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

RE: [Myotubular_Myopathy] New to this group need some help

Expand Messages
  • Jessica Juckers
    Hi Tina, I am glad you found this group, the people here are amazing, and let you know you are not alone. I have a son who, Jack who is 14 months old. He has a
    Message 1 of 14 , Nov 1, 2003
    • 0 Attachment

      Hi Tina,

       

      I am glad you found this group, the people here are amazing, and let you know you are not alone.

      I have a son who, Jack who is 14 months old. He has a G-tube, Trachy is on a Vent.

       

      We were told the same thing, that it was unfair to keep Jack on support as we had a 4 year old at the time to think about, we do not have home nursing here in Australia. So its hard to get support..

       

      I hope to hear more about you and your family,

       

      Take care

      Jessica

       

      Jacks webpage : www.caringbridge.org/oceania/jack

       

       

      -----Original Message-----
      From: miracleshappenant01 [mailto:miracleshappenant01@...]
      Sent: Thursday, 30 October 2003 7:01 AM
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] New to this group need some help

       

      Hi everyone, my name is Tina Katz and I live in Monroe, CT  with my 4
      sons and husband.  My baby Anthony not a baby anymore has Myotubular
      Myopathy MTM1.  He is 21/2 years old now and I am so very proud of
      him.  At birth we had no idea that anything was wrong until I
      delivered and he wasn't breathing on his own.  He was trached and
      given a G-tube at 3 months.  Prior to that I was told that Anthony
      would have brain damage and it would be a unfair life for him and my
      other 3 boys if we kept him on life support.  Well with the support
      of our family and God's love we knew what the right thing to do was. 
      He knows about 30 signs, he is so active and catches on so quickly to
      act out all the nursery rymes.  I guess in 2 years I never knew these
      groups existed.  It would be great to be able to talk to another mom
      that truly can say I know what your going through.  Please let me
      know if this is how I am supposed to communicate. 
      Thank You so much,  Tina




