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Thread: 2011 CDH Conference in June in Orlando!

  1. #11
    I've wanted to be on the committee since Texas! I offered after last year to work on babysitting. I will still do that. I'm not saying I want it in Philadelphia. I would like to be able to drive (within 8-10 hours) once every 4-5 years but I know that's asking a lot. Orlando is reasonable for us to fly but not every year. Disney attractions are very expensive!!! I'd go anywhere / do anything for CHERUBS and am always willing to help.

    My dad travels a lot and has been all over the country so I will ask if he knows of a gem of a city that maybe we haven't thought of....a girl can try, right? Obviously I've never planned a conference but I'm willing to make calls, etc. How do I get on the committee?
    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

  2. #12
    We totally understand where you are coming from Dawn, we truly do! I want to offer solutions, but places I am surrounded by that I can and want to help plan and organize and do the leg work, we are dealing with altitude. What do you consider high altitude? I live at about 6,300 which is way higher than some surrounding areas (Denver, Salt Lake). Then the altitude varies in the states out West where I could do a lot of the work and planning to help out. But, what would be your altitude cut-off and I will try to offer some ideas for future ideas. I don't want it anywhere in Wyoming, for we have no big hospital. I would love to see something in the Portland, OR or Seattle, WA area, if we could find the help. They are farther West from me and probably all I could do is make phone calls and emails, but I would be there for sure! Have you tossed around the idea of OH or MI? I too want to have the option to be able to drive. We drove about 18 hours to get to Texas and I think that is my cut-off range, for we all were ready to go goofy by then! LOL!

    Do you want me to add Karla and myself to the conference committee? I bet we could drive you crazy Dawn! LOL! You know I am going to be watching flights like crazy again in 2012! I was on the computer daily, up until the day of the conference this past May trying to find cheap flights, wanting a deal like what Barb had and it never happened. I can come without the family in the future, but we so loved Texas, that I hate to leave them home.

    We do love you Dawn and everything you do for CHERUBS! I too want to help with solutions/ideas for the future if you will let me.
    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

  3. #13
    Texas was awesome!!!
    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

  4. #14
    Senior Member karahess's Avatar
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    Ohio? LOL! That's funny! There isn't jack squat in Ohio to do.
    Kara- mom to Aaron (8-30-03) and Adam- LCDH (8-7-06). Gastric Volvulus at 7 months old; Borderline Chiari Malformation; reherniation- bowel blockage and intestional malrotation at 26 months old; Apraxia of Speech - neurological speech disorder; Auditory Processing Disorder; Asthma; and frequent headaches.

  5. #15
    What about Baltimore, MD? Pittsburgh?
    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

  6. #16
    Okay, I have recruited Dave to help. He WANTS to do this! He is a salesman and is very good and spends his days on the phone. He can work a deal with anyone!!!! Seriously, he would be a professional negotiator if he could!!!

    Send him any information and he will call around for donations. He's awesome at this stuff!!!
    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

  7. #17
    Not sure about a close hospital or anything...but Branson Mo...is family friendly...cheap and somewhat a central location. I'm also thinking Nashville as a possible city & they have a good Children's hospital I believe with Vanderbelt.


    Off topic but ...
    For help with flight cost does anyone know about swagbucks??? You can get gift cards from southwest and it's not doing anything different on your computer, and no they don't send you spam.

  8. #18
    Yeah, I had some ideas for next year or sometime in the future. Washington, DC is awesome and there are many suburbs around DC with affordable hotels.

    And I didn't know you were looking for help with the Boston area. That may have been when I didn't have the internet or something. Because I know of many towns nearby where hotels aren't too expensive and many tourist attractions. Maybe another year.

    Either way, I have to go! I missed it last year and this year. And I can't wait to meet everybody! I'll drive if I have to. HAHA.
    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. #19
    Branson is 4 hours from St. Louis, and St. Louis has a highly rated children's hospital...St. Louis may be a better thought in the future.

  10. #20
    Senior Member karahess's Avatar
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    Ohio has some great hospitals such as Cincinnati Children's, Nationwide Children's in Columbus and Cleveland Clinic or Rainbow Babies in Cleveland. I've thought about the conference being in Ohio before, but besides zoos and amusement parks (Kings Island and Cedar Point) there aren't a lot of touristy attractions. I often find myself trying to leave Ohio to go somewhere else. LOL!
    Kara- mom to Aaron (8-30-03) and Adam- LCDH (8-7-06). Gastric Volvulus at 7 months old; Borderline Chiari Malformation; reherniation- bowel blockage and intestional malrotation at 26 months old; Apraxia of Speech - neurological speech disorder; Auditory Processing Disorder; Asthma; and frequent headaches.

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