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

Re: [Adults AMC] Digest Number 497

Expand Messages
  • Deena Landreneau
    Beverly, Best of luck to you during your pregnancy. I didn t know my daughter had it until she was born. She is almost 2 and doing great. Not yet walking,
    Message 1 of 2 , Mar 10 4:29 PM
    • 0 Attachment
      Beverly,

      Best of luck to you during your pregnancy. I didn't know my daughter had it
      until she was born. She is almost 2 and doing great. Not yet walking, but
      recouping from surgery. She gets the casts off next week and we will go to
      braces. She has rocker bottom feet. My ped. thaught she had trisomy 18
      when she was born. All the genetic tests came back w/46 chromosomes.
      Needless to say, I have since found a wonderful ped. who really takes good
      care of my girls (I also have a 4 yr old.) By the way, the ultra sounds
      never showed anything. I know her legs were crossed some of the time and
      she was breech. I know she didn't kick as mucy as my oldest, however she
      had power kicks - it felt like she was kicking me with both legs at the same
      time. She kept her legs in the air quite a bit when she was born. We are
      now going to Shriners, which is an awesome place!! We are all here for
      support. The group is so good at answering questions.
      DRL
      ----- Original Message -----
      From: <amc_adults@yahoogroups.com>
      To: <amc_adults@yahoogroups.com>
      Sent: Wednesday, March 10, 2004 2:52 AM
      Subject: [Adults AMC] Digest Number 497



      There are 13 messages in this issue.

      Topics in this digest:

      1. Re: Child with arthrogryposis
      From: dddd ddd <saba33333@...>
      2. Re: about my tape & other posts
      From: dddd ddd <saba33333@...>
      3. Re: Child with arthrogryposis
      From: TERRY2745@...
      4. Re: Child with arthrogryposis
      From: "moby324" <moby324@...>
      5. Re: Child with arthrogryposis
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      6. Re: Child with arthrogryposis
      From: tucmum@...
      7. Re: Child with arthrogryposis
      From: "audiohnd" <dr_kennedy@...>
      8. Re: Child with arthrogryposis
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      9. Re: Child with arthrogryposis
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      10. Re: Child with arthrogryposis
      From: tucmum@...
      11. Re: Child with arthrogryposis
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      12. Re: Child with arthrogryposis
      From: Karen <momserene@...>
      13. Re: Child with arthrogryposis
      From: Beverly Hanset-Burch <beverlyhansetburch@...>


      ________________________________________________________________________
      ________________________________________________________________________

      Message: 1
      Date: Tue, 9 Mar 2004 05:41:24 -0800 (PST)
      From: dddd ddd <saba33333@...>
      Subject: Re: Child with arthrogryposis

      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?




      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/amc_adults/

      To unsubscribe from this group, send an email to:
      amc_adults-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



      ---------------------------------
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster.

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



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 2
      Date: Tue, 9 Mar 2004 05:50:26 -0800 (PST)
      From: dddd ddd <saba33333@...>
      Subject: Re: about my tape & other posts

      HI TERRY
      I am in contact with u.Please write me in personally.
      I shall be thankfulll to u for having interaction on AMC problems.

      TERRY2745@... wrote:
      I had every intention 2 post on how ive been doing since surgery on my arm &
      dealing with the nerve damage etc... but the past few posts slamming other
      members (on avenues mostly) has made me not want to share, thats sad & i
      hope &
      pray we can get back 2 the support friendship part of these groups soon!
      I do want to let those of you that asked for a copy of my tape IM SORRY its
      takin me so long! I WILL get them 2 u ASAP. this arm thing has slowed me
      down &
      this past few weeks ive been putting 2gether a student art show in my
      county,
      which has taken ALLL my time! But this week i am going 2 once again TRY 2
      get
      copies made & send them out 2 those of you I recieved a letter from! AGAIN,
      SORRY im soo slow lol Me & the tv & VCR havent gotten along 2 copy them
      haha
      ~Theresa


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



      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/amc_adults/

      To unsubscribe from this group, send an email to:
      amc_adults-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



      ---------------------------------
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster.

