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RE: [Myotubular_Myopathy] Dana

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  • Wright, Janice (J)
    Hi Dana, Welcome to the group. I remember exactly how I felt when the Dr s told me there was something wrong with Matthew and that he wouldn t last the night.
    Message 1 of 6 , Oct 12, 2005
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      Hi Dana,

      Welcome to the group. I remember exactly how I felt when the Dr’s told me there was something wrong with Matthew and that he wouldn’t last the night. It was so scary. Then they talked a whole new language, with O2 levels and vent settings, and brady’s, blood gasses and so on. They also had the doom and gloom talk with us. Then I found this group! It was still scary at times, but at least there were people here who had “been there, done that” and could advise us. Some input from me is as follows:

      1)      Don’t get worked up with all the medical jargon and the doom and gloom. I know a long time ago, someone posted a list of all the jargon so those new to the diagnosis could get a handle on what was being said, without stressing. Also read Welcome to Holland! If you haven’t been sent it, let me know and I will forward it to you. It made sense of my world, and helped me cope with not having a “normal” child.

      2)      Ask anything you want, rant if you want, rage against the world – we are all here for you – in good times and in bad! Also there is lots of info on treatment, equipment, stimulation and so on.

      3)      Celebrate every day and have no regrets! Celebrate every milestone – no matter how small. We celebrated Matthew’s birth day in weeks, then months and finally in years! Love him, and cherish him – he is a gift, and a very special boy.

      4)      Respect the Drs, but realize that you will probably be more informed than them in the long run, and you will know what is best for Cason.

      5)      Make sure you have a strong support mechanism. You will have to fight for Cason and his treatment and to get the best for him.

      6)      Read the stories. There are links to the caringbridge pages. They are inspirational! Also you can get a handle on who the boys are, how old etc and put faces to the names.

      7)      Finally stay strong. You have tapped into a group who will love and pray for you. You have an instant family.

       

      All the best and give Cason a cuddle for me.

       

      Janice Wright
       

       


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    • Dana Lofton
      Thank you so much for your post. I saved it on file so that when I have a day that I do not think that I can handle, I can come back to this post. Before we
      Message 2 of 6 , Oct 12, 2005
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        Thank you so much for your post. I saved it on file so that when I have a day that I do not think that I can handle, I can come back to this post. Before we got a dx for Cason, I joined another message board for parents with hypotonic children with all sorts of dx. There someone posted "Welcome to Holland". There was another real good read, but I can not remember the name. We have an appt with the pulmonologist tomorrow and I am praying that I get a visit where he says, "Cason is doing great". It would be a first!! Thank you again for your kind words, I need them now more than ever.              Dana

        "Wright, Janice (J)" <janice.wright@...> wrote:

        Hi Dana,

        Welcome to the group. I remember exactly how I felt when the Dr’s told me there was something wrong with Matthew and that he wouldn’t last the night. It was so scary. Then they talked a whole new language, with O2 levels and vent settings, and brady’s, blood gasses and so on. They also had the doom and gloom talk with us. Then I found this group! It was still scary at times, but at least there were people here who had “been there, done that” and could advise us. Some input from me is as follows:

        1)      Don’t get worked up with all the medical jargon and the doom and gloom. I know a long time ago, someone posted a list of all the jargon so those new to the diagnosis could get a handle on what was being said, without stressing. Also read Welcome to Holland! If you haven’t been sent it, let me know and I will forward it to you. It made sense of my world, and helped me cope with not having a “normal” child.

        2)      Ask anything you want, rant if you want, rage against the world – we are all here for you – in good times and in bad! Also there is lots of info on treatment, equipment, stimulation and so on.

        3)      Celebrate every day and have no regrets! Celebrate every milestone – no matter how small. We celebrated Matthew’s birth day in weeks, then months and finally in years! Love him, and cherish him – he is a gift, and a very special boy.

        4)      Respect the Drs, but realize that you will probably be more informed than them in the long run, and you will know what is best for Cason.

        5)      Make sure you have a strong support mechanism. You will have to fight for Cason and his treatment and to get the best for him.

        6)      Read the stories. There are links to the caringbridge pages. They are inspirational! Also you can get a handle on who the boys are, how old etc and put faces to the names.

        7)      Finally stay strong. You have tapped into a group who will love and pray for you. You have an instant family.

         

        All the best and give Cason a cuddle for me.

         

        Janice Wright
         

         



        NOTICE: Please note that this eMail, and the contents thereof, is subject to the standard Sasol eMail legal notice which may be found at: http://www.sasol.com/legalnotices

        If you cannot access the legal notice through the URL attached and you wish to receive a copy thereof please send an eMail to legalnotice@...



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