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  • #1

    Introduction & Thank you

    Hi--I've been reading posts here for about a month and have been so encouraged by the information and the sharing and caring atmosphere. My 15 year old son Mason will be having surgery 2 weeks from today. He's got Asperger Syndrome (high functioning autism) too, so we've been dealing with some heavy duty anxiety attacks. I am forced to stay really calm during these times, and I'm surprising myself with how well I'm dealing with the stress of impending surgery. This whole experience certainly does stretch us and ultimately make us stronger I think....I hope.

    Also, I want to say I'm so happy to read about Lura's son Alex. I have an 8 year old son with Down Syndrome, and when Mason was told about surgery I kept thinking "what if this happens to Daron? we couldn't handle it". Now I know we can.
    Tamara
    Tamara, tired mom of:
    Mason, 15, has Asperger Syndrome, Posterior Spinal Fusion 6-16-05. 55 degree upper curve corrected to 16 degrees.
    Daron, 8, has Down Syndrome, but thankfully no major medical problems
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  • #2
    Hi Tamara,

    Welcome. I wish you the very best with Mason's surgery in two weeks. The anticipation and anxiety before the surgery is sometimes harder than the actual surgery itself (and pending recovery). Braydon has had numerous surgeries, but each one is still stressful. Sometimes I think I worry too much because we KNOW too much - we know more of the things to worry about. The other problem, sometimes, is that Braydon has never been critically or chronically ill. Handing over your seemingly healthy child for major surgery is not an easy thing to do. If it were easy, we wouldn't be caring parents.

    Good luck - it sounds like you have a good start to this emotional rollercoaster. I hope everyone continues to do well. I have an 11 yr old nephew with Down Syndrome. I worry about his orthopedic issues, because his mother does not. UGH. Any suggestions?

    Take care and we'll be thinking of you in two weeks.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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    • #3
      Hi Tamara,

      Sounds like you are Supermom! Just wanted you to know I am sending good thoughts your way, and praying for a smooth procedure and an excellent outcome for you and both of your little guys.
      Susanna
      ~~~~~~
      Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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      • #4
        Thanks for your replies and encouragement Susanna and Carmell.
        Wow, Carmell, you really have been through the challenges. Good point that you probably know Too much. We've had no major medical issues so I'm kind of naive & inexperienced with hospitals.
        About Down Syndrome issues: We haven't done much therapy with Daron since he started school. He wears ankle foot orthotics (since age 3) and that helped him start walking and are really essential for stability...although he's got such low tone and loose joints that he's just always pretty unstable and falls easily. The best therapy we ever did was PT in the swimming pool. Made a lot of progress quickly in strength and balance. Regular PT never impressed me that much, but it might have been the impatient therapist we had.
        Tamara, tired mom of:
        Mason, 15, has Asperger Syndrome, Posterior Spinal Fusion 6-16-05. 55 degree upper curve corrected to 16 degrees.
        Daron, 8, has Down Syndrome, but thankfully no major medical problems

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        • #5
          Tamara,

          Hello new friend! Aren't you blessed?! I will be praying for Mason, he will do super great! I would love to begin a correspondence (sp) with you when you catch your breathe. I've made some great aquaintances through Alex!

          My prayers and thoughts are with you and your family as you embark on your latest journey.

          Lura

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