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Re: [Adults AMC] Child with arthrogryposis

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  • JRTowner@aol.com
    You might try signing up with the Avenues group list on Yahoo and ask there. There are lots of parents with small kids on that list. Shiners might have a
    Message 1 of 13 , Mar 8, 2004
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      You might try signing up with the Avenues group list on Yahoo and ask there.
      There are lots of parents with small kids on that list. Shiners might have a
      list. If you have a local hospital with a university associated with it you
      might find one through there. What about the folks who diagnosed your baby,
      could they help? Even try your insurance company or a doctors referral
      service. Most pediatricians have never seen a case of AMC.

      There is a book on it called "Arthrogryposis: A Text Atlas" by Lynn T.
      Staheli (Editor), Kenneth M. Jaffe (Editor), Diane O. Paholke (Editor), Judith G.
      Hall (Editor) Hardcover, Cambridge University Press, 1998, ISBN # 0521571065.
      Check around for the book. It is available through almost any book dealer that
      will order it for you like Amazon. But check a number of sites. I think
      Walmart's is the cheapest right now. It is pricey -- about $90.00-$100.00. It is
      not a large book but it has a lot of information. Also if you have a medical
      library connected to a University you might find some information there. You
      most likely will have to educate the doctor as most have never seen a case of
      this.



      Denise
      JRT's Rule


      [Non-text portions of this message have been removed]
    • TERRY2745@AOL.COM
      Dear saba33333, this woman OBVIOUSLY is KEEPING her baby, otherwise she would not have written. She was very clear about that ~Theresa I n a message dated
      Message 2 of 13 , Mar 9, 2004
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        Dear saba33333, this woman OBVIOUSLY is KEEPING her baby, otherwise she would
        not have written. She was very clear about that
        ~Theresa

        I
        n a message dated 3/9/2004 8:42:15 AM US Eastern Standard Time,
        saba33333@... writes:

        >
        > Hello beve.
        > I got ursd letter today. I am glad to hear it.
        > I cant understand urs message clearly in special the first line.
        > Please write clearly ,again, &I shall be thankfull to u.
        > How doesu come to know that she is with a child with AMC. will u go for
        > Delivry or will decide for abbortion.
        > What kind of paper work u have done.Please tell me immediatly.
        > I am waiting for urs reply eagerly.
        >
        > beverlyhansetburch <beverlyhansetburch@...> wrote:
        > Hey. I am 28 weeks pregnant with a girl named Bonnie. She has been
        > diagnosed with arthrogryposis. I already have paperwork into
        > Shriners. I am trying to locate a pediatrician. I am in Oregon. Any
        > ideas?
        >



        [Non-text portions of this message have been removed]
      • moby324
        Easy ladies - Beverly - I m on the East Coast so my experience has been with Du Pont Institute in delaware. As far as I know, it has the highest level of
        Message 3 of 13 , Mar 9, 2004
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          Easy ladies -

          Beverly - I'm on the East Coast so my experience has been with Du
          Pont Institute in delaware. As far as I know, it has the highest
          level of funding for those with AMC, among other similar conditions.
          Where is Shriner's? Isn't it in Philly?


          --- In amc_adults@yahoogroups.com, TERRY2745@A... wrote:
          > Dear saba33333, this woman OBVIOUSLY is KEEPING her baby,
          otherwise she would
          > not have written. She was very clear about that
          > ~Theresa
          >
          > I
          > n a message dated 3/9/2004 8:42:15 AM US Eastern Standard Time,
          > saba33333@y... writes:
          >
          > >
          > > Hello beve.
          > > I got ursd letter today. I am glad to hear it.
          > > I cant understand urs message clearly in special the first line.
          > > Please write clearly ,again, &I shall be thankfull to u.
          > > How doesu come to know that she is with a child with AMC. will u
          go for
          > > Delivry or will decide for abbortion.
          > > What kind of paper work u have done.Please tell me immediatly.
          > > I am waiting for urs reply eagerly.
          > >
          > > beverlyhansetburch <beverlyhansetburch@y...> wrote:
          > > Hey. I am 28 weeks pregnant with a girl named Bonnie. She has
          been
          > > diagnosed with arthrogryposis. I already have paperwork into
          > > Shriners. I am trying to locate a pediatrician. I am in Oregon.
          Any
          > > ideas?
          > >
          >
          >
          >
          > [Non-text portions of this message have been removed]
        • Beverly Hanset-Burch
          Shriners is a network of childrens hospitals. When I was a child they were known as Shriners Hospital for Crippled Children. Now they are known as Shriners.
          Message 4 of 13 , Mar 9, 2004
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            Shriners is a network of childrens' hospitals. When I was a child they were known as Shriners Hospital for Crippled Children. Now they are known as Shriners. They are free for all children. I am in Oregon, and this is the only orthopedic hospital for children available. There is Dorenbechers Children's Hospital for all children problems, but Shriners is where everyone has directed me to.

