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Re: Introducing Myself

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  • bv_mixednuts
    ... 4 1/2 and was diagnosed with MTM1 at 4 weeks old. It s good that you found this site there is a lot of very helpful suggestions and support. ... Glad to
    Message 1 of 23 , Jan 2, 2008
      --- In Myotubular_Myopathy@yahoogroups.com, kristin.burlage@... wrote:
      >
      > Hi Virginia,
      > Glad to hear your son is doing well post surgery. My son Justin is
      4 1/2 and was diagnosed with MTM1 at 4 weeks old. It's good that you
      found this site there is a lot of very helpful suggestions and support.
      > Kristin Bonny
      >
      > -------------- Original message --------------
      > From: "bv_mixednuts" <bv_mixednuts@...>
      > Hi i just wanted to introduce myself. I am Virginia and I have two
      > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
      > diagnosed with myotubular myopathy a month ago through a muscle
      > biopsy. We have genict tests outstanding to see if it is X Linked but
      > the docs are pretty sure he has x-linked mtm. We are doing okay and
      > hoping we will be able to bring him home in 4-6 weeks if we dont hit
      > anymore bumps. So far he has been healthy other then a blood infection.
      > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
      > ladds procedure to fix an intestinal malrotation they discovered.
      > Christopher went through surgery with no problems and is doing really
      > well. They put him on cpap just a few hours ago and he was doing well
      > when i left the hospital.
      > Anyway we live just south of Seattle WA. Christopher was born at our
      > local hospital and transfered to Swedish NICU for 3 weeks then to the
      > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
      > once we found out his diagnosis.
      > So that's the basics, hope to get to know some of you.
      > Virginia
      >
      Glad to meet you. I've been off line for a few days good to see so
      many others are out there. We've had a hard time finding anyone
      through the Parent Match program at the hospital.
      I hope your son is doing well.
      Virginia
    • bv_mixednuts
      ... Myotubular_Myopathy@yahoogroups.com ... infection. ... Darlene, Benjamin our older son does not show signs of
      Message 2 of 23 , Jan 2, 2008
        --- In Myotubular_Myopathy@yahoogroups.com, "DARLENE MILLER"
        <dm4462@...> wrote:
        >
        > Hi Virginia
        >
        > Welcome to the group. My name is Darlene. I have
        > two grandsons with x-linked MTM. Kyle just turned
        > 6 years old on the 15th and Connor is 2 years old.
        > I'm Kyle's primary caregiver. This is a great place
        > for information and support. Glad to hear
        > Christopher is doing so well. Does Benjamin show
        > any signs of MTM?
        >
        > Take care
        > Darlene
        >
        > ----- Original Message -----
        > From: bv_mixednuts<mailto:bv_mixednuts@...>
        > To:
        Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoogroups.com>

        > Sent: Friday, December 28, 2007 4:02 PM
        > Subject: [Myotubular_Myopathy] Introducing Myself
        >
        >
        > Hi i just wanted to introduce myself. I am Virginia and I have two
        > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
        > diagnosed with myotubular myopathy a month ago through a muscle
        > biopsy. We have genict tests outstanding to see if it is X Linked but
        > the docs are pretty sure he has x-linked mtm. We are doing okay and
        > hoping we will be able to bring him home in 4-6 weeks if we dont hit
        > anymore bumps. So far he has been healthy other then a blood
        infection.
        > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
        > ladds procedure to fix an intestinal malrotation they discovered.
        > Christopher went through surgery with no problems and is doing really
        > well. They put him on cpap just a few hours ago and he was doing well
        > when i left the hospital.
        > Anyway we live just south of Seattle WA. Christopher was born at our
        > local hospital and transfered to Swedish NICU for 3 weeks then to the
        > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
        > once we found out his diagnosis.
        > So that's the basics, hope to get to know some of you.
        > Virginia
        >
        Darlene,
        Benjamin our older son does not show signs of MTM but we honestly
        don't know what to look for. Benjamin is as far as we can see a
        healthy 2 year old. He has hit all of his development milestones
        early or on target so we pray he will not be affected by MTM
        Do both of your grandsons have MTM with the same severity? Are they
        ventilated, how are they doing?
        Thank you,
        Virginia
      • bv_mixednuts
        ... I would love to talk to you!!! Yes Christopher is doing well, we had a care conference today so we re working out a tentative plan for his homecoming.
        Message 3 of 23 , Jan 2, 2008
          --- In Myotubular_Myopathy@yahoogroups.com, "Shannon" <smashintwo@...>
          wrote:
          >
          > Hello Virginia,
          >
          > Welcome to this group. It is a fantastic support. Connie (from Texas)
          > called me last night to tell me of your post. My son Javad is 6yrs old.
          > We live in the Portland, OR area, not far from you. I will be happy to
          > send you my number.
          >
          > It sounds like your son is doing well...
          >
          > Shannon
          >
          I would love to talk to you!!!
          Yes Christopher is doing well, we had a care conference today so we're
          working out a tentative plan for his homecoming. Tomorrow he will
          have his first trach change. We are hopeful he will be moving out of
          the ICU next week.
          Virginia
        • DARLENE MILLER
          Hi Virginia, Glad to hear Benjamin is doing fine. You will definitely have your hands full with a 2 year old and 3 month old. Both boys have x-linked MTM but
          Message 4 of 23 , Jan 2, 2008
            Hi Virginia,
             
            Glad to hear Benjamin is doing fine.   You will
            definitely have your hands full with a 2 year old
            and 3 month old. 
             
