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Baby Girl

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  • trustyart
    I have a baby girl with arthrogryposis. She was born 12-3-01. She will be seven months old 7-3-02. I found out when I was 18 weeks in to my pregnancy. They
    Message 1 of 5 , Jul 1, 2002
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      I have a baby girl with arthrogryposis. She was born 12-3-01. She
      will be seven months old 7-3-02. I found out when I was 18 weeks in
      to my pregnancy. They did not expect her to live because the whole
      time I carried her, her neck was hyper extended. The back of her head
      touched her back and both of her legs were crossed. She was only
      able to move her hands. God answered our prayers and straigtened her
      neck. The doctors are baffaled because her neck was not as stiff as
      her legs. She spent her first six weeks in the NICU. She has been in
      PT and OT since she was born. She will have to have surgery on her
      legs and feet and her hip. I am very worried about the surgies. Can
      anyone share about their experience.
    • hipnz
      Your little girl has done well then. I have a boy, Zane, who is nearly 5, his shoulders, elbows, wrists, knees and ankles/feet are affected. He has done well,
      Message 2 of 5 , Jul 2, 2002
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        Your little girl has done well then.
        I have a boy, Zane, who is nearly 5, his shoulders, elbows, wrists,
        knees and ankles/feet are affected. He has done well, and with all
        our PT has gotten good improvement in all areas.
        He has had two lots of surgery on his feet, the last one just in
        March. Zane has a whole bunch of other things going on too, and the
        March surgery was actually his 11th all up!
        From my experience, Mum has a much harder time with the surgery than
        the kid does. Its so hard to watch them being whisked away, and I am
        nearly used to it (nearly!). Zane on the other hand, wonders what
        all the fuss is about - although he does have a problem with
        strangers, this is his only concern. After his last surgery, he
        acted like Lord Muck, and after two days, didn't even want to go home
        from the hospital...I had to bribe him!!
        I hope this helps. But I am here if you need to talk more!
        --- In arthrogryposissupportgroup@y..., "trustyart" <utfan28@h...>
        wrote:
        > I have a baby girl with arthrogryposis. She was born 12-3-01. She
        > will be seven months old 7-3-02. I found out when I was 18 weeks
        in
        > to my pregnancy. They did not expect her to live because the whole
        > time I carried her, her neck was hyper extended. The back of her
        head
        > touched her back and both of her legs were crossed. She was only
        > able to move her hands. God answered our prayers and straigtened
        her
        > neck. The doctors are baffaled because her neck was not as stiff
        as
        > her legs. She spent her first six weeks in the NICU. She has been
        in
        > PT and OT since she was born. She will have to have surgery on her
        > legs and feet and her hip. I am very worried about the surgies.
        Can
        > anyone share about their experience.
      • kassandra Ahuero
        Hello all, for those of you who dont know me, I am a teenager with AMC. For all of those new parents with children with AMC I know this world can be a cruel
        Message 3 of 5 , Jul 5, 2002
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          Hello all,

          for those of you who dont know me, I am a teenager with AMC. For all of those new parents with children with AMC I know this world can be a cruel world and it is hard having AMC but God brought you those children for a purpose. Don't just say that we would be better off not being born. I dont mean to step on some toes, but I cant help it I have had a hard time dealing with my situation, but I am leading a normal life. When I was a baby the doctors told my mom that I would never be normal and that I would never be able to walk . He also told my mom that I would be better off in an istatution. Lets just put it this way I NEVER saw that doctor again. when I was a baby My AMC was pretty bad. After several years of working with me I can walk and succesfuly dress and bathe my self. I found my own adaptions and everything worked out really well. Dont give up on your child continue in the daily PT and stretches because it made a world of a difference in my case.I will admit know walking is alot harder for me and I do use a wheel Chair for long distance and crutches and AFOs for walking. You see if you try you can really make a difference in your childs life. I am sorry if I have ofended anyone I am sorry but I couldent just not say anything. Your children will be in my prayers, Keep the faith ! I wish you all the best of luck.
          P.S. If any of you would like to talk to me or if there are any teenagers out there that need somone to talk to I am all ears. I look forward to talking to you. my email is kahuero2001@...

          Your friend,

          Kassie Ahuero



          ---------------------------------
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          [Non-text portions of this message have been removed]
        • hipnz
          Hi Kassie. Thanks for the reassurance. I often wonder - like most parents I guess, how my little boy will do in life, what he thinks and how he feels about
          Message 4 of 5 , Jul 5, 2002
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            Hi Kassie. Thanks for the reassurance. I often wonder - like most
            parents I guess, how my little boy will do in life, what he thinks
            and how he feels about things. Its good to hear positive comments
            from someone who has grown up with it. I know he always manages to
            get done what he wants - somehow. He's very in working out other
            ways of doing things if he can't manage.
            He walks, but can't do the long distance thing very well. He's very
            determined.
            Your Mum has done well too, then. Good on her. Its great to see you
            have sucha positive attitude, and I hope my Zane is the same when he
            is your age.
            All the best,
            Catherine Mum to Zane.