            Theresa.... almost a day doesn't go by that someone asks me about aborting. NO way! I consented to an amniocentesis at 23 weeks because I was told it could be related to various trisomy problems. That has all come back normal. I didn't even want the amnio because of miscarriage risks, but I felt almost backed into a wall. I am relaxing more now, knowing that most likely this will be her only problem. It still confuses me though. They tell me it is due to the shape of my uterus. It is bicornuate, which means it has two distinct horns. However, I have 17, 16 and 13 year old sons. They had room to grow! Also, she kicks more than my first two boys did.

            Anyway, for Shriners you need a sponsor. Through my mother I located a sponsor at the VFW in Vancouver. We did the necessary paperwork and we are waiting to hear back. I am trying to get in for a consult and an opinion on the ultrasounds that have been done. I also have a contact through La Leche League who is trying to find a good pediatric therapist in my area. I contacted LLL because I do want to nurse this child, and they had all kinds of wonderful advise. I nursed my other children, but with Bonnie there could be jaw problems.

            My next appointment is next Monday. They are looking for a gastric bubble, to rule out esophageal atresia, a condition where nothing gets to the stomach. It can be corrected by surgery, but I just have a sense she doesn't have this problem. They will also be checking on her growth.

            I am not new to problems in pregnancy. My oldest is one of triplets. The other two died in utero at 13 weeks. I didn't know I was pregnant with triplets, or I wouldn't have been teaching! They told me he would die so I should abort. I did not, obviously. They found my odd uterus. Oldest kid grew all on the left side. After being assured the uterus was no problem, I had middle kid. He connected very low, and so he was born 9 weeks early. He only had breast milk even though he was in NICU for 3 wks 6 days... I pumped, and I was also allowed to nurse him before they ever tube fed him. They told me he would have all kinds of mental issues. He is in all honors courses except for math, which he hates, and he is going to France this summer as an exchange student. He speaks French beautifully. (We've had over 60 exchange students, so it is finally my kid's turn.... but they all have been to Finland and Japan too, but they were really small). (Oh, he has had to work for this money himself...
            we are of modest means) Last kid was on the right side. Natural delivery after two ceseareans. No problems. Home within a few hours! Then we had a meningitis scare... but all is fine now.

            Anyway, apparently Bonnie has her head in the left uterus, and her bottom down low, and her legs on the right side. She has clubbed hands and feed they tell me, although on a 3D ultrasound we could clearly make out fingers in the classic I love you sign language. Her hands are in front of her face, elbows flexed. Her legs are straight out. I believe the movement I feel is the hands. The leg area I do not feel as much. I asked if they could push her to one uterus or another, and my doctor giggled. Not at me, but that they only wished that they could. It doesn't work like that! She has chosen how she is positioned. I wish I could reach in and begin therapy!

            So at this point in the game I can only wait and see. They tell me that it is at its worst at birth, and only improves. As long as she has a mind, I can work with that! I am not good with Alzheimers patients, non improving conditions, etc. But a mind! I can work with that. They have assured me that she should be fine that way. In addition, I have purchased Arthrogryposis, A Text Atlas. I think I have done all I can do, except for locating a pediatrician. I would like one that advocates nursing, won't get on my case for co sleeping, and that has seen or at least heart of arthrogryposis. My other concern is any special clothing or diapering. I am a firm cloth diaperer, although they aren't making the ones I used years ago. Anyway, I am wondering about her arms, if I can get a onesie on her or a t-shirt on her. And then all the unknowns! Will they cast her, things like that.

            So this is long. My typing teacher was right, typing has proven to be just about the most useful high school class I ever took! But thanks for letting me share. It is incredibly hard to hurry up and wait these last 11 weeks 5 days. Sometimes I wish I had no clue so I could relax and do normal pregnancy things. Other times I am glad I have a heads up so I know the NICU procedure, tests that they will do, etc. Oh, and for anyone curious, yes Bonnie is a surprise, a welcome surprise but a surprise all the same. I am 39, husband 42, we were using birth control and we were sober. Middle kid used me as an example in health class! I think my bowling ball body spoke heaps more than any teacher or textbook!

            So, I am looking for a pediatrician. I am looking for friends. I want to hear good success stories of people with AMC and from parents. And anything you all may think is useful.

            moby324 <moby324@...> wrote:
            Easy ladies -

            Beverly - I'm on the East Coast so my experience has been with Du
            Pont Institute in delaware. As far as I know, it has the highest
            level of funding for those with AMC, among other similar conditions.
            Where is Shriner's? Isn't it in Philly?


