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marconi

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  • rachel wriglry
    just and inquiery did and of the children ever have problems feeding during summer weather and did there breathe different ... Yahoo! Messenger NEW - crystal
    Message 1 of 15 , Jul 11, 2005
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      just and inquiery did and of the children ever have problems feeding during summer weather and did there breathe different


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    • Amanda Hollingsworth
      Jacob has never had a problem with feedings during the summer, but his breathing patterns change sometimes during the hot, humid months. He usually requires
      Message 2 of 15 , Jul 11, 2005
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        Jacob has never had a problem with feedings during the summer, but his breathing patterns change sometimes during the hot, humid months.  He usually requires more vent support during the summertime.
         
        Hope this helps!
         
        Amanda 
         
        -------Original Message-------
         
        Date: 07/11/05 08:27:09
        Subject: [Myotubular_Myopathy] marconi
         
        just and inquiery did and of the children ever have problems feeding during summer weather and did there breathe different


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      • ANN MILLER
        Hi Rachel, Kyle has never had any problems with feeding during the summer. He does have problems with breathing. Humidty, rain, high temperatures all require
        Message 3 of 15 , Jul 11, 2005
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          Hi Rachel,
          Kyle has never had any problems with feeding during the summer.  He does have problems with breathing.  Humidty, rain, high temperatures all require more suctioning and being on the vent more.
           
          Hope everything is ok with your boys.
           
          Darlene
          ----- Original Message -----
          Sent: Monday, July 11, 2005 8:27 AM
          Subject: [Myotubular_Myopathy] marconi

          just and inquiery did and of the children ever have problems feeding during summer weather and did there breathe different


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        • Anne McAuliffe
          Rachel Feeding always affects Tom s breathing. Because he uses his diaphram more than his intercostal muscles to push air in and out of his lungs, if his
          Message 4 of 15 , Jul 12, 2005
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            Rachel
            Feeding always affects Tom's breathing. Because he uses his diaphram more
            than his intercostal muscles to push air in and out of his lungs, if his
            stomach contents don't go through easily and quickly then his breathing
            becomes very badly affected. The only link to the hot weather that I can
            think of is that maybe when we're hot we don't digest as easily - certainly
            our appetites go down when we're hot don't they?

            When Tom turned one he was moved on to normal paediatric milk feeds
            (Paedasure and Nutrini were tried) His breathing became so badly affected
            even though we were still mixiing it with his infant formula and he wasn't
            getting 100% paediatric feed. One night he had a late feed that was 100%
            Paedasure and he literally couldn't breathe when he was asleep. His sats
            kept dropping to the 70s unless his nurse kept tapping and touching him -
            i.e. stopping him from going into a deep sleep. After a few hours of this
            it suddenly dawned on her what the cause might be and she drained his
            stomach contents - his sats went up to 100% immediately and he settled into
            a very deep comfortable sleep. We have since moved him onto a very broken
            down feed - i.e. one that doesn't need as much digestion by the body and all
            the strange de-sats and breathing episodes that seemed to be 'inexplicable'
            went away overnight. This might not be anything to do with MTM as Tom's
            sister has a dairy intolerance where she can't digest things like cheese so
            he may just not be able to digest complex foods for other reasons.

            Slightly separate note, we give Tom masses of water and particulary in the
            heat. It makes a big difference to his secretions and his overall comfort.
            Even though he's only just about to be 2 he gets 2L of fluid (Milk and
            water) in a day. But you'd need to check with doctors before you do
            anything


            Hope this helps
            Anne


            -----Original Message-----
            From: Myotubular_Myopathy@yahoogroups.com
            [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel wriglry
            Sent: 11 July 2005 13:27
            To: Myotubular_Myopathy@yahoogroups.com
            Subject: [Myotubular_Myopathy] marconi

            just and inquiery did and of the children ever have problems feeding during
            summer weather and did there breathe different

