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RE: [avenues2] Re: tethered chord - Reaching out!!!

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  • Darrin and Jaime Brown
    It was great to finally meet you also!!! I can t wait to see you again!! Jaime To: avenues2@yahoogroups.com From: TERRY2745@AOL.COM Date: Thu, 27 Aug 2009
    Message 1 of 5 , Sep 1, 2009
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      It was great to finally meet you also!!! I can't wait to see you again!!



      Jaime





      To: avenues2@yahoogroups.com
      From: TERRY2745@...
      Date: Thu, 27 Aug 2009 09:33:07 -0400
      Subject: Re: [avenues2] Re: tethered chord - Reaching out!!!






      Hey Jamie,

      it was so nice to FINALLY meet you in Philly!!

      Wish I had more time to talk! :)

      Hope to see you on the boards!

      ~Theresa Lucas
      http://www.theresalucas.com
      Arthrogryposis Multiplex Congenita Support, Inc. ~ President
      http://www.amcsupport.org
      Art Association of Madison County, Inc. ~ Student Exhibition Coordinator

      -----Original Message-----
      From: lalabonita <lalabonita@...>
      To: avenues2@yahoogroups.com
      Sent: Thu, Aug 27, 2009 9:26 am
      Subject: [avenues2] Re: tethered chord - Reaching out!!!

      Jamie

      There is an active discussion on tethered cords at amcsupport. I encourage you to log in and post your question there.

      http://www.amcsupport.org/forum

      Link to current discussion on topic
      http://www.amcsupport.org/forum/viewtopic.php?f=4&t=6933&p=66194#p66194

      Hope someone will be able to help you!!

      --- In avenues2@yahoogroups.com, "Jaime" <jddncb@...> wrote:
      >
      > Hi everyone,
      >
      > I haven't asked a question in a long time...a very long time, but I watch and answer from time to time. My son Dylan is 10-years-old...He has Neurogenic Arthrogryposis, a mutated form of SMA. He doesn't have the SMN deletion, but fits the "clinical and EMG/Nerve Conduction study" portion of SMA. He doesn't fit the typical profile of AMC, but he is contracted and therefore diagnosed with AMC.
      >
      > Dylan is contracted in his arms (shoulders, elbows, wrists, fingers), legs (hips, knees, ankles, toes), neck (torticollis), back (scoliosis, lordosis)...everywhere really!!! Dylan is a smart kid (like the rest), but is definitely not your typical Amyoplasia. Dylan has almost no voluntary movement, other than his head movement (which is awesome). He drives his powerchair with his chin, completely accesses the Internet on his own (head and toe), plays PS2 by himself (when he wants to with various switches), and does pretty much whatever he wants to with adaptive equipment (just ask and I will share pictures or ideas).
      >
      > No matter what it is, we have tried it, adapted it, failed it, succeeded it...been there, done that, and have a whole bunch of t-shirts (AMC and MDA)!!!!! If there is a piece of equipment for it, we have tried it, bought it, owned it, loaned it, and might even have it in our garage if Dylan can't use it!!!
      >
      > Dylan has gone to A.I. DuPont Hospital for Children since he was 18-months-old. We drove 21 hours (more than once) to see Dr. Jay, Reenee, and Marnie when we lived in Illinois (now live in NJ), and truly believe it saved Dylan's life!!!
      >
      > Here we are today, almost a decade later. Dylan is doing awesome!! Living, thriving, doing!!........At this point, you (I, ME) wonder (as a parent), what more is there??? My child is completely incapable, but doing so much more than any doctor said he would...For so many years, I have just been so completelt happy Dylan is alive and doing as much as he is!!!
      >
      > SO... the reason for my email...Of course, I have a problem...And I come to you for advise....
      >
      > I found out by chance (from Dylan Urologist), that Dylan has a Tethered Spinal Cord and I have no idea what to do. He said we need to see a Neurosurgeon ASAP. (I have yet to hear from Dr. Jay). I am desperately asking anyone who can help to tell me what this means, what I have to do, what the recovery is like, what surgeon to use (keep in mind I live in NJ), and anything else that might be helpful in this situation.
      >
      > I suddenly went from a mom who has "been there, done that" to one who has no idea, no direction, and no help. I am completely lost in this situation and hope there is someone out there who can help!!
      >
      >
      > That being said...Even if there is no one out there to assist us...if we could be of any assistance to anyone who has a VERY special needs child, please feel free to contact me.....Thank you for your assistance.
      >
      > PS. This is a picture of Dylan with a very good friend! (love ya Scarman!)
      >
      > Jaime Brown
      > (mom to Dylan - 10 - years - old)
      >
      > [Non-text portions of this message have been removed]
      >

      [Non-text portions of this message have been removed]









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