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Re: [Myotubular_Myopathy] Kaden has passed away ...

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  • Krista DeVore
    Hello, My family and I am terribly sorry about your loss. Kaden was a blessing. We will keep you in our prayers. God bless, The DeVores Sheallyn
    Message 1 of 22 , Feb 13, 2008
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      Hello,
      My family and I am terribly sorry about your loss. Kaden was a blessing. We will keep you in our prayers.
      God bless,
      The DeVores

      Sheallyn <sheallyn73@...> wrote:
      Hi all,

      As you all know, our sweet baby boy Kaden had come down with a para
      flu close to two weeks ago. On Thursday, Feb 7th, we did an x-ray
      which confirmed Kaden's lung had collapsed and that there was a
      viral pneumonia present. After this news our son got progressivly
      worse by the hour.

      By Saturday, Kaden's lungs were about 80 percent full of fluid and
      the bi-pap that they had him on 24/7 was doing most of his breathing
      for him. It seemed that his days were the toughest on his little
      body but in the evenings, Kaden would wake up for about 2 hours and
      look at daddy and me, watch a little of his favourite cartoons on
      Treehouse then fall back asleep..

      Tuesday morning the resident called us in to see another x-ray and
      by this point his lungs were about 95 % full and it was explained to
      us that if we removed the bi-pap he would surely pass. We continued
      with all of his treatments to see if he could improve as the doc
      said we will give him every chance we can..

      Kaden was administered Lasicks (sp) as he was not peeing. With this
      drug his body would force him to pee, te idea being to clear some of
      this fluid from the chest area. Shortly after midnight, now
      Wednesday the 13th the RT's came in and told us that Kaden's cap gas
      came back as 200. She explained that for Kaden's age and weight he
      should have only been about 40 points. She said that she has never
      in her career seen anyone with levels that low that wasn't in a
      coma.. So that tells me he faught so hard to stay with us.

      By 1:00 am Kaden opened his eyes and started at his daddy and myself
      until about 3:30 am, not once turning his eyes away. We told him
      that we loved him, that he was a brave boy and that it was ok if he
      was ready to go to a better place. The doc then let us know it was
      time to end this struggle as there was no medical way they could
      help him, he was dying to to the poison from the CO2.

      I got comfy in a chair and we removed Kaden's mask so that we could
      see his face when he died. He just started at me, so helplessly as
      he was so very weak ... Again we told him we loved him and that it
      was ok to go now, that he faught so hard and we understood how tired
      he was. My sweet baby stared into my eyes with such a look it broke
      my heart into pieces, I will never forget it as long as I live ...
      Kaden then took about 15 breaths and he was gone...

      We were so blessed to have him in our lives and we know in our
      hearts that our son touched so many people, there were cuddlers on
      the unit that would come to him night or day, nurses that would
      argue over who got to take care of him that shift etc, and he would
      smile, clap his little chubby hands and dance for anyone who
      approached him. He was such a bright light and I can only hope that
      he is in a better place now ... Never again having to endure the
      invasiveness of a suction, a cap gas, colds, flu's and other
      bugs ...

      After Kaden's passing we asked all who were there to leave the room.
      We changed and bathed our son, brushed his beautiful thick hair and
      got him dressed in his cutest outfit .. nothing fancy though, he
      just wore his "funny Kaden clothes" (smiles) We sat with him for 4
      hours, listening to classical music and telling him all the things
      we had in our hearts. We were also given these two piece ceramic
      hearts from the girls on the unit. We tied each smaller piece to one
      of Kaden's wrists and kept the other two for ourselves.

      Kaden is to be cremeated within the next two to three days and the
      service will follow within a week or two depending on how we are
      feeling and what has been arranged so far.

      Thank you all again for your support over the past year or so and
      please if you can, take a minute to say a prayer for Kaden who was
      so couragous and faught so very hard to stay with us ..

      Will write more when I have had some time ..



      Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

    • angela huss
      Sheallyn & family, My sympathies are with you and your family during this difficult time. Kaden is now playing with my son Patrick, I lost him 3 yrs. ago to a
      Message 2 of 22 , Feb 13, 2008
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        Sheallyn & family,
         
        My sympathies are with you and your family during this difficult time. Kaden is now playing with my son Patrick, I lost him 3 yrs. ago to a similar situation; he also had MTM. If you or anyone else need to talk I am here.
         


        Krista DeVore <devorekrista@...> wrote:
        Hello,
        My family and I am terribly sorry about your loss. Kaden was a blessing. We will keep you in our prayers.
        God bless,
        The DeVores

        Sheallyn <sheallyn73@yahoo. ca> wrote:
        Hi all,

        As you all know, our sweet baby boy Kaden had come down with a para
        flu close to two weeks ago. On Thursday, Feb 7th, we did an x-ray
        which confirmed Kaden's lung had collapsed and that there was a
        viral pneumonia present. After this news our son got progressivly
        worse by the hour.

        By Saturday, Kaden's lungs were about 80 percent full of fluid and
        the bi-pap that they had him on 24/7 was doing most of his breathing
        for him. It seemed that his days were the toughest on his little
        body but in the evenings, Kaden would wake up for about 2 hours and
        look at daddy and me, watch a little of his favourite cartoons on
        Treehouse then fall back asleep..

        Tuesday morning the resident called us in to see another x-ray and
        by this point his lungs were about 95 % full and it was explained to
        us that if we removed the bi-pap he would surely pass. We continued
        with all of his treatments to see if he could improve as the doc
        said we will give him every chance we can..

        Kaden was administered Lasicks (sp) as he was not peeing. With this
        drug his body would force him to pee, te idea being to clear some of
        this fluid from the chest area. Shortly after midnight, now
        Wednesday the 13th the RT's came in and told us that Kaden's cap gas
        came back as 200. She explained that for Kaden's age and weight he
        should have only been about 40 points. She said that she has never
        in her career seen anyone with levels that low that wasn't in a
        coma.. So that tells me he faught so hard to stay with us.

        By 1:00 am Kaden opened his eyes and started at his daddy and myself
        until about 3:30 am, not once turning his eyes away. We told him
        that we loved him, that he was a brave boy and that it was ok if he
        was ready to go to a better place. The doc then let us know it was
        time to end this struggle as there was no medical way they could
        help him, he was dying to to the poison from the CO2.

        I got comfy in a chair and we removed Kaden's mask so that we could
        see his face when he died. He just started at me, so helplessly as
        he was so very weak ... Again we told him we loved him and that it
        was ok to go now, that he faught so hard and we understood how tired
        he was. My sweet baby stared into my eyes with such a look it broke
        my heart into pieces, I will never forget it as long as I live ...
        Kaden then took about 15 breaths and he was gone...

        We were so blessed to have him in our lives and we know in our
        hearts that our son touched so many people, there were cuddlers on
        the unit that would come to him night or day, nurses that would
        argue over who got to take care of him that shift etc, and he would
        smile, clap his little chubby hands and dance for anyone who
        approached him. He was such a bright light and I can only hope that
        he is in a better place now ... Never again having to endure the
        invasiveness of a suction, a cap gas, colds, flu's and other
        bugs ...

        After Kaden's passing we asked all who were there to leave the room.
        We changed and bathed our son, brushed his beautiful thick hair and
        got him dressed in his cutest outfit .. nothing fancy though, he
        just wore his "funny Kaden clothes" (smiles) We sat with him for 4
        hours, listening to classical music and telling him all the things
        we had in our hearts. We were also given these two piece ceramic
        hearts from the girls on the unit. We tied each smaller piece to one
        of Kaden's wrists and kept the other two for ourselves.

