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  • dotj67
    It s been awhile since I have wrote, because I just recently got my own computer. My son Nicholas is doing very well. He is growing fast. He is 15 months old
    Message 1 of 12 , May 4, 2003
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      It's been awhile since I have wrote, because I just recently
      got my own computer. My son Nicholas is doing very well. He is
      growing fast. He is 15 months old now and he weighs 20 lbs. and is 31
      inches long. We just changed from similac w/iron to Nutrim Jr. So he
      he's a big boy now. He loves to go outside in his swing. he is just
      doing really good!How is everyone else and their families doing.
      Hopefully as good as ours. Everyone write back as soon as you can.
      Take care.

      Dorothy
    • dotj67
      Hi just writing to say hi to everyone glad to see that all the boys are doing good right now. Nicholas is doing good getting over a bacterial infection in the
      Message 2 of 12 , Mar 12, 2004
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        Hi just writing to say hi to everyone glad to see that all the boys
        are doing good right now. Nicholas is doing good getting over a
        bacterial infection in the trach it's called pseudomonas he had a
        very mild case of it thank goodness because he had it once before had
        to be on oxygen.Take care everybody Dorothy

        p.s. Amanda Jacob looks adorable with is glasses
      • Amanda
        Hi Dorothy, Good to hear from you. I am happy to hear that Nicholas is doing well. Yes, pseudomonas can be yucky to deal with, but, thankfully Nic pulled
        Message 3 of 12 , Mar 15, 2004
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          Hi Dorothy, Good to hear from you. I am happy to hear that
          Nicholas is doing well. Yes, pseudomonas can be yucky to deal with,
          but, thankfully Nic pulled through.

          Thanks for the comment about Jacob in his glasses. He is such a ham
          these days, especially with them on. He is so funny!

          Take care, Amanda


          --- In Myotubular_Myopathy@yahoogroups.com, "dotj67"
          <kdjordan1025@e...> wrote:
          > Hi just writing to say hi to everyone glad to see that all the
          boys
          > are doing good right now. Nicholas is doing good getting over a
          > bacterial infection in the trach it's called pseudomonas he had a
          > very mild case of it thank goodness because he had it once before
          had
          > to be on oxygen.Take care everybody Dorothy
          >
          > p.s. Amanda Jacob looks adorable with is glasses
        • dotj67
          Hi, Glad to hear that Matthew had a great b-day. Iknow I don t get to talk to many people on here but I do read all the e-mails it s nice to here about the
          Message 4 of 12 , Jun 1, 2004
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            Hi, Glad to hear that Matthew had a great b-day.

            Iknow I don't get to talk to many people on here but I do read
            all the e-mails it's nice to here about the boys my son Nicholas is
            doing good about 2 weeks ago he had ear tubes put in and he did real
            good, in and out at the hospital which was very nice.

            Sorry to hear Jessica that Jack is not feeling so well right now.

            Also I have a question about the royal potty is that a good potty
            to start training the boys with I would like to try and start Nic
            just to see how he does. Also the family trike I read one of the
            grandparents as it for their grandson just trying to get some good
            input about these items I try to make things has normal for Nic that
            we can.
            Well everyone take care Dorothy J.
          • ANN MILLER
            Hi Dorothy, My grandson, Kyle, has the Family Trike. He loves it! Plays with it everyday. It has a really nice seat with a belt. The handle you control
            Message 5 of 12 , Jun 1, 2004
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              Hi Dorothy,
               
              My grandson, Kyle, has the Family Trike.  He loves it!  Plays with it
              everyday.   It  has a really nice seat with a belt.  The handle you
              control which way he can go.  We use it sometimes at the store
              as a stroller.  The handle can come off also, when you use it in the
              house. 
               
              Kyle needs to get ear tubes too!  Sometime in the next 4 weeks. 
              The doctor has to fit him in his schedule at the hospital.   Did Nicholas
              have any desat episodes because of his ears?  Kyle has had 3 now
              so they seem to think it is from his reaccurring ear infections.  How old is
              Nicholas?  Kyle is 2 and 1/2 years old.
               
