Loading ...
Sorry, an error occurred while loading the content.

Re: [Myotubular_Myopathy] response to questions

Expand Messages
  • connie guinn
    Kristin, Now I know what you are talking about!! That s interesting that in Denver you call that procedure a nissen. Here (Texas) it is called a
    Message 1 of 18 , Nov 4, 2003
    • 0 Attachment
      Kristin,
      Now I know what you are talking about!! That's
      interesting that in Denver you call that procedure a
      nissen. Here (Texas) it is called a fundoplication
      (fundo, for short). Most all the boys I know of have
      had one, all except for Benjamin. Gotten any snow
      yet? Godspeed.
      -Connie
      --- myrkrida <myrkrida@...> wrote:
      > Hi Everyone!
      >
      > It has been a hectic few days, but I wanted to post
      > some answers to
      > queries that other people have made.
      >
      > In response to the question regarding a nissen: A
      > nissen is the word
      > used to describe an operation in which a part of the
      > stomach is
      > wrapped around the esophagus. It helps to prevent
      > reflux, and here
      > in Denver, they do it as a matter of course when a
      > g-tube is put in.
      >
      > In response to the location question, I live in
      > sunny Denver,
      > Colorado! =)
      >
      > In response to the medication question, Sebastian
      > isn't currently
      > taking medicine, but he has a neb and takes
      > albuterol when he needs it
      > (for instance, when he has a cold). We also have
      > given him zantac
      > (for reflux).
      >
      > In addition to answering these questions, I also
      > wanted to thank
      > everyone for their help in describing a stander. I
      > will be sure to
      > ask Sebi's OT about this when we see her later this
      > week!
      >
      > It is so great to see so many messages on the board!
      > I posted a pic
      > of Sebastian, in his Halloween costume! =)
      >
      > Thank you all for the continued support!
      >
      > Kristin
      >
      >


      __________________________________
      Do you Yahoo!?
      Protect your identity with Yahoo! Mail AddressGuard
      http://antispam.yahoo.com/whatsnewfree
    • smashintwo66
      Hi Kristin and Connie! In Oregon, they also call it a nissen (although fundoplication is also used!). Javad doesn t have it done. We are hoping to avoid it!
      Message 2 of 18 , Nov 4, 2003
      • 0 Attachment
        Hi Kristin and Connie!

        In Oregon, they also call it a nissen (although fundoplication is
        also used!). Javad doesn't have it done. We are hoping to avoid
        it! He currently takes Prilosec and Reglan for his reflux. he is
        still taking some other meds which he took with the misdiagnosis,
        but I am fighting to keep him on them. I think they really have
        helped his strength.

        Today has been pretty rough (not with Javad...he's doing stellar!).
        My daughter is having a really hard time. Sometimes I feel like we
        are in a pressure cooker and I am just watching to see who will
        blow. Tonight I am not feeling like a very stellar mom. I am just
        pretty bummed!

        Shannon
      • connie guinn
        Shannon, Do you have Yahoo Messenger -Connie ... __________________________________ Do you Yahoo!? Protect your identity with Yahoo! Mail AddressGuard
        Message 3 of 18 , Nov 4, 2003
        • 0 Attachment
          Shannon,
          Do you have Yahoo Messenger
          -Connie
          --- smashintwo66 <smashintwo66@...> wrote:
          > Hi Kristin and Connie!
          >
          > In Oregon, they also call it a nissen (although
          > fundoplication is
          > also used!). Javad doesn't have it done. We are
          > hoping to avoid
          > it! He currently takes Prilosec and Reglan for his
          > reflux. he is
          > still taking some other meds which he took with the
          > misdiagnosis,
          > but I am fighting to keep him on them. I think they
          > really have
          > helped his strength.
          >
          > Today has been pretty rough (not with Javad...he's
          > doing stellar!).
          > My daughter is having a really hard time. Sometimes
          > I feel like we
          > are in a pressure cooker and I am just watching to
          > see who will
          > blow. Tonight I am not feeling like a very stellar
          > mom. I am just
          > pretty bummed!
          >
          > Shannon
          >
          >


          __________________________________
          Do you Yahoo!?
          Protect your identity with Yahoo! Mail AddressGuard
          http://antispam.yahoo.com/whatsnewfree
        • Jessica Juckers
          Hi all, I have been so busy lately, when I get in to check emails I am too tired to reply. I think its fantastic that this group is communicating such much
          Message 4 of 18 , Nov 5, 2003
          • 0 Attachment

            Hi all,

             

            I have been so busy lately, when I get in to check emails I am too tired to reply.