        Kaden is to be cremeated within the next two to three days and the
        service will follow within a week or two depending on how we are
        feeling and what has been arranged so far.

        Thank you all again for your support over the past year or so and
        please if you can, take a minute to say a prayer for Kaden who was
        so couragous and faught so very hard to stay with us ..

        Will write more when I have had some time ..



        Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.



        Sincerely,
         
        Angie
        ^j^ Patrick ^j^ 26 weeks 1lb. 14oz. 
        Danielle 35 weeks 5 lbs. 9 oz. - now 5 yrs.
        Cherisse 35 wks. 6 lbs. 2.7 oz. - now 4 yrs.
         
         
        ^.  .^
        > T  <
         
         


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      • Elizabeth Peil
        I am so sorry to hear of Kaden s passing. My heart goes out to you and your family. I can t stop the tears from falling thinking about what you must be going
        Message 3 of 22 , Feb 13, 2008
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          I am so sorry to hear of Kaden's passing.  My heart goes out to you and your family.  I can't stop the tears from falling thinking about what you must be going through.  I wish there was something I could say to ease the pain, but I know that there are no words.  All I think is that his little body is at peace now.  He can run and jump and play with all the other little boys who were waiting for him.  All our love, thoughts and prayers are with you. 
           
          Take care.
          Liz


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        • Dana
          Sheallyn, I am so very, very sorry for the loss of your sweet, adorable little boy, Kaden. I can only imagine how you must be hurting right now and I wish that
          Message 4 of 22 , Feb 13, 2008
          • 0 Attachment
            Sheallyn, I am so very, very sorry for the loss of your sweet,
            adorable little boy, Kaden. I can only imagine how you must be
            hurting right now and I wish that their were something that I could
            say to help ease your pain. I will pray that God give you the
            strength to get through this difficult time. God Bless you and your
            angel Kaden.

            ((((Hugs)))) Dana

            --- In Myotubular_Myopathy@yahoogroups.com, "Sheallyn"
            <sheallyn73@...> wrote:
            >
            > Hi all,
            >
            > As you all know, our sweet baby boy Kaden had come down with a para
            > flu close to two weeks ago. On Thursday, Feb 7th, we did an x-ray
            > which confirmed Kaden's lung had collapsed and that there was a
            > viral pneumonia present. After this news our son got progressivly
            > worse by the hour.
            >
            > By Saturday, Kaden's lungs were about 80 percent full of fluid and
            > the bi-pap that they had him on 24/7 was doing most of his
            breathing
            > for him. It seemed that his days were the toughest on his little
            > body but in the evenings, Kaden would wake up for about 2 hours and
            > look at daddy and me, watch a little of his favourite cartoons on
            > Treehouse then fall back asleep..
            >
            > Tuesday morning the resident called us in to see another x-ray and
            > by this point his lungs were about 95 % full and it was explained
            to
            > us that if we removed the bi-pap he would surely pass. We continued
            > with all of his treatments to see if he could improve as the doc
            > said we will give him every chance we can..
            >
            > Kaden was administered Lasicks (sp) as he was not peeing. With this
            > drug his body would force him to pee, te idea being to clear some
            of
            > this fluid from the chest area. Shortly after midnight, now
            > Wednesday the 13th the RT's came in and told us that Kaden's cap
            gas
            > came back as 200. She explained that for Kaden's age and weight he
            > should have only been about 40 points. She said that she has never
            > in her career seen anyone with levels that low that wasn't in a
            > coma.. So that tells me he faught so hard to stay with us.
            >
            > By 1:00 am Kaden opened his eyes and started at his daddy and
            myself
            > until about 3:30 am, not once turning his eyes away. We told him
            > that we loved him, that he was a brave boy and that it was ok if he
            > was ready to go to a better place. The doc then let us know it was
            > time to end this struggle as there was no medical way they could
            > help him, he was dying to to the poison from the CO2.
            >
            > I got comfy in a chair and we removed Kaden's mask so that we could
            > see his face when he died. He just started at me, so helplessly as
            > he was so very weak ... Again we told him we loved him and that it
            > was ok to go now, that he faught so hard and we understood how
            tired
            > he was. My sweet baby stared into my eyes with such a look it broke
            > my heart into pieces, I will never forget it as long as I live ...
            > Kaden then took about 15 breaths and he was gone...
            >
            >
            > We were so blessed to have him in our lives and we know in our
            > hearts that our son touched so many people, there were cuddlers on
            > the unit that would come to him night or day, nurses that would
            > argue over who got to take care of him that shift etc, and he would
            > smile, clap his little chubby hands and dance for anyone who
            > approached him. He was such a bright light and I can only hope that
            > he is in a better place now ... Never again having to endure the
            > invasiveness of a suction, a cap gas, colds, flu's and other
            > bugs ...
            >
            > After Kaden's passing we asked all who were there to leave the
            room.
            > We changed and bathed our son, brushed his beautiful thick hair and
            > got him dressed in his cutest outfit .. nothing fancy though, he
            > just wore his "funny Kaden clothes" (smiles) We sat with him for 4
            > hours, listening to classical music and telling him all the things
            > we had in our hearts. We were also given these two piece ceramic
            > hearts from the girls on the unit. We tied each smaller piece to
            one
            > of Kaden's wrists and kept the other two for ourselves.
            >
            > Kaden is to be cremeated within the next two to three days and the
            > service will follow within a week or two depending on how we are
            > feeling and what has been arranged so far.
            >
            > Thank you all again for your support over the past year or so and
            > please if you can, take a minute to say a prayer for Kaden who was
            > so couragous and faught so very hard to stay with us ..
            >
            > Will write more when I have had some time ..
            >
          • debbie mccluskey
            Yall are in our prayers and if you need anything, do not hesitate to call 256-378-0440 and I will be here for you. Love Howard and Debbie Sheallyn
            Message 5 of 22 , Feb 13, 2008
            • 0 Attachment
              Yall are in our prayers and if you need anything, do not hesitate to call 256-378-0440 and I will be here for you. 
              Love Howard and Debbie

              Sheallyn <sheallyn73@...> wrote:
              Hi all,

              As you all know, our sweet baby boy Kaden had come down with a para
              flu close to two weeks ago. On Thursday, Feb 7th, we did an x-ray
              which confirmed Kaden's lung had collapsed and that there was a
              viral pneumonia present. After this news our son got progressivly
              worse by the hour.

              By Saturday, Kaden's lungs were about 80 percent full of fluid and
              the bi-pap that they had him on 24/7 was doing most of his breathing
              for him. It seemed that his days were the toughest on his little
              body but in the evenings, Kaden would wake up for about 2 hours and
              look at daddy and me, watch a little of his favourite cartoons on
              Treehouse then fall back asleep..

              Tuesday morning the resident called us in to see another x-ray and
              by this point his lungs were about 95 % full and it was explained to
              us that if we removed the bi-pap he would surely pass. We continued
              with all of his treatments to see if he could improve as the doc
              said we will give him every chance we can..

              Kaden was administered Lasicks (sp) as he was not peeing. With this
              drug his body would force him to pee, te idea being to clear some of
              this fluid from the chest area. Shortly after midnight, now
              Wednesday the 13th the RT's came in and told us that Kaden's cap gas
              came back as 200. She explained that for Kaden's age and weight he
              should have only been about 40 points. She said that she has never
              in her career seen anyone with levels that low that wasn't in a
              coma.. So that tells me he faught so hard to stay with us.