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



      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
    • connie guinn
      Hi, Pat! Yes, my immediate family is very supportive (husband, daughter, myself). As far as extended family goes- it is varied. We moved 9 hours away from
      Message 2 of 14 , Nov 1, 2003
      • 0 Attachment
        Hi, Pat!
        Yes, my immediate family is very supportive (husband,
        daughter, myself). As far as extended family goes- it
        is varied. We moved 9 hours away from all of our
        family (due to husband's job change) just 3 months
        before Benjamin was born. Most everyone came down
        when he was born and were supportive at the time,
        however, not living near him has skewed that original
        intent. I have even had close family suggest that
        after all these months I might reconsider taking my
        son off of the ventilator or maybe 'putting him in
        some kind of a HOME'. I know they are trying to think
        of what would be best for us- but, what about
        Benjamin? What about what's best for him? This
        saddens me that they view him the way a lot of medical
        personnel in the past (and present) viewed him- of
        course, a lot of them are medical personnel...
        As far as family history goes, it is very strange. My
        mother's family has a long history of male babies
        dying after birth: my great grandmother had 11 infant
        boys die shortly after birth, my grandmother had 1
        male neonate die shortly after birth, my mother had
        one male infant die, my aunt had 3 singleton male
        neonates and 1 set of twin male neonates die shortly
        after birth- in addition she had another set of male
        twins and one died shortly after birth, the other one
        is my cousin, John. She also had a set of girl twins.
        In 1987, one of these twins- my cousin, Shelly, had
        a male baby- who was very premature- who died 4 hours
        after being born. In 1989, she had a full term baby
        boy who was having trouble breathing. He was admitted
        to the NICU in a Missouri Children's hospital- 3 mos
        later, he was diagnosed with centro nuclear myopathy,
        and Shelly was told there was no hope for him
        (Gregory) and that they should be 'humane' and turn of
        the ventilator. They agreed at first, but she
        couldn't stand it and she made them re-intubate him.
        Several more times they pressured her to take him off,
        but each time, she had them put the tube back in. The
        last time this was done, Gregory surprised them all
        and began to breathe on his own! An hour later, he
        was still breathing on his own, and 3 days later, he
        was still breathing with no assistance! So, he was
        discharged to their home with a portable suction
        machine and an NG tube. They had him home for
        approximately 4 mos when a tragic thing happened.
        While in the car, their portable suction machine broke
        down. Sadly, by the time they could get him anywhere
        for help, it was too late- he aspirated and died.
        Then, the children's hospital contacted Shelly and
        said they were doing research on centro nuclear
        myopathy and that it was very rare. In fact, they
        were the "ONLY FAMILY IN THE USA REPORTED AS HAVING
        THIS" and they were certainly "THE ONLY FAMILY IN THE
        USA WITH A FAMILIAL LINKAGE OF CNM" So, they
        requested blood from everyone in the family who was
        sill alive, and they tested us. Using linkage
        analysis, they reported who was and was not a carrier.
        My mother was reported as a carrier. So were one of
        my sisters and I. Remember though, this 'research'
        was done in 1989, and the MTM1 gene was not discovered
        until 1996. Well, at the time, I was 17 years old,
        far removed from the rest of my mom's family (my
        father was in the military). In fact, I never knew
        this cousin of mine at all. Essentially, I tucked
        away this information on a back burner of my mind. I
        got married in 1994, and my daughter was born in 1995.
        In August of 2000, the children's hospital in
        Missouri re-contacted my cousin to tell her that they
        were going back over old research and they realized
        that all of the testing had been done incorrectly and
        that all of the results were skewed and wrong and that
        if we wanted to know real (true) results, we would
        have to get retested. Only, now they weren't't doing
        research anymore so we would each have to be tested at
        the U. of Chicago at the cost of $3,000 each.
        Knowing that no one had the money for this, and
        thinking that no one except she and her husband were
        interested, she told only one aunt about being
        contacted. In Sept of 2000, I became pregnant again.
        I was elated! it had been 6 long years of trying
        with no avail. The genetic testing done 11 years
        earlier was not on my mind at all- I had completely
        forgotten. My mother, however, did not, and she
        worried incessantly (to herself). Finally, she told
        my sisters her fear, and they approached me. 'How
        silly,' I thought. 'Such worriers!' When the first
        ultrasound revealed that I was carrying a boy- they
        really fretted. I brushed them casually aside,
        thinking, 'have they nothing better to do?' Our
        insurance did not cover the genetic testing from Uof
        Chicago. 'Just as well,' I thought. I mean, who wants
        to go through 5 more months of being pregnant, all the
        while KNOWING that something is wrong with their
        child? Not me. So, on June 21, 2001, my son, Elijah,
        was born! He was so beautiful and tiny and thin and
        floppy and... he wasn't breathing. 'This is not real.
        It isn't happening- it will all go away soon,' I
        thought. Then I watched while, for 30 minutes, my
        precious child was 'bagged', all the while being
        coaxed to breathe by the nurse who was squeezing the
        bag. I wanted to jump off of the bed and help him-
        his seemingly lifeless body kept puffing up off of and
        then, alternately, sinking back down onto the isolette
        with each contraction of the am-bu bag. Finally, the
        pediatrician arrived. (There are no major medical
        facilities where he was born). Elijah was swaddled
        quickly and placed in my arms for a few brief seconds.
        I could finally see his tiny little face, his thick,
        jet black hair, his beautiful long hands. I called
        out to him and he opened his eyes! Yes, he even
        turned his head in our direction, and he opened his
        mouth as if to cry- but no sound came out, only
        silence. All the while his color was becoming more
