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Re: [Myotubular_Myopathy] Great news!

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  • redscootee@webtv.net
    Carolyn, Awww what great news! What did they name her? Look forward to the pics. Thx for sharing. take care pat
    Message 1 of 9 , Apr 7 11:29 AM
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      Carolyn,
      Awww what great news! What did they name her? Look forward to the pics.
      Thx for sharing.
      take care pat
    • Carolyn Hammerberg
      I, too, am waiting for more news! They hadn t chosen a name yet when I spoke with Stephanie yesterday, and though I just checked my e-mail messages, I haven t
      Message 2 of 9 , Apr 7 8:44 PM
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        I, too, am waiting for more news!  They hadn't chosen a name yet when I spoke with Stephanie yesterday, and though I just checked my e-mail messages, I haven't heard anything else yet.  I'm sure she'll be beautiful, and I'll send the photos as soon as I receive them and get permission to do so.  I just love seeing good things happen to good, very deserving people!  Makes me feel good about the world!
         
        Carolyn

        redscootee@... wrote:
        Carolyn,
        Awww what great news! What did they name her? Look forward to the pics.
        Thx for sharing.
        take care pat

      • redscootee@webtv.net
        Anxiously awaiting the name and pics. I am sure you will share as soon as you can. Always nice to hear good news with all the things going on today. take care
        Message 3 of 9 , Apr 8 1:56 AM
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          Anxiously awaiting the name and pics.
          I am sure you will share as soon as you can. Always nice to hear good
          news with all the things going on today.
          take care pat
        • patsarah2006
          I wanted to share some great news I got yesterday - the department of Special Child Health came through with funding for our Cough Assist machine!!!! I had to
          Message 4 of 9 , Mar 3, 2007
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            I wanted to share some great news I got yesterday - the department of
            Special Child Health came through with funding for our Cough Assist
            machine!!!! I had to wait 5 months but it finally came through!!!
            I want to share this because firstly I am happy and excited and finally
            feel like something is coming together and secondly because it is a
            funding option available to US residents.
            Here's the scoop:
            Every US state has some department that provides services for people
            with disabilities. In NJ it's called the DDD or Department of
            Developmental Disabilities. In some states it's still called something
            like the Department for Mentally Retarded or something like that.
            Anyway, all of these departments allocate funds from the Department of
            Special Child Health.
            There are many benefits to registering your child such as:
            - stipends for respite care and funds to help pay for others services
            - an adaptive equipment fund - can help pay for things like the Cough
            Assist machine and/or hearing aids.
            - A case manager is assigned to you who can help with social services
            and do things like attend your school district IEP meetings.
            - They have a special person in their office that liasons with the
            Medicaid/Medicare office. If you want to apply for a Medicaid waiver
            for children, for example you child would have someone to help advocate
            for this to come through through your state DDD office. This gives
            your case a leg up and some advocacy that non-registered citizens do
            not have.
            The wait just to get your application approved is now 9 months in the
            state of NJ. I also had to wait 5 months to get the funding for the
            Cough Assist machine. The paperwork is also extensive.
            Anyway, if you can mire through the process it can be useful!
            If anyone has questions about how to get your child set up, please
            contact me. I am certainly no expert but I have a friend from the MDA
            talk me through it and I hope I can do the same for someone else.
            Sarah
          • patsarah2006
            I took Adam for scoliosis follow up today and we had great news. His curve is improved 5 degrees (which is the same as the allowance for measurement error,
            Message 5 of 9 , Jan 8, 2009
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              I took Adam for scoliosis follow up today and we had great news. His
              curve is improved 5 degrees (which is the same as the allowance for
              measurement error, meaning it's basically the same). Anyway, it's
              stable, which is great.

              He also had his blood drawn for DNM2 testing today. We'll hear back
              within the next 6 weeks.

              Adam gained 4 pounds and 2 inches in the last 6 months - which is
              fantastic!

              So far we have been very healthy during this cold/flu season and I hope
              this healthy streak continues!!

              Wishing all of you health and good news, too (especially those of you
              whose kids are in the hospital now.)

              Best,
              Sarah
            • Sheallyn
              This is great news for Adam, congrats to you all :))
              Message 6 of 9 , Jan 8, 2009
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                This is great news for Adam, congrats to you all :))
              • WANDA SANTORY
                I m so happy to hear the great news Sarah. Tell him to keep putting on the weight and he ll keep getting stronger. ________________________________ From:
                Message 7 of 9 , Jan 8, 2009
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                  I'm so happy to hear the great news Sarah. Tell him to keep putting on the weight and he'll keep getting stronger.


                  From: patsarah2006 <patsarah@...>
                  To: Myotubular_Myopathy@yahoogroups.com
                  Sent: Thursday, January 8, 2009 12:59:34 PM
                  Subject: [Myotubular_Myopathy] Great news!

                  I took Adam for scoliosis follow up today and we had great news. His
                  curve is improved 5 degrees (which is the same as the allowance for
                  measurement error, meaning it's basically the same). Anyway, it's
                  stable, which is great.

                  He also had his blood drawn for DNM2 testing today. We'll hear back
                  within the next 6 weeks.

                  Adam gained 4 pounds and 2 inches in the last 6 months - which is
                  fantastic!

                  So far we have been very healthy during this cold/flu season and I hope
                  this healthy streak continues!!

                  Wishing all of you health and good news, too (especially those of you
                  whose kids are in the hospital now.)

                  Best,
                  Sarah


                • Betsy Grant
                  That is such wonderful news, Sarah! Yeaaaa! Bets
                  Message 8 of 9 , Jan 9, 2009
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                    That is such wonderful news, Sarah! Yeaaaa!
                    Bets

                    On Thu, Jan 8, 2009 at 12:59 PM, patsarah2006 <patsarah@...> wrote:

                    I took Adam for scoliosis follow up today and we had great news. His
                    curve is improved 5 degrees (which is the same as the allowance for
                    measurement error, meaning it's basically the same). Anyway, it's
                    stable, which is great.

                    He also had his blood drawn for DNM2 testing today. We'll hear back
                    within the next 6 weeks.

                    Adam gained 4 pounds and 2 inches in the last 6 months - which is
                    fantastic!

                    So far we have been very healthy during this cold/flu season and I hope
                    this healthy streak continues!!

                    Wishing all of you health and good news, too (especially those of you
                    whose kids are in the hospital now.)

                    Best,
                    Sarah


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