              By 1:00 am Kaden opened his eyes and started at his daddy and myself
              until about 3:30 am, not once turning his eyes away. We told him
              that we loved him, that he was a brave boy and that it was ok if he
              was ready to go to a better place. The doc then let us know it was
              time to end this struggle as there was no medical way they could
              help him, he was dying to to the poison from the CO2.

              I got comfy in a chair and we removed Kaden's mask so that we could
              see his face when he died. He just started at me, so helplessly as
              he was so very weak ... Again we told him we loved him and that it
              was ok to go now, that he faught so hard and we understood how tired
              he was. My sweet baby stared into my eyes with such a look it broke
              my heart into pieces, I will never forget it as long as I live ...
              Kaden then took about 15 breaths and he was gone...

              We were so blessed to have him in our lives and we know in our
              hearts that our son touched so many people, there were cuddlers on
              the unit that would come to him night or day, nurses that would
              argue over who got to take care of him that shift etc, and he would
              smile, clap his little chubby hands and dance for anyone who
              approached him. He was such a bright light and I can only hope that
              he is in a better place now ... Never again having to endure the
              invasiveness of a suction, a cap gas, colds, flu's and other
              bugs ...

              After Kaden's passing we asked all who were there to leave the room.
              We changed and bathed our son, brushed his beautiful thick hair and
              got him dressed in his cutest outfit .. nothing fancy though, he
              just wore his "funny Kaden clothes" (smiles) We sat with him for 4
              hours, listening to classical music and telling him all the things
              we had in our hearts. We were also given these two piece ceramic
              hearts from the girls on the unit. We tied each smaller piece to one
              of Kaden's wrists and kept the other two for ourselves.

              Kaden is to be cremeated within the next two to three days and the
              service will follow within a week or two depending on how we are
              feeling and what has been arranged so far.

              Thank you all again for your support over the past year or so and
              please if you can, take a minute to say a prayer for Kaden who was
              so couragous and faught so very hard to stay with us ..

              Will write more when I have had some time ..



              Looking for last minute shopping deals? Find them fast with Yahoo! Search.

            • TONI ABRAM
              Sheallyn I am so so sorry to read this today. I wish there was something I could do to make things better - please know I am thinking about you at this time.
              Message 6 of 22 , Feb 13, 2008
              • 0 Attachment
                Sheallyn
                 
                I am so so sorry to read this today.
                 
                I wish there was something I could do to make things better - please know I am thinking about you at this time.
                 
                 
                Toni xx
                 
                 

                 



                ----


                Sheallyn <sheallyn73@yahoo. ca> wrote:
                Hi all,

                As you all know, our sweet baby boy Kaden had come down with a para
                flu close to two weeks ago. On Thursday, Feb 7th, we did an x-ray
                which confirmed Kaden's lung had collapsed and that there was a
                viral pneumonia present. After this news our son got progressivly
                worse by the hour.

                By Saturday, Kaden's lungs were about 80 percent full of fluid and
                the bi-pap that they had him on 24/7 was doing most of his breathing
                for him. It seemed that his days were the toughest on his little
                body but in the evenings, Kaden would wake up for about 2 hours and
                look at daddy and me, watch a little of his favourite cartoons on
                Treehouse then fall back asleep..

                Tuesday morning the resident called us in to see another x-ray and
                by this point his lungs were about 95 % full and it was explained to
                us that if we removed the bi-pap he would surely pass. We continued
                with all of his treatments to see if he could improve as the doc
                said we will give him every chance we can..

                Kaden was administered Lasicks (sp) as he was not peeing. With this
                drug his body would force him to pee, te idea being to clear some of
                this fluid from the chest area. Shortly after midnight, now
                Wednesday the 13th the RT's came in and told us that Kaden's cap gas
                came back as 200. She explained that for Kaden's age and weight he
                should have only been about 40 points. She said that she has never
                in her career seen anyone with levels that low that wasn't in a
                coma.. So that tells me he faught so hard to stay with us.

                By 1:00 am Kaden opened his eyes and started at his daddy and myself
                until about 3:30 am, not once turning his eyes away. We told him
                that we loved him, that he was a brave boy and that it was ok if he
                was ready to go to a better place. The doc then let us know it was
                time to end this struggle as there was no medical way they could
                help him, he was dying to to the poison from the CO2.

                I got comfy in a chair and we removed Kaden's mask so that we could
                see his face when he died. He just started at me, so helplessly as
                he was so very weak ... Again we told him we loved him and that it
                was ok to go now, that he faught so hard and we understood how tired
                he was. My sweet baby stared into my eyes with such a look it broke
                my heart into pieces, I will never forget it as long as I live ...
                Kaden then took about 15 breaths and he was gone...

                We were so blessed to have him in our lives and we know in our
                hearts that our son touched so many people, there were cuddlers on
                the unit that would come to him night or day, nurses that would
                argue over who got to take care of him that shift etc, and he would
                smile, clap his little chubby hands and dance for anyone who
                approached him. He was such a bright light and I can only hope that
                he is in a better place now ... Never again having to endure the
                invasiveness of a suction, a cap gas, colds, flu's and other
                bugs ...

                After Kaden's passing we asked all who were there to leave the room.
                We changed and bathed our son, brushed his beautiful thick hair and
                got him dressed in his cutest outfit .. nothing fancy though, he
                just wore his "funny Kaden clothes" (smiles) We sat with him for 4
                hours, listening to classical music and telling him all the things
                we had in our hearts. We were also given these two piece ceramic
                hearts from the girls on the unit. We tied each smaller piece to one
                of Kaden's wrists and kept the other two for ourselves.

                Kaden is to be cremeated within the next two to three days and the
                service will follow within a week or two depending on how we are
                feeling and what has been arranged so far.

                Thank you all again for your support over the past year or so and
                please if you can, take a minute to say a prayer for Kaden who was
                so couragous and faught so very hard to stay with us ..

                Will write more when I have had some time ..



                Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.


              • Sally Eubanks
                my heart goes out to you-- sally ... ____________________________________________________________________________________ Looking for last minute shopping
                Message 7 of 22 , Feb 13, 2008
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                  my heart goes out to you--

                  sally
                  --- Sheallyn <sheallyn73@...> wrote:

