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  • jenn332
    Hi all, I just wanted to share my happiness with you; my son, Nathaniel, had his first home-day on 19th December and it went really well! We have a few more
    Message 1 of 9 , Dec 27, 2008
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      Hi all,
      I just wanted to share my happiness with you; my son, Nathaniel, had
      his first home-day on 19th December and it went really well! We have a
      few more home visits scheduled before we move to overnight stays and
      then hopefully he will be home full-time by the end of Feb (just a
      month before he turns 1!!) I've posted the pics of his home visit and
      you'll see just how relaxed and happy he was. I hope to have lots more
      of these to show you in the coming months.
      Wishing you all a happy and stress-free new year,

      Jennie
    • Connie Guinn
      I am so thrilled for you! You must be floating on a cloud over his visit home:) Thank you SO much for sharing this with us. The pictures are adorable, and
      Message 2 of 9 , Dec 27, 2008
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        I am so thrilled for you!   You must be floating on a cloud over his visit home:)  Thank you SO much for sharing this with us.  The pictures are adorable, and little Nathanial is absolutely darling!!  Congratulations- this must have been the best Christmas present, ever!
         

        Connie Guinn, Director

        MTM-CNM Conference Planning Team

        mtmfamilyconference@...

        www.mtm-cnm.com




        From: jenn332 <jenniejenkins@...>
        To: Myotubular_Myopathy@yahoogroups.com
        Sent: Saturday, December 27, 2008 8:48:05 AM
        Subject: [Myotubular_Myopathy] Hello everyone

        Hi all,
        I just wanted to share my happiness with you; my son, Nathaniel, had
        his first home-day on 19th December and it went really well! We have a
        few more home visits scheduled before we move to overnight stays and
        then hopefully he will be home full-time by the end of Feb (just a
        month before he turns 1!!) I've posted the pics of his home visit and
        you'll see just how relaxed and happy he was. I hope to have lots more
        of these to show you in the coming months.
        Wishing you all a happy and stress-free new year,

        Jennie


      • Shannon
        I am so happy that Nathan got to come home for a much needed visit...I will keep all in my prayers that he gets to come home and stay home soon! Shannon
        Message 3 of 9 , Dec 27, 2008
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          I am so happy that Nathan got to come home for a much needed visit...I
          will keep all in my prayers that he gets to come home and stay home soon!

          Shannon
        • Sheallyn
          He looks great and I love the smile on his face .. congrats on having him home :))
          Message 4 of 9 , Dec 27, 2008
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            He looks great and I love the smile on his face .. congrats on having
            him home :))
          • Corey Leibowitz
            Jennie Congrats! I loved the picture of you and Nat relaxing on the rug. He looks wonderful!! I am so happy for you.   Corey Leibowitz   From: jenn332
            Message 5 of 9 , Dec 27, 2008
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              Jennie
              Congrats! I loved the picture of you and Nat relaxing on the rug. He looks wonderful!! I am so happy for you.
               
              Corey Leibowitz


               


              From: jenn332 <jenniejenkins@ rocketmail. com>
              To: Myotubular_Myopathy @yahoogroups. com
              Sent: Saturday, December 27, 2008 8:48:05 AM
              Subject: [Myotubular_ Myopathy] Hello everyone

              Hi all,
              I just wanted to share my happiness with you; my son, Nathaniel, had
              his first home-day on 19th December and it went really well! We have a
              few more home visits scheduled before we move to overnight stays and
              then hopefully he will be home full-time by the end of Feb (just a
              month before he turns 1!!) I've posted the pics of his home visit and
              you'll see just how relaxed and happy he was. I hope to have lots more
              of these to show you in the coming months.
              Wishing you all a happy and stress-free new year,

              Jennie


            • The Winns
              Over the last several weeks Allie has had trouble sleeping due to what I think might be mucus in her throat although I cant see it and don t understand where
              Message 6 of 9 , Dec 29, 2008
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                Over the last several weeks Allie has had trouble sleeping due to what I think might be mucus in her throat although I cant see it and don't understand where it would come from. Her symptoms include:
                - a combination between a dry and wet cough (hard to explain)
                - trouble breathing through her nose
                - gagging several times during the night and early morning.
                - Once she sits up her symptoms completely disappear.
                - During the day she has no cold like symptoms, no stuffy nose.
                - She has woke up with three bloody noses in the last three months.
                - Elevating her bed doesn't help.
                 
