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update on regan and marconi

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  • rachel_wrigley
    marconi has fully recovered now he had is rsv in jection last week so he shouldnt get ill over the winter period his phyiso came yesterday she said hes doing
    Message 1 of 15 , Nov 1, 2005
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      marconi has fully recovered now he had is rsv in jection last week so
      he shouldnt get ill over the winter period
      his phyiso came yesterday she said hes doing good hes trying to hold
      his head on his own he can do it for 18 secounds so im so proud of him

      as for regan hes broke his arm jordan jumped on him and landed on his
      arm whats scarey is the doctors said he might need his bone pushing
      back in place which i think he might need to be put to sleep for
      marconis physio said she would ring through and let the doctor know of
      the dangers and putting him to sleep i hope this dosent happen she
      also said if there did put him to sleep there was going to do the
      muscle biopsy at the same time
      we still havent heard anything from the dna place its been ages there
      sent his blood of in may this year
      hope everyones ok
    • Wendy
      Hi Rachel So pleased to hear how well Marconi is doing - well done him!! Poor little Regan, we are sorry that he has broken his arm. Zak has had 2 operations
      Message 2 of 15 , Nov 1, 2005
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        Hi Rachel

        So pleased to hear how well Marconi is doing – well done him!!

        Poor little Regan, we are sorry that he has broken his arm.  Zak has had 2 operations now and has been absolutely fine with general anaesthetics both times, despite my worry.  Providing you are with a good, reputable hospital with PCU unit, he should be in good hands.  I would just check with them that they are aware of the complications of anaethetics with MTM and mention the risks.  I think I may have sent you a paper on anesthetics (with the big pile of information on MTM), so it might we worthwhile you photocopying that and giving it to his surgeon.  I’m sure it has probably been updated now – but it will hopefully register with them and give you some peace of mind.  I hope everything goes okay and will be thinking of little Regan.

        Take care, love Wendy and Zak.

         

        -----Original Message-----
        From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel_wrigley
        Sent:
        01 November 2005 09:45
        To: Myotubular_Myopathy@yahoogroups.com
        Subject: [Myotubular_Myopathy] update on regan and marconi

         

        marconi has fully recovered now he had is rsv in jection last week so
        he shouldnt get ill over the winter period
        his phyiso came yesterday she said hes doing good hes trying to hold
        his head on his own he can do it for 18 secounds so im so proud of him

        as for regan hes broke his arm jordan jumped on him and landed on his
        arm whats scarey is the doctors said he might need his bone pushing
        back in place which i think he might need to be put to sleep for
        marconis physio said she would ring through and let the doctor know of
        the dangers and putting him to sleep i hope this dosent happen she
        also said if there did put him to sleep there was going to do the
        muscle biopsy at the same time
        we still havent heard anything from the dna place its been ages there
        sent his blood of in may this year
        hope everyones ok







      • Anne McAuliffe
        Dear Rachel Sorry to hear Marconi has been sick - I didn t have access to my email for a couple of weeks and have just read what has been happening. Do you
        Message 3 of 15 , Nov 1, 2005
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          Dear Rachel
          Sorry to hear Marconi has been sick - I didn't have access to my email for a
          couple of weeks and have just read what has been happening.

          Do you have a community nurse? The UK government has had as part of its
          health policy for a number of years the goal of trying to have people with
          long term issues nursed at home wherever possible. To enable that to happen
          there are people called community nurses, in effect just like a midwife
          after you have a baby, they come out to your house regularly to give you
          advice and help and most importantly they are your link to all the other
          services you need - paediatrician, occupational therapist, speeech therapist
          etc. We had a number of community nurses when Tom was born whose specialitiy
          was children with physical conditions and it didn't work - Tom's breathing
          pattern scared the life out of them and they each became more of a problem
          than a help. We then insisted on a community nurse with a respiratory
          specialism and she is a wonder. Children with breathing difficulties are
          totally 'normal' to her and she has great experience and advice.

          The other thing that a community nurse should be accessing for you is
          respite help i.e. a certain number of hours of nursing support in your
          house. We get 40 hours a week from the NHS - and we only have one boy with
          mtm! We use it for night nursing, and when Tom is sick, boy do they have a
          full time job overnight. If you haven't been given this support do
          ask/insist - it is your right as a carer. I'm happy to help with 'evidence'
          of why the family of a child with MTM needs this.