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          • rachel_wrigley
            marconi isnt too well his chest is really rattley was bad yesterday nearly choked twice i feel useless i do his chest physio seems to help a little but not
            Message 5 of 15 , Oct 13, 2005
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              marconi isnt too well his chest is really rattley was bad yesterday
              nearly choked twice i feel useless i do his chest physio seems to
              help a little but not much we have started his antibiotics my
              husband went to the hospital yesterday to speak to the doctors about
              how things where done when regan was born like when i was pregnant
              with marconi i should have been monitered a lot closer but wasnt he
              ask them to take a look at marconi and guess what THERE SAID NO they
              told him to take marconi to a&e but we diecided to bring him home
              and care for him at home he seems a lot better when hes sat up to
              when hes lyed down because hes coughing too hes sick sometimes

              marconi got christened on sunday it went well not many people turned
              up but we all enjoyed our selfs

              regans phyiso called yesterday there going to try something called
              robound for him and hes going to have hydrothepy too which i think
              he will enjoy
              hope everyones well and ok all take care
              rachel
            • rachel_wrigley
              its his first birthday YESTERDAY 1ST OF JANUARARY
              Message 6 of 15 , Jan 1, 2006
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                its his first birthday YESTERDAY 1ST OF JANUARARY
              • DARLENE MILLER
                Rachel, Give Marconi a big hug and kiss for us. Tell him we said Happy Birthday. Darlene ... From: rachel_wrigley To:
                Message 7 of 15 , Jan 1, 2006
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                  Rachel,
                   
                  Give Marconi a big hug and kiss for us.  Tell him we said Happy Birthday.
                   
                  Darlene
                  ----- Original Message -----
                  Sent: Sunday, January 01, 2006 7:48 PM
                  Subject: [Myotubular_Myopathy] marconi

                  its his first birthday YESTERDAY 1ST OF JANUARARY






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                • rachel_wrigley
                  hes doing well hes back to the marconi we know and love we just have to wait for the speech and launage therpist to look at him and tell us things we already
                  Message 8 of 15 , Jan 6, 2006
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                    hes doing well hes back to the marconi we know and love we just have
                    to wait for the speech and launage therpist to look at him and tell us
                    things we already know! he can take from the bottle.we going to get an
                    ng tube so we can feed marconi at night to try and put him a bit of
                    weight on what there dont understand is kids with this condition are
                    thin any way and there trying to say marconi is under weight beacuse
                    of the things we giving him but there dont understand that hes had
                    back to back illnessess and hasnt had the chance to recover and put
                    the weight on we hope to have him hom for the weekend fingers crossed
                    lol
                  • Wendy
                    We re so relieved for you that Marconi is getting better. This was the same with Zak, he would lose a lot of weight when he was unwell and then in between
                    Message 9 of 15 , Jan 6, 2006
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                      We’re so relieved for you that Marconi is getting better.  This was the same with Zak, he would lose a lot of weight when he was unwell and then in between bouts of illness I would “feed him up” to get his weights back up.  It’s always been a battle, although in recent years he has continued to eat during chest infections and this is less of a problem these days.  You might consider to add “high calorie” powder to his drinks or solid foods too (this can be prescribed by the hospital).  Also, give him high-fat yoghurts (if he can eat them now and tolerate dairy?), you can also add cream or butter to his pureed food to help put weight on him.  This sounds drastic, I know, but it’s the only way we’ve managed to keep Zak’s weights up over the years!  The other thing that was useful for Zak was to add Vitaquick (a thickening powder) to his fluids as he tolerated thicker fluids better than thin fluids.  This was until he was about 4 years old and then we only used it to thicken fluids when he was unwell (when he is more prone to choking/chest infection).  Like I mentioned before, the rotational prophylactic antibiotics stopped him from getting any nasty pneumonia/lung collapse.  Beware of using an ng tube too much, because it can actually cause damage long-term, but maybe if he has it only when he is unwell to get feeds into him that will help and not be a problem.  We tried ng tube with Zak when he was unwell (aged 18 months) and he just pulled it out, so we gave up!  The other thing for both your boys is to have a “protocol” in place at nursery/home for dealing with choking.  We had a specialist come out to show teachers and ourselves how to deal with choking.  This was also written up so they knew exactly what to do.  Hopefully your boys won’t suffer any choking episodes: but boys with MTM who feed by mouth are really “at risk” and should never be allowed to eat or drink anything unsupervised (you should also consider putting this in any statement for special educational needs.  As Zak has grown older we have a sign (he gives a C sign with his fingers) if he is having a problem choking…(because he can’t speak, he chokes silently (!) and it would be unsafe for him to do so anyway if he was choking) fortunately he’s only had to do the sign once and he was able to swallow the food by putting his chin down onto his chest and swallowing hard.  This is obviously for when Marconi is older, but it closes the trachea and opens up the oesophagus.  I think I sent you the “safe eating” advice.  If you don’t have it, I will resend?

                      Take care and hope Marconi is home soon.

