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What I posted for family and friends on my baby website

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  • madisongraceburleau
    January 3rd, 2007 Well today we were fed our hearts on a plate. Madie s test results came back postive for Angelman s Syndrome. And as much as I do not want
    Message 1 of 6 , Jan 4, 2007
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      January 3rd, 2007

      Well today we were fed our hearts on a plate. Madie's test results
      came back postive for Angelman's Syndrome. And as much as I do not
      want to draw attention to ourselves at this time, I want to educate
      those who love and support Madison in everything she does. Our
      dreams for our daughter to get married, graduate from University,
      call out our names etc. died today. Dr. Keene was gracious enough to
      not call with the test results before Christmas- as he had the
      results since December 13th. We are just trying to digest what we
      have heard and organize our lives the best we can. I will be going
      part time in August so that I can teach, support and be with Madie
      as she really starts to thrive. Madison will still be able to learn
      up into early adulthood. Today we are dreaming a new dream for our
      little girl. One day at a time. Our goals include her saying mom and
      dad, and learning how to communicate in a non verbal manner. As well
      as starting to walk. We know she is a happy little girl and somehow
      seeing her smile makes all this a lot less painful. We have so much
      hope for her!:) She is biting my big toe under the computer desk as
      I write this.

      We love you Madison you are one special girl. Not sure why were
      given this challenge- but our life sure will be interesting to say
      the least:)
    • Natalie
      I totally understand what you are going thru. My son Devin is 6 going on 7 in May. We got his diagnoses 3 yrs ago. Very heartbreaking to say the least.
      Message 2 of 6 , Jan 4, 2007
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        I totally understand what you are going thru. My son Devin is 6 going on 7 in May. We got his diagnoses 3 yrs ago. Very heartbreaking to say the least. Again, alot of what I had expected to see in the future for my son went down the drain. Cried alot! At least though we finally got an answer to the question we had for a couple of years......What is goin on with our son..........why is he slow, why does he have microcephaly, why did he all of sudden have seizure drop attacks for 7 days straight? Our question was answered, now we are able to prepare for the future. We are actually very lucky with our son. He doesn't seem to have a lot of the issues as some of the others. I believe it has partly to do with my daughter who is now 5yrs. He has diffenately learned alot by observing her and trying to imitate her. He is very happy, always smiling. Walks really well, can almost run. He can feed himself, however depending on the food, it can get messy. He sleeps
        throughout the night, and does not take naps.....He refuses to take naps. My house is pretty bare since anything out he will want to grab and put in his mouth. He drools, so we are constantly having to change his shirts. He will not wear a bib, used to take if off when we put it on him. The only thing he say is "MaMa". He knows its me but he will also often say it trying to say something else. He does some sign language, "more, please,eat, drink". He points to things he wants or he will grab you and bring you to what he wants. He does have a high tolerance to pain. We are currently trying to potty train him. Has been an ongoing process. He has his good and bad days. He is finally in school this year full time along with his sister. Very nice since now I can get some things done during the day while the kids are at school. Just wanted to let you know that what you are feeling is natural. Just think now you got an answer to your question and you can prepare
        for the future. Take Care, Natalie

        [Non-text portions of this message have been removed]
      • Thelma Jones
        Natalie for our son s drooling he wears bandanas around his neck, we hang them low enough to catch the drool and keep him dry, they work well. Tami ...
        Message 3 of 6 , Jan 4, 2007
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          Natalie for our son's drooling he wears bandanas around his neck, we hang
          them low enough to catch the drool and keep him dry, they work well.

          Tami


          >From: Natalie <natalieandjason@...>
          >Reply-To: familiesofangelmansyndrome@yahoogroups.com
          >To: familiesofangelmansyndrome@yahoogroups.com
          >Subject: Re: [Families of Angelman Syndrome] What I posted for family and
          >friends on my baby website
          >Date: Thu, 4 Jan 2007 17:55:25 -0800 (PST)
          >
          >I totally understand what you are going thru. My son Devin is 6 going on 7
          >in May. We got his diagnoses 3 yrs ago. Very heartbreaking to say the
          >least. Again, alot of what I had expected to see in the future for my son
          >went down the drain. Cried alot! At least though we finally got an answer
          >to the question we had for a couple of years......What is goin on with our
          >son..........why is he slow, why does he have microcephaly, why did he all
          >of sudden have seizure drop attacks for 7 days straight? Our question was
          >answered, now we are able to prepare for the future. We are actually very
          >lucky with our son. He doesn't seem to have a lot of the issues as some of
          >the others. I believe it has partly to do with my daughter who is now
          >5yrs. He has diffenately learned alot by observing her and trying to
          >imitate her. He is very happy, always smiling. Walks really well, can
          >almost run. He can feed himself, however depending on the food, it can get
          >messy. He sleeps
          > throughout the night, and does not take naps.....He refuses to take naps.
          > My house is pretty bare since anything out he will want to grab and put
          >in his mouth. He drools, so we are constantly having to change his shirts.
          > He will not wear a bib, used to take if off when we put it on him. The
          >only thing he say is "MaMa". He knows its me but he will also often say it
          >trying to say something else. He does some sign language, "more,
          >please,eat, drink". He points to things he wants or he will grab you and
          >bring you to what he wants. He does have a high tolerance to pain. We are
          >currently trying to potty train him. Has been an ongoing process. He has
          >his good and bad days. He is finally in school this year full time along
          >with his sister. Very nice since now I can get some things done during the
          >day while the kids are at school. Just wanted to let you know that what
          >you are feeling is natural. Just think now you got an answer to your
          >question and you can prepare
          > for the future. Take Care, Natalie
          >
          >[Non-text portions of this message have been removed]
          >

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        • Natalie
          The only thing I worry about that is if you tie it.......I don t want my son to grab the back and pull on it making it tighter to choke himself. Do you have
          Message 4 of 6 , Jan 4, 2007
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            The only thing I worry about that is if you tie it.......I don't want my son to grab the back and pull on it making it tighter to choke himself. Do you have velcro on the back? Thanks for your suggestion!


