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Re: [Myotubular_Myopathy] REMI

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  • redscootee@webtv.net
    Lill, Welcome to the group. Lots of great ppl here. My name is pat and I am 53. My daughter and I are manifesting carriers of x-linked myotubular myopathy. My
    Message 1 of 11 , Sep 9, 2004
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      Lill, Welcome to the group. Lots of great ppl here.
      My name is pat and I am 53. My daughter and I are manifesting carriers
      of x-linked
      myotubular myopathy. My son is 29 with xmtm. We got a firm dx in 98.
      Look forward to hearing more about you and your family.
      If you have any questions feel free to ask.
      take care pat
    • Wright, Janice (J)
      Happy Birthday Jack!!!!!!!!!!!!!!! Hope you had a smashing time! Janice ... From: Jessica Juckers [mailto:jessmark@bigpond.net.au] Sent: 09 September 2004
      Message 2 of 11 , Sep 12, 2004
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        Message
        Happy Birthday Jack!!!!!!!!!!!!!!!
         
        Hope you had a smashing time!
         
        Janice
        -----Original Message-----
        From: Jessica Juckers [mailto:jessmark@...]
        Sent: 09 September 2004 12:58 AM
        To: Myotubular_Myopathy@yahoogroups.com
        Subject: [Myotubular_Myopathy] Welcome Lill & Remi :)

        Hi Lill, Welcome to the group! We are glad you have joined us.
        Remi sounds like he is doing well, sorry to hear that he aspirated not long ago, how long will it be before he can come home again?
        I'm Jess, We live in Australia & we have a son Jack (He will be 2 years old tomorrow!!) Jack spent 16 months in Intensive Care before coming home. We had to fight to get him home, we dont get any nursing help so we had to persuade the medical staff we could do it alone. Jack has been home since 24th December 2003! He has had a few admissions, but I guess we can expect that.
        I hope to hear more from you
        Take care
        Jessica



        Lill Tove wrote:
        Hello!
         
        I want you all to know that I'm reading all your mails with big interest.
        I dont write myself, because my english is very bad. But I am able to understand most of what I'm redaing.
         
        I have a nearly 15 years old healthy son, and Remi who is elleven months old with x-linked mtm.
        I am pregnant with a boy. He is going to be born 30.12.
         
        Remi is still in hospital. We had him home a month during the days, but he had to stay in hospital at nights because the nurses who is gonna come home to us at nights are not finish trainig yet.
         
        I hope you understand what I mean, I dont always find the right words.
         
        We live in Norway.
         
         
        Lill Tove
         
         
         




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      • Jessica Juckers
        Hi Janice, Thanks for the Birthdays wishes ... he is 2! Had a bit of a emotional day, all these feelings from the past 2 years manifested. I dont know why,
        Message 3 of 11 , Sep 13, 2004
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          Hi Janice,
          Thanks for the Birthdays wishes :-)   Jack had a great day, he is now telling everyone he is 2!
          Had a bit of a emotional day, all these feelings from the past 2 years manifested. I dont know why, wish it was a carefree day.
          I Kept a brave face for the boysy ;-)

          I hope you guys are well. How are you feeling about being back at work? Would be hard.. but even as much as we try, everything seems to go forward.. sometimes it should slow down.  How is Nicky? I imagine he is missing Matty, lil honey give him a big squeeze from me.  I miss reading your emails and hearing all about Matty boy.

          Big warm hug!
          Jess


          Wright, Janice (J) wrote:
          Message
          Happy Birthday Jack!!!!!!!!!!!!!!!
           
          Hope you had a smashing time!
           
          Janice
          -----Original Message-----
          From: Jessica Juckers [mailto:jessmark@...]
          Sent: 09 September 2004 12:58 AM
          To: Myotubular_Myopathy@yahoogroups.com
          Subject: [Myotubular_Myopathy] Welcome Lill & Remi :)

          Hi Lill, Welcome to the group! We are glad you have joined us.
          Remi sounds like he is doing well, sorry to hear that he aspirated not long ago, how long will it be before he can come home again?
          I'm Jess, We live in Australia & we have a son Jack (He will be 2 years old tomorrow!!) Jack spent 16 months in Intensive Care before coming home. We had to fight to get him home, we dont get any nursing help so we had to persuade the medical staff we could do it alone. Jack has been home since 24th December 2003! He has had a few admissions, but I guess we can expect that.
          I hope to hear more from you
          Take care
          Jessica



          Lill Tove wrote:
          Hello!
           