            Both boys have x-linked MTM but they are
            different in many ways.  Both boys are trached
            and have g-tubes.  Connor had 6 cardiac
            arrests when he was between the age of
            4 months and 6 months.  He is mostly vent
            dependant.  He does come off the vent about
            2 hours a day.  Connor can't sit up and must
            have someone near him at all times.  Kyle on
            the other hand, is very active.  He attends
            regular Kindergarten class.  He is off the vent
            during the day except when sick.  Only uses
            it at night.  Kyle has operated a power chair
            since he was 3 1/2 years old.  He can also use a
            manual chair as long as it is not on thick carpet.
            He is very vocal with his speaking valve.  Kyle
            will try to do anything his older sister does.  He
            knows sign language and we are in the process
            of getting him an augmentive communication
            device.  Both Connor and Kyle are doing great.
            We have managed to keep them out of the
            hospital now for Connor it has been a little over
            a year and Kyle will be 2 years in March.
             
            I'm glad you found this group.  It has been a
            great help to our family.  Without it I don't know
            what we would have done.  The support is
            unbelievable.  If you have any questions, don't
            hesitate to ask.  One of us will be able to help or
            at least put you in the right direction. 
             
            Take care,
            Darlene
             
             
            ----- Original Message -----
            Sent: Wednesday, January 02, 2008 7:05 PM
            Subject: [Myotubular_Myopathy] Re: Introducing Myself

            --- In Myotubular_Myopathy @yahoogroups. com, "DARLENE MILLER"
            <dm4462@...> wrote:
            >
            > Hi Virginia
            >
            > Welcome to the group. My name is Darlene. I have
            > two grandsons with x-linked MTM. Kyle just turned
            > 6 years old on the 15th and Connor is 2 years old.
            > I'm Kyle's primary caregiver. This is a great place
            > for information and support. Glad to hear
            > Christopher is doing so well. Does Benjamin show
            > any signs of MTM?
            >
            > Take care
            > Darlene
            >
            > ----- Original Message -----
            > From: bv_mixednuts< mailto:bv_ mixednuts@ ...>
            > To:
            Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>

            > Sent: Friday, December 28, 2007 4:02 PM
            > Subject: [Myotubular_ Myopathy] Introducing Myself
            >
            >
            > Hi i just wanted to introduce myself. I am Virginia and I have two
            > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
            > diagnosed with myotubular myopathy a month ago through a muscle
            > biopsy. We have genict tests outstanding to see if it is X Linked but
            > the docs are pretty sure he has x-linked mtm. We are doing okay and
            > hoping we will be able to bring him home in 4-6 weeks if we dont hit
            > anymore bumps. So far he has been healthy other then a blood
            infection.
            > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
            > ladds procedure to fix an intestinal malrotation they discovered.
            > Christopher went through surgery with no problems and is doing really
            > well. They put him on cpap just a few hours ago and he was doing well
            > when i left the hospital.
            > Anyway we live just south of Seattle WA. Christopher was born at our
            > local hospital and transfered to Swedish NICU for 3 weeks then to the
            > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
            > once we found out his diagnosis.
            > So that's the basics, hope to get to know some of you.
            > Virginia
            >
            Darlene,
            Benjamin our older son does not show signs of MTM but we honestly
            don't know what to look for. Benjamin is as far as we can see a
            healthy 2 year old. He has hit all of his development milestones
            early or on target so we pray he will not be affected by MTM
            Do both of your grandsons have MTM with the same severity? Are they
            ventilated, how are they doing?
            Thank you,
            Virginia

          • bv_mixednuts
            Hi Darlene, I m glad to hear that both of your grandsons have been healthy lately. I was wondering if you have home nursing? We talked about it briefly at our
            Message 5 of 23 , Jan 2, 2008
              Hi Darlene,
              I'm glad to hear that both of your grandsons have been healthy lately.
              I was wondering if you have home nursing? We talked about it briefly
              at our care conference today and they recommend we have 16 hours of
              home nursing to start with. I'm not very exited about the idea of
              having people in my house that much but I also want Christopher to be
              safe and have good care. Do you have home nursing for your grandsons?
              If so how has that worked for your family?
              Thank you for sharing so much information with me.
              I really appreciate it.
              Virginia

              --- In Myotubular_Myopathy@yahoogroups.com, "DARLENE MILLER"
              <dm4462@...> wrote:
              >
              > Hi Virginia,
              >
              > Glad to hear Benjamin is doing fine. You will
              > definitely have your hands full with a 2 year old
              > and 3 month old.
              >
              > Both boys have x-linked MTM but they are
              > different in many ways. Both boys are trached
              > and have g-tubes. Connor had 6 cardiac
              > arrests when he was between the age of
              > 4 months and 6 months. He is mostly vent
              > dependant. He does come off the vent about
              > 2 hours a day. Connor can't sit up and must
              > have someone near him at all times. Kyle on
              > the other hand, is very active. He attends
              > regular Kindergarten class. He is off the vent
              > during the day except when sick. Only uses
              > it at night. Kyle has operated a power chair
              > since he was 3 1/2 years old. He can also use a
              > manual chair as long as it is not on thick carpet.
              > He is very vocal with his speaking valve. Kyle
              > will try to do anything his older sister does. He
              > knows sign language and we are in the process
              > of getting him an augmentive communication
              > device. Both Connor and Kyle are doing great.
              > We have managed to keep them out of the
              > hospital now for Connor it has been a little over
              > a year and Kyle will be 2 years in March.
              >
              > I'm glad you found this group. It has been a
              > great help to our family. Without it I don't know
              > what we would have done. The support is
              > unbelievable. If you have any questions, don't
              > hesitate to ask. One of us will be able to help or
              > at least put you in the right direction.
              >
              > Take care,
              > Darlene
              >
              >
              > ----- Original Message -----
              > From: bv_mixednuts<mailto:bv_mixednuts@...>
              > To:
              Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoogroups.com>