                  > Hi all,
                  >
                  > As you all know, our sweet baby boy Kaden had come
                  > down with a para
                  > flu close to two weeks ago. On Thursday, Feb 7th, we
                  > did an x-ray
                  > which confirmed Kaden's lung had collapsed and that
                  > there was a
                  > viral pneumonia present. After this news our son got
                  > progressivly
                  > worse by the hour.
                  >
                  > By Saturday, Kaden's lungs were about 80 percent
                  > full of fluid and
                  > the bi-pap that they had him on 24/7 was doing most
                  > of his breathing
                  > for him. It seemed that his days were the toughest
                  > on his little
                  > body but in the evenings, Kaden would wake up for
                  > about 2 hours and
                  > look at daddy and me, watch a little of his
                  > favourite cartoons on
                  > Treehouse then fall back asleep..
                  >
                  > Tuesday morning the resident called us in to see
                  > another x-ray and
                  > by this point his lungs were about 95 % full and it
                  > was explained to
                  > us that if we removed the bi-pap he would surely
                  > pass. We continued
                  > with all of his treatments to see if he could
                  > improve as the doc
                  > said we will give him every chance we can..
                  >
                  > Kaden was administered Lasicks (sp) as he was not
                  > peeing. With this
                  > drug his body would force him to pee, te idea being
                  > to clear some of
                  > this fluid from the chest area. Shortly after
                  > midnight, now
                  > Wednesday the 13th the RT's came in and told us that
                  > Kaden's cap gas
                  > came back as 200. She explained that for Kaden's age
                  > and weight he
                  > should have only been about 40 points. She said that
                  > she has never
                  > in her career seen anyone with levels that low that
                  > wasn't in a
                  > coma.. So that tells me he faught so hard to stay
                  > with us.
                  >
                  > By 1:00 am Kaden opened his eyes and started at his
                  > daddy and myself
                  > until about 3:30 am, not once turning his eyes away.
                  > We told him
                  > that we loved him, that he was a brave boy and that
                  > it was ok if he
                  > was ready to go to a better place. The doc then let
                  > us know it was
                  > time to end this struggle as there was no medical
                  > way they could
                  > help him, he was dying to to the poison from the
                  > CO2.
                  >
                  > I got comfy in a chair and we removed Kaden's mask
                  > so that we could
                  > see his face when he died. He just started at me, so
                  > helplessly as
                  > he was so very weak ... Again we told him we loved
                  > him and that it
                  > was ok to go now, that he faught so hard and we
                  > understood how tired
                  > he was. My sweet baby stared into my eyes with such
                  > a look it broke
                  > my heart into pieces, I will never forget it as long
                  > as I live ...
                  > Kaden then took about 15 breaths and he was gone...
                  >
                  >
                  > We were so blessed to have him in our lives and we
                  > know in our
                  > hearts that our son touched so many people, there
                  > were cuddlers on
                  > the unit that would come to him night or day, nurses
                  > that would
                  > argue over who got to take care of him that shift
                  > etc, and he would
                  > smile, clap his little chubby hands and dance for
                  > anyone who
                  > approached him. He was such a bright light and I can
                  > only hope that
                  > he is in a better place now ... Never again having
                  > to endure the
                  > invasiveness of a suction, a cap gas, colds, flu's
                  > and other
                  > bugs ...
                  >
                  > After Kaden's passing we asked all who were there to
                  > leave the room.
                  > We changed and bathed our son, brushed his beautiful
                  > thick hair and
                  > got him dressed in his cutest outfit .. nothing
                  > fancy though, he
                  > just wore his "funny Kaden clothes" (smiles) We sat
                  > with him for 4
                  > hours, listening to classical music and telling him
                  > all the things
                  > we had in our hearts. We were also given these two
                  > piece ceramic
                  > hearts from the girls on the unit. We tied each
                  > smaller piece to one
                  > of Kaden's wrists and kept the other two for
                  > ourselves.
                  >
                  > Kaden is to be cremeated within the next two to
                  > three days and the
                  > service will follow within a week or two depending
                  > on how we are
                  > feeling and what has been arranged so far.
                  >
                  > Thank you all again for your support over the past
                  > year or so and
                  > please if you can, take a minute to say a prayer for
                  > Kaden who was
                  > so couragous and faught so very hard to stay with us
                  > ..
                  >
                  > Will write more when I have had some time ..
                  >
                  >



                  ____________________________________________________________________________________
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                • wendyhughes@btconnect.com
                  Dear Sheallyn and family, We are desperately sorry to hear about the sad loss of your beautiful little baby boy, Kaden. From your mailings, it s so apparent
                  Message 8 of 22 , Feb 14, 2008
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                  • Anne Lennox
                    Dear Sheallyn Our heart goes out to you and your family - I m so sorry that you have to go through this and lose your lovely boy. We ll be thinking of you in
                    Message 9 of 22 , Feb 14, 2008
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                      Dear Sheallyn
                      Our heart goes out to you and your family - I'm so sorry that you have to go through this and lose your lovely boy.  We'll be thinking of you in the days and weeks to come.
                      With much love
                      Anne, Andrew and Sophie Lennox
                      ---and I hope our Tom is waiting up there somewhere for a good old troublesome riotous boys game with little Kaden! 
                       
                       


                      From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Sheallyn
                      Sent: 13 February 2008 22:56
                      To: Myotubular_Myopathy@yahoogroups.com
                      Subject: [Myotubular_Myopathy] Kaden has passed away ...

                      Hi all,

                      As you all know, our sweet baby boy Kaden had come down with a para
                      flu close to two weeks ago. On Thursday, Feb 7th, we did an x-ray
                      which confirmed Kaden's lung had collapsed and that there was a
                      viral pneumonia present. After this news our son got progressivly
                      worse by the hour.

                      By Saturday, Kaden's lungs were about 80 percent full of fluid and
                      the bi-pap that they had him on 24/7 was doing most of his breathing
                      for him. It seemed that his days were the toughest on his little
                      body but in the evenings, Kaden would wake up for about 2 hours and
                      look at daddy and me, watch a little of his favourite cartoons on
                      Treehouse then fall back asleep..

                      Tuesday morning the resident called us in to see another x-ray and
                      by this point his lungs were about 95 % full and it was explained to
                      us that if we removed the bi-pap he would surely pass. We continued
                      with all of his treatments to see if he could improve as the doc
                      said we will give him every chance we can..

                      Kaden was administered Lasicks (sp) as he was not peeing. With this
                      drug his body would force him to pee, te idea being to clear some of
                      this fluid from the chest area. Shortly after midnight, now
                      Wednesday the 13th the RT's came in and told us that Kaden's cap gas
                      came back as 200. She explained that for Kaden's age and weight he
                      should have only been about 40 points. She said that she has never
                      in her career seen anyone with levels that low that wasn't in a
                      coma.. So that tells me he faught so hard to stay with us.

                      By 1:00 am Kaden opened his eyes and started at his daddy and myself
                      until about 3:30 am, not once turning his eyes away. We told him
                      that we loved him, that he was a brave boy and that it was ok if he
                      was ready to go to a better place. The doc then let us know it was
                      time to end this struggle as there was no medical way they could
                      help him, he was dying to to the poison from the CO2.

                      I got comfy in a chair and we removed Kaden's mask so that we could
                      see his face when he died. He just started at me, so helplessly as
                      he was so very weak ... Again we told him we loved him and that it
                      was ok to go now, that he faught so hard and we understood how tired
                      he was. My sweet baby stared into my eyes with such a look it broke
                      my heart into pieces, I will never forget it as long as I live ...
                      Kaden then took about 15 breaths and he was gone...

                      We were so blessed to have him in our lives and we know in our
                      hearts that our son touched so many people, there were cuddlers on
                      the unit that would come to him night or day, nurses that would
                      argue over who got to take care of him that shift etc, and he would
                      smile, clap his little chubby hands and dance for anyone who
                      approached him. He was such a bright light and I can only hope that
                      he is in a better place now ... Never again having to endure the
                      invasiveness of a suction, a cap gas, colds, flu's and other
                      bugs ...

                      After Kaden's passing we asked all who were there to leave the room.
                      We changed and bathed our son, brushed his beautiful thick hair and
                      got him dressed in his cutest outfit .. nothing fancy though, he
                      just wore his "funny Kaden clothes" (smiles) We sat with him for 4
                      hours, listening to classical music and telling him all the things
                      we had in our hearts. We were also given these two piece ceramic
                      hearts from the girls on the unit. We tied each smaller piece to one
                      of Kaden's wrists and kept the other two for ourselves.

