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  • minyturtle
    My great nephew who was born a little over 3 weeks ago. Has been diagnosis with Myotubular Myopathy. We are trying to locate a specialist in the Charlotte NC
    Message 1 of 17 , Nov 19, 2003
      My great nephew who was born a little over 3 weeks ago. Has been
      diagnosis with Myotubular Myopathy. We are trying to locate a
      specialist in the Charlotte NC area or East Coast. We would also like
      information from other families who are in the same situation. Any
      information would be greatly appreicated.
    • redscootee@webtv.net
      For the person looking for info in the Charlotte, NC area. Did you try the local MDA office? I know they have some good clinics in the area. I think Duke is
      Message 2 of 17 , Nov 21, 2003
        For the person looking for info in the Charlotte, NC area. Did you try
        the local MDA office? I know they have some good clinics in the area. I
        think Duke is one of them. You can check the National MDA site to find
        out the clinic by you. There addy is <a href="http://www.mdausa.org">
        MDA</a>
        My husband and I have put together a web site on md. I am 52 and have
        x-mtm. Our addy is: <a
        href="http://www.wtv-zone.com/mdaww/indexzep1.html">Wide World of MD</a>
        If you have any questions feel free to ask.
        take care pat
      • connie guinn
        Hello! I am glad that you found us! I am sorry to hear that your great nephew has this diagnosis, but you have come to a GREAT place to gather information.
        Message 3 of 17 , Dec 2, 2003
          Hello!
          I am glad that you found us! I am sorry to hear that
          your great nephew has this diagnosis, but you have
          come to a GREAT place to gather information. What is
          your nephew's name? When was he born? I am not
          familiar with any specialists in the Charlotte NC or
          East Coast area (I live near Houston, TX). There are
          lots of families who visit this site who are parents
          of boys born with x-linked Myotubular Myopathy, (I am
          one of them), and we share ALL SORTS of information-
          about how our boys are progressing, about their
          abilities, about the meds they are on,about how we
          problem-solve through certain issues, we share photos
          of our kids, etc. It has been extremely helpful. A
          lot of us also communicate individually by Instant
          Messaging one another. This has been a tremendous
          boost for me, personally, and helps me to get a better
          handle on what my son,Benjamin, needs. It also helps
          me to know that I am not the only one out there
          dealing with this. A lot of good support can be
          found here. Can your niece join this group, perhaps?
          That would be great! She is welcome here. Feel free
          to ask any specific questions you may have:o) Take
          care. Godspeed.
          -Connie

          P.S. My son, Benjamin, is 14 months old. He was in
          the NICU for 2 1/2 months. He had a muscle biopsy and
          genetic testing done at the University of Chicago,
          confirming his diagnosis. He has a trach and a
          g-button (for feeding). He is currently on a
          ventilator for 23 hours and 15 minutes a day. He does
          not have an effective blink, so we put rewetting drops
          in his eyes every hour. He does not have an effective
          swallow, so he is tube fed, mostly. Occupational
          therapy is working on his swallow. He is just
          starting to exhibit trunk control, and he can hold his
          head up for a few minutes at a time. When prompted,
          he can roll from side to side. He talks over his
          trach- he laughs, he cries, he babbles, he says mama,
          dada, no-no, yes, etc. He knows his colors, he knows
          the difference between all of his animal bath toys.
          His favorite tv shows are Sesame Street and Zaboomafu!
          I hope this is helpful to you.
          -Connie

          --- minyturtle <grooms4@...> wrote:
          > My great nephew who was born a little over 3 weeks
          > ago. Has been
          > diagnosis with Myotubular Myopathy. We are trying to
          > locate a
          > specialist in the Charlotte NC area or East Coast.
          > We would also like
          > information from other families who are in the same
          > situation. Any
          > information would be greatly appreicated.
          >
          >
          >


          =====
          Godspeed.
          -Connie

          __________________________________
          Do you Yahoo!?
          Free Pop-Up Blocker - Get it now
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        • Grooms4
          Thanks Connie for the your message. My nephew was born on Oct 27. His name is beautiful but I will wait and let my niece share that if she chooses to. She is
          Message 4 of 17 , Dec 2, 2003
            Thanks Connie for the your message. My nephew was born on Oct 27. His name is beautiful but I will wait and let my niece share that if she chooses to. She is spending all day at his bedside in the NICU. This have been so hard for her as I am sure has been for all who have been through this. He does not have a trach but that has been brought up. At what age did Benjamin get his trach? That is wonderful that Benjamin is able to talk with his trach. There is a specialist in the area that is going to look at him soon.  Hopefully my neice will be able to join this group soon as for now she perfers to be by his side talking to him. While Benjamin was in NICU did the Doctors give you much hope? We try to stay excited about the small improvements but sometimes that can be hard. Thanks again for the information and the kind words. It helps even me (just the great aunt) to hear from people with some of same issues. The entire family is concerned, worried and in love with this wonderful child.
             
            ----- Original Message -----
            Sent: Tuesday, December 02, 2003 2:58 PM
            Subject: Re: [Myotubular_Myopathy] Searching for info

            Hello!
            I am glad that you found us!  I am sorry to hear that
            your great nephew has this diagnosis, but you have
            come to a GREAT place to gather information.  What is
            your nephew's name?  When was he born?    I am not
            familiar with any specialists in the Charlotte NC or
            East Coast area (I live near Houston, TX).  There are
            lots of families who visit this site who are parents
            of boys born with x-linked Myotubular Myopathy, (I am
            one of them), and we share ALL SORTS of information-
            about how our boys are progressing, about their
            abilities, about the meds they are on,about  how we
            problem-solve through certain issues, we share photos
            of our kids, etc.  It has been extremely helpful.  A
            lot of us also communicate individually by Instant
            Messaging one another.  This has been a tremendous
            boost for me, personally, and helps me to get a better
            handle on what my son,Benjamin, needs.  It also helps
            me to know that I am not the only one out there
            dealing with this.  A lot of good support can be
            found here.  Can your niece join this group, perhaps?
            That would be great!  She is welcome here.  Feel free
            to ask any specific questions you may have:o)  Take
            care.   Godspeed.
                       -Connie

            P.S.  My son, Benjamin, is 14 months old.  He was in
            the NICU for 2 1/2 months.  He had a muscle biopsy and
            genetic testing done at the University of Chicago,
            confirming his diagnosis.  He has a trach and a
            g-button (for feeding).  He is currently on a
            ventilator for 23 hours and 15 minutes a day.  He does
            not have an effective blink, so we put rewetting drops
            in his eyes every hour.  He does not have an effective
            swallow, so he is tube fed, mostly.  Occupational
            therapy is working on his swallow.  He is just
            starting to exhibit trunk control, and he can hold his
            head up for a few minutes at a time.  When prompted,
            he can roll from side to side.  He talks over his
            trach- he laughs, he cries, he babbles, he says mama,
            dada, no-no, yes, etc.  He knows his colors, he knows
            the difference between all of his animal bath toys.
            His favorite tv shows are Sesame Street and Zaboomafu!
            I hope this is helpful to you.  
            -Connie

            --- minyturtle <grooms4@...> wrote:
            >  My great nephew who was born a little over 3 weeks
            > ago. Has been
            > diagnosis with Myotubular Myopathy. We are trying to
            > locate a
            > specialist in the Charlotte NC area or East Coast.
            > We would also like
            > information from other families who are in the same
            > situation. Any
            > information would be greatly appreicated. 
            >
            >
            >