              > Sent: Wednesday, January 02, 2008 7:05 PM
              > Subject: [Myotubular_Myopathy] Re: Introducing Myself
              >
              >
              > --- In
              Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoogroups.com>,
              "DARLENE MILLER"
              > <dm4462@> wrote:
              > >
              > > Hi Virginia
              > >
              > > Welcome to the group. My name is Darlene. I have
              > > two grandsons with x-linked MTM. Kyle just turned
              > > 6 years old on the 15th and Connor is 2 years old.
              > > I'm Kyle's primary caregiver. This is a great place
              > > for information and support. Glad to hear
              > > Christopher is doing so well. Does Benjamin show
              > > any signs of MTM?
              > >
              > > Take care
              > > Darlene
              > >
              > > ----- Original Message -----
              > > From: bv_mixednuts<mailto:bv_mixednuts@>
              > > To:
              >
              Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoogroups.com><mailto:Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoogroups.com>>
              >
              > > Sent: Friday, December 28, 2007 4:02 PM
              > > Subject: [Myotubular_Myopathy] Introducing Myself
              > >
              > >
              > > Hi i just wanted to introduce myself. I am Virginia and I have two
              > > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
              > > diagnosed with myotubular myopathy a month ago through a muscle
              > > biopsy. We have genict tests outstanding to see if it is X
              Linked but
              > > the docs are pretty sure he has x-linked mtm. We are doing okay and
              > > hoping we will be able to bring him home in 4-6 weeks if we dont hit
              > > anymore bumps. So far he has been healthy other then a blood
              > infection.
              > > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
              > > ladds procedure to fix an intestinal malrotation they discovered.
              > > Christopher went through surgery with no problems and is doing
              really
              > > well. They put him on cpap just a few hours ago and he was doing
              well
              > > when i left the hospital.
              > > Anyway we live just south of Seattle WA. Christopher was born at our
              > > local hospital and transfered to Swedish NICU for 3 weeks then
              to the
              > > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
              > > once we found out his diagnosis.
              > > So that's the basics, hope to get to know some of you.
              > > Virginia
              > >
              > Darlene,
              > Benjamin our older son does not show signs of MTM but we honestly
              > don't know what to look for. Benjamin is as far as we can see a
              > healthy 2 year old. He has hit all of his development milestones
              > early or on target so we pray he will not be affected by MTM
              > Do both of your grandsons have MTM with the same severity? Are they
              > ventilated, how are they doing?
              > Thank you,
              > Virginia
              >
            • Sally Eubanks
              Hi Virginia-- I m Sally and my son Oscar is 9 months old. We don t have a diagnosis yet, but I m pretty sure he has X-linked MTM. We re going through
              Message 6 of 23 , Jan 3, 2008
                Hi Virginia--

                I'm Sally and my son Oscar is 9 months old. We don't
                have a diagnosis yet, but I'm pretty sure he has
                X-linked MTM. We're going through something fairly
                similar, as Oscar is going to be sent home sometime in
                the next few weeks with nursing care. I'm very
                nervous about this myself! But we have a great
                hospital team who did a ton of research and fought for
                the best nursing service they could find.

                Oh yeah, we live in Salzburg, Austria but I'm
                American. I'm so glad for this group, because trying
                to work with doctors in a foreign language without
                lots of background info would have been even more
                difficult! They've been really helpful to me.

                sally


                ____________________________________________________________________________________
                Looking for last minute shopping deals?
                Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping
              • DARLENE MILLER
                Hi Virginia, Yes, we have home nursing for both boys. I suggest as Connie has mentioned to get all the nursing hours you can get. Especially now. With a two
                Message 7 of 23 , Jan 4, 2008
                  Hi Virginia,
                   
                  Yes, we have home nursing for both boys.  I suggest
                  as Connie has mentioned to get all the nursing hours
                  you can get.  Especially now.  With a two year old and
                  a newborn with special needs you are going to have
                  your hands full.  Been there done that!!!  Kyle's sister
                  is one year older and it was really hard.  We started out
                  with nursing but that only lasted for 2 months.  They
                  said it was too far for them to come to our house.  We
                  lived in the country and the nearest city was 40 miles
                  away.  The nearest hospital was 32 miles away.  So I
                  ended up taking care of him myself.  I wasn't able to go
                  anywhere without taking him.  We had become
                  inseperatable.  I was ok with it but it gets very stressful
                  at times especially when the older child needs attention
                  and/or is sick.   After two years we decided to move
                  closer to the city.  We are now working on nurse #26.
                  As Connie has mentioned, don't just take the first nurse
                  you get unless you feel totally comfortable with her.  We
                  have had nurses that had no idea what to do.  Then you
                  can get the ones that want to do things their way and
                  not yours.  Make sure they understand you are their boss
                  and you want things done your way.  I've had them tell me
                  well that's not how we did it at the nursing home.  Well,
                  excuse me your in my house not the nursing home!  So
                  things are done my way.  Or the one that wants to do
                  everything by the book.  I wish someone would burn that
                  book because it doesn't deal with our kids.  Then you will
                  have the one that wants him to stay in bed all the time.
                  We have had nurses not come back because Kyle doesn't
                  stay in bed.  He gets on the floor, his chair, outside, eats
                  with us at the table, his stander, his gait trainer, etc.  They
                  say it is too much work for them having to move him from
                  place to place.   Anyway,Kyle gets 9 hours a day and Connor
                  gets 12 hours a day nursing.  Kyle's nurse goes to school
                  with him.  Since he has the trach and feeding tube and
                  sometimes uses the vent at school they require him to have
                  a nurse or family member with him.  Connor gets more
                  because they have another child that is younger and requires
                  the attention Krystal can't give if she is the only one caring
                  for the two of them.  Plus, Connor has a few more problems
                  then Kyle does.  The nurse we have now is ok, she is just sooo
                  slow at everything she does.  I have to keep telling her to move
                  it,  that we need to go or we have to be somewhere at a certain
                  time.   Especially, when we go to his therapies in the morning
                  then I take them to school.  Not that I keep a time frame, but she
                  has no since of time and that drives Kyle and me crazy.  He will
                  actually leave her behind when he is in his power chair.  I think
                  we keep her around for laughs, he will get really far ahead of her
                  then turn around and wait for her to catch up to him, laughing the
                  whole time (it is funny watching her run to catch him). 
                   