          By the way Tom had his muscle biopsy under local anasthetic

          Good luck and hope Marconi stays well.
          Anne
          PS Another thing - getting everyone to wash their hands with antibacterial
          soap when they come in to the house EVERY time will reduce the chance of
          bringing in bugs (colds and flus are transmitted mostly on the hands and the
          germs can stay alive on surfaces for some silly amount of hours - can't
          remember how many) and although Tom gets the RSV immunisation, other viruses
          knock him for six too

          -----Original Message-----
          From: Myotubular_Myopathy@yahoogroups.com
          [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel_wrigley
          Sent: 01 November 2005 09:45
          To: Myotubular_Myopathy@yahoogroups.com
          Subject: [Myotubular_Myopathy] update on regan and marconi

          marconi has fully recovered now he had is rsv in jection last week so
          he shouldnt get ill over the winter period
          his phyiso came yesterday she said hes doing good hes trying to hold
          his head on his own he can do it for 18 secounds so im so proud of him

          as for regan hes broke his arm jordan jumped on him and landed on his
          arm whats scarey is the doctors said he might need his bone pushing
          back in place which i think he might need to be put to sleep for
          marconis physio said she would ring through and let the doctor know of
          the dangers and putting him to sleep i hope this dosent happen she
          also said if there did put him to sleep there was going to do the
          muscle biopsy at the same time
          we still havent heard anything from the dna place its been ages there
          sent his blood of in may this year
          hope everyones ok










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        • kristin cypher
          Hi Rachel: I am so, so sorry to hear that Regan broke his arm! I agree with Wendy that he should be okay under general anesthesia, as long as the person
          Message 4 of 15 , Nov 1, 2005
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            Hi Rachel:
             
            I am so, so sorry to hear that Regan broke his arm!  I agree with Wendy that he should be okay under general anesthesia, as long as the person administering the anesthesia understands the risks associated with MTM.  Sebi (my 2 1/2 year old son with MTM) has had several operations that required anesthesia, and each time they used a much 'weaker' dose than normal, and Sebi did great.
             
            Kristin

            rachel_wrigley <rachel_wrigley@...> wrote:
            marconi has fully recovered now he had is rsv in jection last week so
            he shouldnt get ill over the winter period
            his phyiso came yesterday she said hes doing good hes trying to hold
            his head on his own he can do it for 18 secounds so im so proud of him

            as for regan hes broke his arm jordan jumped on him and landed on his
            arm whats scarey is the doctors said he might need his bone pushing
            back in place which i think he might need to be put to sleep for
            marconis physio said she would ring through and let the doctor know of
            the dangers and putting him to sleep i hope this dosent happen she
            also said if there did put him to sleep there was going to do the
            muscle biopsy at the same time
            we still havent heard anything from the dna place its been ages there
            sent his blood of in may this year
            hope everyones ok







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          • Amanda Hollingsworth
            OOHHH! I m so sorry Regan s arm is broken. Hope it s better soon! As for anesthesia, Jacob has been under 7-8 times (I think I ve lost count) and never had
            Message 5 of 15 , Nov 2, 2005
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              OOHHH!  I'm so sorry Regan's arm is broken.  Hope it's better soon!  As for anesthesia, Jacob has been under 7-8 times (I think I've lost count) and never had a problem.  Yes, it is good to make the dr aware of the effects the anesthetic can have on him, but as someone else mentioned, a "milder" medication can be used.  That is what was done with Jacob, and he was monitored much more closely after each procedure.
               
              Amanda

              rachel_wrigley <rachel_wrigley@...> wrote:
              marconi has fully recovered now he had is rsv in jection last week so
              he shouldnt get ill over the winter period
              his phyiso came yesterday she said hes doing good hes trying to hold
              his head on his own he can do it for 18 secounds so im so proud of him

              as for regan hes broke his arm jordan jumped on him and landed on his
              arm whats scarey is the doctors said he might need his bone pushing
              back in place which i think he might need to be put to sleep for
              marconis physio said she would ring through and let the doctor know of
              the dangers and putting him to sleep i hope this dosent happen she
              also said if there did put him to sleep there was going to do the
              muscle biopsy at the same time
              we still havent heard anything from the dna place its been ages there
              sent his blood of in may this year
              hope everyones ok








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            • Maurizio
              Marconi has been in hospital with bronchiolitis, he spent a week in hospital and took about another week to fully recover at home, he is now doing well. Regan
              Message 6 of 15 , Dec 20, 2005
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                Marconi has been in hospital with bronchiolitis, he spent a week in
                hospital and took about another week to fully recover at home, he is
                now doing well.