            =====
            Godspeed.
                                         -Connie

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          • connie guinn
            Hello again! I understand completely. I spent every moment that I could at Benjamin s bedside when he was in the NICU. This was very hard because I had a 7 yr
            Message 5 of 17 , Dec 2, 2003
              Hello again!
              I understand completely. I spent every moment that I
              could at Benjamin's bedside when he was in the NICU.
              This was very hard because I had a 7 yr old daughter
              at home who was not allowed in except during certain
              hours on Sundays. It is, indeed, an extremely hard
              thing to go through- very exhausting (emotionaly and
              physically). It does get better, though. It
              sometimes seems like it never will get better, but it
              will. Sometimes it even seems as if nothing is wrong
              or hard, at all!!
              Benjamin got his trach and his g-button at the same
              time. It was when he was a month old. I hated the
              idea of it- it seemed so weird and abnormal. But, I
              also recognized that he would fare much better with it
              (and he did). It was good to get all the tape off and
              to see his face, finally. :o) It really was the best
              thing for him. And, it is vey common for them to
              learn to talk over their trachs. There are even
              valves that can be used to facilitate speaking (they
              are called Passey Muir valves- PMV's- and they can be
              used with or without a ventilator. Is your nephew on
              a ventilator?
              That would be excellent if your neice could join the
              group! When I was in the NICU (I lived there with
              Benjamin, you know!), I wasn't aware of much else
              around me except for my son. However, he has been
              hospitalized since being discharged from the NICU, and
              now I know that there are places for me to go- within
              the hospital (for when I take breaks from him)- where
              there is internet access, making it possible for me to
              get with others and still be with Benjamin! I
              remember that I never wanted to leave his side. I
              wanted to see all the contact he had with everyone,
              and I wanted to know what he was going through at all
              times. I hated having to leave!! Eventually, I began
              to take short breaks with some other moms that I met
              there. Soon enough, it wasn't 'hard' to take the
              breaks. I still hated leaving him, but it wasn't hard
              anymore (not like in the beginning, anyway).
              There were only a couple of people in the NICU who
              were positive about Benjamin and his prognosis-
              everyone else was negative and they didn't hold out
              much hope for him. One of the neonatologists was a
              very caring, encouraging person who did not 'write him
              off', so to speak, like all the others did. I also
              remember one nurse who was very uplifting and had a
              good attitude about his future. The rest of them just
              were blank about him or they looked at us as if we
              were fools for keeping him alive.
              We celebrated EVERY little accomplishment with great
              joy!! When he lifted his little tiny leg, we clapped
              and cried and squealed with delight as we bragged to
              everyone around us about it, while videotaping. Then,
              we would rush out to a phone to call all of our family
              to let them know of his great achievement!! I think
              that this is a MUST, because nothing is "little" with
              these boys. Every breath they take and every move
              they make is MAJOR- and worth celebrating!!! :o)
              It is great that the entire family is there to support
              this child (and his parents)! This is so important!!
              A rock solid support network like that is invaluable.
              Keep encouraging your neice- it is so easy to get down
              about things. Especially in such an unsupportive
              environment, and with the whole 'postpartum blues'
              thing going on (potentially). Take her out to lunch
              (if she'll go- you may have to drag her out!) Pamper
              her as much as she will allow- she needs it. And it
              sounds like I don't need to tell you to love that baby
              like there is no tomorrow!! I know that he is a
              sweet, precious boy. Congratulations on having him to
              love, and on getting to be a part of his life!! Take
              care. Abundant blessings to you all! Godspeed.
              -Connie
              --- Grooms4 <grooms4@...> wrote:
              > Thanks Connie for the your message. My nephew was
              > born on Oct 27. His name is beautiful but I will
              > wait and let my niece share that if she chooses to.
              > She is spending all day at his bedside in the NICU.
              > This have been so hard for her as I am sure has been
              > for all who have been through this. He does not have
              > a trach but that has been brought up. At what age
              > did Benjamin get his trach? That is wonderful that
              > Benjamin is able to talk with his trach. There is a
              > specialist in the area that is going to look at him
              > soon. Hopefully my neice will be able to join this
              > group soon as for now she perfers to be by his side
              > talking to him. While Benjamin was in NICU did the
              > Doctors give you much hope? We try to stay excited
              > about the small improvements but sometimes that can
              > be hard. Thanks again for the information and the
              > kind words. It helps even me (just the great aunt)
              > to hear from people with some of same issues. The
              > entire family is concerned, worried and in love with
              > this wonderful child.
              >
              > ----- Original Message -----
              > From: connie guinn
              > To: Myotubular_Myopathy@yahoogroups.com
              > Sent: Tuesday, December 02, 2003 2:58 PM
              > Subject: Re: [Myotubular_Myopathy] Searching for
              > info
              >
              >
              > Hello!
              > I am glad that you found us! I am sorry to hear
              > that
              > your great nephew has this diagnosis, but you have
              > come to a GREAT place to gather information. What
              > is
              > your nephew's name? When was he born? I am not
              > familiar with any specialists in the Charlotte NC
              > or
              > East Coast area (I live near Houston, TX). There
              > are
              > lots of families who visit this site who are
              > parents
              > of boys born with x-linked Myotubular Myopathy, (I
              > am
              > one of them), and we share ALL SORTS of
              > information-
              > about how our boys are progressing, about their
              > abilities, about the meds they are on,about how
              > we
              > problem-solve through certain issues, we share
              > photos
              > of our kids, etc. It has been extremely helpful.
              > A
              > lot of us also communicate individually by Instant
              > Messaging one another. This has been a tremendous
              > boost for me, personally, and helps me to get a
              > better
              > handle on what my son,Benjamin, needs. It also
              > helps
              > me to know that I am not the only one out there
              > dealing with this. A lot of good support can be
              > found here. Can your niece join this group,
              > perhaps?
              > That would be great! She is welcome here. Feel
              > free
              > to ask any specific questions you may have:o)
              > Take
              > care. Godspeed.
              > -Connie
              >
              > P.S. My son, Benjamin, is 14 months old. He was
              > in
              > the NICU for 2 1/2 months. He had a muscle biopsy
              > and
              > genetic testing done at the University of Chicago,
              > confirming his diagnosis. He has a trach and a
              > g-button (for feeding). He is currently on a
              > ventilator for 23 hours and 15 minutes a day. He
              > does
              > not have an effective blink, so we put rewetting
              > drops
              > in his eyes every hour. He does not have an
              > effective
              > swallow, so he is tube fed, mostly. Occupational
              > therapy is working on his swallow. He is just
              > starting to exhibit trunk control, and he can hold
              > his
              > head up for a few minutes at a time. When
              > prompted,
              > he can roll from side to side. He talks over his
              > trach- he laughs, he cries, he babbles, he says
              > mama,
              > dada, no-no, yes, etc. He knows his colors, he
              > knows
              > the difference between all of his animal bath
              > toys.
              > His favorite tv shows are Sesame Street and
              > Zaboomafu!
              > I hope this is helpful to you.
              > -Connie
              >
              > --- minyturtle <grooms4@...> wrote:
              > > My great nephew who was born a little over 3
              > weeks
              > > ago. Has been
              > > diagnosis with Myotubular Myopathy. We are
              > trying to
              > > locate a
              > > specialist in the Charlotte NC area or East
              > Coast.
              > > We would also like
              > > information from other families who are in the
              > same
              > > situation. Any
              > > information would be greatly appreicated.
              > >
              > >
              > >
              >
              >
              > =====
              > Godspeed.
              > -Connie
              >
              > __________________________________
              > Do you Yahoo!?
              > Free Pop-Up Blocker - Get it now
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              >
              >
              >
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              >
              >
              >
              > Your use of Yahoo! Groups is subject to the Yahoo!
              > Terms of Service.
              >


              =====
              Godspeed.
              -Connie

              __________________________________
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              Free Pop-Up Blocker - Get it now
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            • Amanda
              Hello! I am really glad you found this group. I just wanted to reiterate everything Connie said. My son Jacob, now 22 months old, was born February 3, 2002.
              Message 6 of 17 , Dec 3, 2003
                Hello! I am really glad you found this group. I just wanted to
                reiterate everything Connie said. My son Jacob, now 22 months old,
                was born February 3, 2002. He was very floppy and needed to be
                rescusitated immediately. Thinking back to those NICU days is very
                emotional for me. My husband and I were told many times that the
                best thing we could do for Jacob was to take him home and "let
                nature take its course." Without the support and love of our
                family, I truly can't say what we would of decided to do. There
                have been several cases of MTM in my family, so we knew right away
                what Jacob had, although we were not prepared for it. While my
                husband and I spent every second we could with Jacob, my family was
                frantically searching for information on MTM and gathering medical
                records from the family members who had MTM. My aunt, who had a son
                20+ years ago with MTM, strongly encouraged us to fight for a trach
                and g-tube. And we did! and we finally got it when Jacob was 5
                weeks old. His neonatologist was not optimistic at all, but saw
                that we were not giving in. The social worker even suggested we
                contact a hospice.
                We have been through so much with Jacob, but I wouldn't trade one
                second. He is so smart, funny, and quite a little charmer. We love
                him so much and couldn't imagine life without him.
                We are here for you and your niece and family. Please come to us
                for any questions or support you need. I know this is not an easy
                time for your niece, but she seems to have a great support network,
                which I can say from experience is absolutely invaluable.
                I strongly believe the best decisions in life can be made with a
                clear conscious when you are educated with all the relevant
                information.
                Please send our support to your niece. I will be praying for you
                all.
                Take care, Amanda, mommy to Jacob(who is 22 months old - today!!)