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



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 3
      Date: Tue, 9 Mar 2004 08:57:09 EST
      From: TERRY2745@...
      Subject: Re: Child with arthrogryposis

      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]



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 4
      Date: Tue, 09 Mar 2004 14:45:03 -0000
      From: "moby324" <moby324@...>
      Subject: Re: Child with arthrogryposis

      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]



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 5
      Date: Tue, 9 Mar 2004 08:51:19 -0800 (PST)
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      Subject: Re: Child with arthrogryposis

      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]



      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/amc_adults/

      To unsubscribe from this group, send an email to:
      amc_adults-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



      ---------------------------------
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster.

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



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 6
      Date: Tue, 9 Mar 2004 12:20:31 EST
      From: tucmum@...
      Subject: Re: Child with arthrogryposis

      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]



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 7
      Date: Tue, 09 Mar 2004 17:51:57 -0000
      From: "audiohnd" <dr_kennedy@...>
      Subject: Re: Child with arthrogryposis


      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]




      ________________________________________________________________________
      ________________________________________________________________________

      Message: 8
      Date: Tue, 9 Mar 2004 11:19:52 -0800 (PST)
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      Subject: Re: Child with arthrogryposis

      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]


      Yahoo! Groups SponsorADVERTISEMENT
      Click Here

      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/amc_adults/

      To unsubscribe from this group, send an email to:
      amc_adults-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



      ---------------------------------
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster.

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



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 9
      Date: Tue, 9 Mar 2004 11:24:18 -0800 (PST)
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      Subject: Re: Child with arthrogryposis

      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]



      Yahoo! Groups SponsorADVERTISEMENT
      Click Here

      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/amc_adults/

      To unsubscribe from this group, send an email to:
      amc_adults-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




      ---------------------------------
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster.

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



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 10
      Date: Tue, 9 Mar 2004 16:31:53 EST
      From: tucmum@...
      Subject: Re: Child with arthrogryposis

      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]



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 11
      Date: Tue, 9 Mar 2004 13:55:25 -0800 (PST)
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      Subject: Re: Child with arthrogryposis

      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]


      Yahoo! Groups SponsorADVERTISEMENT
      Click Here

      ---------------------------------
      Yahoo! Groups Links

      To visit your group on the web, go to:
      http://groups.yahoo.com/group/amc_adults/

      To unsubscribe from this group, send an email to:
      amc_adults-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



      ---------------------------------
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster.

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



      ________________________________________________________________________
      ________________________________________________________________________

      Message: 12
      Date: Tue, 9 Mar 2004 19:29:30 -0800 (PST)
      From: Karen <momserene@...>
      Subject: Re: Child with arthrogryposis

      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

      __________________________________
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster
      http://search.yahoo.com


      ________________________________________________________________________
      ________________________________________________________________________

      Message: 13
      Date: Tue, 9 Mar 2004 21:14:46 -0800 (PST)
      From: Beverly Hanset-Burch <beverlyhansetburch@...>
      Subject: Re: Child with arthrogryposis

      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

      __________________________________
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster
      http://search.yahoo.com




      Yahoo! Groups Links






      ---------------------------------
      Do you Yahoo!?
      Yahoo! Search - Find what you're looking for faster.

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



      ________________________________________________________________________
      ________________________________________________________________________



      ------------------------------------------------------------------------
      Yahoo! Groups Links