                      Wendy x

                       

                       

                      -----Original Message-----
                      From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel_wrigley
                      Sent: 06 January 2006 09:41
                      To: Myotubular_Myopathy@yahoogroups.com
                      Subject: [Myotubular_Myopathy] marconi

                       

                      hes doing well hes back to the marconi we know and love we just have
                      to wait for the speech and launage therpist to look at him and tell us
                      things we already know! he can take from the bottle.we going to get an
                      ng tube so we can feed marconi at night to try and put him a bit of
                      weight on what there dont understand is kids with this condition are
                      thin any way and there trying to say marconi is under weight beacuse
                      of the things we giving him but there dont understand that hes had
                      back to back illnessess and hasnt had the chance to recover and put
                      the weight on we hope to have him hom for the weekend fingers crossed
                      lol




                    • kristin cypher
                      Hi Rachel: I m so glad to hear that Marconi is doing better!! I think that Wendy had some great feeding advice (and Wendy, could you please send me the safe
                      Message 10 of 15 , Jan 6, 2006
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                        Hi Rachel:
                         
                        I'm so glad to hear that Marconi is doing better!!  I think that Wendy had some great feeding advice (and Wendy, could you please send me the 'safe eating' advice?  I think it would be a great help!), and I wanted to add that we also have had great success with adding Flax Oil to Sebi's purees and yogurts.  Here in the states, you can buy it at an organic grocery store (like Whole Foods), in the refrigerated section.  It is bascially a high-calorie protein/ligan oil, and since we've added it to Sebi's purees he has put on more weight and just been more healthy.  He's been on it for over a year, so I can also advise it for the long-term!  I wish I had better/more advice, but it's just so great to hear that Marconi is doing better, and you're right, these boys ARE thin, so what is 'normal' weight for Marconi may seem low to others.
                         
                        Take care!
                        Kristin

                        Wendy <wendyhughes@...> wrote:
                        We’re so relieved for you that Marconi is getting better.  This was the same with Zak, he would lose a lot of weight when he was unwell and then in between bouts of illness I would “feed him up” to get his weights back up.  It’s always been a battle, although in recent years he has continued to eat during chest infections and this is less of a problem these days.  You might consider to add “high calorie” powder to his drinks or solid foods too (this can be prescribed by the hospital).  Also, give him high-fat yoghurts (if he can eat them now and tolerate dairy?), you can also add cream or butter to his pureed food to help put weight on him.  This sounds drastic, I know, but it’s the only way we’ve managed to keep Zak’s weights up over the years!  The other thing that was useful for Zak was to add Vitaquick (a thickening powder) to his fluids as he tolerated thicker fluids better than thin fluids.  This was until he was about 4 years old and then we only used it to thicken fluids when he was unwell (when he is more prone to choking/chest infection).  Like I mentioned before, the rotational prophylactic antibiotics stopped him from getting any nasty pneumonia/lung collapse.  Beware of using an ng tube too much, because it can actually cause damage long-term, but maybe if he has it only when he is unwell to get feeds into him that will help and not be a problem.  We tried ng tube with Zak when he was unwell (aged 18 months) and he just pulled it out, so we gave up!  The other thing for both your boys is to have a “protocol” in place at nursery/home for dealing with choking.  We had a specialist come out to show teachers and ourselves how to deal with choking.  This was also written up so they knew exactly what to do.  Hopefully your boys won’t suffer any choking episodes: but boys with MTM who feed by mouth are really “at risk” and should never be allowed to eat or drink anything unsupervised (you should also consider putting this in any statement for special educational needs.  As Zak has grown older we have a sign (he gives a C sign with his fingers) if he is having a problem choking…(because he can’t speak, he chokes silently (!) and it would be unsafe for him to do so anyway if he was choking) fortunately he’s only had to do the sign once and he was able to swallow the food by putting his chin down onto his chest and swallowing hard.  This is obviously for when Marconi is older, but it closes the trachea and opens up the oesophagus.  I think I sent you the “safe eating” advice.  If you don’t have it, I will resend?
                        Take care and hope Marconi is home soon.
                        Wendy x
                         
                         
                        -----Original Message-----
                        From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel_wrigley
                        Sent: 06 January 2006 09:41
                        To: Myotubular_Myopathy@yahoogroups.com
                        Subject: [Myotubular_Myopathy] marconi
                         