        and more dusky. He was whisked away and I was left
        numb, wondering what had just happened. Suddenly, I
        thought of LeeAnn- where was she? I needed to hold
        her. I wanted to be the one to tell her about her
        brother. My brother-in-law had taken LeeAnn and her
        cousins out to eat. I demanded to go to the nursery
        to see my son. When I arrived, I saw this big (22
        inches long) boy with this tiny frail body, hooked up
        to so many machines and wires. He looked so perfect,
        so peaceful. I asked to hold him. When he was placed
        in my arms it felt as if he were a hollow toy with
        some sort of battery-operated mechanism inside (the
        ventilator). I immediately fell in love! All around
        me was sadness- everywhere I looked. From family, to
        the nurses, to visitors, to the physicians- all were
        grim-faced or weeping, but I was smiling. I was
        proud! the doctor came over and told me that there
        was no hope for him. I just stared at him blankly. He
        said that my son would not live. 'Where is LeeAnn?' I
        thought again. She was so looking forward to having a
        baby brother- now what will she do? I don't want
        anyone else to tell her! Besides, they are wrong. We
        will just wait this out until morning- it will all be
        fine. But all evening long, people kept coming in
        weeping as if they were saying goodbye to him, in
        fact, they were saying 'goodbye' to him and 'I'm
        sorry' to us. The next morning, we were told that he
        was just barely alive. He was dying, cellularly,
        before our eyes. That it would be so much nicer for
        us if we could remember holding him without all the
        wires and tubes attached, but we only had a window of
        opportunity to do this, because he was slipping away
        minute by minute. We kept pushing the decision off
        longer and longer. But they were relentless. We were
        so tired and confused and scared. We didn't want our
        baby to die- and we certainly did not want to be the
        decider's of such fate. But, these are the
        'professionals'. Don't they know what they are
        talking about? Even family members who have medical
        backgrounds said things looked grim. Do we not have
        any support? Are we fools for not wanting what seemed
        so obviously right to all the 'knowledgeable' people?
        We argued to the last minute and persisted in 'just a
        little while longer' until we were exhausted.
        Regrettably, we relented, and our sweetie baby was
        extubated, and the machines were turned off. They
        handed him to us- he just kept looking up at us, his
        eyes moving back and forth from one of us to the
        other. We held him and rocked him and sung to him and
        prayed over him and cried for him for what seemed like
        only seconds... Soon, he was turning a different
        color. Is this real? LeeAnn ran to get the rest of
        the family; the rest of the time, Elijah was passed
        around from one person to the next, as each one took
        turns holding him and rocking him and weeping over
        him. I held him and held him and held him. I have
        never cried so much or so intensely in my life. I
        can't even tell you when it was that he passed- there
        was no definite moment. All together we had him alive
        with us for only 23 1/2 hours. A man from the funeral
        home came to get him, and we had to sign papers. I
        looked over at the isolette where he had lain, and I
        saw a small, square-shaped, bundle wrapped in the
        blankets used to line the isolettes. I walked over
        and laid my hand on the bundle- it was firm, a very
        snug wrap. But it definitely held the form of a small
        body. I knew this was what was left of my son. I
        turned away with bitter tears and a broken heart. An
        hour later, I walked out of the hospital with his
        packed diaper bag, my overnight bag, the balloons I
        had received during labor, and my daughter in my arms.
        Remorse? Regret? Constant sheering pain? Wishing
        for a second chance? A never- ending ache? Wondering
        how in the world so much could have occurred in so
        little time? Wondering how such a previously avid
        anti-euthanasia person could come to such a result?
        Me, too. It was all so sudden and so quick. We were
        so pressured and felt so isolated, alone, and
        powerless. Mix that with the extreme exhaustion, and
        emotional turbulence that go along with childbearing,
        and maybe there's an answer. Maybe I can now look not
        so judgmentally on those who have made similar
        choices. Maybe this experience made us strong enough
        to fight for Benjamin- no matter what. I believe
        things happen for a reason. I don't know what all the
        reasons are, but in the end, it all works out- doesn't
        it? Six months after Elijah was born, I became
        pregnant again. At 4 months, I found out it was a
        boy. At 6 months, we had a major career adjustment
        and we ended up moving- 9 hours away from our
        families. Benjamin was born on Sept 12, 2002 in a
        major city, near a major children's hospital. We had
        no idea going into the labor whether or not he would
        be affected, but we were prepared. We told them the
        possibilities, what the old literature says, what the
        reality is, what we wanted, and what they were to do-
        if he was affected. Because of this, they prepared
        the neonatology team and we planned an induction date.
        Benjamin, however, had other plans! He came 3 days
        before the planned induction!! Even so, the neo team
        was prepared- even at 1 am! He was intubated 6
        minutes after being born. He was in the NICU for 2
        1/2 months before he finally came home with us. He
        is an absolute treasure and a joy! A lot of hard
        work, too, but aren't all good things? I say, YES!!!
        Tonight is my night up with him- we do not have
        nurses on the weekends. Godspeed.
        -Connie
        --- redscootee@... wrote:
        > Connie,
        > Sounds like your family is very supportive.
        > You are right! Benjamin does sound like he is a very
        > bright young man.
        > Looking forward to hearing more about your family.
        > I gave info on my family on my reply to Tina.
        > Meant to ask her too does anyone else in your family
        > have mtm? We think
        > my mom did but she passed away before we were dx'd
        > 13 years ago. We have
        > just had a firm dx of mtm for 5 years.
        > take care pat
        > <a
        >
        href="http://www.wtv-zone.com/mdaww/indexzep1.html">Wide
        > World of
        > MD</a>
        >
        >