            --- In amc_adults@yahoogroups.com, TERRY2745@A... wrote:
            > Dear saba33333, this woman OBVIOUSLY is KEEPING her baby,
            otherwise she would
            > not have written. She was very clear about that
            > ~Theresa
            >
            > I
            > n a message dated 3/9/2004 8:42:15 AM US Eastern Standard Time,
            > saba33333@y... writes:
            >
            > >
            > > Hello beve.
            > > I got ursd letter today. I am glad to hear it.
            > > I cant understand urs message clearly in special the first line.
            > > Please write clearly ,again, &I shall be thankfull to u.
            > > How doesu come to know that she is with a child with AMC. will u
            go for
            > > Delivry or will decide for abbortion.
            > > What kind of paper work u have done.Please tell me immediatly.
            > > I am waiting for urs reply eagerly.
            > >
            > > beverlyhansetburch <beverlyhansetburch@y...> wrote:
            > > Hey. I am 28 weeks pregnant with a girl named Bonnie. She has
            been
            > > diagnosed with arthrogryposis. I already have paperwork into
            > > Shriners. I am trying to locate a pediatrician. I am in Oregon.
            Any
            > > ideas?
            > >
            >
            >
            >
            > [Non-text portions of this message have been removed]



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          • tucmum@aol.com
            Lol I almost addressed this to bonnie then noticed that is your daughters name. I wanted to say How exciting it must be to be expecting. Your going to enjoy
            Message 5 of 13 , Mar 9, 2004
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              Lol I almost addressed this to bonnie then noticed that is your daughters
              name.
              I wanted to say How exciting it must be to be expecting. Your going to enjoy
              every min of it and I am sure you know that with having three other children
              but hey I have to say Girls are more fun.
              Is your normal pediatrician open to questions? The reason I say that is he
              already knows you he knows your family and when it comes to the AMC you will be
              going to orthos PT's and OT's so honestly we only got to ours for normal
              things like colds and shots. The only other thing we do differently is we have
              copies of all of our visits sent to him to keep him up to date on the progress of
              Tuckers amc.
              Honestly not many pediatricians do know much about amc but you will be able
              to find a great one if they are under the understanding that it is being
              treated by the other team members.
              One thing we did have to remind ours weight and height are going to be
              different for most children with amc. And we use the chart out of the Book someone
              else has told you about. well we did until my son actually got back on to the
              "regular" charts.
              Here is my sons web site for you and please don't let anyone stop you from
              asking questions. Tuckers new home page.
              Oh living in Oregon have you thought about taking her to the Seattle
              Children's hospital for their AMC clinic? We do that once a year just to be sure our
              son is on track. just a thought
              Have a wonderful day and just relax you are way ahead of the game compared to
              so many of us that had no clue that our children were going to be effected
              with the amc.
              TRACI Tuckers Mom (6 years old with amc)



              [Non-text portions of this message have been removed]
            • audiohnd
              Hi, I am in the greater Puget Sound area, in Washington State(near Seattle)where most of the Doctors that wrote the book mentioned in this post practice at
              Message 6 of 13 , Mar 9, 2004
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                Hi, I am in the greater Puget Sound area, in Washington State(near
                Seattle)where most of the Doctors that wrote the book mentioned in
                this post practice at Childrens Hospital and Medical center. Dr Lynn
                Staheli and Dr Judith Hall are probably the top two Physicians on
                AMC (I could be biased as Dr Staheli was my Dr for 16 years of my
                life), Dr Hall is currently practicing in Vancouver Canada, but will
                be retireing within the year and she wants to devote her energies to
                doing research into AMC in adults at that time(she has already
                started some . David

                PS some how my yahoo account got messed up and I had to rejoin with
                a different emaill address
                --- In amc_adults@yahoogroups.com, JRTowner@a... wrote:
                > You might try signing up with the Avenues group list on Yahoo and
                ask there.
                > There are lots of parents with small kids on that list. Shiners
                might have a
                > list. If you have a local hospital with a university associated
                with it you
                > might find one through there. What about the folks who diagnosed
                your baby,
                > could they help? Even try your insurance company or a doctors
                referral
                > service. Most pediatricians have never seen a case of AMC.
                >
                > There is a book on it called "Arthrogryposis: A Text Atlas" by
                Lynn T.
                > Staheli (Editor), Kenneth M. Jaffe (Editor), Diane O. Paholke
                (Editor), Judith G.
                > Hall (Editor) Hardcover, Cambridge University Press, 1998, ISBN #
                0521571065.
                > Check around for the book. It is available through almost any
                book dealer that
                > will order it for you like Amazon. But check a number of sites.
                I think
                > Walmart's is the cheapest right now. It is pricey -- about $90.00-
                $100.00. It is
                > not a large book but it has a lot of information. Also if you
                have a medical
                > library connected to a University you might find some information
                there. You
                > most likely will have to educate the doctor as most have never
                seen a case of
                > this.
                >
                >
                >
                > Denise
                > JRT's Rule
                >
                >
                > [Non-text portions of this message have been removed]
              • Beverly Hanset-Burch
                Traci, My name is Bev. I guess I should have included that! Yes I have thought about the Seattle hospital. I have to figure out what all that costs too... we
                Message 7 of 13 , Mar 9, 2004
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                  Traci,
                  My name is Bev. I guess I should have included that!
                  Yes I have thought about the Seattle hospital. I have to figure out what all that costs too... we don't have great insurance.
                  My favorite pediatrician died himself of brain cancer at a very young age. My boys have been just seeing nurses. They are all of the ages where we only really go in for scout or sport forms! So I guess I just go about finding another one.
                  I don't see your son's page address. I would love to take a look at it. When did you find out he had AMC? Do you have other kids? I guess the web site would tell me all that, wouldn't it?