                --- In Myotubular_Myopathy@yahoogroups.com, "Grooms4" <grooms4@c...>
                wrote:
                > Thanks Connie for the your message. My nephew was born on Oct 27.
                His name is beautiful but I will wait and let my niece share that if
                she chooses to. She is spending all day at his bedside in the NICU.
                This have been so hard for her as I am sure has been for all who
                have been through this. He does not have a trach but that has been
                brought up. At what age did Benjamin get his trach? That is
                wonderful that Benjamin is able to talk with his trach. There is a
                specialist in the area that is going to look at him soon. Hopefully
                my neice will be able to join this group soon as for now she perfers
                to be by his side talking to him. While Benjamin was in NICU did the
                Doctors give you much hope? We try to stay excited about the small
                improvements but sometimes that can be hard. Thanks again for the
                information and the kind words. It helps even me (just the great
                aunt) to hear from people with some of same issues. The entire
                family is concerned, worried and in love with this wonderful child.
                >
                > ----- Original Message -----
                > From: connie guinn
                > To: Myotubular_Myopathy@yahoogroups.com
                > Sent: Tuesday, December 02, 2003 2:58 PM
                > Subject: Re: [Myotubular_Myopathy] Searching for info
                >
                >
                > Hello!
                > I am glad that you found us! I am sorry to hear that
                > your great nephew has this diagnosis, but you have
                > come to a GREAT place to gather information. What is
                > your nephew's name? When was he born? I am not
                > familiar with any specialists in the Charlotte NC or
                > East Coast area (I live near Houston, TX). There are
                > lots of families who visit this site who are parents
                > of boys born with x-linked Myotubular Myopathy, (I am
                > one of them), and we share ALL SORTS of information-
                > about how our boys are progressing, about their
                > abilities, about the meds they are on,about how we
                > problem-solve through certain issues, we share photos
                > of our kids, etc. It has been extremely helpful. A
                > lot of us also communicate individually by Instant
                > Messaging one another. This has been a tremendous
                > boost for me, personally, and helps me to get a better
                > handle on what my son,Benjamin, needs. It also helps
                > me to know that I am not the only one out there
                > dealing with this. A lot of good support can be
                > found here. Can your niece join this group, perhaps?
                > That would be great! She is welcome here. Feel free
                > to ask any specific questions you may have:o) Take
                > care. Godspeed.
                > -Connie
                >
                > P.S. My son, Benjamin, is 14 months old. He was in
                > the NICU for 2 1/2 months. He had a muscle biopsy and
                > genetic testing done at the University of Chicago,
                > confirming his diagnosis. He has a trach and a
                > g-button (for feeding). He is currently on a
                > ventilator for 23 hours and 15 minutes a day. He does
                > not have an effective blink, so we put rewetting drops
                > in his eyes every hour. He does not have an effective
                > swallow, so he is tube fed, mostly. Occupational
                > therapy is working on his swallow. He is just
                > starting to exhibit trunk control, and he can hold his
                > head up for a few minutes at a time. When prompted,
                > he can roll from side to side. He talks over his
                > trach- he laughs, he cries, he babbles, he says mama,
                > dada, no-no, yes, etc. He knows his colors, he knows
                > the difference between all of his animal bath toys.
                > His favorite tv shows are Sesame Street and Zaboomafu!
                > I hope this is helpful to you.
                > -Connie
                >
                > --- minyturtle <grooms4@c...> wrote:
                > > My great nephew who was born a little over 3 weeks
                > > ago. Has been
                > > diagnosis with Myotubular Myopathy. We are trying to
                > > locate a
                > > specialist in the Charlotte NC area or East Coast.
                > > We would also like
                > > information from other families who are in the same
                > > situation. Any
                > > information would be greatly appreicated.
                > >
                > >
                > >
                >
                >
                > =====
                > Godspeed.
                > -Connie
                >
                > __________________________________
                > Do you Yahoo!?
                > Free Pop-Up Blocker - Get it now
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                > ADVERTISEMENT
                >
                >
                >
                >
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                >
                >
                >
                > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                Service.
              • redscootee@webtv.net
                Connie, Your email really touched my heart to the great aunt about celebrating every accomplishment and staying positive. Benjamin is a lucky young fellow to
                Message 7 of 17 , Dec 3, 2003
                  Connie, Your email really touched my heart to the great aunt about
                  celebrating every accomplishment and staying positive. Benjamin is a
                  lucky young fellow to have such a loving caring mommy.
                  take care pat
                • Shannon
                  Hi, Reading your letter brings back many memories of our stay in the NICU. Javad was in the NICU for 3 weeks. They didn t know what was wrong with him when
                  Message 8 of 17 , Dec 3, 2003
                    Hi,

                    Reading your letter brings back many memories of our stay in the
                    NICU. Javad was in the NICU for 3 weeks. They didn't know what was
                    wrong with him when they discharged us, but sent us on our way with
                    an "undiagnosed myopathy." Later he was misdiagnosed and finally
                    after almost 2 years, diagnosed with centronuclear myopathy. It is
                    a hard time. You want to be encouraged by every movement even
                    though you can see it in their eyes that they are not encouraged. I
                    think it is crucial that you find support. It is great that you are
                    there for your niece. You say that they are starting to discuss a
                    trach for him. Javad does not have a trach, but rather gets PEP
                    treatments. This has helped him. That does not mean it's the answer
                    for all. Make sure that all options are discussed, not
                    just "because this is the diagnosis and we may end up there, let's
                    do it now." Try to keep the big picture open. Sometimes, I think,
                    medical practitioners just look at the diagnosis and want to follow
                    what they think, rather than really looking at the child and seeing
                    if that step is really necessary at this time. Know that this group
                    is here for your support and, hopefully when your niece is ready,
                    her support too! Our prayers are with you and your whole family.

                    Shannon
                  • Grooms4
                    Connie, Thanks for the kind words. I have another question for the qroup: Did any of your babies have trouble digesting? Thanks, Marva ... From: connie guinn
                    Message 9 of 17 , Dec 3, 2003
                      Connie,
                       
                      Thanks for the kind words.
                       
                       
                      I have another question for the qroup: Did any of your babies have trouble digesting?
                       
                      Thanks,
                      Marva
                       
                      ----- Original Message -----
                      Sent: Wednesday, December 03, 2003 1:02 AM
                      Subject: Re: [Myotubular_Myopathy] Searching for info

