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  • Good News!

    We went for our 3 month evaluation and Emily's curve is the same as it was in July. We were really happy to hear that. Dr. Betz did say he wouldn't do anything to her until she's 8-10 degrees beyond her 73 degree curve. So if she stays the same we may hold off any surgery for awhile! Both he and Janet were very impressed with how well she's walking also.

    Bad news is because of her heart issue, she may not have the surgery at Shriners. She may end up at CHOP, since we deal with Children's in DC for her heart.

    However, depending on when she needs the surgery may change the circumstances as well. But I had to share the good news!
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  • #2
    Great news. Thanks for sharing, Erin. I'm very happy to hear Emily's curve is stable. I'm sure Dr. Betz was happy to hear that too. Whenever she does need surgery, Dr. Betz will make sure she gets the best care possible. I don't worry about that at all. Way to go walking! Lots of good things. Good luck with the heart stuff. I know that's an ongoing worry. Take care and thanks for keeping us posted.
    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
      Kerina,

      Glad to hear the news. We saw Dr. Betz last week (also got good news - now change in curve) and you can tell that he is genuinely happy when he is able to give a family encouraging news.

      Best of luck to you!

      Maria
      mariaf305@yahoo.com
      Mom to David, age 17, braced June 2000 to March 2004
      Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

      https://www.facebook.com/groups/ScoliosisTethering/

      http://pediatricspinefoundation.org/

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