                      Kaden is to be cremeated within the next two to three days and the
                      service will follow within a week or two depending on how we are
                      feeling and what has been arranged so far.

                      Thank you all again for your support over the past year or so and
                      please if you can, take a minute to say a prayer for Kaden who was
                      so couragous and faught so very hard to stay with us ..

                      Will write more when I have had some time ..

                    • Kimberly Kowalski
                      i send out my heart to you and your family right now as i know how terrible this is. we will be keeping you all in our thoughts and prayers wishing you
                      Message 10 of 22 , Feb 14, 2008
                      • 0 Attachment
                        i send out my heart to you and your family right now
                        as i know how terrible this is. we will be keeping
                        you all in our thoughts and prayers wishing you
                        comfort, rest and peace in the coming months.
                        kim
                        --- WANDA SANTORY <bubblelips8151972@...> wrote:

                        > I feel for you since I went though my son's death
                        > too. These children are so special. Kaden sounded
                        > just like my Justin. All his nurses fought over him
                        > too because of his personality. There are no words
                        > to make it feel better. As I read your story, I just
                        > cried. I am so very sorry. If you need anything
                        > please call me at 845-268-0070. My prayers are with
                        > you.
                        >
                        > Wanda.
                        >
                        >
                        > ----- Original Message ----
                        > From: Sheallyn <sheallyn73@...>
                        > To: Myotubular_Myopathy@yahoogroups.com
                        > Sent: Wednesday, February 13, 2008 5:55:34 PM
                        > Subject: [Myotubular_Myopathy] Kaden has passed away
                        > ...
                        >
                        > Hi all,
                        >
                        > As you all know, our sweet baby boy Kaden had come
                        > down with a para
                        > flu close to two weeks ago. On Thursday, Feb 7th, we
                        > did an x-ray
                        > which confirmed Kaden's lung had collapsed and that
                        > there was a
                        > viral pneumonia present. After this news our son got
                        > progressivly
                        > worse by the hour.
                        >
                        > By Saturday, Kaden's lungs were about 80 percent
                        > full of fluid and
                        > the bi-pap that they had him on 24/7 was doing most
                        > of his breathing
                        > for him. It seemed that his days were the toughest
                        > on his little
                        > body but in the evenings, Kaden would wake up for
                        > about 2 hours and
                        > look at daddy and me, watch a little of his
                        > favourite cartoons on
                        > Treehouse then fall back asleep..
                        >
                        > Tuesday morning the resident called us in to see
                        > another x-ray and
                        > by this point his lungs were about 95 % full and it
                        > was explained to
                        > us that if we removed the bi-pap he would surely
                        > pass. We continued
                        > with all of his treatments to see if he could
                        > improve as the doc
                        > said we will give him every chance we can..
                        >
                        > Kaden was administered Lasicks (sp) as he was not
                        > peeing. With this
                        > drug his body would force him to pee, te idea being
                        > to clear some of
                        > this fluid from the chest area. Shortly after
                        > midnight, now
                        > Wednesday the 13th the RT's came in and told us that
                        > Kaden's cap gas
                        > came back as 200. She explained that for Kaden's age
                        > and weight he
                        > should have only been about 40 points. She said that
                        > she has never
                        > in her career seen anyone with levels that low that
                        > wasn't in a
                        > coma.. So that tells me he faught so hard to stay
                        > with us.
                        >
                        > By 1:00 am Kaden opened his eyes and started at his
                        > daddy and myself
                        > until about 3:30 am, not once turning his eyes away.
                        > We told him
                        > that we loved him, that he was a brave boy and that
                        > it was ok if he
                        > was ready to go to a better place. The doc then let
                        > us know it was
                        > time to end this struggle as there was no medical
                        > way they could
                        > help him, he was dying to to the poison from the
                        > CO2.
                        >
                        > I got comfy in a chair and we removed Kaden's mask
                        > so that we could
                        > see his face when he died. He just started at me, so
                        > helplessly as
                        > he was so very weak ... Again we told him we loved
                        > him and that it
                        > was ok to go now, that he faught so hard and we
                        > understood how tired
                        > he was. My sweet baby stared into my eyes with such
                        > a look it broke
                        > my heart into pieces, I will never forget it as long
                        > as I live ...
                        > Kaden then took about 15 breaths and he was gone...
                        >
                        > We were so blessed to have him in our lives and we
                        > know in our
                        > hearts that our son touched so many people, there
                        > were cuddlers on
                        > the unit that would come to him night or day, nurses
                        > that would
                        > argue over who got to take care of him that shift
                        > etc, and he would
                        > smile, clap his little chubby hands and dance for
                        > anyone who
                        > approached him. He was such a bright light and I can
                        > only hope that
                        > he is in a better place now ... Never again having
                        > to endure the
                        > invasiveness of a suction, a cap gas, colds, flu's
                        > and other
                        > bugs ...
                        >
                        > After Kaden's passing we asked all who were there to
                        > leave the room.
                        > We changed and bathed our son, brushed his beautiful
                        > thick hair and
                        > got him dressed in his cutest outfit .. nothing
                        > fancy though, he
                        > just wore his "funny Kaden clothes" (smiles) We sat
                        > with him for 4
                        > hours, listening to classical music and telling him
                        > all the things
                        > we had in our hearts. We were also given these two
                        > piece ceramic
                        > hearts from the girls on the unit. We tied each
                        > smaller piece to one
                        > of Kaden's wrists and kept the other two for
                        > ourselves.
                        >
                        > Kaden is to be cremeated within the next two to
                        > three days and the
                        > service will follow within a week or two depending
                        > on how we are
                        > feeling and what has been arranged so far.
                        >
                        > Thank you all again for your support over the past
                        > year or so and
                        > please if you can, take a minute to say a prayer for
                        > Kaden who was
                        > so couragous and faught so very hard to stay with us
                        > ..
                        >
                        > Will write more when I have had some time ..
                        >
                        >
                        >
                        >
                        >
                        >
                        >
                        ____________________________________________________________________________________
                        > Be a better friend, newshound, and
                        > know-it-all with Yahoo! Mobile. Try it now.
                        >
                        http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
                        >
                        >



                        ____________________________________________________________________________________
                        Never miss a thing. Make Yahoo your home page.
                        http://www.yahoo.com/r/hs
                      • Pat or Sarah
                        I am so sorry to hear about Kaden passing away. I wish him peace. Sarah
                        Message 11 of 22 , Feb 14, 2008
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                          I am so sorry to hear about Kaden passing away.  I wish him peace.  Sarah
                        • IsIs Dias Pinto
                          Hi, I dont have words to express what u r feeling and my heart goes out to you. My boy is in the hospital and I can only imagine when this day will come. But
                          Message 12 of 22 , Feb 14, 2008
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                            Hi, I dont have words to express what u r feeling and my heart goes out to you. My boy is in the hospital and I can only imagine when this day will  come.
                             But I pray u find comfort and some peace in the following days.
                            I am sure that u and all of us do and did what we could, we gave our everything for these children and I know they know that too and gives me much peace to know they will, one day, complete, free of  all that they had to go through to e with us. And that is the great gift from the Lord above and we have to wait to meet them again and on that day they will be whole and free and jumping and playing and smiling. Free from machines and poking and all that boring and graphic stuff.
                            In the mean time, We stay here with the sorrow and missing them but they are in peace now.
                            I will keep u in my prayers. I cant get your story out of my mind.
                            Your are a fighter and be sure Kaden knows and thanks and loves u for that.
                            Much love, strenght and peace from all the way from Rio de Janeiro.