                      Hello again!
                      I understand completely.  I spent every moment that I
                      could at Benjamin's bedside when he was in the NICU.
                      This was very hard because I had a 7 yr old daughter
                      at home who was not allowed in except during certain
                      hours on Sundays.  It is, indeed, an extremely hard
                      thing to go through- very exhausting (emotionaly and
                      physically).  It does get better, though.  It
                      sometimes seems like it never will get better, but it
                      will.  Sometimes it even seems as if nothing is wrong
                      or hard, at all!!
                      Benjamin got his trach and his g-button at the same
                      time. It was when he was a month old.  I hated the
                      idea of it- it seemed so weird and abnormal.  But, I
                      also recognized that he would fare much better with it
                      (and he did).  It was good to get all the tape off and
                      to see his face, finally. :o) It really was the best
                      thing for him.  And, it is vey common for them to
                      learn to talk over their trachs.  There are even
                      valves that can be used to facilitate speaking (they
                      are called Passey Muir valves- PMV's- and they can be
                      used with or without a ventilator.   Is your nephew on
                      a ventilator?
                      That would be excellent if your neice could join the
                      group!  When I was in the NICU (I lived there with
                      Benjamin, you know!), I wasn't aware of much else
                      around me except for my son.  However, he has been
                      hospitalized since being discharged from the NICU, and
                      now I know that there are places for me to go- within
                      the hospital (for when I take breaks from him)- where
                      there is internet access, making it possible for me to
                      get with others and still be with Benjamin!  I
                      remember that I never wanted to leave his side.  I
                      wanted to see all the contact he had with everyone,
                      and I wanted to know what he was going through at all
                      times. I hated having to leave!!  Eventually, I began
                      to take short breaks with some other moms that I met
                      there.  Soon enough, it wasn't 'hard' to take the
                      breaks.  I still hated leaving him, but it wasn't hard
                      anymore (not like in the beginning, anyway).
                      There were only a couple of people in the NICU who
                      were positive about Benjamin and his prognosis-
                      everyone else was negative and they didn't hold out
                      much hope for him.  One of the neonatologists was a
                      very caring, encouraging person who did not 'write him
                      off', so to speak, like all the others did.  I also
                      remember one nurse who was very uplifting and had a
                      good attitude about his future.  The rest of them just
                      were blank about him or they looked at us as if we
                      were fools for keeping him alive.
                      We celebrated EVERY little accomplishment with great
                      joy!!  When he lifted his little tiny leg, we clapped
                      and cried and squealed with delight as we bragged to
                      everyone around us about it, while videotaping.  Then,
                      we would rush out to a phone to call all of our family
                      to let them know of his great achievement!!  I think
                      that this is a MUST, because nothing is "little" with
                      these boys.  Every breath they take and every move
                      they make is MAJOR- and worth celebrating!!!  :o)
                      It is great that the entire family is there to support
                      this child (and his parents)!  This is so important!!
                      A rock solid support network like that is invaluable.
                      Keep encouraging your neice- it is so easy to get down
                      about things.  Especially in such an unsupportive
                      environment, and with the whole 'postpartum blues'
                      thing going on (potentially).  Take her out to lunch
                      (if she'll go- you may have to drag her out!) Pamper
                      her as much as she will allow- she needs it.  And it
                      sounds like I don't need to tell you to love that baby
                      like there is no tomorrow!!  I know that he is a
                      sweet, precious boy.  Congratulations on having him to
                      love, and on getting to be a part of his life!!  Take
                      care.   Abundant blessings to you all!  Godspeed.
                                   -Connie
                      --- Grooms4 <grooms4@...> wrote:
                      > Thanks Connie for the your message. My nephew was
                      > born on Oct 27. His name is beautiful but I will
                      > wait and let my niece share that if she chooses to.
                      > She is spending all day at his bedside in the NICU.
                      > This have been so hard for her as I am sure has been
                      > for all who have been through this. He does not have
                      > a trach but that has been brought up. At what age
                      > did Benjamin get his trach? That is wonderful that
                      > Benjamin is able to talk with his trach. There is a
                      > specialist in the area that is going to look at him
                      > soon.  Hopefully my neice will be able to join this
                      > group soon as for now she perfers to be by his side
                      > talking to him. While Benjamin was in NICU did the
                      > Doctors give you much hope? We try to stay excited
                      > about the small improvements but sometimes that can
                      > be hard. Thanks again for the information and the
                      > kind words. It helps even me (just the great aunt)
                      > to hear from people with some of same issues. The
                      > entire family is concerned, worried and in love with
                      > this wonderful child.
                      >
                      > ----- Original Message -----
                      >   From: connie guinn
                      >   To: Myotubular_Myopathy@yahoogroups.com
                      >   Sent: Tuesday, December 02, 2003 2:58 PM
                      >   Subject: Re: [Myotubular_Myopathy] Searching for
                      > info
                      >
                      >
                      >   Hello!
                      >   I am glad that you found us!  I am sorry to hear
                      > that
                      >   your great nephew has this diagnosis, but you have
                      >   come to a GREAT place to gather information.  What
                      > is
                      >   your nephew's name?  When was he born?    I am not
                      >   familiar with any specialists in the Charlotte NC
                      > or
                      >   East Coast area (I live near Houston, TX).  There
                      > are
                      >   lots of families who visit this site who are
                      > parents
                      >   of boys born with x-linked Myotubular Myopathy, (I
                      > am
                      >   one of them), and we share ALL SORTS of
                      > information-
                      >   about how our boys are progressing, about their
                      >   abilities, about the meds they are on,about  how
                      > we
                      >   problem-solve through certain issues, we share
                      > photos
                      >   of our kids, etc.  It has been extremely helpful.
                      > A
                      >   lot of us also communicate individually by Instant
                      >   Messaging one another.  This has been a tremendous
                      >   boost for me, personally, and helps me to get a
                      > better
                      >   handle on what my son,Benjamin, needs.  It also
                      > helps
                      >   me to know that I am not the only one out there
                      >   dealing with this.  A lot of good support can be
                      >   found here.  Can your niece join this group,
                      > perhaps?
                      >   That would be great!  She is welcome here.  Feel
                      > free
                      >   to ask any specific questions you may have:o)
                      > Take
                      >   care.   Godspeed.
                      >              -Connie
                      >
                      >   P.S.  My son, Benjamin, is 14 months old.  He was
                      > in
                      >   the NICU for 2 1/2 months.  He had a muscle biopsy
                      > and
                      >   genetic testing done at the University of Chicago,
                      >   confirming his diagnosis.  He has a trach and a
                      >   g-button (for feeding).  He is currently on a
                      >   ventilator for 23 hours and 15 minutes a day.  He
                      > does
                      >   not have an effective blink, so we put rewetting
                      > drops
                      >   in his eyes every hour.  He does not have an
                      > effective
                      >   swallow, so he is tube fed, mostly.  Occupational
                      >   therapy is working on his swallow.  He is just
                      >   starting to exhibit trunk control, and he can hold
                      > his
                      >   head up for a few minutes at a time.  When
                      > prompted,
                      >   he can roll from side to side.  He talks over his
                      >   trach- he laughs, he cries, he babbles, he says
                      > mama,
                      >   dada, no-no, yes, etc.  He knows his colors, he
                      > knows
                      >   the difference between all of his animal bath
                      > toys.
                      >   His favorite tv shows are Sesame Street and
                      > Zaboomafu!
                      >   I hope this is helpful to you.  
                      >   -Connie
                      >
                      >   --- minyturtle <grooms4@...> wrote:
                      >   >  My great nephew who was born a little over 3
                      > weeks
                      >   > ago. Has been
                      >   > diagnosis with Myotubular Myopathy. We are
                      > trying to
                      >   > locate a
                      >   > specialist in the Charlotte NC area or East
                      > Coast.
                      >   > We would also like
                      >   > information from other families who are in the
                      > same
                      >   > situation. Any
                      >   > information would be greatly appreicated. 
                      >   >
                      >   >
                      >   >
                      >
                      >
                      >   =====
                      >   Godspeed.
                      >                                -Connie
                      >
                      >   __________________________________
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                      =====
                      Godspeed.
                                                   -Connie

