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Re: Nursing

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  • Amanda
    Rita, I forgot to answer your nursing question. Until this past February, we never had nursing at our request. We were approved for up to 16 hours a day,
    Message 1 of 9 , Jun 11, 2004
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      Rita, I forgot to answer your nursing question. Until this past
      February, we never had nursing at our request. We were approved for
      up to 16 hours a day, but I really enjoyed taking care of him and my
      husband is a huge help. And we don't have any other children, so
      that makes it easier. However, we now get three, 8-hour shifts per
      week. This allows time for me to do things and get out a bit. I
      will also be returning to graduate school in August, so I will need
      the nursing then. When Jacob starts school next year, he will
      probably have a full-time nurse to attend with him. Hopefully, we
      can keep his current nurse.

      Take care, Amanda

      --- In Myotubular_Myopathy@yahoogroups.com, "ANN MILLER"
      <dm4462@m...> wrote:
      > Hi Rita,
      >
      > Glad to hear from you again! Tobias is a cutie! Tell him we
      would love to see more pictures of him.
      >
      > Sorry to hear you lost your first son, Adrian. I know this must
      be a sad time of year for you. I'm glad you
      > have kept him still in your family's memory. That is a good
      thing, even though he is gone he is still in
      > your heart.
      >
      > Don't give up looking for a school. They don't know what these
      boys are capable of doing. They've been
      > labeled as handicapped, that's all that the teachers see. There
      has to be one that will see Tobias as his
      > bright little self and not as a handicap. These boys are very
      bright. It makes me extremely mad when
      > I'm told Kyle can't or will not be able to do something. I love
      it when he does, especially in front of the
      > people who said he couldn't.
      >
      > We can get 12 hours a day nursing, but are unable to find one that
      will take care of him where we live.
      > We lived in the country and they said it was too far of a drive
      for them, there was not much around for
      > about 20 miles. We moved in December to a small town setting,
      rescue squad 500 yards away, local
      > hospital 10 miles away, grocery stores and Walmart all within 4
      miles , 7-11 just down the street, etc,
      > but were still too far away. That is ok, because I have loved
      taking care of him myself. A nurse would
      > only upset of schedule and our outings. The school is already
      trying to find someone for when he starts in
      > January. If they can't, then I'll go with him.
      >
      > Kyle talks a little by putting his finger over his trach, but we
      are in the process of getting the passy muir.
      > His doctor is down sizing his trach so he can get more air to his
      vocal cords. But he can say dada, nana,
      > hi, Kay-Kay (his sister) and Allen (his cousin) just by using his
      finger. His cousin, Allen has Downs Syndrome,
      > he has taken to Kyle just like a brother, always worring about
      Kyle.
      >
      > Is Tobias wheelchair manual or power? How old was he when he
      started using it? We are in the process of
      > trying to get Kyle one, he has outgrown his kidcart. The doctor
      wants him to have a manual chair, his
      > therapist wants him to have a power chair. I think he should have
      one that is used both ways. That way he
      > can use it manual at home and when he feels strong enough to do it
      and power for at school and doctors
      > visits.
      >
      > Take care,
      >
      > Darlene
      >
      >
      >
      >
      >
      >
      >
      >
      >
      > ----- Original Message -----
      > From: Susekie@a...<mailto:Susekie@a...>
      > To:
      Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoog
      roups.com>
      > Sent: Thursday, June 10, 2004 8:09 PM
      > Subject: [Myotubular_Myopathy] Hi everyone!
      >
      >
      > Hi All!
      >
      > Thank you for welcoming me so kindly! I'm happy that I found
      this group - and I'm wondering why I didn't find it before!
      >
      > I would like to present my son Tobias, so I added a photo that
      was made in Kindergarten last September. I hope, I can send a newer
      one soon - he doesn't like making pictures... ;-)
      >
      > Compared to the boys I read about my son seems to be old... Does
      anyone join this group whose son was born in 1997 or before?
      >
      > One thing I want to share, too (I actually forgot to tell you):
      Tobias is not our first child - in June, 1996 his elder brother
      Adrian died during birth. We didn't no anything about MTMX and
      nobody could explain us why he could not live. Later, when Tobias