      ------------------------------------------------------------------------
    • Beverly Hanset-Burch
      DRL, I m glad your daughter is doing so well. I think the only reason they saw this on my ultrasound was because they are such a high risk clinic. The other
      Message 2 of 2 , Mar 10 5:59 PM
      • 0 Attachment
        DRL,
        I'm glad your daughter is doing so well.
        I think the only reason they saw this on my ultrasound was because they are such a high risk clinic. The other ultrasounds they didn't see a thing. However, they also thought Tri 18 and recommended an amnio. It came back normal. Then they did a 3D ultrasound for a couple of hours after the amnio, and became even more convinced it is arthrogryposis. My doctor diagnosed a case last year in utero also. The clinic is really nice. I have an ultrasound, then see my doctor, all in the same clinic. I have extremely frequent ultrasounds.
        I bet you were terrified when they thought your youngest had Tri 18. I know I would have been. I was before the amnio. I hadn't even had the AFP test because I was going to keep this child. I saw no need for any testing. But Tri 18.... I would have had to be prepared.
        I am now hoping that it is for sure arthrogryposis, nothing else, no neurological problems associated with it. It does make the pregnancy longer. What had been flying by now moves just as slowly as when I had my first kid 17 years ago! I also get exhausted explaining to well meaning friends what is going on. They tend to say, oh the doctors are surely wrong, she is fine. Like that helps anything! So I am almost as a hermit, obsessing and researching all I can about this AMC.
        One more thing... have you had to adjust clothing or anything? Diapers?

        Deena Landreneau <drlandreneau@...> wrote:
        Beverly,

        Best of luck to you during your pregnancy. I didn't know my daughter had it
        until she was born. She is almost 2 and doing great. Not yet walking, but
        recouping from surgery. She gets the casts off next week and we will go to
        braces. She has rocker bottom feet. My ped. thaught she had trisomy 18
        when she was born. All the genetic tests came back w/46 chromosomes.
        Needless to say, I have since found a wonderful ped. who really takes good
        care of my girls (I also have a 4 yr old.) By the way, the ultra sounds
        never showed anything. I know her legs were crossed some of the time and
        she was breech. I know she didn't kick as mucy as my oldest, however she
        had power kicks - it felt like she was kicking me with both legs at the same
        time. She kept her legs in the air quite a bit when she was born. We are
        now going to Shriners, which is an awesome place!! We are all here for
        support. The group is so good at answering questions.
        DRL
        ----- Original Message -----
        From: <amc_adults@yahoogroups.com>
        To: <amc_adults@yahoogroups.com>
        Sent: Wednesday, March 10, 2004 2:52 AM
        Subject: [Adults AMC] Digest Number 497



        There are 13 messages in this issue.

        Topics in this digest:

        1. Re: Child with arthrogryposis
        From: dddd ddd <saba33333@...>
        2. Re: about my tape & other posts
        From: dddd ddd <saba33333@...>
        3. Re: Child with arthrogryposis
        From: TERRY2745@...
        4. Re: Child with arthrogryposis
        From: "moby324" <moby324@...>
        5. Re: Child with arthrogryposis
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        6. Re: Child with arthrogryposis
        From: tucmum@...
        7. Re: Child with arthrogryposis
        From: "audiohnd" <dr_kennedy@...>
        8. Re: Child with arthrogryposis
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        9. Re: Child with arthrogryposis
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        10. Re: Child with arthrogryposis
        From: tucmum@...
        11. Re: Child with arthrogryposis
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        12. Re: Child with arthrogryposis
        From: Karen <momserene@...>
        13. Re: Child with arthrogryposis
        From: Beverly Hanset-Burch <beverlyhansetburch@...>


        ________________________________________________________________________
        ________________________________________________________________________

        Message: 1
        Date: Tue, 9 Mar 2004 05:41:24 -0800 (PST)
        From: dddd ddd <saba33333@...>
        Subject: Re: Child with arthrogryposis

        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?




        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/amc_adults/

        To unsubscribe from this group, send an email to:
        amc_adults-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        ---------------------------------
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster.

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



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 2
        Date: Tue, 9 Mar 2004 05:50:26 -0800 (PST)
        From: dddd ddd <saba33333@...>
        Subject: Re: about my tape & other posts

        HI TERRY
        I am in contact with u.Please write me in personally.
        I shall be thankfulll to u for having interaction on AMC problems.