        __________________________________
        Do you Yahoo!?
        Exclusive Video Premiere - Britney Spears
        http://launch.yahoo.com/promos/britneyspears/
      • dhahjh
        Tina, HI! I am glad you found this group also (I am also happy that it has been so active lately), because I love communicating with other mtm parents. Your
        Message 3 of 14 , Nov 2, 2003
        • 0 Attachment
          Tina, HI! I am glad you found this group also (I am also happy that
          it has been so active lately), because I love communicating with
          other mtm parents. Your story sounds much like ours. My son,
          Jacob, was born at 40 gest. age. We had no indication that anything
          would go wrong (although we knew my family history, but of course
          thought, "It will never happen to us!"). His doctor also told us
          that it would be best for us to take him off the vent, but from what
          we knew from my family history, these boys live happy, productive
          lives; there was no way we were letting that happen. The ONLY
          reason he was on/off the vent so much in the beginning was because
          he kept aspirating his oral secretions, so we began pushing for a
          trach and g-tube, and he finally got it at 5 weeks of age. He came
          home 10 days later and it has only been uphill since. He is know 21
          months (as of tomorrow) and is just as sharp as a tack. He just
          amazes me more and more everday with his intelligence and humor. I
          read were Connie said that Ben falls over purposefully when they try
          to sit him up. Jacob did/still does the same thing and he just
          thinks it is so funny. He will also fall back when I am holding him
          on my lap. He is also acts out "Itsy-Bitsy Spider" and "Twinkle,
          Twinkle Little Star".