                        hes doing well hes back to the marconi we know and love we just have
                        to wait for the speech and launage therpist to look at him and tell us
                        things we already know! he can take from the bottle.we going to get an
                        ng tube so we can feed marconi at night to try and put him a bit of
                        weight on what there dont understand is kids with this condition are
                        thin any way and there trying to say marconi is under weight beacuse
                        of the things we giving him but there dont understand that hes had
                        back to back illnessess and hasnt had the chance to recover and put
                        the weight on we hope to have him hom for the weekend fingers crossed
                        lol






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                      • Kimberly Kowalski
                        i am glad to hear that marconi is doing better! it is such a relief when they start to act more like the boy you know they are :) keep up the hard work
                        Message 11 of 15 , Jan 6, 2006
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                          i am glad to hear that marconi is doing better! it is
                          such a relief when they start to act more like the boy
                          you know they are :)

                          keep up the hard work marconi,
                          k

                          --- rachel_wrigley <rachel_wrigley@...> wrote:

                          > hes doing well hes back to the marconi we know and
                          > love we just have
                          > to wait for the speech and launage therpist to look
                          > at him and tell us
                          > things we already know! he can take from the
                          > bottle.we going to get an
                          > ng tube so we can feed marconi at night to try and
                          > put him a bit of
                          > weight on what there dont understand is kids with
                          > this condition are
                          > thin any way and there trying to say marconi is
                          > under weight beacuse
                          > of the things we giving him but there dont
                          > understand that hes had
                          > back to back illnessess and hasnt had the chance to
                          > recover and put
                          > the weight on we hope to have him hom for the
                          > weekend fingers crossed
                          > lol
                          >
                          >
                          >
                          >




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                        • kristin cypher
                          Such great news!!! I m SO glad he is on the mend!! Kristin, Paul and Sebi rachel_wrigley wrote: hes doing well hes back to the
                          Message 12 of 15 , Jan 6, 2006
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                            Such great news!!!  I'm SO glad he is on the mend!!
                             
                            Kristin, Paul and Sebi

                            rachel_wrigley <rachel_wrigley@...> wrote:
                            hes doing well hes back to the marconi we know and love we just have
                            to wait for the speech and launage therpist to look at him and tell us
                            things we already know! he can take from the bottle.we going to get an
                            ng tube so we can feed marconi at night to try and put him a bit of
                            weight on what there dont understand is kids with this condition are
                            thin any way and there trying to say marconi is under weight beacuse
                            of the things we giving him but there dont understand that hes had
                            back to back illnessess and hasnt had the chance to recover and put
                            the weight on we hope to have him hom for the weekend fingers crossed
                            lol





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                          • rachel_wrigley
                            hes still in hospital he was picking up intill saturday night when he destated to 71% there not sure why hes doing this he been doing it now for the past few
                            Message 13 of 15 , Jan 17, 2006
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                              hes still in hospital he was picking up intill saturday night when
                              he destated to 71% there not sure why hes doing this he been doing
                              it now for the past few nights he didnt do it last night
                              the phyiso are still coming there told us yesterday a little bit of
                              his lung has collapsed but there hoping it will inflate by it self
                              we hoping too we mention cpap for him the doctors says we are a long
                              way off that yet hes back on feeds as there stopped then as he had
                              been sick hes now been fitted with an nj tube instead of his ng he
                              had a videoflospy book for thursday i dont think this will go ahead
                              we will have to see how he goes from now till thursday we have spent
                              the most of this winter in hospital marconi has been isolated hes
                              got his own room he also has open acess to the ward now too the
                              doctors are finally pulling there fingers and doing somethings for
                              him hes pilling the weight on too when he was first ill he weight
                              just over 13lb he now weights just over 16lb he looks a lot better
                              from the wight hes put on
                              just thought id let you all know how hes doing and ill update you
                              all on his progress
                              thanks all
                              rachel&moz&boys
                            • Shannon
                              Hi Rachel, I am sorry that Marconi is not picking up quickly! I would continue to ask for some type of repiratory therapy for Marconi. It would help reinflate
                              Message 14 of 15 , Jan 17, 2006
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                                Hi Rachel,

                                I am sorry that Marconi is not picking up quickly! I would continue to
                                ask for some type of repiratory therapy for Marconi. It would help
                                reinflate the part of his lung is collapsed. I hope he starts making
                                progress soon!

                                Shannon
                              • rachel_wrigley
                                Marconi is 2 tommorrow its like celebratring his 1st birthday again he was in icu last year for his 1st birthday
                                Message 15 of 15 , Dec 31, 2006
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                                  Marconi is 2 tommorrow its like celebratring his 1st birthday again he
                                  was in icu last year for his 1st birthday
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