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Re: [Mito] Got approved for a Wish!!!

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  • Dirk and Colleen
    Congrats, we did our trip to disney world at the end of January, a trip that we will never forget. Where are you going? If its to Florida and are staying at
    Message 1 of 12 , Jun 1, 2006
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      Congrats, we did our trip to disney world at the end of January, a trip that we will never forget.  Where are you going?  If its to Florida and are staying at give kids the world let me know I have some really good pictures if you want me to send them to you.
       
      Colleen
      ----- Original Message -----
      Sent: Wednesday, May 31, 2006 1:04 PM
      Subject: [Mito] Got approved for a Wish!!!

      Im so thrilled for Brandon!!! 
      We referred him on Friday, and they told us to expect it to take
      quite a while, as most peds take a few months to get the forms in...
      well ours got it in today!! (Have i mentioned how much i like our
      ped???). 

      So they called today and said hes been approved for a wish, and
      their sending out our info package today!!  I was kind of
      surprised... I guess a little part of me was 'hoping' he would be
      rejected, as it would mean hes not really that sick... but im
      thrilled that hes getting this opportunity. 

      This is his compensation for all the needles, and pills, and
      surgeries, and therapies, and scans, and IVs, and appointments, and
      hospital stays, and ER trips, and x rays, and every other
      uncomfortable crummy procedure kids shouldnt have to even think
      about never mind endure.

      We meet up with the coordinator in a few weeks when were in Calgary
      for therapy, and start working out a timeline from there!!  Were
      thinking probably not for a year or two, but we need to discuss it a
      bit more... 

      So excited for him!! :)




    • Your Name
      Congrats!!! I m so happy for you and your family. I look at these wishes for the whole family. I was just talking to my husband about maw and what ideas for
      Message 2 of 12 , Jun 1, 2006
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        Congrats!!! I'm so happy for you and your family. I look at these wishes for the whole family. I was just talking to my husband about maw and what ideas for Leah. We haven't gone that step yet. I liked reading the line about liking your ped. We love our ped. He listens to us and is always there for us. Of course, it might be because we were his first family as he calls us. Parker was his first baby when he moved in to town. Parker is now almost 14 years old. So you know how long we have been with our ped. But it sounds like you have a wonderful relationship with your doctor and your doctor knew how important this was to you and Brandon. Congrats again and we look forward to hearing about your info you received in the mail and all that you plan to do.

        Lisa Nerenhausen
        mom to Leah

        Im so thrilled for Brandon!!!
        > We referred him on Friday, and they told us to expect it to take
        > quite a while, as most peds take a few months to get the forms in...
        > well ours got it in today!! (Have i mentioned how much i like our
        > ped???).
        >
        > So they called today and said hes been approved for a wish, and
        > their sending out our info package today!! I was kind of
        > surprised... I guess a little part of me was 'hoping' he would be
        > rejected, as it would mean hes not really that sick... but im
        > thrilled that hes getting this opportunity.
        >
        > This is his compensation for all the needles, and pills, and
        > surgeries, and therapies, and scans, and IVs, and appointments, and
        > hospital stays, and ER trips, and x rays, and every other
        > uncomfortable crummy procedure kids shouldnt have to even think
        > about never mind endure.
        >
        > We meet up with the coordinator in a few weeks when were in Calgary
        > for therapy, and start working out a timeline from there!! Were
        > thinking probably not for a year or two, but we need to discuss it a
        > bit more...
        >
        > So excited for him!! :)
        >
        >
        >
        >
        >
        >
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      • ilikemonstertrucks
        I would LOVE photos of GKTW! I suspect that will be what we end up doing... the website doesnt give much info but ive seen a few photos here to know its
        Message 3 of 12 , Jun 1, 2006
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          I would LOVE photos of GKTW! I suspect that will be what we end up
          doing... the website doesnt give much info but ive seen a few
          photos here to know its gotta be very cool!! :)

          I can never view the pics here so if you could email them to
          kschellenberg@... that would be great!

          Thanks so much!

          Keely


          --- In Mito@yahoogroups.com, Dirk and Colleen <dcrwbc@...> wrote:
          >
          > Congrats, we did our trip to disney world at the end of January, a
          trip that we will never forget. Where are you going? If its to
          Florida and are staying at give kids the world let me know I have
          some really good pictures if you want me to send them to you.
          >
          > Colleen
          > ----- Original Message -----
          > From: ilikemonstertrucks
          > To: Mito@yahoogroups.com
          > Sent: Wednesday, May 31, 2006 1:04 PM
          > Subject: [Mito] Got approved for a Wish!!!
          >
          >
          > Im so thrilled for Brandon!!!
          > We referred him on Friday, and they told us to expect it to take
          > quite a while, as most peds take a few months to get the forms
          in...
          > well ours got it in today!! (Have i mentioned how much i like
          our
          > ped???).
          >
          > So they called today and said hes been approved for a wish, and
          > their sending out our info package today!! I was kind of
          > surprised... I guess a little part of me was 'hoping' he would
          be
          > rejected, as it would mean hes not really that sick... but im
          > thrilled that hes getting this opportunity.
          >
          > This is his compensation for all the needles, and pills, and
          > surgeries, and therapies, and scans, and IVs, and appointments,
          and
          > hospital stays, and ER trips, and x rays, and every other
          > uncomfortable crummy procedure kids shouldnt have to even think
          > about never mind endure.
          >
          > We meet up with the coordinator in a few weeks when were in
          Calgary
          > for therapy, and start working out a timeline from there!! Were
          > thinking probably not for a year or two, but we need to discuss
          it a
          > bit more...
          >
          > So excited for him!! :)
          >
          >
          >
          >
          >
          >
          > Please contact mito-owner@yahoogroups.com with any problems or
          questions.
          >
          >
          >
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        • Janet Sample
          Congratulation! Janet Sample ... From: ilikemonstertrucks To: Mito@yahoogroups.com Sent: Wednesday, May 31, 2006 2:04 PM Subject: [Mito] Got approved for a
          Message 4 of 12 , Jun 1, 2006
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            Congratulation!
             