                  tucmum@... wrote:
                  Lol I almost addressed this to bonnie then noticed that is your daughters
                  name.
                  I wanted to say How exciting it must be to be expecting. Your going to enjoy
                  every min of it and I am sure you know that with having three other children
                  but hey I have to say Girls are more fun.
                  Is your normal pediatrician open to questions? The reason I say that is he
                  already knows you he knows your family and when it comes to the AMC you will be
                  going to orthos PT's and OT's so honestly we only got to ours for normal
                  things like colds and shots. The only other thing we do differently is we have
                  copies of all of our visits sent to him to keep him up to date on the progress of
                  Tuckers amc.
                  Honestly not many pediatricians do know much about amc but you will be able
                  to find a great one if they are under the understanding that it is being
                  treated by the other team members.
                  One thing we did have to remind ours weight and height are going to be
                  different for most children with amc. And we use the chart out of the Book someone
                  else has told you about. well we did until my son actually got back on to the
                  "regular" charts.
                  Here is my sons web site for you and please don't let anyone stop you from
                  asking questions. Tuckers new home page.
                  Oh living in Oregon have you thought about taking her to the Seattle
                  Children's hospital for their AMC clinic? We do that once a year just to be sure our
                  son is on track. just a thought
                  Have a wonderful day and just relax you are way ahead of the game compared to
                  so many of us that had no clue that our children were going to be effected
                  with the amc.
                  TRACI Tuckers Mom (6 years old with amc)



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


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                • Beverly Hanset-Burch
                  Yes I have heard the book authors are the best of the best. I will look at our local university hospital again. My doctor did not have any suggestions. He just
                  Message 8 of 13 , Mar 9, 2004
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                    Yes I have heard the book authors are the best of the best. I will look at our local university hospital again. My doctor did not have any suggestions. He just emphasized that it is a rare condition.

                    audiohnd <dr_kennedy@...> wrote:
                    Hi, I am in the greater Puget Sound area, in Washington State(near
                    Seattle)where most of the Doctors that wrote the book mentioned in
                    this post practice at Childrens Hospital and Medical center. Dr Lynn
                    Staheli and Dr Judith Hall are probably the top two Physicians on
                    AMC (I could be biased as Dr Staheli was my Dr for 16 years of my
                    life), Dr Hall is currently practicing in Vancouver Canada, but will
                    be retireing within the year and she wants to devote her energies to
                    doing research into AMC in adults at that time(she has already
                    started some . David

                    PS some how my yahoo account got messed up and I had to rejoin with
                    a different emaill address
                    --- In amc_adults@yahoogroups.com, JRTowner@a... wrote:
                    > You might try signing up with the Avenues group list on Yahoo and
                    ask there.
                    > There are lots of parents with small kids on that list. Shiners
                    might have a
                    > list. If you have a local hospital with a university associated
                    with it you
                    > might find one through there. What about the folks who diagnosed
                    your baby,
                    > could they help? Even try your insurance company or a doctors
                    referral
                    > service. Most pediatricians have never seen a case of AMC.
                    >
                    > There is a book on it called "Arthrogryposis: A Text Atlas" by
                    Lynn T.
                    > Staheli (Editor), Kenneth M. Jaffe (Editor), Diane O. Paholke
                    (Editor), Judith G.
                    > Hall (Editor) Hardcover, Cambridge University Press, 1998, ISBN #
                    0521571065.
                    > Check around for the book. It is available through almost any
                    book dealer that
                    > will order it for you like Amazon. But check a number of sites.
                    I think
                    > Walmart's is the cheapest right now. It is pricey -- about $90.00-
                    $100.00. It is
                    > not a large book but it has a lot of information. Also if you
                    have a medical
                    > library connected to a University you might find some information
                    there. You
                    > most likely will have to educate the doctor as most have never
                    seen a case of
                    > this.
                    >
                    >
                    >
                    > Denise
                    > JRT's Rule
                    >
                    >
                    > [Non-text portions of this message have been removed]



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                  • tucmum@aol.com
                    In a message dated 3/9/04 11:22:34 AM Pacific Standard Time, ... Bev, Did you get the second email I sent to you personally (it had the link)? For some reason
                    Message 9 of 13 , Mar 9, 2004
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                      In a message dated 3/9/04 11:22:34 AM Pacific Standard Time,
                      beverlyhansetburch@... writes:

                      > I don't see your son's page address. I would love to take a look at it.
                      > When did you find out he had AMC? Do you have other kids? I guess the web site
                      > would tell me all that, wouldn't it?
                      >