            --- In arthrogryposissupportgroup@y..., kassandra Ahuero
            <kahuero2001@y...> wrote:
            >
            > Hello all,
            >
            > for those of you who dont know me, I am a teenager with AMC. For
            all of those new parents with children with AMC I know this world can
            be a cruel world and it is hard having AMC but God brought you those
            children for a purpose. Don't just say that we would be better off
            not being born. I dont mean to step on some toes, but I cant help it
            I have had a hard time dealing with my situation, but I am leading a
            normal life. When I was a baby the doctors told my mom that I would
            never be normal and that I would never be able to walk . He also told
            my mom that I would be better off in an istatution. Lets just put it
            this way I NEVER saw that doctor again. when I was a baby My AMC was
            pretty bad. After several years of working with me I can walk and
            succesfuly dress and bathe my self. I found my own adaptions and
            everything worked out really well. Dont give up on your child
            continue in the daily PT and stretches because it made a world of a
            difference in my case.I will admit know walking is alot harder for me
            and I do use a wheel Chair for long distance and crutches and AFOs
            for walking. You see if you try you can really make a difference in
            your childs life. I am sorry if I have ofended anyone I am sorry but
            I couldent just not say anything. Your children will be in my
            prayers, Keep the faith ! I wish you all the best of luck.
            > P.S. If any of you would like to talk to me or if there are any
            teenagers out there that need somone to talk to I am all ears. I look
            forward to talking to you. my email is kahuero2001@y...
            >
            > Your friend,
            >
            > Kassie Ahuero
            >
            >
            >
            > ---------------------------------
            > Do You Yahoo!?
            > New! SBC Yahoo! Dial - 1st Month Free & unlimited access
            >
            > [Non-text portions of this message have been removed]
          • Tammy Dufault
            Hi Kassie! I am happy to see you responding to the idea of wishing someone had not been born. Every life is precious. I have met several people with amc, and
            Message 5 of 5 , Jul 7, 2002
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              Hi Kassie!

              I am happy to see you responding to the idea of wishing someone had not been
              born. Every life is precious. I have met several people with amc, and each
              and every one is doing great, children and adults alike. It is so
              encouraging to us. It is difficult as parents to have to deal with
              different issues but the main thing to remember is that the child born with
              a 'disability' has a whole lifetime of opportunities ahead of him/her, and
              we are here as enablers and ambassadors for our special children. It is a
              true honour and blessing to be chosen for such an important part of
              someone's life and we are determined that our little guy gets the best we
              can give!

              Don't worry about stepping on toes...shout it from the rooftops! Everyone
              has the right to life! It is dangerous for anyone to promote the idea that
              any person with a disability is better off not being born. It is
              terrifying, in fact.

              Thanks,
              Tammy mom of Lance


              >From: kassandra Ahuero <kahuero2001@...>
              >Reply-To: arthrogryposissupportgroup@yahoogroups.com
              >To: arthrogryposissupportgroup@yahoogroups.com
              >Subject: Re: [Arthrogryposis Support Group] Hello all!
              >Date: Fri, 5 Jul 2002 16:30:22 -0700 (PDT)
              >
              >
              > Hello all,
              >
              >for those of you who dont know me, I am a teenager with AMC. For all of
              >those new parents with children with AMC I know this world can be a cruel
              >world and it is hard having AMC but God brought you those children for a
              >purpose. Don't just say that we would be better off not being born. I dont
              >mean to step on some toes, but I cant help it I have had a hard time
              >dealing with my situation, but I am leading a normal life. When I was a
              >baby the doctors told my mom that I would never be normal and that I would
              >never be able to walk . He also told my mom that I would be better off in
              >an istatution. Lets just put it this way I NEVER saw that doctor again.
              >when I was a baby My AMC was pretty bad. After several years of working
              >with me I can walk and succesfuly dress and bathe my self. I found my own
              >adaptions and everything worked out really well. Dont give up on your child
              >continue in the daily PT and stretches because it made a world of a
              >difference in my case.I will admit know walking is alot harder for me and I
              >do use a wheel Chair for long distance and crutches and AFOs for walking.
              >You see if you try you can really make a difference in your childs life. I
              >am sorry if I have ofended anyone I am sorry but I couldent just not say
              >anything. Your children will be in my prayers, Keep the faith ! I wish you
              >all the best of luck.
              >P.S. If any of you would like to talk to me or if there are any teenagers
              >out there that need somone to talk to I am all ears. I look forward to
              >talking to you. my email is kahuero2001@...
              >
              >Your friend,
              >
              >Kassie Ahuero
              >
              >
              >
              >---------------------------------
              >Do You Yahoo!?
              >New! SBC Yahoo! Dial - 1st Month Free & unlimited access
              >
              >[Non-text portions of this message have been removed]
              >




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