            Janet Sample
            ----- Original Message -----
            Sent: Wednesday, May 31, 2006 2:04 PM
            Subject: [Mito] Got approved for a Wish!!!

            Im so thrilled for Brandon!!! 
            We referred him on Friday, and they told us to expect it to take
            quite a while, as most peds take a few months to get the forms in...
            well ours got it in today!! (Have i mentioned how much i like our
            ped???). 

            So they called today and said hes been approved for a wish, and
            their sending out our info package today!!  I was kind of
            surprised... I guess a little part of me was 'hoping' he would be
            rejected, as it would mean hes not really that sick... but im
            thrilled that hes getting this opportunity. 

            This is his compensation for all the needles, and pills, and
            surgeries, and therapies, and scans, and IVs, and appointments, and
            hospital stays, and ER trips, and x rays, and every other
            uncomfortable crummy procedure kids shouldnt have to even think
            about never mind endure.

            We meet up with the coordinator in a few weeks when were in Calgary
            for therapy, and start working out a timeline from there!!  Were
            thinking probably not for a year or two, but we need to discuss it a
            bit more... 

            So excited for him!! :)




          • lisa wilson
            That is so wonderful!!!!!!!! If you don t mind me asking 1. how do you get the info for make a wish 2. I m not sure if I remember the specifics on Brandon, we
            Message 5 of 12 , Jun 2, 2006
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              That is so wonderful!!!!!!!! If you don't mind me asking
              1.  how do you get the info for make a wish
              2. I'm not sure if I remember the specifics on Brandon, we have so many terriffic kids in this group.  i.e. age, diagnosis, develoment, disabilities.
               
              I can't wait to hear on the specifics you all decide for him!!!'
              Congrats! :)
              ilikemonstertrucks <tig_ger51@...> wrote:
              Im so thrilled for Brandon!!! 
              We referred him on Friday, and they told us to expect it to take
              quite a while, as most peds take a few months to get the forms in...
              well ours got it in today!! (Have i mentioned how much i like our
              ped???). 

              So they called today and said hes been approved for a wish, and
              their sending out our info package today!!  I was kind of
              surprised... I guess a little part of me was 'hoping' he would be
              rejected, as it would mean hes not really that sick... but im
              thrilled that hes getting this opportunity. 

              This is his compensation for all the needles, and pills, and
              surgeries, and therapies, and scans, and IVs, and appointments, and
              hospital stays, and ER trips, and x rays, and every other
              uncomfortable crummy procedure kids shouldnt have to even think
              about never mind endure.

              We meet up with the coordinator in a few weeks when were in Calgary
              for therapy, and start working out a timeline from there!!  Were
              thinking probably not for a year or two, but we need to discuss it a
              bit more... 

              So excited for him!! :)






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            • ilikemonstertrucks
              I dont mind at all! 1. http://www.wish.org/ This site has all the info you need to refer a child for a wish... :) 2. Brandon is 3.5 years old, and has
              Message 6 of 12 , Jun 2, 2006
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                I dont mind at all!

                1. http://www.wish.org/ This site has all the info you need to
                refer a child for a wish... :)

                2. Brandon is 3.5 years old, and has Complex 1 Deficiency. He is
                pretty mild compared to alot of our kiddos, he struggles with severe
                Apraxia (he cannot talk, though he signs and understands everything
                perfectly). He also has varying degrees of ataxia (has trouble
                walking, falls alot, uses a walker and medical stroller for longer
                trips. the severity varies with his condition, if he is sick or
                tired or run down its much worse than when hes in good shape).
                He has had one seizure, but has not had another since he was started
                on Clobozam.
                He was thought to have motility issues (diarrhea all the time) but
                it has just been discovered that he has a bacterial infection in his
                stomach/intestine, so they are now wondering if it is being caused
                by that...
                Hes had 2 surgeries, and countless scans, tests, pricks, IV's,
                etc... but only been admitted to hospital once before diagnosis.
                He is developmentally delayed in gross motor (walking) and
                expressive speech, but everything else (cognitive, receptive speech,
                fine motor etc) is actually between 3 and 12 months AHEAD of his
                age... We count ourselves very lucky, so far all the things that
                are affected (speech, walking) are things we can live without.
                There are signs on his MRI of widespread brain involvment (basal
                ganglia, grey and white matter are all abnormal in appearance)
                however clinically he just isnt showing signs of it (much to our
                neuro's intreague).

