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Re: [Myotubular_Myopathy] Javad

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  • ANN MILLER
    Shannon, Sorry to hear Javad is still in the hospital. We are praying for a speedy recovery. Give him a hug and kiss for us. Take care, Darlene ... From:
    Message 1 of 27 , Feb 11, 2005
      Shannon,
       
      Sorry to hear Javad is still in the hospital.  We are praying for a speedy
      recovery.  Give him a hug and kiss for us. 
       
      Take care,
       
      Darlene
      ----- Original Message -----
      From: Shannon
      Sent: Friday, February 11, 2005 12:19 PM
      Subject: [Myotubular_Myopathy] Javad



      Hi everyone,

      I am glad that Jack is home and feeling better. Javad is still in the PICU. He
      was extubated this monday (which they were very pleased about), but we are
      having a hard time getting him off his bi-pap. He has been on 24 hour bi-pap
      since monday. He tires really easy and has had a major desat episode each
      of the last two days. Then he is exhausted for a few hours! Overall his mood is
      good. We have spent a lot of time together! I have been going to work during
      the day and then spending the night with him. I hoped that we might go home
      by this weekend, but I don't hink that is going to happen. 

      On another note...would it be possible to post the new pictures in the photo
      section. For some reason my computer won't pull them up!

      Love to all!

      Shannon





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    • Shannon
      Hi everyone, Just a note...Javad is in the hospital with parainfluenza (which causes croup and pneumonia) bummer! He s in the PICu, intubated. I was hoping for
      Message 2 of 27 , May 23, 2005
        Hi everyone,

        Just a note...Javad is in the hospital with parainfluenza (which causes croup
        and pneumonia) bummer!

        He's in the PICu, intubated. I was hoping for a short stay...keep us in your
        thoughts!

        Shannon
      • rachel_wrigley
        hi shannon im sorry to hear about javad your all in our hearts and please keep us up to date on his progress our thoughts are with you rachel&family ... causes
        Message 3 of 27 , May 24, 2005
          hi shannon
          im sorry to hear about javad your all in our hearts and please keep us
          up to date on his progress our thoughts are with you
          rachel&family
          > Hi everyone,
          >
          > Just a note...Javad is in the hospital with parainfluenza (which
          causes croup
          > and pneumonia) bummer!
          >
          > He's in the PICu, intubated. I was hoping for a short stay...keep us
          in your
          > thoughts!
          >
          > Shannon
        • ANN MILLER
          Hi Shannon, Sorry to hear Javad is in the hospital. Hope he gets to come home soon. We will pray for a speedy recovery. Give him a big hug for us. Love,
          Message 4 of 27 , May 24, 2005
            Hi Shannon,
            Sorry to hear Javad is in the hospital.  Hope he gets to come home soon.
            We will pray for a speedy recovery.  Give him a big hug for us.
             
            Love,
            Darlene
            ----- Original Message -----
            From: Shannon
            Sent: Monday, May 23, 2005 6:59 PM
            Subject: [Myotubular_Myopathy] Javad

            Hi everyone,

            Just a note...Javad is in the hospital with parainfluenza (which causes croup
            and pneumonia) bummer!

            He's in the PICu, intubated. I was hoping for a short stay...keep us in your
            thoughts!

            Shannon




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          • alex muendel
            -My thoughts and prayers are with you and your family Shannon. Alex ... __________________________________ Discover Yahoo! Get on-the-go sports scores, stock
            Message 5 of 27 , May 24, 2005
              -My thoughts and prayers are with you and your family
              Shannon.

              Alex
              >




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            • Amanda Hollingsworth
              Shannon, I am so sorry to hear of Javad s hospitalization. I will be praying for a speedy recovery for him. HUGS, Amanda ... From: Shannon Date: 05/23/05
              Message 6 of 27 , May 24, 2005
                Shannon,  I am so sorry to hear of Javad's hospitalization.  I will be praying for a speedy recovery for him.
                 
                HUGS,
                Amanda 
                 
                -------Original Message-------
                 
                From: Shannon
                Date: 05/23/05 18:59:45
                Subject: [Myotubular_Myopathy] Javad
                 
                Hi everyone,
                 
                Just a note...Javad is in the hospital with parainfluenza (which causes croup
                and pneumonia) bummer!
                 
                He's in the PICu, intubated. I was hoping for a short stay...keep us in your
                thoughts!
                 
                Shannon
                 
                 
                 
                 
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              • Shannon
                Hi everyone, A quick note...seems Javad had better things in mind than coming home. I got a phone call at work saying that he had coded in the PICU. I had only
                Message 7 of 27 , Jun 7, 2005
                  Hi everyone,

                  A quick note...seems Javad had better things in mind than coming home.
                  I got a phone call at work saying that he had coded in the PICU. I had
                  only left him a few hours earlier. His left lung is really socked in.
                  It happened fast. Tomorrow he may have a bronch to find out what is
                  going on. Please keep him in your thoughts. I keep telling him I want
                  to take him to the zoo.....:)

                  Shannon
                • redscootee@webtv.net
                  Shannon, My prayers are with you during this difficult time. Keep us posted on how Javad is doing. I hope the bronco doc can help him. take care pat
                  Message 8 of 27 , Jun 7, 2005
                    Shannon,
                    My prayers are with you during this difficult time. Keep us posted on
                    how Javad is doing. I hope the bronco doc can help him.
                    take care pat
                  • ANN MILLER
                    Shannon, Sorry to hear Javad is not doing better. Hope everything is ok. We will continue to keep Javad in our prayers. Love Darlene ... From:
                    Message 9 of 27 , Jun 7, 2005
                      Shannon,
                       
                      Sorry to hear Javad is not doing better.  Hope everything is ok.  We will
                      continue to keep Javad in our prayers. 
                       