          Your family sounds divine, but you must be one busy mom! WOW! Four
          boys. I just have my Jacob and I feel overwhelmed sometimes, but I
          won't complain anymore; I will just think of you :-)
          Again, it is great to be able to chat with you. I hope we can keep
          this board busy. I like it especially because it is such a small
          group.

          Take care, Amanda (Jacob's mom)

          --- In Myotubular_Myopathy@yahoogroups.com, "miracleshappenant01"
          <miracleshappenant01@y...> wrote:
          > Hi everyone, my name is Tina Katz and I live in Monroe, CT with
          my 4
          > sons and husband. My baby Anthony not a baby anymore has
          Myotubular
          > Myopathy MTM1. He is 21/2 years old now and I am so very proud of
          > him. At birth we had no idea that anything was wrong until I
          > delivered and he wasn't breathing on his own. He was trached and
          > given a G-tube at 3 months. Prior to that I was told that Anthony
          > would have brain damage and it would be a unfair life for him and
          my
          > other 3 boys if we kept him on life support. Well with the
          support
          > of our family and God's love we knew what the right thing to do
          was.
          > He knows about 30 signs, he is so active and catches on so quickly
          to
          > act out all the nursery rymes. I guess in 2 years I never knew
          these
          > groups existed. It would be great to be able to talk to another
          mom
          > that truly can say I know what your going through. Please let me
          > know if this is how I am supposed to communicate.
          > Thank You so much, Tina
        • dhahjh
          Connie, That is so fantastic that Ben can talk above his trach. Jacob has always made sounds above his, but never said anything. He now wears a passy-muir
          Message 4 of 14 , Nov 2, 2003
          • 0 Attachment
            Connie, That is so fantastic that Ben can talk above his trach.
            Jacob has always made sounds above his, but never said anything. He
            now wears a passy-muir valve and has always made preliminary
            sounds. He also says "Hi", "uh-huh", and "huh-huh" - very cute. We
            are trying so hard to get him to talk and he actually mouths the
            words sometimes, but is having a hard time putting sound to it. He
            does know many signs, for which I am very thankful. He has no
            problem telling us exactly what he wants. Jacob also like to be
            hung upside down. His face will turn bright red and he just keeps
            signing, "more, more, more!". Too cute!

            Amanda (Jacob's mom)