        TERRY2745@... wrote:
        I had every intention 2 post on how ive been doing since surgery on my arm &
        dealing with the nerve damage etc... but the past few posts slamming other
        members (on avenues mostly) has made me not want to share, thats sad & i
        hope &
        pray we can get back 2 the support friendship part of these groups soon!
        I do want to let those of you that asked for a copy of my tape IM SORRY its
        takin me so long! I WILL get them 2 u ASAP. this arm thing has slowed me
        down &
        this past few weeks ive been putting 2gether a student art show in my
        county,
        which has taken ALLL my time! But this week i am going 2 once again TRY 2
        get
        copies made & send them out 2 those of you I recieved a letter from! AGAIN,
        SORRY im soo slow lol Me & the tv & VCR havent gotten along 2 copy them
        haha
        ~Theresa


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



        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/amc_adults/

        To unsubscribe from this group, send an email to:
        amc_adults-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        ---------------------------------
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster.

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



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 3
        Date: Tue, 9 Mar 2004 08:57:09 EST
        From: TERRY2745@...
        Subject: Re: Child with arthrogryposis

        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]



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 4
        Date: Tue, 09 Mar 2004 14:45:03 -0000
        From: "moby324" <moby324@...>
        Subject: Re: Child with arthrogryposis

        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]



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 5
        Date: Tue, 9 Mar 2004 08:51:19 -0800 (PST)
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        Subject: Re: Child with arthrogryposis

        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]



        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/amc_adults/

        To unsubscribe from this group, send an email to:
        amc_adults-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        ---------------------------------
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster.

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



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 6
        Date: Tue, 9 Mar 2004 12:20:31 EST
        From: tucmum@...
        Subject: Re: Child with arthrogryposis

        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]



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 7
        Date: Tue, 09 Mar 2004 17:51:57 -0000
        From: "audiohnd" <dr_kennedy@...>
        Subject: Re: Child with arthrogryposis


        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]




        ________________________________________________________________________
        ________________________________________________________________________

        Message: 8
        Date: Tue, 9 Mar 2004 11:19:52 -0800 (PST)
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        Subject: Re: Child with arthrogryposis

        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]


        Yahoo! Groups SponsorADVERTISEMENT
        Click Here

        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/amc_adults/

        To unsubscribe from this group, send an email to:
        amc_adults-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        ---------------------------------
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster.

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



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 9
        Date: Tue, 9 Mar 2004 11:24:18 -0800 (PST)
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        Subject: Re: Child with arthrogryposis

        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]



        Yahoo! Groups SponsorADVERTISEMENT
        Click Here

        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/amc_adults/

        To unsubscribe from this group, send an email to:
        amc_adults-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




        ---------------------------------
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster.

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



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 10
        Date: Tue, 9 Mar 2004 16:31:53 EST
        From: tucmum@...
        Subject: Re: Child with arthrogryposis

        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]



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 11
        Date: Tue, 9 Mar 2004 13:55:25 -0800 (PST)
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        Subject: Re: Child with arthrogryposis

        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]


        Yahoo! Groups SponsorADVERTISEMENT
        Click Here

        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/amc_adults/

        To unsubscribe from this group, send an email to:
        amc_adults-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        ---------------------------------
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster.

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



        ________________________________________________________________________
        ________________________________________________________________________

        Message: 12
        Date: Tue, 9 Mar 2004 19:29:30 -0800 (PST)
        From: Karen <momserene@...>
        Subject: Re: Child with arthrogryposis

        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

        __________________________________
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster
        http://search.yahoo.com


        ________________________________________________________________________
        ________________________________________________________________________

        Message: 13
        Date: Tue, 9 Mar 2004 21:14:46 -0800 (PST)
        From: Beverly Hanset-Burch <beverlyhansetburch@...>
        Subject: Re: Child with arthrogryposis

        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

        __________________________________
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster
        http://search.yahoo.com




        Yahoo! Groups Links






        ---------------------------------
        Do you Yahoo!?
        Yahoo! Search - Find what you're looking for faster.

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



        ________________________________________________________________________
        ________________________________________________________________________



        ------------------------------------------------------------------------
        Yahoo! Groups Links




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




        Yahoo! Groups SponsorADVERTISEMENT
        Click Here

        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/amc_adults/

        To unsubscribe from this group, send an email to:
        amc_adults-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



        ---------------------------------
        Do you Yahoo!?
        Yahoo! Search - Find what you�re looking for faster.

        [Non-text portions of this message have been removed]
      Your message has been successfully submitted and would be delivered to recipients shortly.