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Thread: Appointment tomorrow

  1. #1

    Default Appointment tomorrow

    Hi Ladies,

    I'm so happy it is finally here. We have our first appointment with the Craniofacial department at the Childrens Hospital tomorrow. Hopefully we will get some answers & this worry that has taken over my life atm with subside. Not knowing is so hard. We are taking the kids to Disneyland next week (all the way from Australia) and I am so unorganized because this is ALL I can focus on . I feel like I am obsessed.

    My previous post is here . http://www.craniokids.org/support/sh...ad.php?t=10134

    Anyway the strange thing is that the side of her face that was pushed in seems to be popping out. I thought I was going crazy cause my DH said she looks the same to him but then my sister walked in the other day, looked at her at said "OMG her face isn't as pushed in today" I hadn't mentioned anything to her. AND she has been SOOOO much happier the last week. So that's good news. Hopefully it means no cranio.

    BUT I am still concerned with how skinny her head is at the front compared to the back. The best way to describe it is like a pear shape. The width of her forhead is smaller than my 4 month old neices & Evie is 22 months. Her face bends around the side too quickly I think or is this just a normal variation of faces?? It's hard to see it in 2d photos but you can kind of see it in this one.



    She also had huge bumps at the sides above her ears, which kind of show up in this one.



    Oh and I found some pics of when she was born on my old computor. I knew her shape was bad but side on she looks like an alien!!





    Anyway I will let you know how I go, I am excited and I feel really silly saying that but I am. I am also worried that they will also dismiss my concerns & not do a 3d CTscan. I will think of all of you wonderful mothers who have fought for your babies & I will do what I can to get one. I don't think I can let it go without knowing for sure that everything is ok.
    Thanks so much for your support ladies.
    Melissa

  2. #2
    Sophia's_mom is on a distinguished road Sophia's_mom's Avatar
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    Good luck tomorrow, Melissa. I'll say a prayer for you, hopefully no Cranio. But it'll be nice just to have answers. And a vacation afterwards sounds wonderful!! Keep us posted.
    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!

  3. #3
    We're on the other side!! dannlark is just starting out dannlark's Avatar
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    Good luck tomorrow!!!! I'm praying that you FINALLY get some solid answers. Don't take no for an answer and really push for the 3-D CT. Especially if they are pushing off your concerns. You need to know, one way or the other. 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


  4. #4
    lovin' my lambdoid cutie boy! evergreenmom will become famous soon enough evergreenmom's Avatar
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    Best of luck and definately insist on a CT scan!! Way to go momma for finding CK and looking for answers!!

  5. #5
    Alex's mama *jules* is on a distinguished road *jules*'s Avatar
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    good luck at the appt tomorrow :)
    Julie
    mom of two boys
    Zachary Joseph Marquez 9/4/02 - no cranio
    Alexander Michael Marquez 9/2/08 - metopic cranio
    surgery 5/15/09 with Dr. Fearon & Dr. Sacco

    http://www.caringbridge.org/visit/alexmarquez

  6. #6
    book @ www.kaciking.com kking is just starting out kking's Avatar
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    Good luck! Let us know what you find out...

    And have a GREAT time at Disney, no matter how tomorrow turns out.
    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
    www.caringbridge.org/visit/austinking
    email: kaci@kaciking.com

  7. #7
    charliesmummy will become famous soon enough charliesmummy's Avatar
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    Good luck Melissa ill be thinking of you. I love the piccy's you posted by the way, you can really see her head shape & pinched temples in the baby piccy's. Anyway, please let us know how you get on xx
    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

  8. #8
    mckennasmum is just starting out mckennasmum's Avatar
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    best of luck, let us know how it goes!
    Susan

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

  9. #9
    Moderator Zara's mum will become famous soon enough Zara's mum's Avatar
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    Hi, just wondering how you got on yesterday ? xx
    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

  10. #10
    Alex's mama *jules* is on a distinguished road *jules*'s Avatar
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    how was your appt? hoping everything went well :)
    Julie
    mom of two boys
    Zachary Joseph Marquez 9/4/02 - no cranio
    Alexander Michael Marquez 9/2/08 - metopic cranio
    surgery 5/15/09 with Dr. Fearon & Dr. Sacco

    http://www.caringbridge.org/visit/alexmarquez

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