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Thread: Roman on cover of CAPPSKIDS brochure!

  1. #1
    Roman's Mom Roman's Mom's Avatar
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    Smile Roman on cover of CAPPSKIDS brochure!

    Hi there,

    Just thought I'd share the news that a photo of my son Roman was chosen to be on the cover of CAPPSKIDS new brochure about craniosynostosis!

    They will be distributed to neurosurgeon/crainiofacial centers, health fairs, and pediatricians offices around the country. Yeah for awareness!

    I wish your craniokids website could be on the brochure too, since the support here really helped me, but as far as non-profit organizations go, www.cappskids.org is great (they sent him a free blanket, etc.).

    See pics of the brochure in my photo album.

    Such a lovely surprise. It's nice to think that somewhere someday someone is going to pick up that brochure and see the photo of my son and the other babies and read about cranio, that could lead to an early diagnosis for their child and put them on the road to surgery and recovery and healing. Feels good to be able to "pay it forward" in some small way.

    Melanie

    Mommy to Evelyn, 5 yrs. (no cranio)
    and Roman, 2 years old (sagittal cranio)- open strip craniectomy with "barrel staves" on January 5th, 2011 with Dr.Mapstone at OU Medical.
    We are on the other side! : )

  2. #2
    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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    That's great! Any awareness is great! I agree, it would have been nice for Amy to include this site but really all that matters is that the info gets out there. Parents will find us quickly enough if they are researching cranio though.
    Lauren
    Mom to Matthew (sagittal, surgery 11/9/01 at NEMC in Boston) and Danny

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    Jenny has a spectacular aura about Jenny has a spectacular aura about Jenny's Avatar
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    Oh how fun! You must be one proud momma!

    CranioKids is also a nonprofit as well. It would have been nice to be included, but like Lauren said, we are easily searchable as well.
    Jenny
    Mikayla ~ February 18, 03 Bi-Coronal Craniosynostosis-read her story http://craniokids.org/support/showth...hlight=mikayla
    Anabelle ~ 10/05
    Jaden Michael ~ 9/08



  4. #4
    Love being a mommy! SummerEhmann is on a distinguished road SummerEhmann's Avatar
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    So cool!
    Mommy of
    Daughter: Braylee - 1/7/09 - No Cranio
    Son: Brentley - 6/28/10 - Originally misdiagnosed as Left Coronal Cranio and then diagnosed with Frontosphenoidal Synostosis (one of 6 in the entire world!!) - CVR surgery on 12/21/10 at Children's Hospital in Denver, Co with Dr. Winston & Dr. Ketch

    Read more about our story here
    http://craniokids.wordpress.com/

    WE'RE ON THE OTHER SIDE!!!!! Now mentor and send loving care packages to families going through it!
    www.CranioCareBears.org


  5. #5
    AJ's Mommy AJ's Mommy will become famous soon enough AJ's Mommy's Avatar
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    Love it!!!
    ~~Shelby~~

    AJ~Sagittal Craniosynostosis
    ~Surgery 10-6-2009 At Seattle Children's Hospital
    ~Dr. Ojemann and Dr. Gruss~

    Cranio Care Bears
    www.craniocarebears.org

  6. #6
    On the other side again! jjmc123 is just starting out jjmc123's Avatar
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    Yeah for Roman!

    Logan is on their flyer & postcard. I have them displayed at work and tell people about cranio when they come in my office.
    Cindy

    Mom to Logan (12/8/2006) - Left Coronal

    Hospital - Connecticut Children's Medical Center (CCMC)
    Surgeons - Dr. Kanev & Dr. Casteglione

    1st Surgery (7/21/2007) - CVR & ear tubes
    2nd Surgery (
    2/18/2011) - CVR #2

    Patch therapy for amblyopia (lazy eye)
    8/4/11 - 20/500 *** 10/14/11 - 20/250 *** 1/13/12 - 20/60 *** 4/13/12 - 20/60
    *** 8/6/12 - 20/50

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

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    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
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    Way to go Roman
    Cranio kids is more of a support board....hense the over 3000 members.
    Mom to Noah (no cranio)
    Fiona (Metopic):
    Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
    Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
    Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips


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    tracy_girl05 is just starting out tracy_girl05's Avatar
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    yay thats great!!!! I would love a copy- how can i get one?
    Crystal Proud momma to-

    Hailey Lynn- 12/29/07, Left Coronal Cranio baby-surgery with Dr. Fearon 10/27/08

    WE ARE ON THE OTHER SIDE!!!!!!!!!

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


  9. #9
    Roman's Mom Roman's Mom's Avatar
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    Thanks guys! Ya, I just had to boast for a minute. ; ) Tee hee. He is also featured on their website under the Blankets for Babies order page, etc. : )

    You can print them off yourself for free from their website: http://www.cappskids.org/Print-and-Share-Info.html and there is also an "Awareness Package" that you just pay shipping for-I think she's currently working on getting the brochures printed on nice glossy paper right now (the photo next to the awareness package is of an old flyer and doesn't show the new brochure yet, so I'm not totally sure if the new brochures are ready to be purchased yet? I asked, but she hasn't responded yet.)

    And yes, your craniokids website is fairly easily found by doing a "craniosynostosis message board" search, so hopefully parents can find it ok. I didn't realize this was also a non-profit organization, but I guess the focus is more on the message board support. ; )
    Melanie

    Mommy to Evelyn, 5 yrs. (no cranio)
    and Roman, 2 years old (sagittal cranio)- open strip craniectomy with "barrel staves" on January 5th, 2011 with Dr.Mapstone at OU Medical.
    We are on the other side! : )

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