            I think its fantastic that this group is communicating such much lately!

             

            Talking about nissen and fundoplication, here we call it a “Nissen Fundoplication” I guess everywhere is different!

             

            Jack has finally moved into a bed today, Our boys sure long aren’t they?

            It was sad for me to see him move into a big bed, as that Cot was jack home for over a year.

             

            In response to questions, Jack is on Benzhexol which is the equivalent to robinal for secretions.

            He is also on citric nitrate to help flush his kidneys as he has a kidney stone.

            Because of Jacks lack of movement his was diagnosed with Hypercalcemia and Hypercalcuria, the calcium is leaking from his bones and large amounts are going through his kidney and liver, The doctors put him on Citric nitrate to help it flush, however he still got a 1-2mm stone.

            Jack gets a 65ml flush of water every 3 hours, to keep him urinating to stop the build up of calcium, thus hoping to get rid of and gaining anymore stones.  Jacks bones are a little brittle as a result of this, he had any broken bones. We are hoping a stander in the future will help him put pressure on his bones, and retaining the calcium in his bones.

             

            We are still going ahead slowly with our plan to get Jack home by Christmas. It seems endless.

             

            Take care

             

            Jessica

             

          • smashintwo66
            Connie, I don t know if I have Yahoo messanger...how do I find out? Shannon
            Message 5 of 18 , Nov 5, 2003
            • 0 Attachment
              Connie,

              I don't know if I have Yahoo messanger...how do I find out?

              Shannon
            • Amanda
              Sebastian is so cute! I love the costume. Unfortunately, we didn t dress up Jacob this year. It is still so hot and humid here in FL and he can hardly stand
              Message 6 of 18 , Nov 5, 2003
              • 0 Attachment
                Sebastian is so cute! I love the costume. Unfortunately, we didn't
                dress up Jacob this year. It is still so hot and humid here in FL
                and he can hardly stand to wear his clothes half the time. Last
                year he was Eeyore, but only for a few hours. I think next year
                will be better.

                Take care!
                Amanda


                --- In Myotubular_Myopathy@yahoogroups.com, "myrkrida"
                <myrkrida@y...> wrote:
                > Hi Everyone!
                >
                > It has been a hectic few days, but I wanted to post some answers
                to
                > queries that other people have made.
                >
                > In response to the question regarding a nissen: A nissen is the
                word
                > used to describe an operation in which a part of the stomach is
                > wrapped around the esophagus. It helps to prevent reflux, and
                here
                > in Denver, they do it as a matter of course when a g-tube is put
                in.
                >
                > In response to the location question, I live in sunny Denver,
                > Colorado! =)
                >
                > In response to the medication question, Sebastian isn't currently
                > taking medicine, but he has a neb and takes albuterol when he
                needs it
                > (for instance, when he has a cold). We also have given him zantac
                > (for reflux).
                >
                > In addition to answering these questions, I also wanted to thank
                > everyone for their help in describing a stander. I will be sure
                to
                > ask Sebi's OT about this when we see her later this week!
                >
                > It is so great to see so many messages on the board! I posted a
                pic
                > of Sebastian, in his Halloween costume! =)
                >
                > Thank you all for the continued support!
                >
                > Kristin
              • Amanda
                Jess, I am hoping very much for you guys to have Jack home by Christmas. That would be so nice. I know you would be so happy. As for our boys being so long -
                Message 7 of 18 , Nov 5, 2003
                • 0 Attachment
                  Jess, I am hoping very much for you guys to have Jack home by
                  Christmas. That would be so nice. I know you would be so happy.

