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Thread: Trey has no cranio!

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    ahope4us is just starting out ahope4us's Avatar
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    Default Trey has no cranio!

    We had our appt with the NS yesterday and he said that he doesn't think Trey has cranio. He said that it's just the way his head is growing. We asked why there was a ridge and why it kept getting bigger and why does one eye look more squinted than the other and he said it just happens that way sometimes, that we all have some of this, it's just not always as noticeable. He plotted Trey's head circum on a chart (60th percentile), and did some measurements and ratios and said it all looks fine. So, for now I guess I have to believe him and hope for the best. I will be watching though and if it gets more noticeable will definately get another opinion. Thanks for all your support! I will still be around to read all your stories and see how everyone is doing.
    Danielle
    Danielle-Mom to Alyssa 11/02/02 and Trey 05/08/06

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    Administrator Katie is a splendid one to behold Katie is a splendid one to behold Katie is a splendid one to behold Katie is a splendid one to behold Katie is a splendid one to behold Katie is a splendid one to behold
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    Danielle that is great news!!! He's lucky to have such a proactive momma and daddy looking after him I'm glad your going to stick around here regardless of Trey's cranio status
    Momma to Dillon 6/25/04 (metopic and bicoronal) and Aaron 2/24/08, and wife to Doug.
    CVR/FOA 11.16.04 @ 4.5 months old
    Second surgery 1.5.10 @ 5.5 years old (all went excellent!)
    Dr. Ian Jackson and Dr. Karol Zakalik Providence Hospitals, MI

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    Moderator craniomommynbaby is on a distinguished road craniomommynbaby's Avatar
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    I am glad to hear the good news! My hubby has a ridge on his head, and he did not have cranio. A few months after Simon's surgery, Simon developed a ridge along the old metopic suture line. I asked the surgeons about it, and they did not think it was something to be too concerned over. A few weeks later, I was rubbing Chris's head and discovered that he has the same ridge! I guess genetics from Daddy took over after the corrective surgery for the defect from Mommy. Sometimes Simon's eyes look a little like Trey's, but it is usually from Simon raising one eyebrow and giving us the "I cannot believe you just told me 'No!' look" like his daddy has.
    Now I am trying to remember...did Trey have a CT scan? I am just wondering if the diagnosis had the CT scan involved. I know those sorts of tests help me to have peace of mind either way.
    Cindy
    *Skull bone removal surgery in summer of '77 for right unicoronal*
    Mommy to Simon
    *CVR w/ FOA surgery on June 29, 2005 for bicoronal*
    *CVR with bone graft and bone paste surgery on July 15, 2009 for bicoronal and defects*
    *Bone grafts and titanium plates on June 27, 2012 for defects*
    Soul Mate to Chris
    See our cranio journey at
    www.thescofieldfamily.com/craniosynostosis.html AND http://craniomommynbaby.blogspot.com

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    Administrator Jennifer has a spectacular aura about Jennifer has a spectacular aura about Jennifer has a spectacular aura about Jennifer's Avatar
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    That's great news! :icon_mrgr Please do stick around and let us know how everyone is doing!
    Jennifer
    Mom to- Sarah(13), Reese(10), Emily (8.5) & Cody (3)
    Emily diagnosed w/ Rt. Coronal Cranio corrected in '04 w/ Dr. Wehby in Portland, OR

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    Zachary & Justin's Mommy Rhonda O is just starting out Rhonda O's Avatar
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    What wonderful news!! I am so happy for you!


    Mommy to Zachary 6 yrs old (sagittal, surgery Aug. 24, 2004)
    Justin 3 years old (no Cranio)

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    eden'smom is just starting out eden'smom's Avatar
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    Congrats on your good news!
    Jen, mom to Eden, CVR/FOA 3/3/04, strabismus repair 2/22/06 and Kayla (12/8/05)

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    ahope4us is just starting out ahope4us's Avatar
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    Thanks so much! No...he did not have a CT. He had x rays done and the radiologist said the Coronal sutures were "not well defined" and that he thought there was "probable closure". The NS said he thought the sutures looked clearly open. Not really sure why the discrepancy but the NS deals with this a lot more than the radiologist so... A CT would have made me feel better, but we don't want to subject him to the radiation if it's truly nothing. If it turns out to actually be cranio it'll eventually be obvious I would think. So for now we celebrate and wish all those who do have it the best!!!
    Danielle
    Danielle-Mom to Alyssa 11/02/02 and Trey 05/08/06

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    Administrator Lauren has a spectacular aura about Lauren has a spectacular aura about Lauren has a spectacular aura about Lauren's Avatar
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    Congrats!!! That is great news!
    Lauren
    Mom to Matthew (sagittal, surgery 11/9/01 at NEMC in Boston) and Danny

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    mom2mykidos3 is just starting out mom2mykidos3's Avatar
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    That is great news. We are so happy for you. Good luck with everything.

    Heather mommy to Miriam (03.24.2006) FOA and CVR on October 6, 2006 Left Eye strabismus surgery, Dec. 20, 2006. Right eye strabismus surgery, July 27, 2007. Both eye strabismus surgery March 29, 2008. Touch Up sugery done at Primary Children's in SLC, Utah 01/04/2011.

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