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1522Re: [Myotubular_Myopathy] Just returned from Boston

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    Nov 30, 2004
      Hi Carolyn,
      Glad to hear you had a good visit in Boston.  Kyle takes Robinal.  It works wonders
      for him.  Each day is different though.  Sometimes he gets it 3 times a day and
      somethimes 4, it all depends on the weather.  If it is raining or rain is near he needs
      more.  Kyle has become our local weather advisor. We have even gotten through
      the day with only 2 doses ( on good days).  But our usual is 3 doses. 
      Kyle didn't gain weight fast, he was almost 10 months old before he was at normal
      weight for his age and height.  Now he is at the 98% for both.  He is a bigggggg
      boy now.  The size of his 4 year old sister. 
      Let Lisa know that each day is different.  Some days are better than others, some
      are worse.  I have found out that you can over suction sometimes, which makes
      the sucretions worse.  All she can do is be there for Austin.  Take each day one at
      a time. 
      Take care,
      ----- Original Message -----
      Sent: Saturday, November 27, 2004 10:19 AM
      Subject: [Myotubular_Myopathy] Just returned from Boston

      I've finally had a chance to get caught up with all of your postings
      since I left on the morning of the 17th, shed more than a few tears
      while I read Janice's message about Matthew, and called my daughter
      to warn her to keep their credit cards under lock and key!  It's a
      good time to think about all that I'm thankful for, even though it's
      a few days late!

      The first day that I arrived in Boston was the worst - Austin had
      been going through three days of constant suctioning, was listless
      and unhappy, and Lisa warned me not to be hopeful as she felt the
      end was near.  I cried throughout most of the first night, hoping
      that we could have at least a few days with him before he passed. 
      Surprisingly, he began improving the next day, and by the time we
      left he had become much stronger and even started to smile!  Lisa
      and Fred realized that, in their effort to control his reflux, they
      weren't giving him enough nourishment, so they increased his food
      and added a nutritional supplement.  He's still underweight, but he
      looks much better and is once again kicking his legs, moving his
      arms, and moving his head from side to side.  We celebrated his two
      month birthday on the 20th by giving him a haircut and taking him
      outside in the cold Boston weather.  It was a great visit!

      I've been surprised by and thankful for the many kindnesses of those
      who have helped care for Austin - his pediatrician stops by every
      week on her way home, spends an hour or more examining him and
      answering their questions, and has told her staff to put through
      their calls immediately even while she's busy with her regular
      patients. His caseworker brought over a scale and digital saturation
      monitor (he's still at 100%!) during her day off, and contacted
      other nursing agencies outside her scope of authority in her attempt
      to get a night nurse for them (she succeeded in finding two good

      While in Boston I accessed our MTM group archived messages to see if
      I could find the Robinal discussion, as none of the healthcare
      professionals we contacted could tell us whether the drug actually
      decreased the amount of secretions or if it simply made them
      thicker.  After reading your messages, we decided to start out
      slowly and at a lesser dosage, which worked well.  Lisa and I also
      had a long discussion about her desire to have more children as
      quickly as possible (she's 36).  She was under the impression that
      she wouldn't be able to care for another child while Austin was
      still alive, but I told her that I knew it was possible because so
      many of you had been doing it. I can't imagine how difficult it must
      be for you, as I know that Austin's care is almost a full time job!

      Anyway, many thanks to all of you on this late Thanksgiving day!  I
      really appreciate belonging to such a supportive group!


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