                  As for our boys being so long - WHEW! Jacob is 37 inches long. His
                  crib is almost too small, but we are hesitant to put him in a twin
                  bed just yet. Not only is the crib the perfect height for us to
                  work with him, but I am scared he will roll off of the bed. I think
                  we still have a few more months to go, but it definitely makes me
                  think.

                  Take care. I hope to catch you online tomorrow morning.

                  Amanda


                  --- In Myotubular_Myopathy@yahoogroups.com, "Jessica Juckers"
                  <jessnmark@i...> wrote:
                  > Hi all,
                  >
                  > I have been so busy lately, when I get in to check emails I am too
                  tired
                  > to reply.
                  > I think its fantastic that this group is communicating such much
                  lately!
                  >
                  > Talking about nissen and fundoplication, here we call it a "Nissen
                  > Fundoplication" I guess everywhere is different!
                  >
                  > Jack has finally moved into a bed today, Our boys sure long aren't
                  they?
                  >
                  > It was sad for me to see him move into a big bed, as that Cot was
                  jack
                  > home for over a year.
                  >
                  > In response to questions, Jack is on Benzhexol which is the
                  equivalent
                  > to robinal for secretions.
                  > He is also on citric nitrate to help flush his kidneys as he has a
                  > kidney stone.
                  > Because of Jacks lack of movement his was diagnosed with
                  Hypercalcemia
                  > and Hypercalcuria, the calcium is leaking from his bones and large
                  > amounts are going through his kidney and liver, The doctors put
                  him on
                  > Citric nitrate to help it flush, however he still got a 1-2mm
                  stone.
                  > Jack gets a 65ml flush of water every 3 hours, to keep him
                  urinating to
                  > stop the build up of calcium, thus hoping to get rid of and gaining
                  > anymore stones. Jacks bones are a little brittle as a result of
                  this,
                  > he had any broken bones. We are hoping a stander in the future
                  will help
                  > him put pressure on his bones, and retaining the calcium in his
                  bones.
                  >
                  > We are still going ahead slowly with our plan to get Jack home by
                  > Christmas. It seems endless.
                  >
                  > Take care
                  >
                  > Jessica
                • connie guinn
                  If you have a yahoo account, you can just click on My Yahoo at the top. Then, on the next screen that comes up, on the left hand side, midway down, ther is
                  Message 8 of 18 , Nov 5, 2003
                  • 0 Attachment
                    If you have a yahoo account, you can just click on
                    "My Yahoo" at the top. Then, on the next screen that
                    comes up, on the left hand side, midway down, ther is
                    a menu list- click on launch messenger, then follow
                    the directions for setting up an account. Then, you
                    can add 'buddies' to your friends list. Then you can
                    set up person chatting times with people. Godspeed.
                    -Connie
                    --- smashintwo66 <smashintwo66@...> wrote:
                    > Connie,
                    >
                    > I don't know if I have Yahoo messanger...how do I
                    > find out?
                    >
                    > Shannon
                    >
                    >


