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Intro & question

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  • kieramarie1973
    Hi everyone. Alex has told me a lot about this group and am familiar with a couple of the members here. As you are probably aware Liam has had a rough time the
    Message 1 of 3 , May 31, 2005
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      Hi everyone.

      Alex has told me a lot about this group and am familiar with a couple
      of the members here.

      As you are probably aware Liam has had a rough time the last couple
      of weeks. He seems to be through the worst of it but I have a
      question that no one here seems to be able to answer, and it's a huge
      factor in future decisions that may need to be made. Is this
      condition, in particular the muscle strength, static? Or do they gain
      strength to a certain point and then level off? I realize there are
      improvements that occur naturally, as with any baby (losing primitive
      inhibatory reflexes, increased movement, etc.); and I have always
      interpreted some of them as strength gains but I'm learning that may
      not be the case.

      Thanks all.

      Kiera
    • Amanda Hollingsworth
      Yes, these boys certainly have the ability to gain strength. Jacob has gained strength at a steady rate since he was born. The thing that I am starting to
      Message 2 of 3 , Jun 2, 2005
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        Yes, these boys certainly have the ability to gain strength.  Jacob has gained strength at a steady rate since he was born.  The thing that I am starting to see with him, though, is that now that he is so big, gravity is beginning to work against him.  That is true, though, of just about any neuromuscular disease.  So, although he is still gaining strength, the curve may have began to go a little more horizontal.   
         
        I hope this helps. Hopefully others will chime in with their experiences.
         
        Take care,
        Amanda
         
        -------Original Message-------
         
        Date: 06/02/05 12:42:48
        Subject: [Myotubular_Myopathy] Intro & question
         
        Hi everyone.
         
        Alex has told me a lot about this group and am familiar with a couple
        of the members here.
         
        As you are probably aware Liam has had a rough time the last couple
        of weeks. He seems to be through the worst of it but I have a
        question that no one here seems to be able to answer, and it's a huge
        factor in future decisions that may need to be made. Is this
        condition, in particular the muscle strength, static? Or do they gain
        strength to a certain point and then level off? I realize there are
        improvements that occur naturally, as with any baby (losing primitive
        inhibatory reflexes, increased movement, etc.); and I have always
        interpreted some of them as strength gains but I'm learning that may
        not be the case.
         
        Thanks all.
         
        Kiera
         
         
         
         
         
         
         
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      • ANN MILLER
        Hi Kiera, I agree with Amanda. These boys do get stronger. Kyle s biggest problem is his size. He is the size of a 5 year old. There are some bad days,
        Message 3 of 3 , Jun 2, 2005
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          Hi Kiera,
          I agree with Amanda.  These boys do get stronger.   Kyle's biggest
          problem is his size.  He is the size of a 5 year old.  There are some
          bad days, but the good days are starting to out weigh the bad.   
          Kyle has a brother coming in October.  He also has the x-MTM. 
          We know this through testing that was done earlier.  You can see
          more about Kyle at his website www.caringbridge.org/md/kylespage
           
          I will not lie to you.  The road ahead will be rough.  There will be ups and
          downs.    It may seem like more downs to start with.  Your life will never
          be the same.    The only thing I can say is follow your heart and Keep
          faith in God.
           
          If you have any more questions or just need someone to talk things out
          with. We are here. 
           
          Take care,
          Darlene
           
           
           
           
           
          ----- Original Message -----
          Sent: Tuesday, May 31, 2005 5:33 PM
          Subject: [Myotubular_Myopathy] Intro & question

          Hi everyone.

          Alex has told me a lot about this group and am familiar with a couple
          of the members here.

          As you are probably aware Liam has had a rough time the last couple
          of weeks. He seems to be through the worst of it but I have a
          question that no one here seems to be able to answer, and it's a huge
          factor in future decisions that may need to be made. Is this
          condition, in particular the muscle strength, static? Or do they gain
          strength to a certain point and then level off? I realize there are
          improvements that occur naturally, as with any baby (losing primitive
          inhibatory reflexes, increased movement, etc.); and I have always
          interpreted some of them as strength gains but I'm learning that may
          not be the case.

          Thanks all.

          Kiera







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