            [Non-text portions of this message have been removed]
          • sara good
            Hello. My name is Donna and my son Joshua is 3. He was diagnosed with Angelman Syndrome a month before his 2nd Birthday. It is hard to swallow. It is your
            Message 5 of 6 , Jan 7, 2007
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              Hello. My name is Donna and my son Joshua is 3. He was diagnosed with Angelman Syndrome a month before his 2nd Birthday.

              It is hard to swallow. It is your heart being handed to you on a platter. I know how you feel and I am sorry.

              It was finally good to have a diagnosis so we could have a prognosis, but, at the same time all of our hopes and dreams for our child died.

              But, over time, after it has all sunk in, you make new plans and dreams. And the littlest things they do just mean so much.

              I am not saying the road is easy. There are days of heartbreak, nights when you cry yourself to sleep. And days when you feel like they were cheated out of so much.

              But, know that only the Lord doesn't give you anymore you can handle.

              If there is anything I can do please let me know.

              Lots of love,
              Donna

              madisongraceburleau <sarahburleau@...> wrote: January 3rd, 2007

              Well today we were fed our hearts on a plate. Madie's test results
              came back postive for Angelman's Syndrome. And as much as I do not
              want to draw attention to ourselves at this time, I want to educate
              those who love and support Madison in everything she does. Our
              dreams for our daughter to get married, graduate from University,
              call out our names etc. died today. Dr. Keene was gracious enough to
              not call with the test results before Christmas- as he had the
              results since December 13th. We are just trying to digest what we
              have heard and organize our lives the best we can. I will be going
              part time in August so that I can teach, support and be with Madie
              as she really starts to thrive. Madison will still be able to learn
              up into early adulthood. Today we are dreaming a new dream for our
              little girl. One day at a time. Our goals include her saying mom and
              dad, and learning how to communicate in a non verbal manner. As well
              as starting to walk. We know she is a happy little girl and somehow
              seeing her smile makes all this a lot less painful. We have so much
              hope for her!:) She is biting my big toe under the computer desk as
              I write this.

              We love you Madison you are one special girl. Not sure why were
              given this challenge- but our life sure will be interesting to say
              the least:)






              [Non-text portions of this message have been removed]
            • SARAH BURLEAU
              thank you kindly:) sara good wrote: Hello. My name is Donna and my son Joshua is 3. He was diagnosed with Angelman Syndrome
              Message 6 of 6 , Jan 8, 2007
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                thank you kindly:)

                sara good <iamdonna42701@...> wrote: Hello. My name is Donna and my son Joshua is 3. He was diagnosed with Angelman Syndrome a month before his 2nd Birthday.

                It is hard to swallow. It is your heart being handed to you on a platter. I know how you feel and I am sorry.

                It was finally good to have a diagnosis so we could have a prognosis, but, at the same time all of our hopes and dreams for our child died.

                But, over time, after it has all sunk in, you make new plans and dreams. And the littlest things they do just mean so much.

                I am not saying the road is easy. There are days of heartbreak, nights when you cry yourself to sleep. And days when you feel like they were cheated out of so much.

                But, know that only the Lord doesn't give you anymore you can handle.

                If there is anything I can do please let me know.

                Lots of love,
                Donna

                madisongraceburleau <sarahburleau@...> wrote: January 3rd, 2007

                Well today we were fed our hearts on a plate. Madie's test results
                came back postive for Angelman's Syndrome. And as much as I do not
                want to draw attention to ourselves at this time, I want to educate
                those who love and support Madison in everything she does. Our
                dreams for our daughter to get married, graduate from University,
                call out our names etc. died today. Dr. Keene was gracious enough to
                not call with the test results before Christmas- as he had the
                results since December 13th. We are just trying to digest what we
                have heard and organize our lives the best we can. I will be going
                part time in August so that I can teach, support and be with Madie
                as she really starts to thrive. Madison will still be able to learn
                up into early adulthood. Today we are dreaming a new dream for our
                little girl. One day at a time. Our goals include her saying mom and
                dad, and learning how to communicate in a non verbal manner. As well
                as starting to walk. We know she is a happy little girl and somehow
                seeing her smile makes all this a lot less painful. We have so much
                hope for her!:) She is biting my big toe under the computer desk as
                I write this.

                We love you Madison you are one special girl. Not sure why were
                given this challenge- but our life sure will be interesting to say
                the least:)





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







                When you can't have what you want, it's time to start wanting what you have. ~Kathleen A. Sutton

                Sarah Amanda Burleau





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