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                    • connie guinn
                      Hi, Marva! Benjamin did not have a problem digesting food- he was exclusively fed breastmilk. He did, however, have a problem with reflux. He was given
                      Message 10 of 17 , Dec 3, 2003
                        Hi, Marva!
                        Benjamin did not have a problem digesting food- he was
                        exclusively fed breastmilk. He did, however, have a
                        problem with reflux. He was given Reglan and Zantac
                        for this problem and it solved it:o)
                        Good to hear from you again! Blessings! Godspeed.
                        -Connie
                        --- Grooms4 <grooms4@...> wrote:
                        > Connie,
                        >
                        > Thanks for the kind words.
                        >
                        >
                        > I have another question for the qroup: Did any of
                        > your babies have trouble digesting?
                        >
                        > Thanks,
                        > Marva
                        >
                        > ----- Original Message -----
                        > From: connie guinn
                        > To: Myotubular_Myopathy@yahoogroups.com
                        > Sent: Wednesday, December 03, 2003 1:02 AM
                        > Subject: Re: [Myotubular_Myopathy] Searching for
                        > info
                        >
                        >
                        > Hello again!
                        > I understand completely. I spent every moment
                        > that I
                        > could at Benjamin's bedside when he was in the
                        > NICU.
                        > This was very hard because I had a 7 yr old
                        > daughter
                        > at home who was not allowed in except during
                        > certain
                        > hours on Sundays. It is, indeed, an extremely
                        > hard
                        > thing to go through- very exhausting (emotionaly
                        > and
                        > physically). It does get better, though. It
                        > sometimes seems like it never will get better, but
                        > it
                        > will. Sometimes it even seems as if nothing is
                        > wrong
                        > or hard, at all!!
                        > Benjamin got his trach and his g-button at the
                        > same
                        > time. It was when he was a month old. I hated the
                        > idea of it- it seemed so weird and abnormal. But,
                        > I
                        > also recognized that he would fare much better
                        > with it
                        > (and he did). It was good to get all the tape off
                        > and
                        > to see his face, finally. :o) It really was the
                        > best
                        > thing for him. And, it is vey common for them to
                        > learn to talk over their trachs. There are even
                        > valves that can be used to facilitate speaking
                        > (they
                        > are called Passey Muir valves- PMV's- and they can
                        > be
                        > used with or without a ventilator. Is your
                        > nephew on
                        > a ventilator?
                        > That would be excellent if your neice could join
                        > the
                        > group! When I was in the NICU (I lived there with
                        > Benjamin, you know!), I wasn't aware of much else
                        > around me except for my son. However, he has been
                        > hospitalized since being discharged from the NICU,
                        > and
                        > now I know that there are places for me to go-
                        > within
                        > the hospital (for when I take breaks from him)-
                        > where
                        > there is internet access, making it possible for
                        > me to
                        > get with others and still be with Benjamin! I
                        > remember that I never wanted to leave his side. I
                        > wanted to see all the contact he had with
                        > everyone,
                        > and I wanted to know what he was going through at
                        > all
                        > times. I hated having to leave!! Eventually, I
                        > began
                        > to take short breaks with some other moms that I
                        > met
                        > there. Soon enough, it wasn't 'hard' to take the
                        > breaks. I still hated leaving him, but it wasn't
                        > hard
                        > anymore (not like in the beginning, anyway).
                        > There were only a couple of people in the NICU who
                        > were positive about Benjamin and his prognosis-
                        > everyone else was negative and they didn't hold
                        > out
                        > much hope for him. One of the neonatologists was
                        > a
                        > very caring, encouraging person who did not 'write
                        > him
                        > off', so to speak, like all the others did. I
                        > also
                        > remember one nurse who was very uplifting and had
                        > a
                        > good attitude about his future. The rest of them
                        > just
                        > were blank about him or they looked at us as if we
                        > were fools for keeping him alive.
                        > We celebrated EVERY little accomplishment with
                        > great
                        > joy!! When he lifted his little tiny leg, we
                        > clapped
                        > and cried and squealed with delight as we bragged
                        > to
                        > everyone around us about it, while videotaping.
                        > Then,
                        > we would rush out to a phone to call all of our
                        > family
                        > to let them know of his great achievement!! I
                        > think
                        > that this is a MUST, because nothing is "little"
                        > with
                        > these boys. Every breath they take and every move
                        > they make is MAJOR- and worth celebrating!!! :o)
                        > It is great that the entire family is there to
                        > support
                        > this child (and his parents)! This is so
                        > important!!
                        > A rock solid support network like that is
                        > invaluable.
                        > Keep encouraging your neice- it is so easy to get
                        > down
                        > about things. Especially in such an unsupportive
                        > environment, and with the whole 'postpartum blues'
                        > thing going on (potentially). Take her out to
                        > lunch
                        > (if she'll go- you may have to drag her out!)
                        > Pamper
                        > her as much as she will allow- she needs it. And
                        > it
                        > sounds like I don't need to tell you to love that
                        > baby
                        > like there is no tomorrow!! I know that he is a
                        > sweet, precious boy. Congratulations on having
                        > him to
                        > love, and on getting to be a part of his life!!
                        > Take
                        > care. Abundant blessings to you all! Godspeed.
                        > -Connie
                        > --- Grooms4 <grooms4@...> wrote:
                        > > Thanks Connie for the your message. My nephew
                        > was
                        > > born on Oct 27. His name is beautiful but I will
                        > > wait and let my niece share that if she chooses
                        > to.
                        > > She is spending all day at his bedside in the
                        > NICU.
                        > > This have been so hard for her as I am sure has
                        > been
                        > > for all who have been through this. He does not
                        > have
                        > > a trach but that has been brought up. At what
                        > age
                        > > did Benjamin get his trach? That is wonderful
                        > that
                        > > Benjamin is able to talk with his trach. There
                        > is a
                        > > specialist in the area that is going to look at
                        > him
                        > > soon. Hopefully my neice will be able to join
                        > this
                        > > group soon as for now she perfers to be by his
                        > side
                        > > talking to him. While Benjamin was in NICU did
                        > the
                        > > Doctors give you much hope? We try to stay
                        > excited
                        > > about the small improvements but sometimes that
                        > can
                        > > be hard. Thanks again for the information and
                        > the
                        > > kind words. It helps even me (just the great
                        > aunt)
                        > > to hear from people with some of same issues.
                        > The
                        > > entire family is concerned, worried and in love
                        > with
                        > > this wonderful child.
                        > >
                        > > ----- Original Message -----
                        > > From: connie guinn
                        > > To: Myotubular_Myopathy@yahoogroups.com
                        > > Sent: Tuesday, December 02, 2003 2:58 PM
                        > > Subject: Re: [Myotubular_Myopathy] Searching
                        > for
                        > > info
                        > >
                        > >
                        > > Hello!
                        > > I am glad that you found us! I am sorry to
                        > hear
                        > > that
                        > > your great nephew has this diagnosis, but you
                        > have
                        > > come to a GREAT place to gather information.
                        > What
                        > > is
                        > > your nephew's name? When was he born? I am
                        > not
                        >
                        === message truncated ===


                        =====
                        Godspeed.
                        -Connie

                        __________________________________
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                        Free Pop-Up Blocker - Get it now
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                      • Shannon
                        Javad also has problems with reflux. He is taking reglan and prilosec which works great! Sometimes reflux can make it seem like they don t digest well. When
                        Message 11 of 17 , Dec 4, 2003
                          Javad also has problems with reflux. He is taking reglan and
                          prilosec which works great! Sometimes reflux can make it seem like
                          they don't digest well. When Javad was a baby, we couldn't move him
                          for an hour after he ate because he would throw up! It was
                          horrible. As he has gotten older, it has gotten better, but it can
                          be scary! Javad got his g-tube (we call it his buddy) when he was
                          about 12 days old. It has ben great. he is starting to eat more
                          solid food, but it has definitely been a long process.

                          Talk to you soon!

                          Shannon
                        • Jessica Juckers
                          I just want to tell everyone who was able to Express Breast Milk with there children, You are all Awesome!!, It s so hard to be able to express under so much
                          Message 12 of 17 , Dec 4, 2003
                            I just want to tell everyone who was able to Express Breast Milk with
                            there children, You are all Awesome!!, It's so hard to be able to
                            express under so much stress, but I think as mothers it was a comfort
                            for us to be able to give our babes something so good, when they were so
                            sick, and weak.
                            Jessica

                            -----Original Message-----
                            From: connie guinn [mailto:kookla_g@...]
                            Sent: Thursday, 4 December 2003 3:42 PM
                            To: Myotubular_Myopathy@yahoogroups.com
                            Subject: Re: [Myotubular_Myopathy] Searching for info