          I want you all to know that I'm reading all your mails with big interest.
          I dont write myself, because my english is very bad. But I am able to understand most of what I'm redaing.
           
          I have a nearly 15 years old healthy son, and Remi who is elleven months old with x-linked mtm.
          I am pregnant with a boy. He is going to be born 30.12.
           
          Remi is still in hospital. We had him home a month during the days, but he had to stay in hospital at nights because the nurses who is gonna come home to us at nights are not finish trainig yet.
           
          I hope you understand what I mean, I dont always find the right words.
           
          We live in Norway.
           
           
          Lill Tove
           
           
           




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

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




        • Lill Tove
          Thank you Jessica! Remi was suposed to do nissen this week but it has been canselled. We shall meet with his doctor tomorrow. I hope that we can bring him home
          Message 4 of 11 , Sep 14, 2004
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            Thank you Jessica!
             
            Remi was suposed to do nissen this week but it has been canselled.
            We shall meet with his doctor tomorrow. I hope that we can bring him home soon as possible.
             
            His father, Svein, has gone back to work so we want to have him home at afternoons and weekends.
            I dont know if i'll make it all by myself yet.
             
            Lill Tove
            ----- Original Message -----
            Sent: Thursday, September 09, 2004 12:57 AM
            Subject: [Myotubular_Myopathy] Welcome Lill & Remi :)

            Hi Lill, Welcome to the group! We are glad you have joined us.
            Remi sounds like he is doing well, sorry to hear that he aspirated not long ago, how long will it be before he can come home again?
            I'm Jess, We live in Australia & we have a son Jack (He will be 2 years old tomorrow!!) Jack spent 16 months in Intensive Care before coming home. We had to fight to get him home, we dont get any nursing help so we had to persuade the medical staff we could do it alone. Jack has been home since 24th December 2003! He has had a few admissions, but I guess we can expect that.
            I hope to hear more from you
            Take care
            Jessica



            Lill Tove wrote:
            Hello!
             
            I want you all to know that I'm reading all your mails with big interest.
            I dont write myself, because my english is very bad. But I am able to understand most of what I'm redaing.
             
            I have a nearly 15 years old healthy son, and Remi who is elleven months old with x-linked mtm.
            I am pregnant with a boy. He is going to be born 30.12.
             
            Remi is still in hospital. We had him home a month during the days, but he had to stay in hospital at nights because the nurses who is gonna come home to us at nights are not finish trainig yet.
             
            I hope you understand what I mean, I dont always find the right words.
             
            We live in Norway.
             
             
            Lill Tove
             
             
             



          • Lill Tove
            Thank you Pat! How was your son as a baby? How is he today??? I didn t know that there was any adult with mtmx. Lill Tove ... From: redscootee@webtv.net To:
            Message 5 of 11 , Sep 14, 2004
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              Thank you Pat!
               
              How was your son as a baby?
               
              How is he today???
               
              I didn't know that there was any adult with mtmx.
               
              Lill Tove
              ----- Original Message -----
              Sent: Thursday, September 09, 2004 9:33 AM
              Subject: Re: [Myotubular_Myopathy] REMI

              Lill, Welcome to the group. Lots of great ppl here.
              My name is pat and I am 53. My daughter and I are manifesting carriers
              of x-linked
              myotubular myopathy. My son is 29 with xmtm. We got a firm dx in 98.
              Look forward to hearing more about you and your family.
              If you have any questions feel free to ask.
              take care pat


            • redscootee@webtv.net
              My son is 29. He has trouble with going up stairs, getting up out of a chair or off the floor. He has a heart monitor implanted to determine if he will need a
              Message 6 of 11 , Sep 14, 2004
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                My son is 29. He has trouble with going up stairs, getting up out of a
                chair or off the floor.
                He has a heart monitor implanted to determine if he will need a heart
                defibrillator implanted. He is still able to walk and should be checked
                for sleep apenea. Other than that he is doing pretty well.
                take care pat
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