                  I'm not telling you this to scare you, but you do need to be aware
                  of the different types there are out there and pick the ones that
                  fit your family the best.   Also as Connie, has said check into
                  Medicaid and check to see if he is eligible for SSI through Social
                  Security if you haven't done so already.  She had some very good
                  points.  You will need all the help you can get thru these
                  departments.  Regular insurance will not pay for a lot of things
                  the kids need or they will give you a hard time thinking you will give
                  up trying.  You may want to contact the Muscular Dystrophy Office
                  in your state to see what programs are available to you there if you
                  haven't already done that. 
                   
                  Sorry this is so long, but I want you  to be prepared for what to
                  expect before you have to go thru it.    Also before he comes
                  home don't be afraid to ask for equipment they aren't sending
                  home with him if you think he needs it.  They did that with Connor,
                  then after we asked for it they said, oh, yes, he may need that.
                   
                  As I said before, don't be afraid to ask questions, no matter what
                  I'm sure one of us if not all have been thru it already. 
                   
                  Take care,
                  Darlene
                   
                  ----- Original Message -----
                  Sent: Wednesday, January 02, 2008 10:59 PM
                  Subject: [Myotubular_Myopathy] Re: Introducing Myself

                  Hi Darlene,
                  I'm glad to hear that both of your grandsons have been healthy lately.
                  I was wondering if you have home nursing? We talked about it briefly
                  at our care conference today and they recommend we have 16 hours of
                  home nursing to start with. I'm not very exited about the idea of
                  having people in my house that much but I also want Christopher to be
                  safe and have good care. Do you have home nursing for your grandsons?
                  If so how has that worked for your family?
                  Thank you for sharing so much information with me.
                  I really appreciate it.
                  Virginia

                  --- In Myotubular_Myopathy @yahoogroups. com, "DARLENE MILLER"
                  <dm4462@...> wrote:
                  >
                  > Hi Virginia,
                  >
                  > Glad to hear Benjamin is doing fine. You will
                  > definitely have your hands full with a 2 year old
                  > and 3 month old.
                  >
                  > Both boys have x-linked MTM but they are
                  > different in many ways. Both boys are trached
                  > and have g-tubes. Connor had 6 cardiac
                  > arrests when he was between the age of
                  > 4 months and 6 months. He is mostly vent
                  > dependant. He does come off the vent about
                  > 2 hours a day. Connor can't sit up and must
                  > have someone near him at all times. Kyle on
                  > the other hand, is very active. He attends
                  > regular Kindergarten class. He is off the vent
                  > during the day except when sick. Only uses
                  > it at night. Kyle has operated a power chair
                  > since he was 3 1/2 years old. He can also use a
                  > manual chair as long as it is not on thick carpet.
                  > He is very vocal with his speaking valve. Kyle
                  > will try to do anything his older sister does. He
                  > knows sign language and we are in the process
                  > of getting him an augmentive communication
                  > device. Both Connor and Kyle are doing great.
                  > We have managed to keep them out of the
                  > hospital now for Connor it has been a little over
                  > a year and Kyle will be 2 years in March.
                  >
                  > I'm glad you found this group. It has been a
                  > great help to our family. Without it I don't know
                  > what we would have done. The support is
                  > unbelievable. If you have any questions, don't
                  > hesitate to ask. One of us will be able to help or
                  > at least put you in the right direction.
                  >
                  > Take care,
                  > Darlene
                  >
                  >
                  > ----- Original Message -----
                  > From: bv_mixednuts< mailto:bv_ mixednuts@ ...>
                  > To:
                  Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>

                  > Sent: Wednesday, January 02, 2008 7:05 PM
                  > Subject: [Myotubular_ Myopathy] Re: Introducing Myself
                  >
                  >
                  > --- In
                  Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>,
                  "DARLENE MILLER"
                  > <dm4462@> wrote:
                  > >
                  > > Hi Virginia
                  > >
                  > > Welcome to the group. My name is Darlene. I have
                  > > two grandsons with x-linked MTM. Kyle just turned
                  > > 6 years old on the 15th and Connor is 2 years old.
                  > > I'm Kyle's primary caregiver. This is a great place
                  > > for information and support. Glad to hear
                  > > Christopher is doing so well. Does Benjamin show
                  > > any signs of MTM?
                  > >
                  > > Take care
                  > > Darlene
                  > >
                  > > ----- Original Message -----
                  > > From: bv_mixednuts< mailto:bv_ mixednuts@ >
                  > > To:
                  >
                  Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com><mailto:Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>>
                  >
                  > > Sent: Friday, December 28, 2007 4:02 PM
                  > > Subject: [Myotubular_ Myopathy] Introducing Myself
                  > >
                  > >
                  > > Hi i just wanted to introduce myself. I am Virginia and I have two
                  > > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
                  > > diagnosed with myotubular myopathy a month ago through a muscle
                  > > biopsy. We have genict tests outstanding to see if it is X
                  Linked but
                  > > the docs are pretty sure he has x-linked mtm. We are doing okay and
                  > > hoping we will be able to bring him home in 4-6 weeks if we dont hit
                  > > anymore bumps. So far he has been healthy other then a blood
                  > infection.
                  > > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
                  > > ladds procedure to fix an intestinal malrotation they discovered.
                  > > Christopher went through surgery with no problems and is doing
                  really
                  > > well. They put him on cpap just a few hours ago and he was doing
                  well
                  > > when i left the hospital.
                  > > Anyway we live just south of Seattle WA. Christopher was born at our
                  > > local hospital and transfered to Swedish NICU for 3 weeks then
                  to the
                  > > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
                  > > once we found out his diagnosis.
                  > > So that's the basics, hope to get to know some of you.
                  > > Virginia
                  > >
                  > Darlene,
                  > Benjamin our older son does not show signs of MTM but we honestly
                  > don't know what to look for. Benjamin is as far as we can see a
                  > healthy 2 year old. He has hit all of his development milestones
                  > early or on target so we pray he will not be affected by MTM
                  > Do both of your grandsons have MTM with the same severity? Are they
                  > ventilated, how are they doing?
                  > Thank you,
                  > Virginia
                  >