              Take care,
              Darlene
               
              ----- Original Message -----
              From: dotj67
              Sent: Tuesday, June 01, 2004 4:39 PM
              Subject: [Myotubular_Myopathy] hi everyone

              Hi, Glad to hear that Matthew had a great b-day.
                
                  Iknow I don't get to talk to many people on here but I do read
              all the e-mails it's nice to here about the boys my son Nicholas is
              doing good about 2 weeks ago he had ear tubes put in and he did real
              good, in and out at the hospital which was very nice.

                  Sorry to hear Jessica that Jack is not feeling so well right now.

                  Also I have a question about the royal potty is that a good potty
              to start training the boys with I would like to try and start Nic
              just to see how he does. Also the family trike I read one of the
              grandparents as it for their grandson just trying to get some good
              input about these items I try to make things has normal for Nic that
              we can.
                  Well everyone take care Dorothy J.


            • Shannon
              Javad had recurring respiratory issues last year that resulted in multiple hospitalizations. Last summer we had Javad s ears tested and found out that he
              Message 6 of 12 , Jun 1, 2004
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                Javad had recurring respiratory issues last year that resulted in
                multiple hospitalizations. Last summer we had Javad's ears tested
                and found out that he couldn't hear very well. In October, we had
                ear tubes placed (his hearing was so much better!) and then, after 2
                ear infections, we started giving him one teaspoon of Augmentin a
                day as a prophylactic dose. He had a good winter which I attribute
                to the tubes and the meds. I think his ear infections were
                contributing to his respiratory issues.

                ON the potty front, we couldn't find the royal potty :(, but got the
                baby bjorn kind at babys 'r us. It is small and his bottom fits
                great! It has a back to lean on and arm rests. Anyway, Javad likes
                it, but it is good.

                Talk to you later,

                Shannon
              • redscootee@webtv.net
                Dorothy, I did a search on google and herre are the two links I came up with. Not familiar with either product but I am sure others on the list can tell you
                Message 7 of 12 , Jun 1, 2004
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                  Dorothy, I did a search on google and herre are the two links I came up
                  with. Not familiar with either product but I am sure others on the list
                  can tell you about them. take care HTH pat
                  <a
                  href="http://www.amazon.com/exec/obidos/tg/detail/-/B000067QMJ/103-3429302-1602208?v=glancel">Royal
                  Potty</a>
                  <a href="http://www.radioflyer.com/trikes/trikes_48.htm">Family
                  Trike</a>
                • Amanda
                  Hi Dorothy, Good to hear from you! I got the Royal Potty (from Target) for Jacob after reading that Benjamin, Connie s son, has one. It is good for Jacob
                  Message 8 of 12 , Jun 2, 2004
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                    Hi Dorothy, Good to hear from you! I got the Royal Potty (from
                    Target) for Jacob after reading that Benjamin, Connie's son, has
                    one. It is good for Jacob because it has a little back on it so it
                    helps support him. He sits on it really well. Although he doesn't
                    like to be on it too long, he will sit there and watch T.V. He has
                    also gone #1 many times in it. I mentioned before that I had been
                    researching the different special needs potty chairs that are out
                    there. They are VERY expensive. The Royal Potty will give Jacob a
                    great start and hopefully we will be able to obtain a special needs
                    potty later.

                    About the tricycle - after looking at it online, I went to Toys-R-Us
                    to have a better look. They actually make several different sizes
                    and we are looking at getting Jacob the largest one sometime this
                    summer. I think it something that he will also enjoy.

                    I am glad to hear Nic is doing well. Jacob had ET tubes placed in
                    January 2003 and he hasn't had any problems at all since. Before
                    the surgery he had an ear infection for over 4 months and was on 5
                    different antibiotics. However, after the tube placement, he has
                    not had any more ear problems.

