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Thread: Finally A START!!!

  1. 03-04-2010 01:09 PM #1
    Leighasmom
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    Default Finally A START!!!

    check out this link cranio was on the news!

    http://abclocal.go.com/wabc/video?id=7309047
    Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001
    Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon
    Colton 3/24/09 normocephaly
    OUR Story
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  2. 03-04-2010 01:13 PM #2
    Sophia's_mom
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    That's great!! I wonder where that aired, was it local for you Mel?
    Tessa - mom to Sophie and Ben
    Little Miss Sophie - 12/22/08 - Sagittal - Endo surgery 4/16/09 @ St. Louis Childrens
    Baby Boy Ben - 12/14/11 - No Cranio!
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  3. 03-04-2010 01:15 PM #3
    Gretchen
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    Wow!
    Gretchen mommy to Andrew Charles 4/25/07, Brandon Danger (bicoronal synostosis) 7/12/09
    CVR/FOA done 2/5/10 - Dr. Scott Elton and Dr. Rodney Schmelzer of Banner Pediatric Spec.
    Cardons Childrens Center- Mesa, AZ
    www.crazylongtins.blogspot.com
    Hunter 9/9/99
    Brooke 11 6/6/98
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  4. 03-04-2010 01:20 PM #4
    Leighasmom
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    Aired in New York last night. NEW YORK!!! What a huge city to promote awareness. Not local for little Nebraskan me but I'm inspired to write my hometown news people now...lol ;-) doubt podunk Nebraska will be too fast to react but this was awesome to see.
    Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001
    Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon
    Colton 3/24/09 normocephaly
    OUR Story
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  5. 03-04-2010 01:32 PM #5
    Sophia's_mom
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    Quote Originally Posted by Leighasmom View Post
    Aired in New York last night. NEW YORK!!! What a huge city to promote awareness. Not local for little Nebraskan me but I'm inspired to write my hometown news people now...lol ;-) doubt podunk Nebraska will be too fast to react but this was awesome to see.
    I just emailed the link to my local ABC station saying I would love to see that or something similar air in our community. Maybe Sophie will be on TV?
    Tessa - mom to Sophie and Ben
    Little Miss Sophie - 12/22/08 - Sagittal - Endo surgery 4/16/09 @ St. Louis Childrens
    Baby Boy Ben - 12/14/11 - No Cranio!
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  6. 03-04-2010 01:54 PM #6
    Leighasmom
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    sent an email with the link to my ABC station too. I think I should send one to each station see if they feel competive against ABC...lol
    Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001
    Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon
    Colton 3/24/09 normocephaly
    OUR Story
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  7. 03-04-2010 01:59 PM #7
    Leighasmom
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    Lol NBC and CBS now emailed....hmmm Oprah next? Inside Edition done to lol...I'm back on my podium girls lmao
    Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001
    Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon
    Colton 3/24/09 normocephaly
    OUR Story
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  8. 03-04-2010 03:01 PM #8
    fitmomof2ae
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    Did you notice the Father had sagittal cranio too??? He looked great! He didn't appear to have any syndromes either. What are the chances are of having a single suture cranio child when you have cranio without a syndrome? I'm just wondering this for our children's sake? I don't know that Dr's know, but I thought I'd put it out there...


    Sagittal surgery - 02/26/2009

    Second surgery suggested to correct a bump on the head and fill in soft spots.
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  9. 03-04-2010 03:31 PM #9
    Leighasmom
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    Quote Originally Posted by fitmomof2ae View Post
    Did you notice the Father had sagittal cranio too??? He looked great! He didn't appear to have any syndromes either. What are the chances are of having a single suture cranio child when you have cranio without a syndrome? I'm just wondering this for our children's sake? I don't know that Dr's know, but I thought I'd put it out there...
    He looked really good I thought. It was my understanding even without a syndrome that once cranio appears in a child then they have a 50/50 chance of passing it on. I might be wrong but thats what I always thought.
    Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001
    Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon
    Colton 3/24/09 normocephaly
    OUR Story
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  10. 03-04-2010 03:50 PM #10
    angeleka
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    OK I have been inspired......
    I just sent an email to the Doctor that does medical segments on our local NBC station. I told him our story, about CK and CAPPS, and even added the link to Andrew's video. What the heck, it can't hurt to try to get the word out around here.
    He works out of the same hospital as our pedi and does news segments on the side. I am not holding my breath for a response, but it was worth a shot.

    Angi


    http://www.carepages.com/carepages/loveforandrew


    http://www.onetruemedia.com/shared?p...edium=text_url


    http://www.craniokids.org/support/showthread.php?t=4637

    Andrew - born 8/11/07 (Metopic, CVR surgery completed on 6/18/08 at U of M)

    Cheyenne Rose - born 4/18/10 with a patent urachus. Surgery at William Beaumont Hospital in Royal Oak, MI on 4/19/10.

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