                • Abbie harrison
                  Hi Virginia, My name is Abbie and I have a two year old daughter with ARMTM. She has a trach and a mickey button and uses a vent at night. She qualifies for
                  Message 8 of 23 , Jan 5, 2008
                    Hi Virginia,
                    My name is Abbie and I have a two year old daughter with ARMTM.  She has a trach and a mickey button and uses a vent at night.  She qualifies for 16 hours a day of nursing care.  At around four months old, three months after coming home, we started using it.  We were lucky enough to have a family member who was a nurse and she was Kaylee's only nurse for a long time.  When we started, she had private insurance and now she is on Medicaid.  After her last hospitalization, which she came home Jan o7, they started sending us new nurses.  We have had the lazy ones, the old blind and deaf ones who could not here her alarming, the ones who had issues with personal hygeine, the ones who no call no show for three shifts and all of a sudden show up on your doorstep one morning, the bossy overcontrolling ones, and my least favorite, the one who steals your credit cards and goes and racks up thousands of $$$ on them!  Now we have only one nurse, she works 36 hours a week.  We knew her from our local hospital.  My husband and I both worked for the local ambulance service, so we were always seeing her. Kaylee's last trip to the ER in June, resulted in a job offer to her, which she graciously accepted.  She works for us and still works some shifts at the ER.  I am not telling about all the bad nursing to scare you, but I want you to be aware of what is out there.  If you have any family or friends who are nurses or know of any nurses from your local hospital that may want to help take care, they can get hired through your local home health agency and work strictly for you.  This is what has worked best for us.  I wish you the best of luck and hope you have an easy transition to your home.
                    Abbie and Kaylee

                    DARLENE MILLER <dm4462@...> wrote:
                    Hi Virginia,
                     
                    Yes, we have home nursing for both boys.  I suggest
                    as Connie has mentioned to get all the nursing hours
                    you can get.  Especially now.  With a two year old and
                    a newborn with special needs you are going to have
                    your hands full.  Been there done that!!!  Kyle's sister
                    is one year older and it was really hard.  We started out
                    with nursing but that only lasted for 2 months.  They
                    said it was too far for them to come to our house.  We
                    lived in the country and the nearest city was 40 miles
                    away.  The nearest hospital was 32 miles away.  So I
                    ended up taking care of him myself.  I wasn't able to go
                    anywhere without taking him.  We had become
                    inseperatable.  I was ok with it but it gets very stressful
                    at times especially when the older child needs attention
                    and/or is sick.   After two years we decided to move
                    closer to the city.  We are now working on nurse #26.
                    As Connie has mentioned, don't just take the first nurse
                    you get unless you feel totally comfortable with her.  We
                    have had nurses that had no idea what to do.  Then you
                    can get the ones that want to do things their way and
                    not yours.  Make sure they understand you are their boss
                    and you want things done your way.  I've had them tell me
                    well that's not how we did it at the nursing home.  Well,
                    excuse me your in my house not the nursing home!  So
                    things are done my way.  Or the one that wants to do
                    everything by the book.  I wish someone would burn that
                    book because it doesn't deal with our kids.  Then you will
                    have the one that wants him to stay in bed all the time.
                    We have had nurses not come back because Kyle doesn't
                    stay in bed.  He gets on the floor, his chair, outside, eats
                    with us at the table, his stander, his gait trainer, etc.  They
                    say it is too much work for them having to move him from
                    place to place.   Anyway,Kyle gets 9 hours a day and Connor
                    gets 12 hours a day nursing.  Kyle's nurse goes to school
                    with him.  Since he has the trach and feeding tube and
                    sometimes uses the vent at school they require him to have
                    a nurse or family member with him.  Connor gets more
                    because they have another child that is younger and requires
                    the attention Krystal can't give if she is the only one caring
                    for the two of them.  Plus, Connor has a few more problems
                    then Kyle does.  The nurse we have now is ok, she is just sooo
                    slow at everything she does.  I have to keep telling her to move
                    it,  that we need to go or we have to be somewhere at a certain
                    time.   Especially, when we go to his therapies in the morning
                    then I take them to school.  Not that I keep a time frame, but she
                    has no since of time and that drives Kyle and me crazy.  He will
                    actually leave her behind when he is in his power chair.  I think
                    we keep her around for laughs, he will get really far ahead of her
                    then turn around and wait for her to catch up to him, laughing the
                    whole time (it is funny watching her run to catch him). 
                     
                    I'm not telling you this to scare you, but you do need to be aware
                    of the different types there are out there and pick the ones that
                    fit your family the best.   Also as Connie, has said check into
                    Medicaid and check to see if he is eligible for SSI through Social
                    Security if you haven't done so already.  She had some very good
                    points.  You will need all the help you can get thru these
                    departments.  Regular insurance will not pay for a lot of things
                    the kids need or they will give you a hard time thinking you will give
                    up trying.  You may want to contact the Muscular Dystrophy Office
                    in your state to see what programs are available to you there if you
                    haven't already done that. 
                     
                    Sorry this is so long, but I want you  to be prepared for what to
                    expect before you have to go thru it.    Also before he comes
                    home don't be afraid to ask for equipment they aren't sending
                    home with him if you think he needs it.  They did that with Connor,
                    then after we asked for it they said, oh, yes, he may need that.
                     
                    As I said before, don't be afraid to ask questions, no matter what
                    I'm sure one of us if not all have been thru it already. 
                     