                            Hi, Marva!
                            Benjamin did not have a problem digesting food- he was
                            exclusively fed breastmilk. He did, however, have a
                            problem with reflux. He was given Reglan and Zantac
                            for this problem and it solved it:o)
                            Good to hear from you again! Blessings! Godspeed.
                            -Connie
                            --- Grooms4 <grooms4@...> wrote:
                            > Connie,
                            >
                            > Thanks for the kind words.
                            >
                            >
                            > I have another question for the qroup: Did any of
                            > your babies have trouble digesting?
                            >
                            > Thanks,
                            > Marva
                            >
                            > ----- Original Message -----
                            > From: connie guinn
                            > To: Myotubular_Myopathy@yahoogroups.com
                            > Sent: Wednesday, December 03, 2003 1:02 AM
                            > Subject: Re: [Myotubular_Myopathy] Searching for
                            > info
                            >
                            >
                            > Hello again!
                            > I understand completely. I spent every moment
                            > that I
                            > could at Benjamin's bedside when he was in the
                            > NICU.
                            > This was very hard because I had a 7 yr old
                            > daughter
                            > at home who was not allowed in except during
                            > certain
                            > hours on Sundays. It is, indeed, an extremely
                            > hard
                            > thing to go through- very exhausting (emotionaly
                            > and
                            > physically). It does get better, though. It
                            > sometimes seems like it never will get better, but
                            > it
                            > will. Sometimes it even seems as if nothing is
                            > wrong
                            > or hard, at all!!
                            > Benjamin got his trach and his g-button at the
                            > same
                            > time. It was when he was a month old. I hated the
                            > idea of it- it seemed so weird and abnormal. But,
                            > I
                            > also recognized that he would fare much better
                            > with it
                            > (and he did). It was good to get all the tape off
                            > and
                            > to see his face, finally. :o) It really was the
                            > best
                            > thing for him. And, it is vey common for them to
                            > learn to talk over their trachs. There are even
                            > valves that can be used to facilitate speaking
                            > (they
                            > are called Passey Muir valves- PMV's- and they can
                            > be
                            > used with or without a ventilator. Is your
                            > nephew on
                            > a ventilator?
                            > That would be excellent if your neice could join
                            > the
                            > group! When I was in the NICU (I lived there with
                            > Benjamin, you know!), I wasn't aware of much else
                            > around me except for my son. However, he has been
                            > hospitalized since being discharged from the NICU,
                            > and
                            > now I know that there are places for me to go-
                            > within
                            > the hospital (for when I take breaks from him)-
                            > where
                            > there is internet access, making it possible for
                            > me to
                            > get with others and still be with Benjamin! I
                            > remember that I never wanted to leave his side. I
                            > wanted to see all the contact he had with
                            > everyone,
                            > and I wanted to know what he was going through at
                            > all
                            > times. I hated having to leave!! Eventually, I
                            > began
                            > to take short breaks with some other moms that I
                            > met
                            > there. Soon enough, it wasn't 'hard' to take the
                            > breaks. I still hated leaving him, but it wasn't
                            > hard
                            > anymore (not like in the beginning, anyway).
                            > There were only a couple of people in the NICU who
                            > were positive about Benjamin and his prognosis-
                            > everyone else was negative and they didn't hold
                            > out
                            > much hope for him. One of the neonatologists was
                            > a
                            > very caring, encouraging person who did not 'write
                            > him
                            > off', so to speak, like all the others did. I
                            > also
                            > remember one nurse who was very uplifting and had
                            > a
                            > good attitude about his future. The rest of them
                            > just
                            > were blank about him or they looked at us as if we
                            > were fools for keeping him alive.
                            > We celebrated EVERY little accomplishment with
                            > great
                            > joy!! When he lifted his little tiny leg, we
                            > clapped
                            > and cried and squealed with delight as we bragged
                            > to
                            > everyone around us about it, while videotaping.
                            > Then,
                            > we would rush out to a phone to call all of our
                            > family
                            > to let them know of his great achievement!! I
                            > think
                            > that this is a MUST, because nothing is "little"
                            > with
                            > these boys. Every breath they take and every move
                            > they make is MAJOR- and worth celebrating!!! :o)
                            > It is great that the entire family is there to
                            > support
                            > this child (and his parents)! This is so
                            > important!!
                            > A rock solid support network like that is
                            > invaluable.
                            > Keep encouraging your neice- it is so easy to get
                            > down
                            > about things. Especially in such an unsupportive
                            > environment, and with the whole 'postpartum blues'
                            > thing going on (potentially). Take her out to
                            > lunch
                            > (if she'll go- you may have to drag her out!)
                            > Pamper
                            > her as much as she will allow- she needs it. And
                            > it
                            > sounds like I don't need to tell you to love that
                            > baby
                            > like there is no tomorrow!! I know that he is a
                            > sweet, precious boy. Congratulations on having
                            > him to
                            > love, and on getting to be a part of his life!!
                            > Take
                            > care. Abundant blessings to you all! Godspeed.
                            > -Connie
                            > --- Grooms4 <grooms4@...> wrote:
                            > > Thanks Connie for the your message. My nephew
                            > was
                            > > born on Oct 27. His name is beautiful but I will
                            > > wait and let my niece share that if she chooses
                            > to.
                            > > She is spending all day at his bedside in the
                            > NICU.
                            > > This have been so hard for her as I am sure has
                            > been
                            > > for all who have been through this. He does not
                            > have
                            > > a trach but that has been brought up. At what
                            > age
                            > > did Benjamin get his trach? That is wonderful
                            > that
                            > > Benjamin is able to talk with his trach. There
                            > is a
                            > > specialist in the area that is going to look at
                            > him
                            > > soon. Hopefully my neice will be able to join
                            > this
                            > > group soon as for now she perfers to be by his
                            > side
                            > > talking to him. While Benjamin was in NICU did
                            > the
                            > > Doctors give you much hope? We try to stay
                            > excited
                            > > about the small improvements but sometimes that
                            > can
                            > > be hard. Thanks again for the information and
                            > the
                            > > kind words. It helps even me (just the great
                            > aunt)
                            > > to hear from people with some of same issues.
                            > The
                            > > entire family is concerned, worried and in love
                            > with
                            > > this wonderful child.
                            > >
                            > > ----- Original Message -----
                            > > From: connie guinn
                            > > To: Myotubular_Myopathy@yahoogroups.com
                            > > Sent: Tuesday, December 02, 2003 2:58 PM
                            > > Subject: Re: [Myotubular_Myopathy] Searching
                            > for
                            > > info
                            > >
                            > >
                            > > Hello!
                            > > I am glad that you found us! I am sorry to
                            > hear
                            > > that
                            > > your great nephew has this diagnosis, but you
                            > have
                            > > come to a GREAT place to gather information.
                            > What
                            > > is
                            > > your nephew's name? When was he born? I am
                            > not
                            >
                            === message truncated ===


                            =====
                            Godspeed.
                            -Connie

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                          • Amanda
                            Giving Jacob breast milk was absolutely the least I could do for him. It was very comforting to know that he was getting the nutrition and antibodies from it.
                            Message 13 of 17 , Dec 4, 2003
                              Giving Jacob breast milk was absolutely the least I could do for
                              him. It was very comforting to know that he was getting the
                              nutrition and antibodies from it. I did it for about 6 months and
                              Jacob never had any digestion problems during that time. I wanted
                              to go on for at least another 6 months, but it was very stressful.
                              Doing this for him also gave me some time away from the NICU. The
                              hospital had a room exclusively for pumping. It was so fantastic.