                      Bev,
                      Did you get the second email I sent to you personally (it had the link)? For
                      some reason this group don't let pictures, files or links go through so I sent
                      it to you in the other email. Yes, I have a daughter that is 11 years old and
                      in the sixth grade. She don't have amc and with her there was no problems
                      during pregnancy at all.
                      with tucker we didn't have any clue there was anything wrong other then being
                      in a breech position due to his position we did have 9 ultra sounds but
                      nothing showed up. In some ways I am glad because of the stress factors but in
                      others I would have enjoyed having everything lined up before he was born as in
                      your case. Either way it was and always has been a wonderful exprenice raising
                      him he is a joy to have around and is Mr. personality now. he is the most love
                      child at his school and has tons of friends.
                      TRACI Tuckers Mom


                      [Non-text portions of this message have been removed]
                    • Beverly Hanset-Burch
                      Traci, No I didn t get it. Please send again! Did you nurse Tucker? Did they whisk him away as I hear is so often done? tucmum@aol.com wrote: In a message
                      Message 10 of 13 , Mar 9, 2004
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                        Traci,
                        No I didn't get it. Please send again!
                        Did you nurse Tucker? Did they 'whisk' him away as I hear is so often done?

                        tucmum@... wrote:
                        In a message dated 3/9/04 11:22:34 AM Pacific Standard Time,
                        beverlyhansetburch@... writes:

                        > I don't see your son's page address. I would love to take a look at it.
                        > When did you find out he had AMC? Do you have other kids? I guess the web site
                        > would tell me all that, wouldn't it?
                        >

                        Bev,
                        Did you get the second email I sent to you personally (it had the link)? For
                        some reason this group don't let pictures, files or links go through so I sent
                        it to you in the other email. Yes, I have a daughter that is 11 years old and
                        in the sixth grade. She don't have amc and with her there was no problems
                        during pregnancy at all.
                        with tucker we didn't have any clue there was anything wrong other then being
                        in a breech position due to his position we did have 9 ultra sounds but
                        nothing showed up. In some ways I am glad because of the stress factors but in
                        others I would have enjoyed having everything lined up before he was born as in
                        your case. Either way it was and always has been a wonderful exprenice raising
                        him he is a joy to have around and is Mr. personality now. he is the most love
                        child at his school and has tons of friends.
                        TRACI Tuckers Mom


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


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                      • Karen
                        Hi there, my name is Karen. I am 31 and have AMC. I wanted to let you know that you can expect your child to have as normal life as she wants. I use a
                        Message 11 of 13 , Mar 9, 2004
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                          Hi there, my name is Karen. I am 31 and have AMC. I
                          wanted to let you know that you can expect your child
                          to have as normal life as she wants. I use a
                          wheelchair, learned to drive when I was 20 (I had to
                          buy my own car so it took me awhile :), have held jobs
                          and got a certificate in Medical Transcription which I
                          am currently looking for a job in that field. I am
                          also the very proud Mom to a beautiful 6-year old
                          healthy rambunctious boy. I've had my good times and
                          bad, but I have always known my family supported me in
                          whatever I chose to do. To me that is the most
                          important thing.

                          As a person with AMC I highly advocate physical
                          therapy but try not to make it a chore or too much of
                          an issue....make it fun. Avoid surgery as much as
                          possible and only do it if you've done your homework
                          on the pros, cons, and long-term and short-term
                          affects. Doctors should be part of your team, not a
                          God to be followed blindly. And most importantly in
                          my mind, let her develop as a disabled person... Do
                          not try to deny her disability but rather teach her to
                          embrace it as part of who she is. Let her be around
                          other people with disablities, kids and adults, just
                          as she will be around non-disabled people.

                          Again, this is simply my opinion but I felt it
                          important to speak up.