                            > Hi all,
                            >
                            > As you all know, our sweet baby boy Kaden had come
                            > down with a para
                            > flu close to two weeks ago. On Thursday, Feb 7th, we
                            > did an x-ray
                            > which confirmed Kaden's lung had collapsed and that
                            > there was a
                            > viral pneumonia present. After this news our son got
                            > progressivly
                            > worse by the hour.
                            >
                            > By Saturday, Kaden's lungs were about 80 percent
                            > full of fluid and
                            > the bi-pap that they had him on 24/7 was doing most
                            > of his breathing
                            > for him. It seemed that his days were the toughest
                            > on his little
                            > body but in the evenings, Kaden would wake up for
                            > about 2 hours and
                            > look at daddy and me, watch a little of his
                            > favourite cartoons on
                            > Treehouse then fall back asleep..
                            >
                            > Tuesday morning the resident called us in to see
                            > another x-ray and
                            > by this point his lungs were about 95 % full and it
                            > was explained to
                            > us that if we removed the bi-pap he would surely
                            > pass. We continued
                            > with all of his treatments to see if he could
                            > improve as the doc
                            > said we will give him every chance we can..
                            >
                            > Kaden was administered Lasicks (sp) as he was not
                            > peeing. With this
                            > drug his body would force him to pee, te idea being
                            > to clear some of
                            > this fluid from the chest area. Shortly after
                            > midnight, now
                            > Wednesday the 13th the RT's came in and told us that
                            > Kaden's cap gas
                            > came back as 200. She explained that for Kaden's age
                            > and weight he
                            > should have only been about 40 points. She said that
                            > she has never
                            > in her career seen anyone with levels that low that
                            > wasn't in a
                            > coma.. So that tells me he faught so hard to stay
                            > with us.
                            >
                            > By 1:00 am Kaden opened his eyes and started at his
                            > daddy and myself
                            > until about 3:30 am, not once turning his eyes away.
                            > We told him
                            > that we loved him, that he was a brave boy and that
                            > it was ok if he
                            > was ready to go to a better place. The doc then let
                            > us know it was
                            > time to end this struggle as there was no medical
                            > way they could
                            > help him, he was dying to to the poison from the
                            > CO2.
                            >
                            > I got comfy in a chair and we removed Kaden's mask
                            > so that we could
                            > see his face when he died. He just started at me, so
                            > helplessly as
                            > he was so very weak ... Again we told him we loved
                            > him and that it
                            > was ok to go now, that he faught so hard and we
                            > understood how tired
                            > he was. My sweet baby stared into my eyes with such
                            > a look it broke
                            > my heart into pieces, I will never forget it as long
                            > as I live ...
                            > Kaden then took about 15 breaths and he was gone...
                            >
                            > We were so blessed to have him in our lives and we
                            > know in our
                            > hearts that our son touched so many people, there
                            > were cuddlers on
                            > the unit that would come to him night or day, nurses
                            > that would
                            > argue over who got to take care of him that shift
                            > etc, and he would
                            > smile, clap his little chubby hands and dance for
                            > anyone who
                            > approached him. He was such a bright light and I can
                            > only hope that
                            > he is in a better place now ... Never again having
                            > to endure the
                            > invasiveness of a suction, a cap gas, colds, flu's
                            > and other
                            > bugs ...
                            >
                            > After Kaden's passing we asked all who were there to
                            > leave the room.
                            > We changed and bathed our son, brushed his beautiful
                            > thick hair and
                            > got him dressed in his cutest outfit .. nothing
                            > fancy though, he
                            > just wore his "funny Kaden clothes" (smiles) We sat
                            > with him for 4
                            > hours, listening to classical music and telling him
                            > all the things
                            > we had in our hearts. We were also given these two
                            > piece ceramic
                            > hearts from the girls on the unit. We tied each
                            > smaller piece to one
                            > of Kaden's wrists and kept the other two for
                            > ourselves.
                            >
                            > Kaden is to be cremeated within the next two to
                            > three days and the
                            > service will follow within a week or two depending
                            > on how we are
                            > feeling and what has been arranged so far.
                            >
                            > Thank you all again for your support over the past
                            > year or so and
                            > please if you can, take a minute to say a prayer for
                            > Kaden who was
                            > so couragous and faught so very hard to stay with us
                            > ..
                            >
                            > Will write more when I have had some time ..
                            >
                            >
                            >
                            >
                            >
                            >
                            >
                            ____________ _________ _________ _________ _________ _________ _
                            > Be a better friend, newshound, and
                            > know-it-all with Yahoo! Mobile. Try it now.
                            >
                            http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ
                            >
                            >

                            ____________ _________ _________ _________ _________ _________ _
                            Never miss a thing. Make Yahoo your home page.
                            http://www.yahoo. com/r/hs




                                                                   
                                                Na dúvida, guarda silencio.  Confie. Espere.O mais, Ele fará
                                                       IsIs   Gabriel  HannaH  BlackJack


                            Never miss a thing. Make Yahoo your homepage.

                          • DARLENE MILLER
                            Sheallyn, After reading your post this morning about Kaden s passing, I cryed for hours. I don t really know why, but I thought of this poem I had just read
                            Message 13 of 22 , Feb 14, 2008
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                              Sheallyn,
                               
                              After reading your post this morning about Kaden's passing,
                              I cryed for hours.  I don't really know why, but I thought of
                              this poem I had just read recently and thought I should send
                              it to your family. 
                               
                              IF TOMORROW STARTS WITHOUT ME
                               
                              If tomorrow starts without me,
                              And I'm not there to see,
                              If the sun should rise and find your eyes All filled with tears for me;
                               
                              I wish so much you wouldn’t cry
                              The way you did today,
                              While thinking of the many things,
                              We didn't get to say.
                               
                              I know how much you love me,
                              As much as I love you,
                              And each time that you think of me,
                              I know you'll miss me too.
                               
                              But when tomorrow starts without me,
                              Please try to understand,
                              That an angel came and called my name,
                              And took me by the hand,
                               
                              And said my place was ready,
                              In heaven far above, And that I'd have to leave behind
                              All those I dearly love.
                               
                              But as I turned to walk away,
                              A tear fell from my eye,
                              For all my life, I'd always thought,
                              I didn't want to die.
                               
                              I had so much to live for,
                              So much left yet to do,
                              It seemed almost impossible,
                              That I was leaving you.
                               
                              I thought of all the yesterdays,
                              The good ones and the bad,
                              I thought of all that we shared,
                              And all the fun we had.
                               
                              If I could relive yesterday,
                              Just even for a while,
                              I'd say good-bye and kiss you
                              And maybe see you smile.
                               
                              But this I fully realized,
                              That this could never be,
                              For emptiness and memories,
                              Would take the place of me.
                               
                              And When I thought of worldly things,
                              I might miss some tomorrow,
                              I thought of you, and when I did,
                              My heart was filled with sorrow.
                               
                              But when I walked through heaven's gates,
                              I felt so much at home.
                              When God looked down and smiled at me,
                              From his great golden throne,
                               
                              He said, "This is eternity,
                              And all I've promised you.
                              Today your life on earth is past,
                              But here life starts anew."
                               