                              Amanda


                              --- In Myotubular_Myopathy@yahoogroups.com, "Jessica Juckers"
                              <jessnmark@i...> wrote:
                              > I just want to tell everyone who was able to Express Breast Milk
                              with
                              > there children, You are all Awesome!!, It's so hard to be able to
                              > express under so much stress, but I think as mothers it was a
                              comfort
                              > for us to be able to give our babes something so good, when they
                              were so
                              > sick, and weak.
                              > Jessica
                              >
                              > -----Original Message-----
                              > From: connie guinn [mailto:kookla_g@y...]
                              > Sent: Thursday, 4 December 2003 3:42 PM
                              > To: Myotubular_Myopathy@yahoogroups.com
                              > Subject: Re: [Myotubular_Myopathy] Searching for info
                              >
                              > Hi, Marva!
                              > Benjamin did not have a problem digesting food- he was
                              > exclusively fed breastmilk. He did, however, have a
                              > problem with reflux. He was given Reglan and Zantac
                              > for this problem and it solved it:o)
                              > Good to hear from you again! Blessings! Godspeed.
                              > -Connie
                              > --- Grooms4 <grooms4@c...> wrote:
                              > > Connie,
                              > >
                              > > Thanks for the kind words.
                              > >
                              > >
                              > > I have another question for the qroup: Did any of
                              > > your babies have trouble digesting?
                              > >
                              > > Thanks,
                              > > Marva
                              > >
                              > > ----- Original Message -----
                              > > From: connie guinn
                              > > To: Myotubular_Myopathy@yahoogroups.com
                              > > Sent: Wednesday, December 03, 2003 1:02 AM
                              > > Subject: Re: [Myotubular_Myopathy] Searching for
                              > > info
                              > >
                              > >
                              > > Hello again!
                              > > I understand completely. I spent every moment
                              > > that I
                              > > could at Benjamin's bedside when he was in the
                              > > NICU.
                              > > This was very hard because I had a 7 yr old
                              > > daughter
                              > > at home who was not allowed in except during
                              > > certain
                              > > hours on Sundays. It is, indeed, an extremely
                              > > hard
                              > > thing to go through- very exhausting (emotionaly
                              > > and
                              > > physically). It does get better, though. It
                              > > sometimes seems like it never will get better, but
                              > > it
                              > > will. Sometimes it even seems as if nothing is
                              > > wrong
                              > > or hard, at all!!
                              > > Benjamin got his trach and his g-button at the
                              > > same
                              > > time. It was when he was a month old. I hated the
                              > > idea of it- it seemed so weird and abnormal. But,
                              > > I
                              > > also recognized that he would fare much better
                              > > with it
                              > > (and he did). It was good to get all the tape off
                              > > and
                              > > to see his face, finally. :o) It really was the
                              > > best
                              > > thing for him. And, it is vey common for them to
                              > > learn to talk over their trachs. There are even
                              > > valves that can be used to facilitate speaking
                              > > (they
                              > > are called Passey Muir valves- PMV's- and they can
                              > > be
                              > > used with or without a ventilator. Is your
                              > > nephew on
                              > > a ventilator?
                              > > That would be excellent if your neice could join
                              > > the
                              > > group! When I was in the NICU (I lived there with
                              > > Benjamin, you know!), I wasn't aware of much else
                              > > around me except for my son. However, he has been
                              > > hospitalized since being discharged from the NICU,
                              > > and
                              > > now I know that there are places for me to go-
                              > > within
                              > > the hospital (for when I take breaks from him)-
                              > > where
                              > > there is internet access, making it possible for
                              > > me to
                              > > get with others and still be with Benjamin! I
                              > > remember that I never wanted to leave his side. I
                              > > wanted to see all the contact he had with
                              > > everyone,
                              > > and I wanted to know what he was going through at
                              > > all
                              > > times. I hated having to leave!! Eventually, I
                              > > began
                              > > to take short breaks with some other moms that I
                              > > met
                              > > there. Soon enough, it wasn't 'hard' to take the
                              > > breaks. I still hated leaving him, but it wasn't
                              > > hard
                              > > anymore (not like in the beginning, anyway).
                              > > There were only a couple of people in the NICU who
                              > > were positive about Benjamin and his prognosis-
                              > > everyone else was negative and they didn't hold
                              > > out
                              > > much hope for him. One of the neonatologists was
                              > > a
                              > > very caring, encouraging person who did not 'write
                              > > him
                              > > off', so to speak, like all the others did. I
                              > > also
                              > > remember one nurse who was very uplifting and had
                              > > a
                              > > good attitude about his future. The rest of them
                              > > just
                              > > were blank about him or they looked at us as if we
                              > > were fools for keeping him alive.
                              > > We celebrated EVERY little accomplishment with
                              > > great
                              > > joy!! When he lifted his little tiny leg, we
                              > > clapped
                              > > and cried and squealed with delight as we bragged
                              > > to
                              > > everyone around us about it, while videotaping.
                              > > Then,
                              > > we would rush out to a phone to call all of our
                              > > family
                              > > to let them know of his great achievement!! I
                              > > think
                              > > that this is a MUST, because nothing is "little"
                              > > with
                              > > these boys. Every breath they take and every move
                              > > they make is MAJOR- and worth celebrating!!! :o)
                              > > It is great that the entire family is there to
                              > > support
                              > > this child (and his parents)! This is so
                              > > important!!
                              > > A rock solid support network like that is
                              > > invaluable.
                              > > Keep encouraging your neice- it is so easy to get
                              > > down
                              > > about things. Especially in such an unsupportive
                              > > environment, and with the whole 'postpartum blues'
                              > > thing going on (potentially). Take her out to
                              > > lunch
                              > > (if she'll go- you may have to drag her out!)
                              > > Pamper
                              > > her as much as she will allow- she needs it. And
                              > > it
                              > > sounds like I don't need to tell you to love that
                              > > baby
                              > > like there is no tomorrow!! I know that he is a
                              > > sweet, precious boy. Congratulations on having
                              > > him to
                              > > love, and on getting to be a part of his life!!
                              > > Take
                              > > care. Abundant blessings to you all! Godspeed.
                              > > -Connie
                              > > --- Grooms4 <grooms4@c...> wrote:
                              > > > Thanks Connie for the your message. My nephew
                              > > was
                              > > > born on Oct 27. His name is beautiful but I will
                              > > > wait and let my niece share that if she chooses
                              > > to.
                              > > > She is spending all day at his bedside in the
                              > > NICU.
                              > > > This have been so hard for her as I am sure has
                              > > been
                              > > > for all who have been through this. He does not
                              > > have
                              > > > a trach but that has been brought up. At what
                              > > age
                              > > > did Benjamin get his trach? That is wonderful
                              > > that
                              > > > Benjamin is able to talk with his trach. There
                              > > is a
                              > > > specialist in the area that is going to look at
                              > > him
                              > > > soon. Hopefully my neice will be able to join
                              > > this
                              > > > group soon as for now she perfers to be by his
                              > > side
                              > > > talking to him. While Benjamin was in NICU did
                              > > the
                              > > > Doctors give you much hope? We try to stay
                              > > excited
                              > > > about the small improvements but sometimes that
                              > > can
                              > > > be hard. Thanks again for the information and
                              > > the
                              > > > kind words. It helps even me (just the great
                              > > aunt)
                              > > > to hear from people with some of same issues.
                              > > The
                              > > > entire family is concerned, worried and in love
                              > > with
                              > > > this wonderful child.
                              > > >
                              > > > ----- Original Message -----
                              > > > From: connie guinn
                              > > > To: Myotubular_Myopathy@yahoogroups.com
                              > > > Sent: Tuesday, December 02, 2003 2:58 PM
                              > > > Subject: Re: [Myotubular_Myopathy] Searching
                              > > for
                              > > > info
                              > > >
                              > > >
                              > > > Hello!
                              > > > I am glad that you found us! I am sorry to
                              > > hear
                              > > > that
                              > > > your great nephew has this diagnosis, but you
                              > > have
                              > > > come to a GREAT place to gather information.
                              > > What
                              > > > is
                              > > > your nephew's name? When was he born? I am
                              > > not
                              > >
                              > === message truncated ===
                              >
                              >
                              > =====
                              > Godspeed.
                              > -Connie
                              >
                              > __________________________________
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                            • Amanda
                              Jacob was fed breast milk for about 6 months and never had any digestion problems during that time. An upper GI (via ng tube) was done while he was still in
                              Message 14 of 17 , Dec 4, 2003
                                Jacob was fed breast milk for about 6 months and never had any
                                digestion problems during that time. An upper GI (via ng tube) was
                                done while he was still in the NICU, which was normal, but we agreed
                                to go ahead with the nissen fundoplication. When he was 11 months
                                old, he was diagnosed with a hiatal hernia and was put on Zantac. A
                                gastric emptying scan was also done; it was normal, so he wasn't
                                given Reglan. Two months later a liver function test was done and it
                                revealed very high enzyme levels, so he was switched from Zantac to
                                Pepcid. He has been on that since and has had no problems. He does
                                get constipated from time to time, but it is easily resolved with
                                some prunes or apple juice or milk of magnesia.