                His condition is very stable at the moment (thank goodness!) and the
                doctors are hopeful he will remain stable through
                childhood/adolecence (though its too early to guess that.).

                I believe Mito is an automatically approved condition for a wish in
                the USA, but im not certain on that... We had no trouble at all, it
                was approved within a few days. But were in Canada and the process
                is alot quicker here I believe.

                My understanding is ultimately we will have to wait until he is a
                little older and able to express his wish (which he can't right
                now). But we will see what the process is when we meet the wish
                granter in Calgary this month! :) Im so excited for him!!

                Keely



                --- In Mito@yahoogroups.com, lisa wilson <redheadsemty@...> wrote:
                >
                > That is so wonderful!!!!!!!! If you don't mind me asking
                > 1. how do you get the info for make a wish
                > 2. I'm not sure if I remember the specifics on Brandon, we have so
                many terriffic kids in this group. i.e. age, diagnosis, develoment,
                disabilities.
                >
                > I can't wait to hear on the specifics you all decide for him!!!'
                > Congrats! :)
                > ilikemonstertrucks <tig_ger51@...> wrote:
                > Im so thrilled for Brandon!!!
                > We referred him on Friday, and they told us to expect it to take
                > quite a while, as most peds take a few months to get the forms
                in...
                > well ours got it in today!! (Have i mentioned how much i like our
                > ped???).
                >
                > So they called today and said hes been approved for a wish, and
                > their sending out our info package today!! I was kind of
                > surprised... I guess a little part of me was 'hoping' he would be
                > rejected, as it would mean hes not really that sick... but im
                > thrilled that hes getting this opportunity.
                >
                > This is his compensation for all the needles, and pills, and
                > surgeries, and therapies, and scans, and IVs, and appointments,
                and
                > hospital stays, and ER trips, and x rays, and every other
                > uncomfortable crummy procedure kids shouldnt have to even think
                > about never mind endure.
                >
                > We meet up with the coordinator in a few weeks when were in
                Calgary
                > for therapy, and start working out a timeline from there!! Were
                > thinking probably not for a year or two, but we need to discuss it
                a
                > bit more...
                >
                > So excited for him!! :)
                >
                >
                >
                >
                >
                >
                > Please contact mito-owner@yahoogroups.com with any problems or
                questions.
                >
                >
                >
                > SPONSORED LINKS
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                wellness program Diet fitness health nutrition wellness Health
                promotion and wellness Business health wellness
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                >
                > Visit your group "Mito" on the web.
                >
                > To unsubscribe from this group, send an email to:
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                >
                > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
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              • melissa Ryan
                The process for us in the us, wasn¹t quite as fast, but was still fast, they came to the house and interviewed the whole family, brought us dinner, we talked
                Message 7 of 12 , Jun 2, 2006
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                  Re: [Mito] Re: Got approved for a Wish!!!


                  The process for us in the us, wasn’t quite as fast, but was still fast, they came to the house and interviewed the whole family, brought us dinner, we talked about what we would like to do, I expressed that hailee mentally couldn’t express what she wanted for a wish, but I knew what her favorite things where, so they let me make the wish for her.  From that time it was about a month for the ok, and than by 6 months we were at disneyland.

                  Im glad that we didn’t wait, she had been so sick and in the hospital so much that it was a needed break for her.

                  Melissa
                • Mom24wildboys
                  For Sean s wish, we were contacted by one of my husband s co-workers as he was a volunteer with MAW. He wanted to grant Sean a wish, but at first we were not
                  Message 8 of 12 , Jun 2, 2006
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                    For Sean's wish, we were contacted by one of my husband's co-workers as he was a volunteer with MAW.  He wanted to grant Sean a wish, but at first we were not sure if we wanted to do it then or later.  With Sean we did know if he would make to 5, an age they give VACTERL children to make before they will say they live to adulthood.  We decided to do it then. Sean's Pediatrician would not let us travel outside of CA, so we did a long weekend of Disneyland, Knott's Berry Farm and California Adventure-which we turned the tickets back into Disneyland tickets since we did not get to meet Buzz Lightyear...Sean's fave at the time.  So glad we did.  We spent one day meeting all the characters.   Ours was a two month waiting time. We are glad we went when we did. Sean has not been medically stable since then.   In fact, two weeks after we were back at home, the downward spiral began.

                    Shelly


                    On Jun 2, 2006, at 10:36 AM, melissa Ryan wrote:




                    The process for us in the us, wasn’t quite as fast, but was still fast, they came to the house and interviewed the whole family, brought us dinner, we talked about what we would like to do, I expressed that hailee mentally couldn’t express what she wanted for a wish, but I knew what her favorite things where, so they let me make the wish for her.  From that time it was about a month for the ok, and than by 6 months we were at disneyland.

                    Im glad that we didn’t wait, she had been so sick and in the hospital so much that it was a needed break for her.

                    Melissa


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



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