                              I promise no tomorrow,
                              But today will always last,
                              And since each day is the same way,
                              There's no longing for the past.
                               
                              So when tomorrow starts without me,
                              Don't think we're far apart,
                              For everytime you thing of me,
                              I'm right here, in your HEART.
                               
                               
                               
                              I know there is not anything we can say or do to make things better
                              but I hope this poem helps you find peace and understanding.  Do
                              know you and your family are in our prayers.
                               
                              Darlene and Kyle Miller
                               
                               
                               
                            • patsarah2006
                              Dear Sheallyn, My heart goes out to you and your family. I keep all of the MTM/CNM children and families in my thoughts and prayers, but now especially you and
                              Message 14 of 22 , Feb 16, 2008
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                                Dear Sheallyn,
                                My heart goes out to you and your family. I keep all of the MTM/CNM
                                children and families in my thoughts and prayers, but now especially
                                you and yours during this sad time. Please know that you have a
                                worldwide network here of families who care and are sending you our
                                support.
                                Love,
                                Pat, in New Jersey
                              • burcu
                                Dear Sheallyn, I have read your post just recently and even though it is a little bit late to offer my condolences to you I just wanted to let you know that my
                                Message 15 of 22 , Feb 18, 2008
                                • 0 Attachment
                                  Dear Sheallyn,
                                  I have read your post just recently and even though it is a little
                                  bit late to offer my condolences to you I just wanted to let you
                                  know that my hearth goes out to you and I can't help my tears when I
                                  think of Kaden and his bravery. I am so sorry for your big loss. My
                                  son is fighting hard with some kind of flu right now and I will keep
                                  Kaden, you and your family in my prayers as well.
                                  Burcu & Ilker

                                  --- In Myotubular_Myopathy@yahoogroups.com, "Sheallyn"
                                  <sheallyn73@...> wrote:
                                  >
                                  > Hi all,
                                  >
                                  > As you all know, our sweet baby boy Kaden had come down with a
                                  para
                                  > flu close to two weeks ago. On Thursday, Feb 7th, we did an x-ray
                                  > which confirmed Kaden's lung had collapsed and that there was a
                                  > viral pneumonia present. After this news our son got progressivly
                                  > worse by the hour.
                                  >
                                  > By Saturday, Kaden's lungs were about 80 percent full of fluid and
                                  > the bi-pap that they had him on 24/7 was doing most of his
                                  breathing
                                  > for him. It seemed that his days were the toughest on his little
                                  > body but in the evenings, Kaden would wake up for about 2 hours
                                  and
                                  > look at daddy and me, watch a little of his favourite cartoons on
                                  > Treehouse then fall back asleep..
                                  >
                                  > Tuesday morning the resident called us in to see another x-ray and
                                  > by this point his lungs were about 95 % full and it was explained
                                  to
                                  > us that if we removed the bi-pap he would surely pass. We
                                  continued
                                  > with all of his treatments to see if he could improve as the doc
                                  > said we will give him every chance we can..
                                  >
                                  > Kaden was administered Lasicks (sp) as he was not peeing. With
                                  this
                                  > drug his body would force him to pee, te idea being to clear some
                                  of
                                  > this fluid from the chest area. Shortly after midnight, now
                                  > Wednesday the 13th the RT's came in and told us that Kaden's cap
                                  gas
                                  > came back as 200. She explained that for Kaden's age and weight he
                                  > should have only been about 40 points. She said that she has never
                                  > in her career seen anyone with levels that low that wasn't in a
                                  > coma.. So that tells me he faught so hard to stay with us.
                                  >
                                  > By 1:00 am Kaden opened his eyes and started at his daddy and
                                  myself
                                  > until about 3:30 am, not once turning his eyes away. We told him
                                  > that we loved him, that he was a brave boy and that it was ok if
                                  he
                                  > was ready to go to a better place. The doc then let us know it was
                                  > time to end this struggle as there was no medical way they could
                                  > help him, he was dying to to the poison from the CO2.
                                  >
                                  > I got comfy in a chair and we removed Kaden's mask so that we
                                  could
                                  > see his face when he died. He just started at me, so helplessly as
                                  > he was so very weak ... Again we told him we loved him and that it
                                  > was ok to go now, that he faught so hard and we understood how
                                  tired
                                  > he was. My sweet baby stared into my eyes with such a look it
                                  broke
                                  > my heart into pieces, I will never forget it as long as I live ...
                                  > Kaden then took about 15 breaths and he was gone...
                                  >
                                  >
                                  > We were so blessed to have him in our lives and we know in our
                                  > hearts that our son touched so many people, there were cuddlers on
                                  > the unit that would come to him night or day, nurses that would
                                  > argue over who got to take care of him that shift etc, and he
                                  would
                                  > smile, clap his little chubby hands and dance for anyone who
                                  > approached him. He was such a bright light and I can only hope
                                  that
                                  > he is in a better place now ... Never again having to endure the
                                  > invasiveness of a suction, a cap gas, colds, flu's and other
                                  > bugs ...
                                  >
                                  > After Kaden's passing we asked all who were there to leave the
                                  room.
                                  > We changed and bathed our son, brushed his beautiful thick hair
                                  and
                                  > got him dressed in his cutest outfit .. nothing fancy though, he
                                  > just wore his "funny Kaden clothes" (smiles) We sat with him for 4
                                  > hours, listening to classical music and telling him all the things
                                  > we had in our hearts. We were also given these two piece ceramic
                                  > hearts from the girls on the unit. We tied each smaller piece to
                                  one
                                  > of Kaden's wrists and kept the other two for ourselves.
                                  >
                                  > Kaden is to be cremeated within the next two to three days and the
                                  > service will follow within a week or two depending on how we are
                                  > feeling and what has been arranged so far.
                                  >
                                  > Thank you all again for your support over the past year or so and
                                  > please if you can, take a minute to say a prayer for Kaden who was
                                  > so couragous and faught so very hard to stay with us ..
                                  >
                                  > Will write more when I have had some time ..
                                  >
                                • Sheallyn
                                  Thank you, and thanks to the rest of you as well .. We had a wake for Kaden on the 20th and it was really nice .. All of Kaden s nurses were there as well as
                                  Message 16 of 22 , Feb 23, 2008
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                                    Thank you, and thanks to the rest of you as well .. We had a wake
                                    for Kaden on the 20th and it was really nice .. All of Kaden's
                                    nurses were there as well as other people that loved Kaden. We
                                    cried, we laughed and as strange as it may seem, I felt good when I
                                    left there. I listened to people tell stories about my son and
                                    watched them smile as they did ..

                                    I truly was blessed with someone very special ..