                    Take care, Amanda

                    --- In Myotubular_Myopathy@yahoogroups.com, "dotj67"
                    <kdjordan1025@e...> wrote:
                    > Hi, Glad to hear that Matthew had a great b-day.
                    >
                    > Iknow I don't get to talk to many people on here but I do read
                    > all the e-mails it's nice to here about the boys my son Nicholas
                    is
                    > doing good about 2 weeks ago he had ear tubes put in and he did
                    real
                    > good, in and out at the hospital which was very nice.
                    >
                    > Sorry to hear Jessica that Jack is not feeling so well right
                    now.
                    >
                    > Also I have a question about the royal potty is that a good
                    potty
                    > to start training the boys with I would like to try and start Nic
                    > just to see how he does. Also the family trike I read one of the
                    > grandparents as it for their grandson just trying to get some good
                    > input about these items I try to make things has normal for Nic
                    that
                    > we can.
                    > Well everyone take care Dorothy J.
                  • dotj67
                    Hi Everyone , My name is Dorothy I havent written anything for awhile we have been busy with our son Nicholas he is almost 3 yrs old in January. He has mtm,
                    Message 9 of 12 , Dec 6, 2004
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                      Hi Everyone ,

                      My name is Dorothy I havent written anything for awhile we
                      have been busy with our son Nicholas he is almost 3 yrs old in
                      January. He has mtm, but doing very well right now these boys are
                      amazing arent they. I don't always get a chance to be on the computor
                      with working and caring for Nicholas some days are very hectic. I try
                      to get on aleast once a week to check e-mail than I get read
                      everyone's postings. This is a very good group hopefully I will be
                      able to write more and get a chance to talk with you all again. Well
                      everyone take care.God Bless Dorothy J.
                    • Shannon
                      Hi Dorothy, Glad to see you back. Have thought about Nicholas and hoped all was well! Shannon
                      Message 10 of 12 , Dec 6, 2004
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                        Hi Dorothy,

                        Glad to see you back. Have thought about Nicholas and hoped all was
                        well!

                        Shannon
                      • ANN MILLER
                        Hi Dorothy, Glad to hear Nicholas is doing good. Kyle will be 3 years old December 15th. Take care, Darlene ... From: dotj67 To:
                        Message 11 of 12 , Dec 7, 2004
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                          Hi Dorothy,
                           
                          Glad to hear Nicholas is doing good.  Kyle will be 3 years old December 15th. 
                           
                          Take care,
                           
                          Darlene
                          ----- Original Message -----
                          From: dotj67
                          Sent: Monday, December 06, 2004 12:48 PM
                          Subject: [Myotubular_Myopathy] hi everyone


                          Hi Everyone ,

                                My name is Dorothy I  havent written anything for awhile we
                          have been busy with our son Nicholas he is almost 3 yrs old in
                          January. He has mtm, but doing very well right now these boys are
                          amazing arent they. I don't always get a chance to be on the computor
                          with working and caring for Nicholas some days are very hectic. I try
                          to get on aleast once a week to check e-mail than I get read
                          everyone's postings. This is a very good group hopefully I will be
                          able to write more and get a chance to talk with you all again. Well
                          everyone take care.God Bless Dorothy J.




                        • Amanda
                          Dorothy, Hi!! It is good to hear from you. I do think of you and Nicholas often. I am glad he is doing well. I didn t realize he and Jacob are so close in
                          Message 12 of 12 , Dec 10, 2004
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                            Dorothy, Hi!! It is good to hear from you. I do think of you and
                            Nicholas often. I am glad he is doing well. I didn't realize he
                            and Jacob are so close in age - Jacob will be three on Feb. 3. It
                            just seems unreal.

                            Again, good to hear from you and I hope you can post more often. It
                            is always good to hear from other parents.

                            Love, Amanda


                            --- In Myotubular_Myopathy@yahoogroups.com, "dotj67" <kd1025@p...>
                            wrote:
                            >
                            > Hi Everyone ,
                            >
                            > My name is Dorothy I havent written anything for awhile we
                            > have been busy with our son Nicholas he is almost 3 yrs old in
                            > January. He has mtm, but doing very well right now these boys are
                            > amazing arent they. I don't always get a chance to be on the
                            computor
                            > with working and caring for Nicholas some days are very hectic. I
                            try
                            > to get on aleast once a week to check e-mail than I get read
                            > everyone's postings. This is a very good group hopefully I will be
                            > able to write more and get a chance to talk with you all again.
                            Well
                            > everyone take care.God Bless Dorothy J.
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