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Thread: Craniosynostosis Myspace is up and running

  1. #1
    zacharys_mommy0820 zacharys_mommy0820's Avatar
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    Default Craniosynostosis Myspace is up and running

    I posted an original post in Getting Started about a myspace page I was making. I just wanted to let everyone know that it is almost done. If you have a chance to look at it I would appreciate it. I am trying to put all the info for all types of metopic, even including cranio linked syndromes on the one page so that people can go there and find everything they need. I still need pre-op, post-op instructions but I can not find the original page and I am looking for something uploadable on the syndromes. It should be completely done by the end of the week.
    Also I am uploading surgical pics, and before and afters, of craniokids...so far 3 moms have offered to let me use theirs. If you are interested just private message me. Also you can send a request to coronal_craniosynostosis@yahoo.com if you have a myspace. If not the myspace is open for public viewing and you can go to http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=448609109

    if you get a chance to look at it give me some feedback : )

    You will find alot of good info on this site and if you have anything you think I should add please let me know.

    Zachary Steven 8/20/08 - 18 months old (left coronal craniosynostosis)
    Surgery: CVR - 2/25/2009
    Surgery: CVR - 4/09/2010
    Tyler 8/07/2005 - 4 years old
    Charlie 1/07/2000 - 10 years old

  2. #2
    three.little.boys has a spectacular aura about three.little.boys has a spectacular aura about three.little.boys's Avatar
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    it looks great! Well done!!! Bravo!! I would be honored for you to use any of Quintin's stuff if you want (his Onetruemedia.com video, for example) Just let me know if you want it!
    [FONT=Arial Black]Sadie [/FONT
    Ethan 8-11-02
    Gabe 4-13-04
    Quintin 4-17-07 (metopic CVR/FOA 2/19/08)

    http://www.craniokids.org/support/showthread.php?t=2498


  3. #3
    zacharys_mommy0820 zacharys_mommy0820's Avatar
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    Yes I would love to use that if you would send me the link. Also, I was looking up some studies online and I could of sworn that Quintin was used for a before and after on one of them...or it was a baby that looked just like him...infact there were like 3 kids on here that were on that site...I think it might of been the doctor you used. I will have to get a link and post it if you dont know what I am talking about just so you can see. But ywa send me the link when you get a chance.

    Zachary Steven 8/20/08 - 18 months old (left coronal craniosynostosis)
    Surgery: CVR - 2/25/2009
    Surgery: CVR - 4/09/2010
    Tyler 8/07/2005 - 4 years old
    Charlie 1/07/2000 - 10 years old

  4. #4
    greenprincess is just starting out greenprincess's Avatar
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    It looks great and you can use any of My pic that you like I have a lot on my myspace page. You did a great job. :)
    Amy

    Taliyah 10
    Ka'von 5 microcephaly/ bicoronal/ saggittal cranio
    Kevin 3
    Kavin 20months saggittal cranio


  5. #5
    is happy happy happy! Wyatt's Mom has a spectacular aura about Wyatt's Mom has a spectacular aura about Wyatt's Mom's Avatar
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    It looks great!! Awesome job!
    Sarah
    Proud mommy of:
    Logan - Jan '06 No Cranio
    Wyatt - April '07 Metopic & Sagittal - Surgery at BC Children's Hospital Feb 27th, 2008
    Cooper - Sept '09 currently have some concerns with his metopic suture, we've seen a neurosurgeon but are waiting and watching



    View Wyatt's Story: http://www.craniokids.org/support/showthread.php?t=2607

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