                                Hope this helps!
                                Amanda


                                --- In Myotubular_Myopathy@yahoogroups.com, "Grooms4" <grooms4@c...>
                                wrote:
                                > Connie,
                                >
                                > Thanks for the kind words.
                                >
                                >
                                > I have another question for the qroup: Did any of your babies have
                                trouble digesting?
                                >
                                > Thanks,
                                > Marva
                                >
                                > ----- Original Message -----
                                > From: connie guinn
                                > To: Myotubular_Myopathy@yahoogroups.com
                                > Sent: Wednesday, December 03, 2003 1:02 AM
                                > Subject: Re: [Myotubular_Myopathy] Searching for info
                                >
                                >
                                > Hello again!
                                > I understand completely. I spent every moment that I
                                > could at Benjamin's bedside when he was in the NICU.
                                > This was very hard because I had a 7 yr old daughter
                                > at home who was not allowed in except during certain
                                > hours on Sundays. It is, indeed, an extremely hard
                                > thing to go through- very exhausting (emotionaly and
                                > physically). It does get better, though. It
                                > sometimes seems like it never will get better, but it
                                > will. Sometimes it even seems as if nothing is wrong
                                > or hard, at all!!
                                > Benjamin got his trach and his g-button at the same
                                > time. It was when he was a month old. I hated the
                                > idea of it- it seemed so weird and abnormal. But, I
                                > also recognized that he would fare much better with it
                                > (and he did). It was good to get all the tape off and
                                > to see his face, finally. :o) It really was the best
                                > thing for him. And, it is vey common for them to
                                > learn to talk over their trachs. There are even
                                > valves that can be used to facilitate speaking (they
                                > are called Passey Muir valves- PMV's- and they can be
                                > used with or without a ventilator. Is your nephew on
                                > a ventilator?
                                > That would be excellent if your neice could join the
                                > group! When I was in the NICU (I lived there with
                                > Benjamin, you know!), I wasn't aware of much else
                                > around me except for my son. However, he has been
                                > hospitalized since being discharged from the NICU, and
                                > now I know that there are places for me to go- within
                                > the hospital (for when I take breaks from him)- where
                                > there is internet access, making it possible for me to
                                > get with others and still be with Benjamin! I
                                > remember that I never wanted to leave his side. I
                                > wanted to see all the contact he had with everyone,
                                > and I wanted to know what he was going through at all
                                > times. I hated having to leave!! Eventually, I began
                                > to take short breaks with some other moms that I met
                                > there. Soon enough, it wasn't 'hard' to take the
                                > breaks. I still hated leaving him, but it wasn't hard
                                > anymore (not like in the beginning, anyway).
                                > There were only a couple of people in the NICU who
                                > were positive about Benjamin and his prognosis-
                                > everyone else was negative and they didn't hold out
                                > much hope for him. One of the neonatologists was a
                                > very caring, encouraging person who did not 'write him
                                > off', so to speak, like all the others did. I also
                                > remember one nurse who was very uplifting and had a
                                > good attitude about his future. The rest of them just
                                > were blank about him or they looked at us as if we
                                > were fools for keeping him alive.
                                > We celebrated EVERY little accomplishment with great
                                > joy!! When he lifted his little tiny leg, we clapped
                                > and cried and squealed with delight as we bragged to
                                > everyone around us about it, while videotaping. Then,
                                > we would rush out to a phone to call all of our family
                                > to let them know of his great achievement!! I think
                                > that this is a MUST, because nothing is "little" with
                                > these boys. Every breath they take and every move
                                > they make is MAJOR- and worth celebrating!!! :o)
                                > It is great that the entire family is there to support
                                > this child (and his parents)! This is so important!!
                                > A rock solid support network like that is invaluable.
                                > Keep encouraging your neice- it is so easy to get down
                                > about things. Especially in such an unsupportive
                                > environment, and with the whole 'postpartum blues'
                                > thing going on (potentially). Take her out to lunch
                                > (if she'll go- you may have to drag her out!) Pamper
                                > her as much as she will allow- she needs it. And it
                                > sounds like I don't need to tell you to love that baby
                                > like there is no tomorrow!! I know that he is a
                                > sweet, precious boy. Congratulations on having him to
                                > love, and on getting to be a part of his life!! Take
                                > care. Abundant blessings to you all! Godspeed.
                                > -Connie
                                > --- Grooms4 <grooms4@c...> wrote:
                                > > Thanks Connie for the your message. My nephew was
                                > > born on Oct 27. His name is beautiful but I will
                                > > wait and let my niece share that if she chooses to.
                                > > She is spending all day at his bedside in the NICU.
                                > > This have been so hard for her as I am sure has been
                                > > for all who have been through this. He does not have
                                > > a trach but that has been brought up. At what age
                                > > did Benjamin get his trach? That is wonderful that
                                > > Benjamin is able to talk with his trach. There is a
                                > > specialist in the area that is going to look at him
                                > > soon. Hopefully my neice will be able to join this
                                > > group soon as for now she perfers to be by his side
                                > > talking to him. While Benjamin was in NICU did the
                                > > Doctors give you much hope? We try to stay excited
                                > > about the small improvements but sometimes that can
                                > > be hard. Thanks again for the information and the
                                > > kind words. It helps even me (just the great aunt)
                                > > to hear from people with some of same issues. The
                                > > entire family is concerned, worried and in love with
                                > > this wonderful child.
                                > >
                                > > ----- Original Message -----
                                > > From: connie guinn
                                > > To: Myotubular_Myopathy@yahoogroups.com
                                > > Sent: Tuesday, December 02, 2003 2:58 PM
                                > > Subject: Re: [Myotubular_Myopathy] Searching for
                                > > info
                                > >
                                > >
                                > > Hello!
                                > > I am glad that you found us! I am sorry to hear
                                > > that
                                > > your great nephew has this diagnosis, but you have
                                > > come to a GREAT place to gather information. What
                                > > is
                                > > your nephew's name? When was he born? I am not
                                > > familiar with any specialists in the Charlotte NC
                                > > or
                                > > East Coast area (I live near Houston, TX). There
                                > > are
                                > > lots of families who visit this site who are
                                > > parents
                                > > of boys born with x-linked Myotubular Myopathy, (I
                                > > am
                                > > one of them), and we share ALL SORTS of
                                > > information-
                                > > about how our boys are progressing, about their
                                > > abilities, about the meds they are on,about how
                                > > we
                                > > problem-solve through certain issues, we share
                                > > photos
                                > > of our kids, etc. It has been extremely helpful.
                                > > A
                                > > lot of us also communicate individually by Instant
                                > > Messaging one another. This has been a tremendous
                                > > boost for me, personally, and helps me to get a
                                > > better
                                > > handle on what my son,Benjamin, needs. It also
                                > > helps
                                > > me to know that I am not the only one out there
                                > > dealing with this. A lot of good support can be
                                > > found here. Can your niece join this group,
                                > > perhaps?
                                > > That would be great! She is welcome here. Feel
                                > > free
                                > > to ask any specific questions you may have:o)
                                > > Take
                                > > care. Godspeed.
                                > > -Connie
                                > >
                                > > P.S. My son, Benjamin, is 14 months old. He was
                                > > in
                                > > the NICU for 2 1/2 months. He had a muscle biopsy
                                > > and
                                > > genetic testing done at the University of Chicago,
                                > > confirming his diagnosis. He has a trach and a
                                > > g-button (for feeding). He is currently on a
                                > > ventilator for 23 hours and 15 minutes a day. He
                                > > does
                                > > not have an effective blink, so we put rewetting
                                > > drops
                                > > in his eyes every hour. He does not have an
                                > > effective
                                > > swallow, so he is tube fed, mostly. Occupational
                                > > therapy is working on his swallow. He is just
                                > > starting to exhibit trunk control, and he can hold
                                > > his
                                > > head up for a few minutes at a time. When
                                > > prompted,
                                > > he can roll from side to side. He talks over his
                                > > trach- he laughs, he cries, he babbles, he says
                                > > mama,
                                > > dada, no-no, yes, etc. He knows his colors, he
                                > > knows
                                > > the difference between all of his animal bath
                                > > toys.
                                > > His favorite tv shows are Sesame Street and
                                > > Zaboomafu!
                                > > I hope this is helpful to you.
                                > > -Connie
                                > >
                                > > --- minyturtle <grooms4@c...> wrote:
                                > > > My great nephew who was born a little over 3
                                > > weeks
                                > > > ago. Has been
                                > > > diagnosis with Myotubular Myopathy. We are
                                > > trying to
                                > > > locate a
                                > > > specialist in the Charlotte NC area or East
                                > > Coast.
                                > > > We would also like
                                > > > information from other families who are in the
                                > > same
                                > > > situation. Any
                                > > > information would be greatly appreicated.
                                > > >
                                > > >
                                > > >
                                > >
                                > >
                                > > =====
                                > > Godspeed.
                                > > -Connie
                                > >
                                > > __________________________________
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                                > >
                                > >
                                > >
                                > >
                                > > To unsubscribe from this group, send an email to:
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                                > >
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                                > >
                                > > Your use of Yahoo! Groups is subject to the Yahoo!
                                > > Terms of Service.
                                > >
                                >
                                >
                                > =====
                                > Godspeed.
                                > -Connie
                                >
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                              • redscootee@webtv.net
                                Amanda, Happy b day Jacob!!! What a big guy you are getting to be. Soon you will be two and mommy has the terrible twos to look forward to. lol Just kidding! I
                                Message 15 of 17 , Dec 4, 2003
                                  Amanda,
                                  Happy b day Jacob!!! What a big guy you are getting to be. Soon you will
                                  be two and mommy has the terrible twos to look forward to. lol Just
                                  kidding!
                                  I see more and more the parents are making things happen for their
                                  children. Jacob, as well as other children on this list. have proven the
                                  medical staff wrong time and again. Chances of them leading a decent
                                  life is much more possible today.
                                  The other thing to keep in mind is that a lot of the medical ppl do not
                                  know a lot about mtm. I find when you or a loved one is dx'd with it you
                                  are much more apt to find out everything you can to make the best
                                  decisions.
                                  JMHO
                                  take care pat
                                • redscootee@webtv.net
                                  Shannon, Just had to tell you I finally got Javad s site added on ours last nite. I was reading his venture to the store for picture taking. So glad he has
                                  Message 16 of 17 , Dec 4, 2003
                                    Shannon, Just had to tell you I finally got Javad's site added on ours
                                    last nite. I was reading his venture to the store for picture taking. So
                                    glad he has gotten you to make funny faces at him!!! Boy is he ever
                                    growing. I sure hope you were able to get the family picture on Sunday!
                                    I can imagine how tired he was. What a busy week he has had. Really held
                                    up well to get as many taken as you did.
                                    Still can't get over all his hair! (S)
                                    take care pat
                                  • connie guinn
                                    Pat, thanks for the kind words. You are very encouraging. Blessings to you. Godspeed. -Connie ... ===== Godspeed. -Connie
                                    Message 17 of 17 , Dec 4, 2003
                                      Pat, thanks for the kind words. You are very
                                      encouraging. Blessings to you. Godspeed.
                                      -Connie
                                      --- redscootee@... wrote:
                                      > Connie, Your email really touched my heart to the
                                      > great aunt about
                                      > celebrating every accomplishment and staying
                                      > positive. Benjamin is a
                                      > lucky young fellow to have such a loving caring
                                      > mommy.
                                      > take care pat
                                      >
                                      >


                                      =====
                                      Godspeed.
                                      -Connie

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