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Thread: Lets get CDH on the Oprah Show.

  1. #151
    Erika Welcome.
    Yes we are trying to get CDH awareness out there.
    I believe that on page 4 or 5-Kristin put together a list of all the people who we are writting to get CDH awarenedd out there in the public.
    We would love it if you wrote letters. The more letters we send out-the better.
    Thanks for helping us to get CDH awareness out there.
    We are happy you are here. If you have any questions-please don't hesitate to ask.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  2. #152
    Well, 20 minutes later I see that the thread we are on is the oprah show one....duh~goin' to take a nap

  3. #153
    Got this email from AJ (ATV Magazine). I am TOTALLY EXCITED!!!!!

    Hi Stephanie-
    I talked with the Editor this afternoon and he was very happy to help out.(I was able to talk before we both left the country).
    I will get the information posted foy you @www.ATVMAG.com. We have one of the largest ATV wedsites in the world so you should see a good response from that. I will need a little time to set that up as I'm going away but I will get it done as soon as possible.
    As for the magazine coverage I am going to check our production schudule and see when our next issue gets printed and mailed, the editor seems to think it may be very close to your event date so I will have to do some research and ask the production department is we would be in time for that issue. I have approval to get you into that magazine though as long as the magazine isn't mailed after the event. I will look into this and get you a firm answer as soon as I can.
    If I am lazy with a response over the next couple weeks please forgive me as I will have limited access to e-mail.
    Thanks, AJ

    My response to him:
    AJ-
    I cannot express to you how Thankful I am to you for helping us out with this ATV ride for CHERUBS. It is wonderful that you are doing all of this extra work. It touches my heart and I appreciate it so.
    I look forward to hearing from you when you have the chance.
    Again, please have a safe and fun trip.
    Stephanie

    So I hope the magazine doesn't come out before the ride. I am thinking that if it does-he will put an article in after the event. He seems like a very considerate man.

    I am very pleased.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  4. #154
    Thanks for the welcome - it makes such a difference to know I am not in this alone - I just deal with all of this a little differently than my darling husband!

    I did write to the Oprah show awhile back when someone on the listserve posted that they were going to do a show about losing a child. I never heard back but I will write again!

    And yes, it is beautiful here - just can get rock fever sometimes - small island. Just the other day I overheard my husband's aunt being asked if Ella was our only child and she said yes. I have been kicking myself ever since that I didn't speak up - but my Mother pointed out (when I moaned to her about it!) that sometimes you just can't change ignorant people!

    And I am way overdue a trip to Target!!

    Hey how do you put a picture in your profile, so that I'm "no avatar"!
    Erika- mother to Bennett (22Dec05-22Dec05) and Ella- who will be 1 in April(!) and step-mother to Drew- 10 www.bennett-russell.memory-of.com

  5. #155
    Hi Erika, so great to have you here!!!

    Avatar - click on Profile on the yellow line under the photos of the kids up top. All your Profile info is there, and that's where you add a photo as your avatar.

    Stephanie, that is so great, YEAHHHH!!!!!

    Ok, everyone, since this thread is now 11 pages and talking about all sorts of media stuff, I'm going to start a new thread...

    http://cdhsupport.org/members/viewtopic.php?p=5697#5697
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  6. #156

    Oprah show

    Sounds like a good idea trying to see if Oprah would do a show on CH.
    my son is in chicago childrens memorial. we live a hour from there.


    I own a website competition called the Fantasy Fights. http://www.webcompetition.net/
    I have info posted on the Index page, The FF get's a lot of hits =)
    I sent a email to everyone in my address boook also asking them to spread the word.
    Hugs
    Dakota's Mom Beverly
    http://dakota-cody.com/

  7. #157
    Thank you, Beverly!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  8. #158
    Your welcome =) i wont be back on till later this evening, we are going to go see Dakota, I am getting so sick of this hour drive everyday!!
    and the gas we go though!!! But, once we are there by him. Its all worth it. Hugs
    http://photos-h.ak.fbcdn.net/hphotos..._2290456_n.jpg Left side CDH- ECMO 9 days- Had his surgery Thursday 01-03-08!! trach w/ Vent.. Weaning off of vent 4 hours a day... @ 21 months started potty traing... mikcey button since 9-2209 As of 2-2009 Dakota's Tracheomalacia and Bronchomalacia ( floppy airs ways) Is now gone. his airways are a normal size!! He's my heart and my soul!!!! I am very blessed.... Dakota's Mom.. ( Beverly) www.dakota-cody.com Movie's about Dakota's fight to live: http://www.dakota-cody.com/videos_of_cody.htm http://dakota-cody.com/cody/CodysFoundationbutton.gif www.codysfoundation.com[img

  9. #159
    WOW this topic really took off. You ladies rock. I'm still sending Bryston's story in where ever I can.

    Anyone got the Grey's anatomy link handy? I'll keep looking for it too.

  10. #160
    Wow, im suprised no one's heard back. I figured that this would be somehting the Oprah show would jump on. I'll join you and write something up. Maybe if enough of us bombard them we'll get some attention
    Ohio Co-Rep/Indiana Rep Mother to Jeremiah Isaac Deskins 9/21/2007-1/12/2008 Left Sided Agenesis Type CDH. NICU 3 months- Home 22 days. 1 repair- nissen- gtube- wound vac & graft- enlarged liver- kidney reflux due to malformation of kidney valves-narrowed aorta- malformation of right pulmonary vessels and of course- the ever present hypoplastic left lung. http://www.jeremiah-deskins.virtual-memorials.com http://heavenly-angels.org/graphics/...ingmyangel.gif http://lilypie.com/pic/2009/10/29/V8wd.jpghttp://lagf.lilypie.com/tQNem4.png http://lbdm.lilypie.com/ucO7m4.png

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