                Regan also contracted the same virus but as he is older and stronger
                it was more like a common flu and he is now better too.

                Sorry we have not posted for a while, we have just moved house in
                mid Nov and it has taken a bit of time to get the net back on, what
                with Marconi being in hospital and stuff.

                Marconi and Regan are looking forward to Christmas (it will be
                Marconi's first) its also Marconi's first birthday on new years day
                so he will have more toys and presents then he knows what to do
                with, Regan is starting nursery in the new year so there is lots for
                us to look forward too in the coming weeks.

                Hope you are all well

                Love Moz & Rachel
              • Wendy
                Poor little man. glad he s better now and home for Christmas! There has been a very nasty virus going around, and Zak too was knocked flat for a week,
                Message 7 of 15 , Dec 21, 2005
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                  Poor little man… glad he’s better now and home for Christmas!  There has been a very nasty virus going around, and Zak too was “knocked flat” for a week, missing his Christmas school play (after I’d spent ages making his costume too!!).  Hope your house move was successful and pleased to hear about Regan’s nursery place… things are looking up!  I’m so pleased for you.

                  Wendy x

                   

                  -----Original Message-----
                  From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Maurizio
                  Sent:
                  20 December 2005 19:07
                  To: Myotubular_Myopathy@yahoogroups.com
                  Subject: [Myotubular_Myopathy] update on regan and marconi

                   

                  Marconi has been in hospital with bronchiolitis, he spent a week in
                  hospital and took about another week to fully recover at home, he is
                  now doing well.

                  Regan also contracted the same virus but as he is older and stronger
                  it was more like a common flu and he is now better too.

                  Sorry we have not posted for a while, we have just moved house in
                  mid Nov and it has taken a bit of time to get the net back on, what
                  with Marconi being in hospital and stuff.

                  Marconi and Regan are looking forward to Christmas (it will be
                  Marconi's first) its also Marconi's first birthday on new years day
                  so he will have more toys and presents then he knows what to do
                  with, Regan is starting nursery in the new year so there is lots for
                  us to look forward too in the coming weeks.

                  Hope you are all well

                  Love Moz & Rachel





                • rachel_wrigley
                  hello everyone we not written for ages so i thought id let you all know how the boys are doing: marconi is getting big now he starting to stand with surpport
                  Message 8 of 15 , Jul 3, 2006
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                    hello everyone we not written for ages so i thought id let you all
                    know how the boys are doing:
                    marconi is getting big now he starting to stand with surpport ,can sit
                    unaided hes a happy little chap loves being out in his buggie he
                    enjoyed our holiday we been back 3 weeks i didnt want to come home lol
                    he also putting weight on too hes still being fed by ng tube he has to
                    have another video flopsy done to see if he still asperaring the
                    speech therpist listened to his thraot and said he sounded better then
                    before so things are looking up he enjoys his baby walker must feel
                    nice to be able to get around. we just hope this winter is a better
                    one for marconi and regan fingers crossed

                    regan is still much the same hes still not talking,hes doing really
                    good with his makaton signing hes not as frusated as he was as he
                    feels he can now commuicate with us he attends nursey 5 days a week
                    just for 2 hours a day he enjoys it we have just had some new hand
                    rails on the stairs to help regan get up and down better he gets up a
                    lot quicker now.
                    we still have to wait for regans muscle byopis not heard anything yet
                    as if we havent waited long eough,regan too enjoyed the holiday as did
                    jordan i dont really mention him much hes my eldest son hes 8 yrs old
                    and not got the condition we home school jordan now as the school
                    didnt really understand our situation with regan and marconi but it
                    seems to working out ok he enjoys being at home

