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Thread: Who Has Written? Share your letters and responses! :)

  1. #1

    Who Has Written? Share your letters and responses! :)

    Please feel free to share the letters that wrote to your representatives and share responses!

    Make sure to e-mail me any official responses. We've gotten 3 co-sponsors so far!!!! WTG everyone!!!!!!!!
    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.

  2. #2
    I wrote but did not hear anything.
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  3. #3
    Senator John Cornyn of Texas is on board to support the bill when it comes through Congress. I put his letter somewhere and have to find it but when I do I will scan and send to you Dawn.

  4. #4
    I have just written letters to my 2 senators and 1 representative for South Dakota. I'll put them in the mail tomorrow. Since I'm new to the board, I didn't know about the bill until recently. Thanks for the important information. Kathy

  5. #5
    Thank you Kathy!!! You are not late on the letters at all, for it was just introduced to the committee just recently. Hopefully by election time we will know if it has passed the committee.

    That is great Karen!! Hopefully you hear back Karla!!
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  6. #6
    I remember seeing somewhere a posting about what should be included in the letters. Was that here or Facebook? I want to write mine within the next couple of days.
    Mommy to a Miracle: Ericka Elizabeth (3.18.2009)-LCDH diagnosed in utero at 29 weeks- Venitlator- Nitric Oxide- Repair surgery at 13 days- Venous Venous ECMO at 16 days- Venous Arterial ECMO at 21 days- came off ECMO at 36 days- off oxygen support at 84 days- G-tube surgery at 78 days- home at 100 days..FINALLY! I'm so proud of her and all the progress we have made! All meds and g-tube DC'd on May 5th- 2010. She's still a skinny minny but she's healthy and happy! She's amazing!
    ERICKA'S JOURNEY: http://www.onetruemedia.com/shared?p...39&skin_id=801 www.myspace.com/tracy_leigh

  7. #7
    http://www.cherubs-cdh.org/bills/ is the link to bill site. There you can find two different letter templates with instructions. You can personalize these letters. You will find the bill copy there and a page of info. to include with the letters.
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  8. #8
    Thank you! I'm going to start mine tonight. =)
    Mommy to a Miracle: Ericka Elizabeth (3.18.2009)-LCDH diagnosed in utero at 29 weeks- Venitlator- Nitric Oxide- Repair surgery at 13 days- Venous Venous ECMO at 16 days- Venous Arterial ECMO at 21 days- came off ECMO at 36 days- off oxygen support at 84 days- G-tube surgery at 78 days- home at 100 days..FINALLY! I'm so proud of her and all the progress we have made! All meds and g-tube DC'd on May 5th- 2010. She's still a skinny minny but she's healthy and happy! She's amazing!
    ERICKA'S JOURNEY: http://www.onetruemedia.com/shared?p...39&skin_id=801 www.myspace.com/tracy_leigh

  9. #9
    Melanie and I have sent letters to all 22 committee members and two state Senators, one of our Senators is on the committee. That's a total of 46 pink, yellow, and blue envelopes headed to D.C.! Now if I can just manage to get that meeting with Senator Hatch's office!
    Father to Evie Nanette and Allyson Belle. Evie diagnosed with LCDH and passed away 14 hours after birth. Allyson diagnosed with LCDH- spent 4 months in NICU- 3 hernia repairs- on feeding tube and oxygen until she passed away at 15 months. CHERUBS Parent Advisory Board Member, Co-Volunteer Coordinator, and Utah State Representative.

  10. #10
    Are we sending the letters to our state offices or the DC location?

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