                          Karen

                          --- Beverly Hanset-Burch
                          <beverlyhansetburch@...> wrote:
                          > Shriners is a network of childrens' hospitals. When
                          > I was a child they were known as Shriners Hospital
                          > for Crippled Children. Now they are known as
                          > Shriners. They are free for all children. I am in
                          > Oregon, and this is the only orthopedic hospital for
                          > children available. There is Dorenbechers Children's
                          > Hospital for all children problems, but Shriners is
                          > where everyone has directed me to.
                          >
                          > Theresa.... almost a day doesn't go by that someone
                          > asks me about aborting. NO way! I consented to an
                          > amniocentesis at 23 weeks because I was told it
                          > could be related to various trisomy problems. That
                          > has all come back normal. I didn't even want the
                          > amnio because of miscarriage risks, but I felt
                          > almost backed into a wall. I am relaxing more now,
                          > knowing that most likely this will be her only
                          > problem. It still confuses me though. They tell me
                          > it is due to the shape of my uterus. It is
                          > bicornuate, which means it has two distinct horns.
                          > However, I have 17, 16 and 13 year old sons. They
                          > had room to grow! Also, she kicks more than my first
                          > two boys did.
                          >
                          > Anyway, for Shriners you need a sponsor. Through my
                          > mother I located a sponsor at the VFW in Vancouver.
                          > We did the necessary paperwork and we are waiting to
                          > hear back. I am trying to get in for a consult and
                          > an opinion on the ultrasounds that have been done. I
                          > also have a contact through La Leche League who is
                          > trying to find a good pediatric therapist in my
                          > area. I contacted LLL because I do want to nurse
                          > this child, and they had all kinds of wonderful
                          > advise. I nursed my other children, but with Bonnie
                          > there could be jaw problems.
                          >
                          > My next appointment is next Monday. They are looking
                          > for a gastric bubble, to rule out esophageal
                          > atresia, a condition where nothing gets to the
                          > stomach. It can be corrected by surgery, but I just
                          > have a sense she doesn't have this problem. They
                          > will also be checking on her growth.
                          >
                          > I am not new to problems in pregnancy. My oldest is
                          > one of triplets. The other two died in utero at 13
                          > weeks. I didn't know I was pregnant with triplets,
                          > or I wouldn't have been teaching! They told me he
                          > would die so I should abort. I did not, obviously.
                          > They found my odd uterus. Oldest kid grew all on the
                          > left side. After being assured the uterus was no
                          > problem, I had middle kid. He connected very low,
                          > and so he was born 9 weeks early. He only had breast
                          > milk even though he was in NICU for 3 wks 6 days...
                          > I pumped, and I was also allowed to nurse him before
                          > they ever tube fed him. They told me he would have
                          > all kinds of mental issues. He is in all honors
                          > courses except for math, which he hates, and he is
                          > going to France this summer as an exchange student.
                          > He speaks French beautifully. (We've had over 60
                          > exchange students, so it is finally my kid's
                          > turn.... but they all have been to Finland and Japan
                          > too, but they were really small). (Oh, he has had to
                          > work for this money himself...
                          > we are of modest means) Last kid was on the right
                          > side. Natural delivery after two ceseareans. No
                          > problems. Home within a few hours! Then we had a
                          > meningitis scare... but all is fine now.
                          >
                          > Anyway, apparently Bonnie has her head in the left
                          > uterus, and her bottom down low, and her legs on the
                          > right side. She has clubbed hands and feed they tell
                          > me, although on a 3D ultrasound we could clearly
                          > make out fingers in the classic I love you sign
                          > language. Her hands are in front of her face, elbows
                          > flexed. Her legs are straight out. I believe the
                          > movement I feel is the hands. The leg area I do not
                          > feel as much. I asked if they could push her to one
                          > uterus or another, and my doctor giggled. Not at me,
                          > but that they only wished that they could. It
                          > doesn't work like that! She has chosen how she is
                          > positioned. I wish I could reach in and begin
                          > therapy!
                          >
                          > So at this point in the game I can only wait and
                          > see. They tell me that it is at its worst at birth,
                          > and only improves. As long as she has a mind, I can
                          > work with that! I am not good with Alzheimers
                          > patients, non improving conditions, etc. But a mind!
                          > I can work with that. They have assured me that she
                          > should be fine that way. In addition, I have
                          > purchased Arthrogryposis, A Text Atlas. I think I
                          > have done all I can do, except for locating a
                          > pediatrician. I would like one that advocates
                          > nursing, won't get on my case for co sleeping, and
                          > that has seen or at least heart of arthrogryposis.
                          > My other concern is any special clothing or
                          > diapering. I am a firm cloth diaperer, although they
                          > aren't making the ones I used years ago. Anyway, I
                          > am wondering about her arms, if I can get a onesie
                          > on her or a t-shirt on her. And then all the
                          > unknowns! Will they cast her, things like that.
                          >
                          > So this is long. My typing teacher was right, typing
                          > has proven to be just about the most useful high
                          > school class I ever took! But thanks for letting me
                          > share. It is incredibly hard to hurry up and wait
                          > these last 11 weeks 5 days. Sometimes I wish I had
                          > no clue so I could relax and do normal pregnancy
                          > things. Other times I am glad I have a heads up so I
                          > know the NICU procedure, tests that they will do,
                          > etc. Oh, and for anyone curious, yes Bonnie is a
                          > surprise, a welcome surprise but a surprise all the
                          > same. I am 39, husband 42, we were using birth
                          > control and we were sober. Middle kid used me as an
                          > example in health class! I think my bowling ball
                          > body spoke heaps more than any teacher or textbook!
                          >
                          > So, I am looking for a pediatrician. I am looking
                          > for friends. I want to hear good success stories of
                          > people with AMC and from parents. And anything you
                          > all may think is useful.


                          =====
                          KarenL
                          Mom to Jamison (6 yrs old)
                          Living in Nebraska

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                        • Beverly Hanset-Burch
                          Karen, I like how you put this! And I really appreciate your opinion. I have been thinking along that same line as far as surgery goes. My middle kid needed
                          Message 12 of 13 , Mar 9, 2004
                          • 0 Attachment
                            Karen,
                            I like how you put this! And I really appreciate your opinion.
                            I have been thinking along that same line as far as surgery goes. My middle kid needed lots of physical therapy, and we always made it a game. He didn't walk until he was 2.5, but he is now a wonderful runner and swimmer. I want Bonnie to have a childhood. And believe me, I do my research! Surgery has multiple risks. And each child has their own talents. My oldest draws. My middle plays piano. My youngest has sports. Bonnie will undoubtedly have her own talents.