                                    --- In Myotubular_Myopathy@yahoogroups.com, "burcu" <bpaltura@...>
                                    wrote:
                                    >
                                    > Dear Sheallyn,
                                    > I have read your post just recently and even though it is a little
                                    > bit late to offer my condolences to you I just wanted to let you
                                    > know that my hearth goes out to you and I can't help my tears when
                                    I
                                    > think of Kaden and his bravery. I am so sorry for your big loss.
                                    My
                                    > son is fighting hard with some kind of flu right now and I will
                                    keep
                                    > Kaden, you and your family in my prayers as well.
                                    > Burcu & Ilker
                                    >
                                    > --- In Myotubular_Myopathy@yahoogroups.com, "Sheallyn"
                                    > <sheallyn73@> wrote:
                                    > >
                                    > > Hi all,
                                    > >
                                    > > As you all know, our sweet baby boy Kaden had come down with a
                                    > para
                                    > > flu close to two weeks ago. On Thursday, Feb 7th, we did an x-
                                    ray
                                    > > which confirmed Kaden's lung had collapsed and that there was a
                                    > > viral pneumonia present. After this news our son got
                                    progressivly
                                    > > worse by the hour.
                                    > >
                                    > > By Saturday, Kaden's lungs were about 80 percent full of fluid
                                    and
                                    > > the bi-pap that they had him on 24/7 was doing most of his
                                    > breathing
                                    > > for him. It seemed that his days were the toughest on his little
                                    > > body but in the evenings, Kaden would wake up for about 2 hours
                                    > and
                                    > > look at daddy and me, watch a little of his favourite cartoons
                                    on
                                    > > Treehouse then fall back asleep..
                                    > >
                                    > > Tuesday morning the resident called us in to see another x-ray
                                    and
                                    > > by this point his lungs were about 95 % full and it was
                                    explained
                                    > to
                                    > > us that if we removed the bi-pap he would surely pass. We
                                    > continued
                                    > > with all of his treatments to see if he could improve as the doc
                                    > > said we will give him every chance we can..
                                    > >
                                    > > Kaden was administered Lasicks (sp) as he was not peeing. With
                                    > this
                                    > > drug his body would force him to pee, te idea being to clear
                                    some
                                    > of
                                    > > this fluid from the chest area. Shortly after midnight, now
                                    > > Wednesday the 13th the RT's came in and told us that Kaden's cap
                                    > gas
                                    > > came back as 200. She explained that for Kaden's age and weight
                                    he
                                    > > should have only been about 40 points. She said that she has
                                    never
                                    > > in her career seen anyone with levels that low that wasn't in a
                                    > > coma.. So that tells me he faught so hard to stay with us.
                                    > >
                                    > > By 1:00 am Kaden opened his eyes and started at his daddy and
                                    > myself
                                    > > until about 3:30 am, not once turning his eyes away. We told him
                                    > > that we loved him, that he was a brave boy and that it was ok if
                                    > he
                                    > > was ready to go to a better place. The doc then let us know it
                                    was
                                    > > time to end this struggle as there was no medical way they could
                                    > > help him, he was dying to to the poison from the CO2.
                                    > >
                                    > > I got comfy in a chair and we removed Kaden's mask so that we
                                    > could
                                    > > see his face when he died. He just started at me, so helplessly
                                    as
                                    > > he was so very weak ... Again we told him we loved him and that
                                    it
                                    > > was ok to go now, that he faught so hard and we understood how
                                    > tired
                                    > > he was. My sweet baby stared into my eyes with such a look it
                                    > broke
                                    > > my heart into pieces, I will never forget it as long as I
                                    live ...
                                    > > Kaden then took about 15 breaths and he was gone...
                                    > >
                                    > >
                                    > > We were so blessed to have him in our lives and we know in our
                                    > > hearts that our son touched so many people, there were cuddlers
                                    on
                                    > > the unit that would come to him night or day, nurses that would
                                    > > argue over who got to take care of him that shift etc, and he
                                    > would
                                    > > smile, clap his little chubby hands and dance for anyone who
                                    > > approached him. He was such a bright light and I can only hope
                                    > that
                                    > > he is in a better place now ... Never again having to endure the
                                    > > invasiveness of a suction, a cap gas, colds, flu's and other
                                    > > bugs ...
                                    > >
                                    > > After Kaden's passing we asked all who were there to leave the
                                    > room.
                                    > > We changed and bathed our son, brushed his beautiful thick hair
                                    > and
                                    > > got him dressed in his cutest outfit .. nothing fancy though, he
                                    > > just wore his "funny Kaden clothes" (smiles) We sat with him for
                                    4
                                    > > hours, listening to classical music and telling him all the
                                    things
                                    > > we had in our hearts. We were also given these two piece ceramic
                                    > > hearts from the girls on the unit. We tied each smaller piece to
                                    > one
                                    > > of Kaden's wrists and kept the other two for ourselves.
                                    > >
                                    > > Kaden is to be cremeated within the next two to three days and
                                    the
                                    > > service will follow within a week or two depending on how we are
                                    > > feeling and what has been arranged so far.
                                    > >
                                    > > Thank you all again for your support over the past year or so
                                    and
                                    > > please if you can, take a minute to say a prayer for Kaden who
                                    was
                                    > > so couragous and faught so very hard to stay with us ..
                                    > >
                                    > > Will write more when I have had some time ..
                                    > >
                                    >
                                  • Wright, Janice (J)
                                    Dear Sheallyn, My heart and prayers go out to you at this time. We are so blessed and fight so hard to have these special children in our care, that it hurts
                                    Message 17 of 22 , Feb 25, 2008
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                                      Dear Sheallyn,

                                       

                                      My heart and prayers go out to you at this time. We are so blessed and fight so hard to have these special children in our care, that it hurts all the more when they are gone.

                                       

                                      I do not go online often and read the mails. My son, Matthew, died 3 years ago and it is still so hard. I try to stay in touch as I made so many friends through this support group. This group also helped me grieve my son, and stayed with me over the years still giving me support when I needed it. There are still many of us that have lost our loved ones, so if you need to grieve or vent or celebrate Kaden’s life – we are all here for you.

                                       

                                      I remember Matthew and his funny and special ways, and the lessons he taught, that I am still trying to learn. What I do know, is that he will always be a part of me, as Kaden will always be a part of you, that space in your heart that is filled with his love.

                                       

                                      I don’t know who wrote this poem/eulogy, but it still to this day gives me peace – Kaden will always live in your heart, in your memories – he left his footprints there.

                                       

                                      Do not stand at my grave and forever weep.
                                      I am not there; I do not sleep.
                                      I am a thousand winds that blow.
                                      I am the diamond glints on snow.
                                      I am the sunlight on ripened grain.
                                      I am the gentle autumn’s rain.
                                      When you awaken in the morning’s hush
                                      I am the swift uplifting rush
                                      Of quiet birds in circled flight.
                                      I am the soft stars that shine at night.
                                      Do not stand at my grave and forever cry.
                                      I am not there. I did not die.

                                       

                                      God bless you and your family.

                                       

                                      Janice

                                       


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                                    • vairluvr@aol.com
                                      Sheallyn - I have recently joined this wonderful group and I believe the day I started reading posts was the day your sweet Kaden left us to be with others in
                                      Message 18 of 22 , Feb 25, 2008
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                                        Sheallyn -
                                         
                                        I have recently joined this wonderful group and I believe the day I started reading posts was the day your sweet Kaden left us to be with others in Heaven.  My son, Michael, passed away (at age 4) more than 12 years ago and I forgot how supportive a group like this can be after loosing such gentle, wonderful and special children like our MTM boys.  I left my online support system when I moved to the southeast over 5 years ago. It was by pure accident that I found this group and saddened at your loss.  My heart and prayers go out to you and your family. 
                                         
                                        My love and thoughts are with you, 
                                        Leslie
                                         




                                        Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.
                                      • Sheallyn
                                        thanks so much Leslie, I appreciate it .. one day at a time for me right now. If you ever want to chat, let me know .. Sorry for your loss as well ... take
                                        Message 19 of 22 , Mar 5, 2008
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                                          thanks so much Leslie, I appreciate it .. one day at a time for me
                                          right now. If you ever want to chat, let me know .. Sorry for your
                                          loss as well ...

                                          take care
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