      already was about a year old, the geneticist found out that also
      Adrian was affected with MTMX. We're loving and missing him - he is
      a part of our family, too. And I think he is keeping an eye on his
      brother and sister - wherever he is... :-)
      >
      >
      > Shannon: Certainly, I like to help you or your daughter in
      learning German, if I can! Now, again I'm realizing that it's very
      easy to understand a foreign language (while reading mails...) - to
      speak or write it is more difficult (I love my dictionary)! So, ask
      me, if you want to! (maybe directly?)
      > Sign language we tried, too, when Tobias was younger. He hardly
      used it, so we stopped teaching him. :-(
      >
      > Amanda: I would like to send Tobias to an public school. Here,
      the teachers (and those other people who decide about) think and say
      it is unpossible to teach a ventilator dependend, non-speaking and
      wheelchair using boy together with "normal" kids! Not even the
      school for disabled children likes to take him, because they start
      learning writing and reading right from the beginning - and
      Tobias "won't be able to"! How do they know??? The same people also
      think it should going to be usual to integrate (only) mentally
      handicapped children in "normal" schools...it is really ashamed! We
      have to wait and see - and hope, HE will make his way!
      >
      > Darlene: I think those teachers here have only few intelligence -
      not my son! ;-) We start with a new logopedist next week. It seems
      to be an engaged man who - let's see, how Tobias does.. Last year a
      psychologist told us that Tobias has very few or almost none
      intelligence - he had been testing him!!! But nobody shares his
      opinion - neither the other therapists nor our nurses nor Tobias'
      Mom and Dad! I hope the teachers won't be of this opinion!
      >
      > Toni: My friends know ONE website about Nemaline Myopathy, but
      would you please send me the link to my e-mail-adress? Thank you!!!
      I hope your father and you are doing well - you are the first adults
      I heard from! Although, I know that there are different forms of
      Centronuclear Myopathy. You are from England, aren't you? (hello
      Europe! :-) )
      >
      > Connie: Our "favourite" nurse is called Connie, too! :-) I had
      to take English in school - many, many years ago! And before joining
      this group I did not really have to use it...but I like to!!! :-)
      I've seen pictures of Benjamin (posted on the website of this
      group) - he looks like Tobias, when he was a baby! I will check up
      our photos - and show you! I know that in Germany is one boy with
      MTMX who is 17 years old! Another one died unfortunately und
      suddenly when he was 17. But in our area there is no other affected
      family!
      >
      > Janice - and especially Matthew: I read you had a wonderful
      birthday - best belated wishes from Germany!!! I hope, Matthew is
      doing well.
      >
      > Pat: Duchenne's and some other muscular dystrophies are more
      known in Germany than MTMX. Every doctor thinks of a dystrophy when
      hearing our son has MTMX. I know some of those German families with
      affected children who do not have problems with schools, but those
      children are not on vent and can speak... And: each land in Germany
      has it own rules - in the south it may be easy to integrate
      handicapped children - in the north it doesn't work. I don't know
      why... But thank you!!
      >
      > @All:
      > How much nursering do you get because of ventilated boys? Tobias
      goes to kindergarten accompanied by a nurse and at home we get
      nursering for not more than 5,5 hours a day, not at night. Tobias
      normally is doing well at night - he is sleeping and sleeping, so we
      could sleep, too.
      >
      > Does anybody use the passy muir valve (or know anyone using it)?
      We think about buying it, because it seems the only way to make
      Tobias speak while being ventilated, but we don't know, if it will
      work.
      >
      > Take care,
      > Rita
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    • redscootee@webtv.net
      Janice, Loved the pictures of Matthew s shona buggy. Nice you will be able to get out and about more. Thanks for sharing. take care pat
      Message 2 of 9 , Jun 15, 2004
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        Janice, Loved the pictures of Matthew's shona buggy. Nice you will be
        able to get out and about more. Thanks for sharing.
        take care pat
      • Shannon
        Hello everyone! I know it has seemed like ages since I have come online. I just read the messages from the last week. Scott, Stacyanne & Mason- Welcome to this
        Message 3 of 9 , Jul 23, 2004
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          Hello everyone!