                            Karen <momserene@...> wrote:
                            Hi there, my name is Karen. I am 31 and have AMC. I
                            wanted to let you know that you can expect your child
                            to have as normal life as she wants. I use a
                            wheelchair, learned to drive when I was 20 (I had to
                            buy my own car so it took me awhile :), have held jobs
                            and got a certificate in Medical Transcription which I
                            am currently looking for a job in that field. I am
                            also the very proud Mom to a beautiful 6-year old
                            healthy rambunctious boy. I've had my good times and
                            bad, but I have always known my family supported me in
                            whatever I chose to do. To me that is the most
                            important thing.

                            As a person with AMC I highly advocate physical
                            therapy but try not to make it a chore or too much of
                            an issue....make it fun. Avoid surgery as much as
                            possible and only do it if you've done your homework
                            on the pros, cons, and long-term and short-term
                            affects. Doctors should be part of your team, not a
                            God to be followed blindly. And most importantly in
                            my mind, let her develop as a disabled person... Do
                            not try to deny her disability but rather teach her to
                            embrace it as part of who she is. Let her be around
                            other people with disablities, kids and adults, just
                            as she will be around non-disabled people.

                            Again, this is simply my opinion but I felt it
                            important to speak up.

                            Karen

                            --- Beverly Hanset-Burch
                            wrote:
                            > Shriners is a network of childrens' hospitals. When
                            > I was a child they were known as Shriners Hospital
                            > for Crippled Children. Now they are known as
                            > Shriners. They are free for all children. I am in
                            > Oregon, and this is the only orthopedic hospital for
                            > children available. There is Dorenbechers Children's
                            > Hospital for all children problems, but Shriners is
                            > where everyone has directed me to.
                            >
                            > Theresa.... almost a day doesn't go by that someone
                            > asks me about aborting. NO way! I consented to an
                            > amniocentesis at 23 weeks because I was told it
                            > could be related to various trisomy problems. That
                            > has all come back normal. I didn't even want the
                            > amnio because of miscarriage risks, but I felt
                            > almost backed into a wall. I am relaxing more now,
                            > knowing that most likely this will be her only
                            > problem. It still confuses me though. They tell me
                            > it is due to the shape of my uterus. It is
                            > bicornuate, which means it has two distinct horns.
                            > However, I have 17, 16 and 13 year old sons. They
                            > had room to grow! Also, she kicks more than my first
                            > two boys did.
                            >
                            > Anyway, for Shriners you need a sponsor. Through my
                            > mother I located a sponsor at the VFW in Vancouver.
                            > We did the necessary paperwork and we are waiting to
                            > hear back. I am trying to get in for a consult and
                            > an opinion on the ultrasounds that have been done. I
                            > also have a contact through La Leche League who is
                            > trying to find a good pediatric therapist in my
                            > area. I contacted LLL because I do want to nurse
                            > this child, and they had all kinds of wonderful
                            > advise. I nursed my other children, but with Bonnie
                            > there could be jaw problems.
                            >
                            > My next appointment is next Monday. They are looking
                            > for a gastric bubble, to rule out esophageal
                            > atresia, a condition where nothing gets to the
                            > stomach. It can be corrected by surgery, but I just
                            > have a sense she doesn't have this problem. They
                            > will also be checking on her growth.
                            >
                            > I am not new to problems in pregnancy. My oldest is
                            > one of triplets. The other two died in utero at 13
                            > weeks. I didn't know I was pregnant with triplets,
                            > or I wouldn't have been teaching! They told me he
                            > would die so I should abort. I did not, obviously.
                            > They found my odd uterus. Oldest kid grew all on the
                            > left side. After being assured the uterus was no
                            > problem, I had middle kid. He connected very low,
                            > and so he was born 9 weeks early. He only had breast
                            > milk even though he was in NICU for 3 wks 6 days...
                            > I pumped, and I was also allowed to nurse him before
                            > they ever tube fed him. They told me he would have
                            > all kinds of mental issues. He is in all honors
                            > courses except for math, which he hates, and he is
                            > going to France this summer as an exchange student.
                            > He speaks French beautifully. (We've had over 60
                            > exchange students, so it is finally my kid's
                            > turn.... but they all have been to Finland and Japan
                            > too, but they were really small). (Oh, he has had to
                            > work for this money himself...
                            > we are of modest means) Last kid was on the right
                            > side. Natural delivery after two ceseareans. No
                            > problems. Home within a few hours! Then we had a
                            > meningitis scare... but all is fine now.
                            >
                            > Anyway, apparently Bonnie has her head in the left
                            > uterus, and her bottom down low, and her legs on the
                            > right side. She has clubbed hands and feed they tell
                            > me, although on a 3D ultrasound we could clearly
                            > make out fingers in the classic I love you sign
                            > language. Her hands are in front of her face, elbows
                            > flexed. Her legs are straight out. I believe the
                            > movement I feel is the hands. The leg area I do not
                            > feel as much. I asked if they could push her to one
                            > uterus or another, and my doctor giggled. Not at me,
                            > but that they only wished that they could. It
                            > doesn't work like that! She has chosen how she is
                            > positioned. I wish I could reach in and begin
                            > therapy!
                            >
                            > So at this point in the game I can only wait and
                            > see. They tell me that it is at its worst at birth,
                            > and only improves. As long as she has a mind, I can
                            > work with that! I am not good with Alzheimers
                            > patients, non improving conditions, etc. But a mind!
                            > I can work with that. They have assured me that she
                            > should be fine that way. In addition, I have
                            > purchased Arthrogryposis, A Text Atlas. I think I
                            > have done all I can do, except for locating a
                            > pediatrician. I would like one that advocates
                            > nursing, won't get on my case for co sleeping, and
                            > that has seen or at least heart of arthrogryposis.
                            > My other concern is any special clothing or
                            > diapering. I am a firm cloth diaperer, although they
                            > aren't making the ones I used years ago. Anyway, I
                            > am wondering about her arms, if I can get a onesie
                            > on her or a t-shirt on her. And then all the
                            > unknowns! Will they cast her, things like that.
                            >
                            > So this is long. My typing teacher was right, typing
                            > has proven to be just about the most useful high
                            > school class I ever took! But thanks for letting me
                            > share. It is incredibly hard to hurry up and wait
                            > these last 11 weeks 5 days. Sometimes I wish I had
                            > no clue so I could relax and do normal pregnancy
                            > things. Other times I am glad I have a heads up so I
                            > know the NICU procedure, tests that they will do,
                            > etc. Oh, and for anyone curious, yes Bonnie is a
                            > surprise, a welcome surprise but a surprise all the
                            > same. I am 39, husband 42, we were using birth
                            > control and we were sober. Middle kid used me as an
                            > example in health class! I think my bowling ball
                            > body spoke heaps more than any teacher or textbook!
                            >
                            > So, I am looking for a pediatrician. I am looking
                            > for friends. I want to hear good success stories of
                            > people with AMC and from parents. And anything you
                            > all may think is useful.


