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Thread: We Have Craniosynostosis Awareness Ribbons!

  1. #11
    Love being a mommy! SummerEhmann is on a distinguished road SummerEhmann's Avatar
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    Just ordered 2 of the oval ones. =) Love the color!
    Mommy of
    Daughter: Braylee - 1/7/09 - No Cranio
    Son: Brentley - 6/28/10 - Originally misdiagnosed as Left Coronal Cranio and then diagnosed with Frontosphenoidal Synostosis (one of 6 in the entire world!!) - CVR surgery on 12/21/10 at Children's Hospital in Denver, Co with Dr. Winston & Dr. Ketch

    Read more about our story here
    http://craniokids.wordpress.com/

    WE'RE ON THE OTHER SIDE!!!!! Now mentor and send loving care packages to families going through it!
    www.CranioCareBears.org


  2. #12
    JWx4 JWx4's Avatar
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    I really like them! We are still awaiting answers about my son's head so we are not for sure if he has it. But no matter what, this experience has opened my eyes to something I never knew about before. No matter the outcome with my son I will continue to support and tell others about Cranio.

  3. #13
    beccad will become famous soon enough beccad's Avatar
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    I got my ribbons over the weekend and I LOVE them. I put one on my car, my husband's truck and my parents car. Thanks so much for spreading the awareness.
    Becca:
    Mom to three wonderful kiddos:
    Noah is 8
    Elijah is 6
    Julianna is 3(Left Coronal Cranio)
    Vanderbilt Children's Hospital Nashville, TN
    Surgery April 15, 2008 (canceled because of a cold and fever)
    Surgery rescheduled June 26, 2008
    2nd surgery April 14, 2011
    WE ARE ON THE OTHER SIDE

    www.caringbridge.org/visit/juliannaharber
    www.harberclan.blogspot.com


  4. #14
    audra15 is on a distinguished road audra15's Avatar
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    Finally ordered mine. Thanks, Jenny!
    Beth
    Kyra Rose - born 5/25/09
    sagittal surgery -10/14/09 at CHOP

  5. #15
    Kimberly Kymburli Kymburli's Avatar
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    Got my ribbon today! LOVE it! Placed it on the back of my vehicle!
    Thank you!
    Kimberly
    mommy to

    Jaxon Matthew 09/08/05 no cranio
    Brooklyn Nicole 02/06/08 no cranio
    Jayden Michael 03/03/11 sagittal
    diagnosed 05/10/11 sagittal craniosynostosis
    surgery 07/06/11 @ PCH with Dr Singh/Dr Bristol
    started helmet therapy 07/14/11

    WE ARE ON THE OTHER SIDE

  6. #16
    mattbeck mattbeck's Avatar
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    I would love to order a magnet and sticker but i can't as there is no option for Australia NSW????
    Proud Mum to;
    Jacob 4.5yrs No Cranio
    Caitlin 3yrs Right Unicoronal Synostosis
    We are on the other side!

  7. #17

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    I was wondering what they look like in person? Like is the butterfly have the white around it like on the pic?
    Thanks in advance

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