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Thread: Cranio made front cover of our local paper

  1. 05-17-2009 01:32 AM #1
    mckennasmum
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    Default Cranio made front cover of our local paper

    http://www.examiner.com.au/news/loca...n/1514862.aspx

    I got 2 phone calls and a text message this morning asking if I'd read the paper today. I hadn't but anyway an article on cranio. Hopefully the link works. I'm going to contact the 3 mums just to let them know what we have been through as they will be dealing with the children's hospital in Melbourne. Although these 3 kids have saggital, my friends were all offended that these women thought they were the only ones going through this from Tasmania, kind of funny really! Makes me realise how much I've already spread the word of cranio. Interesting though as 3 kids in a year diagnosed in a population area of about 150,000!
    Susan

    Married to Colin
    Kara 23/02/05
    McKenna 19/09/07 Mild Metopic Fusion, Under care of Craniofacial team
    Sierra 11/01/10
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  2. 05-17-2009 01:58 AM #2
    Melbourne Mummy
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    Wow! Just reading it now, if any of them want to talk to a saggi mum who's been through it in Melb, feel free to give them my details.
    Bree

    Proud mummy to:

    *Kade Ty 22 Feb 06 (no cranio)
    *Hudson Drew 16 April 08 (sagittal synostosis - CVR 23rd March 2009) - doing fab! Check out our montage http://www.onetruemedia.com/my_share...edium=text_url
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  3. 05-17-2009 02:49 AM #3
    mckennasmum
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    thx, was thinking of you after reading it. I just sent an email to the paper so will be interesting to hear back from them!
    Susan

    Married to Colin
    Kara 23/02/05
    McKenna 19/09/07 Mild Metopic Fusion, Under care of Craniofacial team
    Sierra 11/01/10
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  4. 05-17-2009 03:00 AM #4
    dannlark
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    Oh, WOW!!! I hope you can get them the info about CK! It's such a relief to contact others that have been there, done that... Keep us posted!!
    Larkin
    Mom to 3 boys: Aidan 9/8/2000 Camden 7/29/2003 Ian 7/29/2007 - Upper end "Mild" metopic. Surgery 8/27/08, Dr. Fearon, Medical City Dallas. We're on the other side!!!
    http://www.caringbridge.org/visit/ianrodriguez

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  5. 05-17-2009 09:15 AM #5
    charliesmummy
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    Wow that's amazing. Send them to CK x
    Jacqui - mummy to Charlie, Metopic cranio & Harry (no cranio)

    Surgery carried out on 6th Sep 2007
    CVR/FOA at John Radcliffe Hospital Oxford
    Surgeon - David Johnson

    Charlie's Metopic Journey - www.craniokids.org/support/showthread.php?t=16222
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  6. 05-17-2009 11:50 AM #6
    kking
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    YAY for more awareness!
    Kaci
    mom to Madi (age 11, CVR/FOA at age 5) and to Austin (age 9, CVR/FOA at 22 mos and age 3). Both also have a condition called chiari malformation type I which is a secondary diagnosis caused by their cranio.
    www.kaciking.com
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    email: kaci@kaciking.com
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  7. 05-19-2009 06:49 PM #7
    Josephsmommy
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    Joseph a.k.a. Baby Joe (born 11/6/07)

    Spring Mediated Surgery: 2/21/08 for sagittal
    Spring Removal: 8/26/08

    We made it to "The Other Side" on May 21, 2009

    Mommy's Super Hero!!!!!

    Mommy to beautiful Mia (no cranio)!

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  8. 05-20-2009 10:15 AM #8
    Christina's_Mommy
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    It wouldn't let me read it. :( Yea on the awareness!!!
    Carol

    Mom to Christina - 4 yrs
    http://www.caringbridge.org/visit/little_christina Our Story

    Bifrontal/Biparietal CVR/FOA Feb 27th 08 for Bicoronal. (Fearon,Swift), Developmental Delays, Hearing Loss, Narrowed Brain Ventricles, Moderate Asthma, Acid Reflux & Migraines. ICP monitor April 27th with Dr. Swift - Has borderline ICP. Follow up with Swift 9-12-11, Again 3-7-12. surgery #2 in about a year... EEG done 1-17-12 for headaches.

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  9. 05-20-2009 10:31 AM #9
    Zara's mum
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    I can't read it either :(
    Chloe,



    Mum to 3 beautiful children-

    Aaron 12/2/02
    Joey 5/3/06
    Zara 16/12/07 our little princess-right unicoronal. Surgery 29th April 2009. Great Ormond Street Hospital

    Zara's craniofacial journey http://www.youtube.com/watch?v=DtNbSmC8LNU
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  10. 05-20-2009 06:27 PM #10
    mckennasmum
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    probably because its old news now! Anyway 3 kids in our area all between 8 and 12 months have sagittal cranio, they have all found each other and were getting the word out there and looking for other kids that may have cranio as well! I still haven't heard back from the paper so that reminds me, I better put in another call to get in touch with these mums!
    Susan

    Married to Colin
    Kara 23/02/05
    McKenna 19/09/07 Mild Metopic Fusion, Under care of Craniofacial team
    Sierra 11/01/10
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