                She's went through this before but not quite as bad. When we first moved here to Northern California From Ohio last April she did this for a few weeks. The doctor felt that she had allergies and gave her a bunch of meds that never worked. Allergies are really bad here and it runs in both families so I didn't doubt the Doctor.
                 
                I thought about getting a humidifier to loosen up the secretions but last time the doctor recommended one while she was sick it seemed to make things worse. It thinned out the mucus to the point where it was all over her face and her bed. More importantly, she got a really wet cough from all the drainage and it put her at risk for aspirating.
                 
                Any thoughts?
                 
                ~Jenna~



              • Scott & Staceyanne Fontana
                Hi Jenna - Has Allie ever had a bronch ? Maybe it s something structural that is becoming more pronounced as she is getting bigger. Mason has a very high
                Message 7 of 9 , Dec 29, 2008
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                  Hi Jenna -

                  Has Allie ever had a bronch ? Maybe it's something structural that is
                  becoming more pronounced as she is getting bigger. Mason has a very
                  high narrow palate, I believe this is common in MTM kids. He had to
                  have some laser work done to tighten up his "false vocal cords" when
                  he had his tonsils and adenoids removed around age 3. I believe they
                  also worked on his epiglottis. Mason has severe bronchial, tracheal,
                  and laryngeal malacia and has serious upper airway collape withouth
                  the assistance of the trach and vent. Now I'm not saying this is the
                  case for Allie, but a bronch and sleep study may be a good idea.
                  Mason has sleep studies twice a year, as when he is sleeping is when
                  he needs the most support. We got your Christmas card - what a cutie-
                  we are planning to be in Redding on January 3rd and still would love
                  to meet you.

                  -Scott, Staceyanne & Mason

                  --- In Myotubular_Myopathy@yahoogroups.com, The Winns
                  <jennaleigh85@...> wrote:
                  >
                  > Over the last several weeks Allie has had trouble sleeping due to
                  what I think might be mucus in her throat although I cant see it and
                  don't understand where it would come from. Her symptoms include:
                  > - a combination between a dry and wet cough (hard to explain)
                  > - trouble breathing through her nose
                  > - gagging several times during the night and early morning.
                  > - Once she sits up her symptoms completely disappear.
                  > - During the day she has no cold like symptoms, no stuffy nose.
                  > - She has woke up with three bloody noses in the last three months.
                  > - Elevating her bed doesn't help.
                  >  
                  > She's went through this before but not quite as bad. When we first
                  moved here to Northern California From Ohio last April she did this
                  for a few weeks. The doctor felt that she had allergies and gave her
                  a bunch of meds that never worked. Allergies are really bad here and
                  it runs in both families so I didn't doubt the Doctor.
                  >  
                  > I thought about getting a humidifier to loosen up the secretions
                  but last time the doctor recommended one while she was sick it seemed
                  to make things worse. It thinned out the mucus to the point where it
                  was all over her face and her bed. More importantly, she got a really
                  wet cough from all the drainage and it put her at risk for
                  aspirating.
                  >  
                  > Any thoughts?
                  >  
                  > ~Jenna~
                  >
                • The Winns
                   Allie had a bronchoscopy when she was seven days old. It confirmed both tracheal and laryngeal malacia which has gotten better with age. Every once in awhile
                  Message 8 of 9 , Dec 29, 2008
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                     Allie had a bronchoscopy when she was seven days old. It confirmed both tracheal and laryngeal malacia which has gotten better with age. Every once in awhile I hear her strider - usually when shes really sick or laughing hard but its very mild.
                    And she has a very high narrow palate as well. It may have effected the way her teeth have grown in but has caused no other known problems.
                    She had her first sleep study a little over a year ago even though she wasn't having any noticeable sleep problems at the time. It was simply for the doctors piece of mind. The results came up slightly abnormal but nothing to be alarmed about.
                    I think that your right to suggest more tests though. This last year after having a major growth spurt we've seen a lot of changes and sets backs with Allie. I definitely would like another sleep study soon to give myself piece of mind now.
                    Maybe you guys could give us a call the day before you come to Redding?
                    We got your pictures too. They were great! It's a very good picture of Mason!
                     