            --- In Myotubular_Myopathy@yahoogroups.com, connie guinn
            <kookla_g@y...> wrote:
            > Hi, Tina! My name is Connie. I live in Texas with my
            > husband, son, and daughter. My son, Benjamin, now 13
            > mos old, was born with mtm. He was floppy at birth
            > and unable to breathe and so was intubated. A month
            > later he was trached and given a g-tube. We were told
            > that he wouldn't live to be 1 year old. He is
            > incredible! He is such a delight- so loveable! His
            > big sister, LeeAnn, adores him- she is his second
            > 'mom':o) Benjamin talks above his trach; he says
            > 'mama', 'dada', 'no-no', 'baba', 'wa-wa-wa', etc. He
            > is working on sign language and can sign'eat' and
            > "mother' and 'father'. He loves books and being read
            > to. He also loves being swung upside down by his
            > feet! He has been home since he was 2 1/2 mos. And
            > he is as smart as a whip!! I mean, this kid is
            > brilliant!! We love him tremendously, and do not
            > regret fighting for his life. I have a sense of what
            > you have gone through, but I can't imagine having 3
            > others at the same time!! I am here to talk with you
            > about anything- please feel free to write again. This
            > group is very friendly and helpful. Godspeed.
            > -Connie
            > --- miracleshappenant01
            > <miracleshappenant01@y...> wrote:
            > > Hi everyone, my name is Tina Katz and I live in
            > > Monroe, CT with my 4
            > > sons and husband. My baby Anthony not a baby
            > > anymore has Myotubular
            > > Myopathy MTM1. He is 21/2 years old now and I am so
            > > very proud of
            > > him. At birth we had no idea that anything was
            > > wrong until I
            > > delivered and he wasn't breathing on his own. He
            > > was trached and
            > > given a G-tube at 3 months. Prior to that I was
            > > told that Anthony
            > > would have brain damage and it would be a unfair
            > > life for him and my
            > > other 3 boys if we kept him on life support. Well
            > > with the support
            > > of our family and God's love we knew what the right
            > > thing to do was.
            > > He knows about 30 signs, he is so active and catches
            > > on so quickly to
            > > act out all the nursery rymes. I guess in 2 years I
            > > never knew these
            > > groups existed. It would be great to be able to
            > > talk to another mom
            > > that truly can say I know what your going through.
            > > Please let me
            > > know if this is how I am supposed to communicate.
            > > Thank You so much, Tina
            > >
            > >
            > >
            >
            >
            > __________________________________
            > Do you Yahoo!?
            > Exclusive Video Premiere - Britney Spears
            > http://launch.yahoo.com/promos/britneyspears/
          • redscootee@webtv.net
            Connie, My husband is very supportive. I am an only child. My mom passed away 16 years ago before we had a dx even of md. Looking back she also most likely was
            Message 5 of 14 , Nov 3, 2003
            • 0 Attachment
              Connie,
              My husband is very supportive. I am an only child. My mom passed away 16
              years ago before we had a dx even of md. Looking back she also most
              likely was a manifesting carrier. My dad finally went in for the blood
              test and does not have md. Thus he does not talk about it at ALL with
              me. He will either change the subject or not reply at all. I contributed
              to an article in the Quest magazine about family reactions and then I
              sent him the article. Never heard if he read it or not. Here is the page
              if you care to read it.
              <a href="http://www.wtv-zone.com/mdaww/family.html">Family Reactions to
              MD</a>
              Although our situations are different I can understand the
              disappointment and heartache family can cause.
              I have often wondered if I knew that we had x linked myotubular myopathy
              would I have still had my children and I can't see how I would have done
              things differently.
              As you say about Benjamin is such a joy!
              If you ever need to vent cuz family is giving you a hard time vent away!
              (G) BTDT
              I was wondering if you would mind if I put your story about Elijah and
              Benjamin on our site? I was fortunate, to have had my daughter Jennifer
              for 32 years before she succumbed to a complication of xmtm. When my son
              found out he has xmtm he blamed me. I just told him I had no way of
              knowing we had it and no matter what I love him very much. He is finally
              accepting it and taking better care of himself. He is 28.
              We also have an article on our site about mtm that is very inspirational
              also. It talks about the doc thinking the one patient would not live
              beyond his first year and he is still thriving at 12? not sure of his
              age now. He will accompany her on lectures from time to time. Nice to
              see when a doc can admit they were wrong. (S) Here is the article. <a
              href="www.wtv-zone.com/mdaww/mtm.html">MTM</a>
              In todays day and age kids are given a much better chance of living
              longer and better quality of lives.
              You and others on this list are like a breath of fresh air. Your
              children are so precious and are lucky to have the parents they do that
              show through lots of hard work and love anything is possible.
              If anyone else would like to send their story or has a web site we would
              love to include yours as well. We feel it is important to get the word
              out on md. I get so tired of ppl saying oh you have ms. (GRR)
              Have really enjoyed all the successes of your children. Tx for sharing.
              Someone had asked where everyone was from. My husband and I live in
              Roanoke, VA U.S.A., at the foot of the Blue Ridge Mountains. Beautiful
              view out our windows.
              take care pat
            • connie guinn
              Pat, Thanks for your response- you certainly do have a lot of experiences to share. I read the article- that is so accurate. How would I go about putting
              Message 6 of 14 , Nov 4, 2003
              • 0 Attachment
                Pat, Thanks for your response- you certainly do have a
                lot of experiences to share. I read the article- that
                is so accurate. How would I go about putting
                Elijah's and Benjamin's stories on your site? I know
                the boy that you were mentioning (from your site).
                His name is John Scoggin. We live 30 minutes from
                them and we are in touch with them quite often. Take
                care. Godspeed.
                -Connie
                --- redscootee@... wrote:
                > Connie,
                > My husband is very supportive. I am an only child.
                > My mom passed away 16
                > years ago before we had a dx even of md. Looking
                > back she also most
                > likely was a manifesting carrier. My dad finally
                > went in for the blood
                > test and does not have md. Thus he does not talk
                > about it at ALL with
                > me. He will either change the subject or not reply
                > at all. I contributed
                > to an article in the Quest magazine about family
                > reactions and then I
                > sent him the article. Never heard if he read it or
                > not. Here is the page
                > if you care to read it.
                > <a
                >
                href="http://www.wtv-zone.com/mdaww/family.html">Family
                > Reactions to
                > MD</a>
                > Although our situations are different I can
                > understand the
                > disappointment and heartache family can cause.
                > I have often wondered if I knew that we had x linked
                > myotubular myopathy
                > would I have still had my children and I can't see
                > how I would have done
                > things differently.
                > As you say about Benjamin is such a joy!
                > If you ever need to vent cuz family is giving you a
                > hard time vent away!
                > (G) BTDT
                > I was wondering if you would mind if I put your
                > story about Elijah and
                > Benjamin on our site? I was fortunate, to have had
                > my daughter Jennifer
                > for 32 years before she succumbed to a complication
                > of xmtm. When my son
                > found out he has xmtm he blamed me. I just told him
                > I had no way of
                > knowing we had it and no matter what I love him very
                > much. He is finally
                > accepting it and taking better care of himself. He
                > is 28.
                > We also have an article on our site about mtm that
                > is very inspirational
                > also. It talks about the doc thinking the one
                > patient would not live
                > beyond his first year and he is still thriving at
                > 12? not sure of his
                > age now. He will accompany her on lectures from time
                > to time. Nice to
                > see when a doc can admit they were wrong. (S) Here
                > is the article. <a
                > href="www.wtv-zone.com/mdaww/mtm.html">MTM</a>
                > In todays day and age kids are given a much better
                > chance of living
                > longer and better quality of lives.
                > You and others on this list are like a breath of
                > fresh air. Your
                > children are so precious and are lucky to have the
                > parents they do that
                > show through lots of hard work and love anything is
                > possible.
                > If anyone else would like to send their story or has
                > a web site we would
                > love to include yours as well. We feel it is
                > important to get the word
                > out on md. I get so tired of ppl saying oh you have
                > ms. (GRR)
                > Have really enjoyed all the successes of your
                > children. Tx for sharing.
                > Someone had asked where everyone was from. My
                > husband and I live in
                > Roanoke, VA U.S.A., at the foot of the Blue Ridge
                > Mountains. Beautiful
                > view out our windows.
                > take care pat
                >
                >