                    Take care,
                    Darlene
                     
                    ----- Original Message -----
                    Sent: Wednesday, January 02, 2008 10:59 PM
                    Subject: [Myotubular_ Myopathy] Re: Introducing Myself

                    Hi Darlene,
                    I'm glad to hear that both of your grandsons have been healthy lately.
                    I was wondering if you have home nursing? We talked about it briefly
                    at our care conference today and they recommend we have 16 hours of
                    home nursing to start with. I'm not very exited about the idea of
                    having people in my house that much but I also want Christopher to be
                    safe and have good care. Do you have home nursing for your grandsons?
                    If so how has that worked for your family?
                    Thank you for sharing so much information with me.
                    I really appreciate it.
                    Virginia

                    --- In Myotubular_Myopathy @yahoogroups. com, "DARLENE MILLER"
                    <dm4462@...> wrote:
                    >
                    > Hi Virginia,
                    >
                    > Glad to hear Benjamin is doing fine. You will
                    > definitely have your hands full with a 2 year old
                    > and 3 month old.
                    >
                    > Both boys have x-linked MTM but they are
                    > different in many ways. Both boys are trached
                    > and have g-tubes. Connor had 6 cardiac
                    > arrests when he was between the age of
                    > 4 months and 6 months. He is mostly vent
                    > dependant. He does come off the vent about
                    > 2 hours a day. Connor can't sit up and must
                    > have someone near him at all times. Kyle on
                    > the other hand, is very active. He attends
                    > regular Kindergarten class. He is off the vent
                    > during the day except when sick. Only uses
                    > it at night. Kyle has operated a power chair
                    > since he was 3 1/2 years old. He can also use a
                    > manual chair as long as it is not on thick carpet.
                    > He is very vocal with his speaking valve. Kyle
                    > will try to do anything his older sister does. He
                    > knows sign language and we are in the process
                    > of getting him an augmentive communication
                    > device. Both Connor and Kyle are doing great.
                    > We have managed to keep them out of the
                    > hospital now for Connor it has been a little over
                    > a year and Kyle will be 2 years in March.
                    >
                    > I'm glad you found this group. It has been a
                    > great help to our family. Without it I don't know
                    > what we would have done. The support is
                    > unbelievable. If you have any questions, don't
                    > hesitate to ask. One of us will be able to help or
                    > at least put you in the right direction.
                    >
                    > Take care,
                    > Darlene
                    >
                    >
                    > ----- Original Message -----
                    > From: bv_mixednuts< mailto:bv_ mixednuts@ ...>
                    > To:
                    Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>

                    > Sent: Wednesday, January 02, 2008 7:05 PM
                    > Subject: [Myotubular_ Myopathy] Re: Introducing Myself
                    >
                    >
                    > --- In
                    Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>,
                    "DARLENE MILLER"
                    > <dm4462@> wrote:
                    > >
                    > > Hi Virginia
                    > >
                    > > Welcome to the group. My name is Darlene. I have
                    > > two grandsons with x-linked MTM. Kyle just turned
                    > > 6 years old on the 15th and Connor is 2 years old.
                    > > I'm Kyle's primary caregiver. This is a great place
                    > > for information and support. Glad to hear
                    > > Christopher is doing so well. Does Benjamin show
                    > > any signs of MTM?
                    > >
                    > > Take care
                    > > Darlene
                    > >
                    > > ----- Original Message -----
                    > > From: bv_mixednuts< mailto:bv_ mixednuts@ >
                    > > To:
                    >
                    Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com><mailto:Myotubular_Myopathy @yahoogroups. com<mailto:Myotubular_Myopathy @yahoogroups. com>>
                    >
                    > > Sent: Friday, December 28, 2007 4:02 PM
                    > > Subject: [Myotubular_ Myopathy] Introducing Myself
                    > >
                    > >
                    > > Hi i just wanted to introduce myself. I am Virginia and I have two
                    > > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
                    > > diagnosed with myotubular myopathy a month ago through a muscle
                    > > biopsy. We have genict tests outstanding to see if it is X
                    Linked but
                    > > the docs are pretty sure he has x-linked mtm. We are doing okay and
                    > > hoping we will be able to bring him home in 4-6 weeks if we dont hit
                    > > anymore bumps. So far he has been healthy other then a blood
                    > infection.
                    > > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
                    > > ladds procedure to fix an intestinal malrotation they discovered.
                    > > Christopher went through surgery with no problems and is doing
                    really
                    > > well. They put him on cpap just a few hours ago and he was doing
                    well
                    > > when i left the hospital.
                    > > Anyway we live just south of Seattle WA. Christopher was born at our
                    > > local hospital and transfered to Swedish NICU for 3 weeks then
                    to the
                    > > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
                    > > once we found out his diagnosis.
                    > > So that's the basics, hope to get to know some of you.
                    > > Virginia
                    > >
                    > Darlene,
                    > Benjamin our older son does not show signs of MTM but we honestly
                    > don't know what to look for. Benjamin is as far as we can see a
                    > healthy 2 year old. He has hit all of his development milestones
                    > early or on target so we pray he will not be affected by MTM
                    > Do both of your grandsons have MTM with the same severity? Are they
                    > ventilated, how are they doing?
                    > Thank you,
                    > Virginia
                    >


                  • jennaleigh85
                    Hello Virginia, My name is Jenna, mother of a 2 1/2 year old little girl named Allie (Allison). She was diagnosed with CNM after her second muscle biopsy just
                    Message 9 of 23 , Jan 5, 2008
                      Hello Virginia,
                      My name is Jenna, mother of a 2 1/2 year old little girl named Allie (Allison). She was
                      diagnosed with CNM after her second muscle biopsy just before she turned two. She is
                      fed through G-tube only, she does not walk or stand by her self however on
                      thanksgiving day she crawled for the first time ever and has not stopped since.
                      I am happy to hear that your son Christopher is doing well and I'm very glad that you
                      found us! As I'm sure you've already found, this group is amazing!