                    ~Jenna~

                    --- On Mon, 12/29/08, Scott & Staceyanne Fontana <masonsparents@...> wrote:
                    From: Scott & Staceyanne Fontana <masonsparents@...>
                    Subject: [Myotubular_Myopathy] Re: Allie's troubled sleep
                    To: Myotubular_Myopathy@yahoogroups.com
                    Date: Monday, December 29, 2008, 4:53 PM

                    Hi Jenna -

                    Has Allie ever had a bronch ? Maybe it's something structural that is
                    becoming more pronounced as she is getting bigger. Mason has a very
                    high narrow palate, I believe this is common in MTM kids. He had to
                    have some laser work done to tighten up his "false vocal cords" when
                    he had his tonsils and adenoids removed around age 3. I believe they
                    also worked on his epiglottis. Mason has severe bronchial, tracheal,
                    and laryngeal malacia and has serious upper airway collape withouth
                    the assistance of the trach and vent. Now I'm not saying this is the
                    case for Allie, but a bronch and sleep study may be a good idea.
                    Mason has sleep studies twice a year, as when he is sleeping is when
                    he needs the most support. We got your Christmas card - what a cutie-
                    we are planning to be in Redding on January 3rd and still would love
                    to meet you.

                    -Scott, Staceyanne & Mason

                    --- In Myotubular_Myopathy @yahoogroups. com, The Winns
                    <jennaleigh85@ ...> wrote:
                    >
                    > Over the last several weeks Allie has had trouble sleeping due to
                    what I think might be mucus in her throat although I cant see it and
                    don't understand where it would come from. Her symptoms include:
                    > - a combination between a dry and wet cough (hard to explain)
                    > - trouble breathing through her nose
                    > - gagging several times during the night and early morning.
                    > - Once she sits up her symptoms completely disappear.
                    > - During the day she has no cold like symptoms, no stuffy nose.
                    > - She has woke up with three bloody noses in the last three months.
                    > - Elevating her bed doesn't help.
                    >  
                    > She's went through this before but not quite as bad. When we first
                    moved here to Northern California From Ohio last April she did this
                    for a few weeks. The doctor felt that she had allergies and gave her
                    a bunch of meds that never worked. Allergies are really bad here and
                    it runs in both families so I didn't doubt the Doctor.
                    >  
                    > I thought about getting a humidifier to loosen up the secretions
                    but last time the doctor recommended one while she was sick it seemed
                    to make things worse. It thinned out the mucus to the point where it
                    was all over her face and her bed. More importantly, she got a really
                    wet cough from all the drainage and it put her at risk for
                    aspirating.
                    >  
                    > Any thoughts?
                    >  
                    > ~Jenna~
                    >


                  • cleibo1
                    Hi Jenna Have you looked into reflux. All the symptoms you are describing Spencer had before he went onto reflux medicine. Corey ... what I think might be
                    Message 9 of 9 , Dec 30, 2008
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                      Hi Jenna
                      Have you looked into reflux. All the symptoms you are describing
                      Spencer had before he went onto reflux medicine.
                      Corey



                      --- In Myotubular_Myopathy@yahoogroups.com, The Winns
                      <jennaleigh85@...> wrote:
                      >
                      > Over the last several weeks Allie has had trouble sleeping due to
                      what I think might be mucus in her throat although I cant see it and
                      don't understand where it would come from. Her symptoms include:
                      > - a combination between a dry and wet cough (hard to explain)
                      > - trouble breathing through her nose
                      > - gagging several times during the night and early morning.
                      > - Once she sits up her symptoms completely disappear.
                      > - During the day she has no cold like symptoms, no stuffy nose.
                      > - She has woke up with three bloody noses in the last three months.
                      > - Elevating her bed doesn't help.
                      >  
                      > She's went through this before but not quite as bad. When we first
                      moved here to Northern California From Ohio last April she did this
                      for a few weeks. The doctor felt that she had allergies and gave her
                      a bunch of meds that never worked. Allergies are really bad here and
                      it runs in both families so I didn't doubt the Doctor.
                      >  
                      > I thought about getting a humidifier to loosen up the secretions
                      but last time the doctor recommended one while she was sick it seemed
                      to make things worse. It thinned out the mucus to the point where it
                      was all over her face and her bed. More importantly, she got a really
                      wet cough from all the drainage and it put her at risk for
                      aspirating.
                      >  
                      > Any thoughts?
                      >  
                      > ~Jenna~
                      >
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