                    __________________________________
                    Do you Yahoo!?
                    Protect your identity with Yahoo! Mail AddressGuard
                    http://antispam.yahoo.com/whatsnewfree
                  • redscootee@webtv.net
                    Kristin, How precious Sebastian looks in his giraffe costume! Did someone make it for you? Sure is clever and he looks so cute in it. tx for sharing. take care
                    Message 9 of 18 , Nov 5, 2003
                    • 0 Attachment
                      Kristin,
                      How precious Sebastian looks in his giraffe costume! Did someone make it
                      for you? Sure is clever and he looks so cute in it. tx for sharing. take
                      care pat
                    • redscootee@webtv.net
                      Shannon, WOW a girl would kill to have Javad s hair. He is certainly a handsome young man. He is going to make the girls swoon with his dark hair and eyes when
                      Message 10 of 18 , Nov 5, 2003
                      • 0 Attachment
                        Shannon,
                        WOW a girl would kill to have Javad's hair. He is certainly a handsome
                        young man. He is going to make the girls swoon with his dark hair and
                        eyes when he gets older! (S).
                        Sorry to hear you had a rough time with your daughter. BTDT I hope your
                        day goes better tomorrow. We all have a down day from time to time.
                        Don't be too hard on yourself. Sometimes you just have to have a little
                        me time...do something you enjoy.
                        take care pat
                      • redscootee@webtv.net
                        Jessica, Prayers going your way on that Jack will be home by Christmas. What a handsome young fellow he is. Just got around to viewing all the pictures on the
                        Message 11 of 18 , Nov 5, 2003
                        • 0 Attachment
                          Jessica,
                          Prayers going your way on that Jack will be home by Christmas.
                          What a handsome young fellow he is. Just got around to viewing all the
                          pictures on the site today. Like you said he sure is long! Wow moving to
                          a bed. I hope he adjusts to it quickly.
                          The pillows you have behind his head are really neat. Where did you get
                          them or did someone make them for you. I have been looking for one like
                          that for myself.
                          again tx for sharing the pics. take care pat
                        • smashintwo66
                          Pat, Thank you. Today things are a bit better...just sometimes... Javad does have the hair. I need to cut it at least once a month or he gets Kramer Hair.
                          Message 12 of 18 , Nov 5, 2003
                          • 0 Attachment
                            Pat,

                            Thank you. Today things are a bit better...just sometimes...

                            Javad does have the hair. I need to cut it at least once a month or
                            he gets "Kramer Hair." (from the show Seinfeld!).. We laugh because
                            he looks like the wild afro-man!

                            He's a doll though. We say the same thing...the girls will swoon!


                            Shannon
                          • Jessica Juckers
                            Hi Pat, Thanks for your email, You asked about the pillows behind Jacks head, you saw on his webpage. We call them penut pillows they are fantastic! I will
                            Message 13 of 18 , Nov 6, 2003
                            • 0 Attachment

                              Hi Pat,

                               

                              Thanks for your email,

                              You asked about the pillows behind Jacks head, you saw on his webpage. We call them penut pillows they are fantastic!

                              I will have to get a pattern for them and scan them and send it to you. They really are great.

                              I must ask the someone  as our OT refuses to give it to us as she thinks Jacks shouldn’t be using them as he “needs to learn head control” (she is hopeless and has no idea) The PICU secretary makes them for us from her own pattern to made up. I’ll get a copy.

                               

                              I would love to put you site lisiting on my website (myotubularmyopathy.org) once I fix it, I broke a line in the html and I need a few spare hours to sit and fix it, may take weeks. Sorry L

                               

                              Take care pat

                               

                              Jessica

                               

                              -----Original Message-----
                              From: redscootee@... [mailto:redscootee@...]
                              Sent: Thursday, 6 November 2003 2:45 PM
                              To: Myotubular_Myopathy@yahoogroups.com
                              Subject: Re: [Myotubular_Myopathy] response to questions ( a little late)

                               

                              Jessica,
                              Prayers going your way on that Jack will be home by Christmas.
                              What a handsome young fellow he is. Just got around to viewing all the
                              pictures on the site today. Like you said he sure is long! Wow moving to
                              a bed. I hope he adjusts to it quickly.
                              The pillows you have behind his head are really neat. Where did you get
                              them or did someone make them for you. I have been looking for one like
                              that for myself.
                              again tx for sharing the pics. take care pat



                              To unsubscribe from this group, send an email to:
                              Myotubular_Myopathy-unsubscribe@egroups.com



                              Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                            • Amanda
                              Jess, I have been meaning to ask you about the web page...thanks for clearing that up. I thought you shut it down or something. ... webpage. ... you. ...
                              Message 14 of 18 , Nov 6, 2003
                              • 0 Attachment
                                Jess, I have been meaning to ask you about the web page...thanks for
                                clearing that up. I thought you shut it down or something.