          I know it has seemed like ages since I have come online. I just read
          the messages from the last week.

          Scott, Stacyanne & Mason- Welcome to this group. It is a wonderful
          and supportive place. YOur son sounds much like my son Javad (and
          Jacob, Kyle, Benjamin, Jack, Matthew and so on!) Javad was not
          diagnosed with Centronuclear Myopathy (MTM) until last October. He
          was thought to have myotonic dystrophy when in the NICU and had the
          diagnosis of Congential Myasthenia Gravis for almost 2 years. He was
          diagnosed after a muscle biopsy. Javad also has osteoporosis which
          was diagnosed after a femur fracture last year. Javad gets
          pamidronate, similar to a high powered fosomax, every two months. It
          is a 3 day- 4 hours per day infusion. I can give you more information
          if you are interested. Again, welcome!

          Amanda- I hope that Jacob's eye drs have great wisdom. I have been
          thinking about you!

          Connie- Thanks for everything! :)

          Javad is still in the hospital. On Sunday, they took him off the vent
          and had to reintubate him within the hour. He was having a difficult
          time breathing, was fighting the bipap, and his co2 skyrocketed to
          138 within 45 minutes. When they went to reintubate, he passed out!
          I was very frustrated. They begaon fervently talking about the trach
          (as if they hadn't earlier in the week!) and decided to do a
          bronchoscopy on Wednesday to see what was going on. They gave him
          steroids for two days to take down the suspected swelling and told us
          that we would do the trach during the same procedure if necessary
          (they thought it probably was!) On wednesday they went and looked, no
          swelling, NO TRACH! Javad is doing fine so far...on bipap for part
          of the day. We are weaning his time day by day and maybe will get out
          of here next week. I am ready for a summer vacation!

          Thanks for all your prayers. Javad felt them and so did we!

          Talk to you soon!

          Shannon
        • connie guinn
          Shannon, YAY, for Javad!!!!! -Connie Shannon wrote: Hello everyone! I know it has seemed like ages since I have come online. I just
          Message 4 of 9 , Jul 23, 2004
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            Shannon,

            YAY, for Javad!!!!!

            -Connie



            Shannon <smashintwo66@...> wrote:
            Hello everyone!

            I know it has seemed like ages since I have come online. I just read
            the messages from the last week.

            Scott, Stacyanne & Mason- Welcome to this group. It is a wonderful
            and supportive place. YOur son sounds much like my son Javad (and
            Jacob, Kyle, Benjamin, Jack, Matthew and so on!) Javad was not
            diagnosed with Centronuclear Myopathy (MTM) until last October. He
            was thought to have myotonic dystrophy when in the NICU and had the
            diagnosis of Congential Myasthenia Gravis for almost 2 years. He was
            diagnosed after a muscle biopsy. Javad also has osteoporosis which
            was diagnosed after a femur fracture last year. Javad gets
            pamidronate, similar to a high powered fosomax, every two months. It
            is a 3 day- 4 hours per day infusion. I can give you more information
            if you are interested.  Again, welcome!

            Amanda- I hope that Jacob's eye drs have great wisdom. I have been
            thinking about you!

            Connie- Thanks for everything! :)

            Javad is still in the hospital. On Sunday, they took him off the vent
            and had to reintubate him within the hour. He was having a difficult
            time breathing, was fighting the bipap, and his co2 skyrocketed to
            138 within 45 minutes. When they went to reintubate, he passed out! 
            I was very frustrated. They begaon fervently talking about the trach
            (as if they hadn't earlier in the week!) and decided to do a
            bronchoscopy on Wednesday to see what was going on. They gave him
            steroids for two days to take down the suspected swelling and told us
            that we would do the trach during the same procedure if necessary
            (they thought it probably was!) On wednesday they went and looked, no
            swelling, NO TRACH!  Javad is doing fine so far...on bipap for part
            of the day. We are weaning his time day by day and maybe will get out
            of here next week. I am ready for a summer vacation!

            Thanks for all your prayers. Javad felt them and so did we!

            Talk to you soon!

            Shannon



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