                      Love
                      Darlene
                      ----- Original Message -----
                      From: Shannon
                      Sent: Tuesday, June 07, 2005 3:00 AM
                      Subject: [Myotubular_Myopathy] Javad

                      Hi everyone,

                      A quick note...seems Javad had better things in mind than coming home.
                      I got a phone call at work saying that he had coded in the PICU. I had
                      only left him a few hours earlier. His left lung is really socked in.
                      It happened fast. Tomorrow he may have a bronch to find out what is
                      going on. Please keep him in your thoughts. I keep telling him I want
                      to take him to the zoo.....:)

                      Shannon




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                    • Amanda Hollingsworth
                      OH Shannon! I am really sorry that Javad is so sick this time. Hopefully, with the bronch, they can get in there and see what is going on and maybe open him
                      Message 10 of 27 , Jun 7, 2005
                        OH Shannon!  I am really sorry that Javad is so sick this time.  Hopefully, with the bronch, they can get in there and see what is going on and maybe open him back up.  
                         
                        ((((HUGS)))) for Javad and yourself!
                         
                        Love,
                        Amanda 
                         
                        -------Original Message-------
                         
                        From: Shannon
                        Date: 06/07/05 03:01:02
                        Subject: [Myotubular_Myopathy] Javad
                         
                        Hi everyone,
                         
                        A quick note...seems Javad had better things in mind than coming home.
                        I got a phone call at work saying that he had coded in the PICU. I had
                        only left him a few hours earlier. His left lung is really socked in.
                        It happened fast. Tomorrow he may have a bronch to find out what is
                        going on. Please keep him in your thoughts. I keep telling him I want
                        to take him to the zoo.....:)
                         
                        Shannon
                         
                         
                         
                         
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                      • kristin cypher
                        Oh Shannon!! Paul, Sebi and I are all thinking warm and well thoughts for you and your family. Hugs to you and Javad!! Kristin Shannon
                        Message 11 of 27 , Jun 7, 2005
                          Oh Shannon!!  Paul, Sebi and I are all thinking warm and well thoughts for you and your family.
                           
                          Hugs to you and Javad!!
                          Kristin

                          Shannon <smashintwo66@...> wrote:
                          Hi everyone,

                          A quick note...seems Javad had better things in mind than coming home.
                          I got a phone call at work saying that he had coded in the PICU. I had
                          only left him a few hours earlier. His left lung is really socked in.
                          It happened fast. Tomorrow he may have a bronch to find out what is
                          going on. Please keep him in your thoughts. I keep telling him I want
                          to take him to the zoo.....:)

                          Shannon



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                        • alex muendel
                          Shannon, just want you to know that Javad is in my thoughts as are you and your family.....stay strong! alex __________________________________ Yahoo! Mail
                          Message 12 of 27 , Jun 7, 2005
                            Shannon,

                            just want you to know that Javad is in my thoughts as
                            are you and your family.....stay strong!

                            alex



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                          • Shannon
                            Just wanted to let you all know... Tomorrow (November 1) is Javad s 4th birthday! (Not 40th like it sometimes feels!:) Thanks for being so supportive over the
                            Message 13 of 27 , Oct 31 7:45 PM
                              Just wanted to let you all know...

                              Tomorrow (November 1) is Javad's 4th birthday! (Not 40th like it
                              sometimes feels!:)

                              Thanks for being so supportive over the last 2 years since his
                              diagnosis!

                              Love to you all!

                              Shannon

                              PS. Maybe you could leave him a birthday note at
                              www.caringbridge.org/or/javad
                            • Amanda Hollingsworth
                              HAPPY, HAPPY BELATED BIRTHDAY BIG BOY!!! We are all so proud of you. Shannon wrote: Just wanted to let you all know... Tomorrow
                              Message 14 of 27 , Nov 2, 2005
                                HAPPY, HAPPY BELATED BIRTHDAY BIG BOY!!!  We are all so proud of you.
                                 


                                Shannon <smashintwo66@...> wrote:
                                Just wanted to let you all know...

                                Tomorrow (November 1) is Javad's 4th birthday! (Not 40th like it
                                sometimes feels!:)

                                Thanks for being so supportive over the last 2 years since his
                                diagnosis!

                                Love to you all!

                                Shannon

                                PS. Maybe you could leave him a birthday note at
                                www.caringbridge.org/or/javad






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                              • patsarah2006
                                Shannon, I hope Javad gets rid of his infection and is back home soon! Sarah
                                Message 15 of 27 , Dec 3, 2006
                                  Shannon,
                                  I hope Javad gets rid of his infection and is back home soon! Sarah
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