                    hope everyones ok and well
                    take care
                    rachel,moz
                    jordan and regan and marconi
                  • rachel_wrigley
                    there went to the hospital fro there rouitne appointment the doctors was very pleased with them both marconi is now trying stand on his own regan has now got
                    Message 9 of 15 , Sep 7, 2006
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                      there went to the hospital fro there rouitne appointment the doctors
                      was very pleased with them both marconi is now trying stand on his own
                      regan has now got shoes to help him not walk on his toes there nice
                      there look better then i thought there would just hope it helps him
                      marconi goes back in today for his videoflopsy we hope hes not
                      asperating no more if he isnt then we still going to keep the ng tube
                      nad pump for the winter and if he gets ill we can feed him straight
                      with that just thought id let you all know ill write more later after
                      we come back form the hospital
                      take care everyone
                      rachel /moz and boys
                    • Wendy
                      Hi Rachel, Moz and boys So pleased to hear that the little ones are doing so very well. Hope the results of the videofluroscopy are encouraging - Zak s
                      Message 10 of 15 , Sep 11, 2006
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                        Hi Rachel, Moz and boys

                        So pleased to hear that the little ones are doing so very well.  Hope the results of the videofluroscopy are encouraging – Zak’s definitely improved with time.  Do you thicken his fluids with Vitaquick – as this helps too.  Also freezing cold fluids have higher viscosity than room temperature

                        (Message over 64 KB, truncated)

                      • rachel_wrigley
                        there still a little ill there have been left with a cough and marconi has secretions we seem to suction him and after about 2 mins sometimes not even that
                        Message 11 of 15 , Nov 6, 2007
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                          there still a little ill there have been left with a cough and marconi
                          has secretions we seem to suction him and after about 2 mins sometimes
                          not even that there back anyideas which might help them clear quicker
                          etc at night hes so quite u carnt even the hear the secretion the his
                          thaot and its not till morning that he starts coughing once he starts
                          moving around im so scared why is he like this ?he dosent seem to be
                          bothered about them either he seems ok in himself still up to mischeif
                          snd regan went bk to skool today
                        • rachel_wrigley
                          we have for an appointment at the hospital 2 day and the doc looked at marconis tube and said it was fine we also was told regan now has to have a g tube too
                          Message 12 of 15 , Jun 5, 2008
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                            we have for an appointment at the hospital 2 day and the doc looked at
                            marconis tube and said it was fine we also was told regan now has to
                            have a g tube too he keeps losing weight hes lost 5 lb in the past 2
                            mths im getting very concerned about him now im not too sure how long
                            the appointment is going to be

                            we also going to get a small wheel chair for regan and he also needs
                            night time splints im glad someone has finally listened to me and the
                            docs are sorting regan out hes been left too long fingers crossed he
                            has the op soon then he can start and put some weight bk on


                            sorry to hear about the boys that all ill im wishing then a speedy
                            recover
                            Rachel
                          • rachel_wrigley
                            we took regan for his assessment for his wheel chair its going to be ready in 6 weeks or so we got on with big wheels then he can push himself along and can be
                            Message 13 of 15 , Jul 3, 2008
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                              we took regan for his assessment for his wheel chair its going to be
                              ready in 6 weeks or so we got on with big wheels then he can push
                              himself along and can be pushed if his little arems get tierd we still
                              not got a date for his g tube op im hoping its in the school holidays
                              then school wont complain about him having time off school

                              as for marconi hes doing well he starts nursey in september its been a
                              night mare trying to sort things out for him we wasnt sure that the
                              school was going to take him causes hes still in nappies but there fine
                              with that i said id try and potty train him over the school holidays we
                              seem to getting things sorted its slow but we getting there
                            • Sheallyn
                              Congrats on getting a chair for Regan, I hope he likes it! Good luck with school as well ... ps, how s Marconi doing? take care
                              Message 14 of 15 , Jul 3, 2008
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                                Congrats on getting a chair for Regan, I hope he likes it! Good luck
                                with school as well ... ps, how's Marconi doing?

                                take care
                              • rachel_wrigley
                                ... hes getting a commication device to help with his talking and he will be able to use this in school too he starts nursey in september
                                Message 15 of 15 , Jul 4, 2008
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                                  --- In Myotubular_Myopathy@yahoogroups.com, "Sheallyn" <sheallyn73@...>
                                  wrote:
                                  >hiya marconi is doing well
                                  hes getting a commication device to help with his talking and he will
                                  be able to use this in school too he starts nursey in september

                                  > Congrats on getting a chair for Regan, I hope he likes it! Good luck
                                  > with school as well ... ps, how's Marconi doing?
                                  >
                                  > take care
                                  >
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