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Thread: Introducing myself and Ray

  1. 06-06-2006 09:42 PM #1
    Ray's Mom
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    Default Introducing myself and Ray

    Hi, My name is Anne and my son Ray was diagnosised with sattigal crainosynostosis - the NP noticed a ridge and enlongated head shape while he was still at the hospital following his birth. He had the strip endosc. surgery at 2 months and is now 4 months old. Our NS (Dr. Kerry Crohn at Cincinnati CH) did not recommend helmet therapy, but rather just "blocking" his head in place at night. So far his head has rounded out nicely. Our next appt. is in Aug. and Ray will be 6 months old.

    I am very thankful to all the wonderful people who have helped us along the way. I look forward to getting to know you all better though I don't get a chance to log in very often.

    Anne
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  2. 06-06-2006 11:14 PM #2
    Katie
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    Hi Anne, welcome ot Cranio Kids! I'm glad you found us, and we look forward to getting to know oyu more


    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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  3. 06-07-2006 08:24 AM #3
    verdon2
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    :icon_mrgr Hello!!! Looking forward to getting to know you both!!!!
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  4. 06-07-2006 09:37 AM #4
    Jennifer
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    Welcome! I'm glad you've found us....I look forward to getting to know you more.....
    Out of curiosity- how do you 'block his head' at night? How much longer does the dr reccommend you do that.....

    Again- Welcome!
    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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  5. 06-07-2006 10:36 AM #5
    KALEMSMOM
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    Welcome to craniokids!!! I am happy you found us and I looks forward to getting to know you as well.

    Sylvie (mom to Loic and Kalem(Metopic) surgery was Dec 19, 2005 at Sick Kids, Toronto, ON

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  6. 06-07-2006 11:50 AM #6
    Matthews Mommy
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    looking forward to getting to know you.
    Josette:icon_mrgr
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  7. 06-08-2006 12:00 AM #7
    plukids
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    Hi Anne!! Welcome to the site!!
    Lisa - Mother to 3 men and a little lady
    Anthony 10-08-1997, Frank 06-29-2000, Casimir 1-31-2003, & Sylvia 09-14-2004 (Left coronal & metopic craniosynostosis CVR/FOA 09-07-2005)
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  8. 06-09-2006 10:07 PM #8
    craniomommynbaby
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    Welcome! I am glad that everything is going smoothly in Ray's recovery. We all look forward to getting to know you better.
    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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  9. 06-09-2006 10:32 PM #9
    Ray's Mom
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    Regarding how we "blocked" Ray's head. The NS wanted us to keep him laying on the back of his head so that the weight of it (his head) would naturally round itself out - as his head was enlongated due to the sattigal cranio. We only had to do it at night. His suggestion was to use to bags of sugar on either side of his head to keep him from turning it to the side. We ended up using two bags of IV fluid covered in socks. Worked really well but then he started to get stronger so I blocked those with one of those baby positioner things (two foam blocks with velcro that you put on either side of a baby to keep them from rolling over). That helped for a while but now he's strong enough to still turn his head or he wiggles down below. The NS wants us to keep it up as long as possible but he recognized that it would only work until Ray started to roll on his side etc. I am happy to say that his head is now much rounder and the NS is quite happy with the shape it's become.
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  10. 06-10-2006 10:53 PM #10
    Rhonda O
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    Welcome, Anne! I am so glad that everything is going well with Ray!


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