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RE: [Mito] Setting my mind at ease....

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  • Jennifer Frost
    Can I relate to you. I can t tell you how many times we would go out or to church andeveryone would hear how bad Caeden is and then they would say oh he looks
    Message 1 of 20 , Feb 1, 2006
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      Can I relate to you. I can't tell you how many times we would go out or to church andeveryone would hear how bad Caeden is and then they would say oh he looks great and it makes you fel really small. I learned quickly to take what everyone had to say with a grain of salt. You are his mom we know our kids best. Keep your head up.

       

      Jennfer mom to Caeden 4 now on hospice


      From: "ffwife73" <ffwife73@...>
      Reply-To: Mito@yahoogroups.com
      To: Mito@yahoogroups.com
      Subject: [Mito] Setting my mind at ease....
      Date: Tue, 31 Jan 2006 12:01:43 -0000

      Is it crazy to think, not the worst, but to be realistic with my
      son's symptoms, prior to being diagnosed.  My family keeps
      saying, "oh, it will be all right, you just wait and see."  or "He's
      not gonna have it, we just know."  HOW DO THEY KNOW....I mean I know
      they are trying to be positive, but you can't possibly understand
      what we are going thru unless they've been in my shoes, and they
      haven't.  We go for our first initial consultation on the 14th and
      biopsy on the 15th with Shoffner. 

      I've read somewhere that most children with Mito don't live past the
      age of 13...now, I know I've seen a few people who are older than
      thirteen, in my less than a week research I've been doing on the
      internet, but is this true by an average...or has anyone heard this?

      I'm scared.  Since we live in rural south Georgia, of course, no one
      has ever heard of this diagnosis before and no one understands what
      we're going thru.  I have such a happy "normal appearing" 4 1/2 y.o.
      beautiful boy, and I want to keep it that way......is that so wrong
      of me?

      TIA,
      Erin,
      Mother of Ian - 4.5 y.o. with complicated migraines and unconfirmed
      MIto diagnosis





      Please contact mito-owner@yahoogroups.com with any problems or questions.



      YAHOO! GROUPS LINKS





    • John and Christina Hall
      I can relate too with Kendall at times we can take her out and everyone looks at us like we are crazy. Saying it doesn t look like she is that bad... but they
      Message 2 of 20 , Feb 1, 2006
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        I can relate too with Kendall at times we can take her out and everyone looks at us like we are crazy. Saying it doesn't look like she is that bad... but they do not see the day to day life that we as parents have to see.
         
        Christina

        Jennifer Frost <jjfrost4@...> wrote:
        Can I relate to you. I can't tell you how many times we would go out or to church andeveryone would hear how bad Caeden is and then they would say oh he looks great and it makes you fel really small. I learned quickly to take what everyone had to say with a grain of salt. You are his mom we know our kids best. Keep your head up.
         
        Jennfer mom to Caeden 4 now on hospice


        From: "ffwife73" <ffwife73@...>
        Reply-To: Mito@yahoogroups.com
        To: Mito@yahoogroups.com
        Subject: [Mito] Setting my mind at ease....
        Date: Tue, 31 Jan 2006 12:01:43 -0000

        Is it crazy to think, not the worst, but to be realistic with my
        son's symptoms, prior to being diagnosed.  My family keeps
        saying, "oh, it will be all right, you just wait and see."  or "He's
        not gonna have it, we just know."  HOW DO THEY KNOW....I mean I know
        they are trying to be positive, but you can't possibly understand
        what we are going thru unless they've been in my shoes, and they
        haven't.  We go for our first initial consultation on the 14th and
        biopsy on the 15th with Shoffner. 

        I've read somewhere that most children with Mito don't live past the
        age of 13...now, I know I've seen a few people who are older than
        thirteen, in my less than a week research I've been doing on the
        internet, but is this true by an average...or has anyone heard this?

        I'm scared.  Since we live in rural south Georgia, of course, no one
        has ever heard of this diagnosis before and no one understands what
        we're going thru.  I have such a happy "normal appearing" 4 1/2 y.o.
        beautiful boy, and I want to keep it that way......is that so wrong
        of me?

        TIA,
        Erin,
        Mother of Ian - 4.5 y.o. with complicated migraines and unconfirmed
        MIto diagnosis





        Please contact mito-owner@yahoogroups.com with any problems or questions.



        YAHOO! GROUPS LINKS








        Christina mother to two beautiful, special litte girls Kendall(8 with mito complex 1), and Lindsey (not affected)www.caringbridge.org/visit/kendallhall
      • karen brubaker
        Melissa, It sounds like she could be constipated. Is she eating okay? Justin will only go about once a week too if I don;t give him the Miralax on a regular
        Message 3 of 20 , Feb 1, 2006
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          Melissa,
          It sounds like she could be constipated. Is she eating okay? Justin will only go about once a week too if I don;t give him the Miralax on a regular basis. You might go have her checked out, being constipated eventually causes Justin to not eat well and the GI thinks it could be causing some of his vomiting episodes.
          How are her seizures? I've been thinking of you two.
           
          Karen

          melissa Ryan <angels4hailee@...> wrote:
          Ok, hailee is constapated, or not, shes not complaining but when she does go its very hard to do.. She is only going once a week, should I be concerned or no big deal??

          Melissa





          Karen, Ryan 16 asthma non-mito, Justin 7 mito cytopathy

          www.caringbridge.org/wa/love4justin

           


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        • Janet Sample
          There is a yahoo list called mitooldies and one called adultmito. members range from early 20 s to in their 60 s. My mother died in 1988 at age 49, my sister
          Message 4 of 20 , Feb 2, 2006
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            There is a yahoo list called mitooldies and one called adultmito.  members range from early 20's to in their 60's. 
             
            My mother died in 1988 at age 49, my sister was only 33 in 1996.  But my grandmother was 95, I am 43.  My son just turned 13.
             
            There is no such thing as an average age.  Also there are many adults with mito.
             
            Each person is affected differently.  Since you know the disease now you can benefit from some of the knowledge that is out there.  Also, more is being learned everyday.  That is how I look at it. 
             
            Janet Sample
            ----- Original Message -----
            From: ffwife73
            Sent: Tuesday, January 31, 2006 6:01 AM
            Subject: [Mito] Setting my mind at ease....

            Is it crazy to think, not the worst, but to be realistic with my
            son's symptoms, prior to being diagnosed.  My family keeps
            saying, "oh, it will be all right, you just wait and see."  or "He's
            not gonna have it, we just know."  HOW DO THEY KNOW....I mean I know
            they are trying to be positive, but you can't possibly understand
            what we are going thru unless they've been in my shoes, and they
            haven't.  We go for our first initial consultation on the 14th and
            biopsy on the 15th with Shoffner. 

            I've read somewhere that most children with Mito don't live past the
            age of 13...now, I know I've seen a few people who are older than
            thirteen, in my less than a week research I've been doing on the
            internet, but is this true by an average...or has anyone heard this?

            I'm scared.  Since we live in rural south Georgia, of course, no one
            has ever heard of this diagnosis before and no one understands what
            we're going thru.  I have such a happy "normal appearing" 4 1/2 y.o.
            beautiful boy, and I want to keep it that way......is that so wrong
            of me?

            TIA,
            Erin,
            Mother of Ian - 4.5 y.o. with complicated migraines and unconfirmed
            MIto diagnosis



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