                      --- In Myotubular_Myopathy@yahoogroups.com, "bv_mixednuts" <bv_mixednuts@...>
                      wrote:
                      >
                      > Hi i just wanted to introduce myself. I am Virginia and I have two
                      > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
                      > diagnosed with myotubular myopathy a month ago through a muscle
                      > biopsy. We have genict tests outstanding to see if it is X Linked but
                      > the docs are pretty sure he has x-linked mtm. We are doing okay and
                      > hoping we will be able to bring him home in 4-6 weeks if we dont hit
                      > anymore bumps. So far he has been healthy other then a blood infection.
                      > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
                      > ladds procedure to fix an intestinal malrotation they discovered.
                      > Christopher went through surgery with no problems and is doing really
                      > well. They put him on cpap just a few hours ago and he was doing well
                      > when i left the hospital.
                      > Anyway we live just south of Seattle WA. Christopher was born at our
                      > local hospital and transfered to Swedish NICU for 3 weeks then to the
                      > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
                      > once we found out his diagnosis.
                      > So that's the basics, hope to get to know some of you.
                      > Virginia
                      >
                    • Dana
                      Hi Virginia!! First, let me say congratulations on your knew bundle of joy!! My name is Dana and I have 2 wonderful boys: Corey is 18 years old and unaffected
                      Message 10 of 23 , Jan 10, 2008
                        Hi Virginia!!

                        First, let me say congratulations on your knew bundle of joy!! My
                        name is Dana and I have 2 wonderful boys: Corey is 18 years old and
                        unaffected and Cason is 4 1/2 years old with x-linked mtm. We live in
                        Jacksonville Florida.

                        I am so glad that you found this group. I remember right after Cason
                        was born and the roller coaster ride begun. I had never been so
                        terrified in all of my life. I did not understand what was going on,
                        I did not know what to expect, and I was given outdated (and
                        sometimes just plain false) information from various medical staff. I
                        would have done anything to have known about this group for support.

                        As for nursing, I decided that I wanted to care for Cason myself and
                        have not used nursing yet. I don't work and my only other child is 18
                        years old and he helps out alot so I have been fortunate. I am soon
                        going to have to get Cason a nurse so that he can start school in the
                        fall. Just thinking about Cason leaving me to go to school is giving
                        me an anxiety attack, lol.

                        I am glad that Christopher is doing so well. Cason was very very very
                        sick for the 1st 2 1/2 years of his life. He spent more time in the
                        hospital than he spent out of it. Lately he has been doing really
                        really good thank God. He has a trach and a g-tube. He can not bare
                        any weight on his legs and is on a vent only at night when he is
                        asleep. The rest of the time he is on room air. I can't wait to hear
                        more about Christopher and am glad to "meet" you. If you have any
                        questions please do not hesitate to ask!!

                        Dana and Cason






                        --- In Myotubular_Myopathy@yahoogroups.com, "bv_mixednuts"
                        <bv_mixednuts@...> wrote:
                        >
                        > Hi i just wanted to introduce myself. I am Virginia and I have two
                        > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
                        > diagnosed with myotubular myopathy a month ago through a muscle
                        > biopsy. We have genict tests outstanding to see if it is X Linked
                        but
                        > the docs are pretty sure he has x-linked mtm. We are doing okay and
                        > hoping we will be able to bring him home in 4-6 weeks if we dont hit
                        > anymore bumps. So far he has been healthy other then a blood
                        infection.
                        > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
                        > ladds procedure to fix an intestinal malrotation they discovered.
                        > Christopher went through surgery with no problems and is doing
                        really
                        > well. They put him on cpap just a few hours ago and he was doing
                        well
                        > when i left the hospital.
                        > Anyway we live just south of Seattle WA. Christopher was born at our
                        > local hospital and transfered to Swedish NICU for 3 weeks then to
                        the
                        > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
                        > once we found out his diagnosis.
                        > So that's the basics, hope to get to know some of you.
                        > Virginia
                        >
                      • Elizabeth Peil
                        I was wondering if any of your children have contractures. Chaz s legs have pretty severe conntractures in them. His PT and I were discussing different ways
                        Message 11 of 23 , Jan 11, 2008
                          I was wondering if any of your children have contractures.  Chaz's legs have pretty severe conntractures in them.  His PT and I were discussing different ways to try to stretch him out.  She told me that they do botox injections to help with stretching, I was wondering if any one has tried this before or if you have even heard of it.  I am not even sure that it is an option with MTM to use the botox to help with the muscle tightness.  Any info any of you have on this would be great.  Thank you.
                           
                          Liz


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                        • Scott & Betsy Grant
                          Liz, My son Kyle has had pretty severe contractures in his knees, unfortunately. We tried different things, like sandbags or weights on them at night,
                          Message 12 of 23 , Jan 11, 2008
                            Liz,
                            My son Kyle has had pretty severe contractures in his knees, unfortunately. We tried different things, like sandbags or weights on them at night, regimented stretching sessions during the day, without great  progress  Then we finally got the right therapist who was able to recommend and fit Kyle for custom-made leg braces that he wears at night, they have a hinge on them at the knee that naturally puts some constant pull, and you can adjust them for how strongly you want them to pull. They are really great and we're finally seeing those contractures disappear!
                             
                            What are other's experiences with standers? I was in contact with someone who said it was a great tool, (Beth?) but I wondered if you saw leg strengthening with one. We have one in the works, I have to contest it with the insurance company since they'd rather not pay for it.
                             
                            Botox, haven't really heard of it for treatment except maybe in the case of cerebral palsy? I'd love to know more as well.
                             
