > second
                > week of march.
                > Thanks so much!!
                > nancy
                >
                > [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]
              Your message has been successfully submitted and would be delivered to recipients shortly.