                __________________________________
                Do you Yahoo!?
                Protect your identity with Yahoo! Mail AddressGuard
                http://antispam.yahoo.com/whatsnewfree
              • redscootee@webtv.net
                Connie, Thanks so much for allowing us to share your story. I will put it on our site and let you know when it is on. Does Benjamin have a favorite color or
                Message 7 of 14 , Nov 5, 2003
                • 0 Attachment
                  Connie, Thanks so much for allowing us to share your story. I will put
                  it on our site and let you know when it is on. Does Benjamin have a
                  favorite color or cartoon character or something? If he does I will try
                  and look for a background along those lines for the story.
                  Like Toni mentioned in her email ppl seems to enjoy reading the personal
                  stories. I think it gives them a much better picture of what living with
                  a nmd is like.
                  take care pat
                • connie guinn
                  Pat, benjamin s favorite, by far, is Elmo!! Godspeed. -Connie ... __________________________________ Do you Yahoo!? Protect your identity with Yahoo! Mail
                  Message 8 of 14 , Nov 6, 2003
                  • 0 Attachment
                    Pat,
                    benjamin's favorite, by far, is Elmo!! Godspeed.
                    -Connie
                    --- redscootee@... wrote:
                    > Connie, Thanks so much for allowing us to share your
                    > story. I will put
                    > it on our site and let you know when it is on. Does
                    > Benjamin have a
                    > favorite color or cartoon character or something? If
                    > he does I will try
                    > and look for a background along those lines for the
                    > story.
                    > Like Toni mentioned in her email ppl seems to enjoy
                    > reading the personal
                    > stories. I think it gives them a much better picture
                    > of what living with
                    > a nmd is like.
                    > take care pat
                    >
                    >


                    __________________________________
                    Do you Yahoo!?
                    Protect your identity with Yahoo! Mail AddressGuard
                    http://antispam.yahoo.com/whatsnewfree
                  Your message has been successfully submitted and would be delivered to recipients shortly.