                                --- In Myotubular_Myopathy@yahoogroups.com, "Jessica Juckers"
                                <jessnmark@i...> wrote:
                                > Hi Pat,
                                >
                                > Thanks for your email,
                                > You asked about the pillows behind Jacks head, you saw on his
                                webpage.
                                > We call them penut pillows they are fantastic!
                                > I will have to get a pattern for them and scan them and send it to
                                you.
                                > They really are great.
                                > I must ask the someone as our OT refuses to give it to us as she
                                thinks
                                > Jacks shouldn't be using them as he "needs to learn head control"
                                (she
                                > is hopeless and has no idea) The PICU secretary makes them for us
                                from
                                > her own pattern to made up. I'll get a copy.
                                >
                                > I would love to put you site lisiting on my website
                                > (myotubularmyopathy.org) once I fix it, I broke a line in the html
                                and I
                                > need a few spare hours to sit and fix it, may take weeks. Sorry :-
                                (
                                >
                                > Take care pat
                                >
                                > Jessica
                                >
                                > -----Original Message-----
                                > From: redscootee@w... [mailto:redscootee@w...]
                                > Sent: Thursday, 6 November 2003 2:45 PM
                                > To: Myotubular_Myopathy@yahoogroups.com
                                > Subject: Re: [Myotubular_Myopathy] response to questions ( a little
                                > late)
                                >
                                > Jessica,
                                > Prayers going your way on that Jack will be home by Christmas.
                                > What a handsome young fellow he is. Just got around to viewing all
                                the
                                > pictures on the site today. Like you said he sure is long! Wow
                                moving to
                                > a bed. I hope he adjusts to it quickly.
                                > The pillows you have behind his head are really neat. Where did
                                you get
                                > them or did someone make them for you. I have been looking for one
                                like
                                > that for myself.
                                > again tx for sharing the pics. take care pat
                                >
                                >
                                >
                                >
                                >
                                > Yahoo! Groups Sponsor
                                >
                                >
                                > ADVERTISEMENT
                                >
                                >
                                <http://rd.yahoo.com/M=267637.4116730.5333196.1261774/D=egroupweb/S=1
                                705
                                >
                                061589:HM/A=1754451/R=0/SIG=11tm86fb5/*http:/www.netflix.com/Default?
                                mqs
                                > o=60178323&partid=4116730> click here
                                >
                                >
                                > <http://us.adserver.yahoo.com/l?
                                M=267637.4116730.5333196.1261774/D=egrou
                                > pmail/S=:HM/A=1754451/rand=206962166>
                                >
                                > To unsubscribe from this group, send an email to:
                                > Myotubular_Myopathy-unsubscribe@egroups.com
                                >
                                >
                                >
                                > Your use of Yahoo! Groups is subject to the Yahoo!
                                > <http://docs.yahoo.com/info/terms/> Terms of Service.
                              • Jessica Juckers
                                Hi Amanda, I just made a big boo boo somewhere LOL I was change the script form and it went crazy on me! I might look at it over the weekend.. Take care
                                Message 15 of 18 , Nov 6, 2003
                                • 0 Attachment

                                  Hi Amanda,

                                   

                                  I just made a big boo boo somewhere LOL I was change the script form and it went crazy on me!

                                   

                                  I might look at it over the weekend..

                                   

                                  Take care

                                   

                                  Jessica

                                   

                                  -----Original Message-----
                                  From: Amanda [mailto:dhahjh@...]
                                  Sent:
                                  Friday, 7 November 2003 12:18 AM
                                  To: Myotubular_Myopathy@yahoogroups.com
                                  Subject: [Myotubular_Myopathy] Re: Response to questions (Jacks pillows)

                                   

                                  Jess, I have been meaning to ask you about the web page...thanks for
                                  clearing that up.  I thought you shut it down or something.

                                  --- In Myotubular_Myopathy@yahoogroups.com, "Jessica Juckers"
                                  <jessnmark@i...> wrote:
                                  > Hi Pat,

                                  > Thanks for your email,
                                  > You asked about the pillows behind Jacks head, you saw on his
                                  webpage.
                                  > We call them penut pillows they are fantastic!
                                  > I will have to get a pattern for them and scan them and send it to
                                  you.
                                  > They really are great.
                                  > I must ask the someone  as our OT refuses to give it to us as she
                                  thinks
                                  > Jacks shouldn't be using them as he "needs to learn head control"
                                  (she
                                  > is hopeless and has no idea) The PICU secretary makes them for us
                                  from
                                  > her own pattern to made up. I'll get a copy.