                            =====
                            KarenL
                            Mom to Jamison (6 yrs old)
                            Living in Nebraska

                            __________________________________
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                          • audiohnd
                            Hey, here is the link to Childrens in Seattle, they do work on a sliding scale much the same as Shriners does, and they also have housing for families if there
                            Message 13 of 13 , Mar 10, 2004
                            • 0 Attachment
                              Hey, here is the link to Childrens in Seattle, they do work on a
                              sliding scale much the same as Shriners does, and they also have
                              housing for families if there is a need.
                              http://www.seattlechildrens.org/

                              David

                              --- In amc_adults@yahoogroups.com, Beverly Hanset-Burch
                              <beverlyhansetburch@y...> wrote:
                              > Traci,
                              > My name is Bev. I guess I should have included that!
                              > Yes I have thought about the Seattle hospital. I have to figure
                              out what all that costs too... we don't have great insurance.
                              > My favorite pediatrician died himself of brain cancer at a very
                              young age. My boys have been just seeing nurses. They are all of the
                              ages where we only really go in for scout or sport forms! So I guess
                              I just go about finding another one.
                              > I don't see your son's page address. I would love to take a look
                              at it. When did you find out he had AMC? Do you have other kids? I
                              guess the web site would tell me all that, wouldn't it?
                              >
                              > tucmum@a... wrote:
                              > Lol I almost addressed this to bonnie then noticed that is your
                              daughters
                              > name.
                              > I wanted to say How exciting it must be to be expecting. Your
                              going to enjoy
                              > every min of it and I am sure you know that with having three
                              other children
                              > but hey I have to say Girls are more fun.
                              > Is your normal pediatrician open to questions? The reason I say
                              that is he
                              > already knows you he knows your family and when it comes to the
                              AMC you will be
                              > going to orthos PT's and OT's so honestly we only got to ours for
                              normal
                              > things like colds and shots. The only other thing we do
                              differently is we have
                              > copies of all of our visits sent to him to keep him up to date on
                              the progress of
                              > Tuckers amc.
                              > Honestly not many pediatricians do know much about amc but you
                              will be able
                              > to find a great one if they are under the understanding that it is
                              being
                              > treated by the other team members.
                              > One thing we did have to remind ours weight and height are going
                              to be
                              > different for most children with amc. And we use the chart out of
                              the Book someone
                              > else has told you about. well we did until my son actually got
                              back on to the
                              > "regular" charts.
                              > Here is my sons web site for you and please don't let anyone stop
                              you from
                              > asking questions. Tuckers new home page.
                              > Oh living in Oregon have you thought about taking her to the
                              Seattle
                              > Children's hospital for their AMC clinic? We do that once a year
                              just to be sure our
                              > son is on track. just a thought
                              > Have a wonderful day and just relax you are way ahead of the game
                              compared to
                              > so many of us that had no clue that our children were going to be
                              effected
                              > with the amc.
                              > TRACI Tuckers Mom (6 years old with amc)
                              >
                              >
                              >
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