                            Betsy


                            On Jan 11, 2008 1:36 PM, Elizabeth Peil <elz0221@...> wrote:

                            I was wondering if any of your children have contractures.  Chaz's legs have pretty severe conntractures in them.  His PT and I were discussing different ways to try to stretch him out.  She told me that they do botox injections to help with stretching, I was wondering if any one has tried this before or if you have even heard of it.  I am not even sure that it is an option with MTM to use the botox to help with the muscle tightness.  Any info any of you have on this would be great.  Thank you.
                             
                            Liz


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                          • DARLENE MILLER
                            Hi Liz and Betsy, My Kyle has a stander. I think it is great. I took it to school this year since he goes all day so he can use it there, as they don t have
                            Message 13 of 23 , Jan 11, 2008
                              Hi Liz and Betsy,
                               
                              My Kyle has a stander.  I think it is great.  I took it to school this
                              year since he goes all day so he can use it there, as they don't
                              have one to fit him.  He spends atleast 2 hours  a day in it.  It
                              helps to strengthen his legs and he doesn't have a whole lot of
                              problems with his legs now.  He aslo gets leg exercises every
                              day at school and home.  At home we lay him on his stomach
                              and stretch them and everytime he gets a diaper change we
                              stretch his legs.  We were also told water therapy was good.
                              But unfortunately, we only have access to a pool during the
                              summer.
                               
                              I've never heard of botox though.
                               
                              Darlene
                               
                               
                              ----- Original Message -----
                              Sent: Friday, January 11, 2008 2:26 PM
                              Subject: Re: [Myotubular_Myopathy] Contractures

                              Liz,
                              My son Kyle has had pretty severe contractures in his knees, unfortunately. We tried different things, like sandbags or weights on them at night, regimented stretching sessions during the day, without great  progress  Then we finally got the right therapist who was able to recommend and fit Kyle for custom-made leg braces that he wears at night, they have a hinge on them at the knee that naturally puts some constant pull, and you can adjust them for how strongly you want them to pull. They are really great and we're finally seeing those contractures disappear!
                               
                              What are other's experiences with standers? I was in contact with someone who said it was a great tool, (Beth?) but I wondered if you saw leg strengthening with one. We have one in the works, I have to contest it with the insurance company since they'd rather not pay for it.
                               
                              Botox, haven't really heard of it for treatment except maybe in the case of cerebral palsy? I'd love to know more as well.
                               
                              Betsy


                              On Jan 11, 2008 1:36 PM, Elizabeth Peil <elz0221@yahoo. com> wrote:

                              I was wondering if any of your children have contractures.  Chaz's legs have pretty severe conntractures in them.  His PT and I were discussing different ways to try to stretch him out.  She told me that they do botox injections to help with stretching, I was wondering if any one has tried this before or if you have even heard of it.  I am not even sure that it is an option with MTM to use the botox to help with the muscle tightness.  Any info any of you have on this would be great.  Thank you.
                               
                              Liz


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                            • Wendy
                              Hi Liz, Hope this info is helpful. Perhaps you could discuss this with your physio first, as Zak is still quite mobile so able to do most of these with just a
                              Message 14 of 23 , Jan 11, 2008
                              • Wendy
                                Hi Liz, Hope this info is helpful. Perhaps you could discuss this with your physio first, as Zak is still quite mobile so able to do most of these with just a
                                Message 15 of 23 , Jan 11, 2008
                                • patsarah2006
                                  Liz, I am familiar with Botox. It has been used in rehab since at least the early 90 s. I am no expert but from what I gather it is an injectible form of
                                  Message 16 of 23 , Jan 12, 2008
                                    Liz,
                                    I am familiar with Botox. It has been used in rehab since at least the
                                    early 90's. I am no expert but from what I gather it is an injectible
                                    form of botulism. When injected in small amounts it "paralyzes" a
                                    muscle for several weeks. It is usually used with high muscle tone
                                    (e.g. stroke, CP, etc). My girlfriend has a son with Leigh's disease
                                    and her son gets Botox every 6 weeks in his hips with good results.
                                    You may have heard of it being commonly used to reduce wrinkles.

                                    Another stretching technique that may be affected is "contract-relax"
                                    to stretch the flexors you have the child actively contract the leg in
                                    the opposite direction (extension). The idea is that the brain works
                                    to inhibit one muscle group when it is contracting the reverse. Geez,
                                    it's hard to explain in an e-mail but maybe your PT is familiar. I
                                    think any functional activities that do the same thing would be great,
                                    too (like standing). The leg braces sound effective and Wendy had some
                                    clever tips, too.

                                    Good luck with Chaz. Sarah
                                  • Scott & Betsy Grant
                                    I also know of a case recently where a piano player had, for an unknown reason, developed some kind of contractures in his fingers, and was treated with botox
                                    Message 17 of 23 , Jan 12, 2008
                                      I also know of a case recently where a piano player had, for an unknown reason, developed some kind of contractures in his fingers, and was treated with botox and it cured them! It was on the news recently.

                                      On Jan 12, 2008 3:34 PM, patsarah2006 <patsarah@...> wrote:

                                      Liz,
                                      I am familiar with Botox. It has been used in rehab since at least the
                                      early 90's. I am no expert but from what I gather it is an injectible
                                      form of botulism. When injected in small amounts it "paralyzes" a
                                      muscle for several weeks. It is usually used with high muscle tone
                                      (e.g. stroke, CP, etc). My girlfriend has a son with Leigh's disease
                                      and her son gets Botox every 6 weeks in his hips with good results.
                                      You may have heard of it being commonly used to reduce wrinkles.

                                      Another stretching technique that may be affected is "contract-relax"
                                      to stretch the flexors you have the child actively contract the leg in
                                      the opposite direction (extension). The idea is that the brain works
                                      to inhibit one muscle group when it is contracting the reverse. Geez,
                                      it's hard to explain in an e-mail but maybe your PT is familiar. I
                                      think any functional activities that do the same thing would be great,
                                      too (like standing). The leg braces sound effective and Wendy had some
                                      clever tips, too.

                                      Good luck with Chaz. Sarah


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