                                  > I would love to put you site lisiting on my website
                                  > (myotubularmyopathy.org) once I fix it, I broke a line in the html
                                  and I
                                  > need a few spare hours to sit and fix it, may take weeks. Sorry :-
                                  (

                                  > Take care pat

                                  > Jessica

                                  > -----Original Message-----
                                  > From: redscootee@w... [mailto:redscootee@w...]
                                  > Sent:
                                  Thursday, 6 November 2003 2:45 PM
                                  > To: Myotubular_Myopathy@yahoogroups.com
                                  > Subject: Re: [Myotubular_Myopathy] response to questions ( a little
                                  > late)

                                  > Jessica,
                                  > Prayers going your way on that Jack will be home by Christmas.
                                  > What a handsome young fellow he is. Just got around to viewing all
                                  the
                                  > pictures on the site today. Like you said he sure is long! Wow
                                  moving to
                                  > a bed. I hope he adjusts to it quickly.
                                  > The pillows you have behind his head are really neat. Where did
                                  you get
                                  > them or did someone make them for you. I have been looking for one
                                  like
                                  > that for myself.
                                  > again tx for sharing the pics. take care pat
                                  >
                                  >
                                  >
                                  >
                                  >
                                  > Yahoo! Groups Sponsor
                                  >
                                  >
                                  > ADVERTISEMENT

                                  >
                                  <http://rd.yahoo.com/M=267637.4116730.5333196.1261774/D=egroupweb/S=1
                                  705
                                  >
                                  061589:HM/A=1754451/R=0/SIG=11tm86fb5/*http:/www.netflix.com/Default?
                                  mqs
                                  > o=60178323&partid=4116730> click here
                                  >

                                  > <http://us.adserver.yahoo.com/l?
                                  M=267637.4116730.5333196.1261774/D=egrou
                                  > pmail/S=:HM/A=1754451/rand=206962166>
                                  >
                                  > To unsubscribe from this group, send an email to:
                                  > Myotubular_Myopathy-unsubscribe@egroups.com
                                  >
                                  >
                                  >
                                  > Your use of Yahoo! Groups is subject to the Yahoo!
                                  > <http://docs.yahoo.com/info/terms/>  Terms of Service.



                                  To unsubscribe from this group, send an email to:
                                  Myotubular_Myopathy-unsubscribe@egroups.com



                                  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                                • redscootee@webtv.net
                                  Shannon, I will never look at Kramer again without thinking fondly of Javad. (S) I look forward to the stories of swooning girls. I bet you won t have too
                                  Message 16 of 18 , Nov 7, 2003
                                  • 0 Attachment
                                    Shannon, I will never look at 'Kramer' again without thinking fondly of
                                    Javad. (S)
                                    I look forward to the stories of swooning girls. I bet you won't have
                                    too much longer and they will be falling at his feet.
                                    Daycare...kindergarten...take care pat
                                  • redscootee@webtv.net
                                    Jessica, No rush on getting the pattern for the pillows. You just take care of your precious Jack. (GRRRR) I would like to see the OT sit in one position all
                                    Message 17 of 18 , Nov 7, 2003
                                    • 0 Attachment
                                      Jessica, No rush on getting the pattern for the pillows. You just take
                                      care of your precious Jack.
                                      (GRRRR) I would like to see the OT sit in one position all day without a
                                      pillow and see how she fairs. I bet she could not do it.
                                      From my own experience being in a chair since 95 comfort is not always
                                      easy to come by so anything to help is an added bonus. Well that is my 2
                                      cent and I guess you can tell what I think of her advice. lol
                                      Let me know when you get your web site up and running again. You can add
                                      ours to yours and I will add yours to ours.
                                      take care pat
                                    Your message has been successfully submitted and would be delivered to recipients shortly.