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Thread: 2011 CDH Conference in June in Orlando!

  1. #41
    Since it is far enough in advance, Mel and I are planning to attend. We have never met any other CDH families, so this is huge for us! I am very excited! I do understand both sides of the dilemma. Those of us who live out West, which unfortunately isn't many, can't always afford to travel to the East coast. I'm open to some middle ground, like St. Louis, Chicago, somewhere in the middle. I don't know who we have in these areas, but I am willing to do what I can from Utah. I would be willing to set something up in Salt Lake City, if there is interest. The elevation is 4300 feet, don't know is that too high? There aren't a ton of attractions here, but we do have the zoo, Temple Square, a Children's Learning Museum, the Olympic attractions, and more outdoor activities than you can shake a stick at. There is also a small amusement park nearby and some water parks not too far. I am sure that with enough time and some help I could arrange all kinds of deals here. Utah is an extremely charitable state. Anyway, I would be willing to help on the Conference Committee as well, if you think it would be helpful! Again I am looking very forward to June!
    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.

  2. #42
    So can we all agree the 2011 Conference is in Orlando? That just seems like the easiest for this year. I know the dates are set, but things ($) in my life require me to be able to book flights etc. as far in advance as possible!
    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.

  3. #43
    I think we can definitely agree that the 2011 conference is in Orlando, June 23rd - June 26th.

    I don't think any of us wanted you to change the 2011 conference, we were looking ahead into the future, for we do understand the time and planning that takes place.
    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

  4. #44
    Senior Member karahess's Avatar
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    The 2011 conference is in Orlando! We are looking at other possibilities for future conferences after 2012.
    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. #45
    Dawn Keep in mind if you ever want to have it in Houston, TX my mother in law works for Hoilday Inn and can get us a cheap rate on rooms and conference room. I am going to check with her I don't know if her dicounts only apply in state or will work for out of state but I think she can get the rooms for $69 at a Holiday Inn. Maybe I can help finding a hotel if you allow me?

  6. #46
    Dawn Keep in mind if you ever want to have it in Houston, TX my mother in law works for Hoilday Inn and can get us a cheap rate on rooms and conference room. I am going to check with her I don't know if her dicounts only apply in state or will work for out of state but I think she can get the rooms for $69 at a Holiday Inn. Maybe I can help finding a hotel if you allow me?

  7. #47
    Senior Member karahess's Avatar
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    Typo on my part . . . . I meant to say we are looking at other location possibilites/suggestions for after the 2011 conference not 2012 conference.
    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.

  8. #48
    Do we know if there are any concrete details on the conference this year. I would really like to start planning so that I can make sure to be there =)
    My little Angel- Scarlett Ray Benitez was born July 19th 2008. She was born completely blue and not breathing at 38 weeks- she was 5 pounds and 12 ounces. She was diagnosed about an hour after birth with left sided CDH and she had a successful surgery two days later. The 19 days she was in the hospital are a blurr to me now. The doctors told us she did amazingly well for having CDH. She has acid refulx- severe asthma- and a few developmental delays and with all of that- to me and my husband she is perfect!! She is the happiest baby I have ever known (and no I am not biased ). Even when she is severly sick she still smiles. I thank God every day for giving me her!!

  9. #49
    I got here late, but I'd be willing to help out if people are interested in the Chicago and/or Milwaukee, WI area. There are lots of fun things to do in the Midwest!

  10. #50
    Crystal, I think the dates and location in Orlando has been finalized for 2011. Dawn just posted this on facebook:
    "CHERUBS is proud to announce that CHOP will also join us at our 2011 Congenital Diaphragmatic Hernia Conference On June 23-26 in Orlando, FL! Our guest speakers now include Mass General, DHREAMS, St. Louis, Toronto Sick Children's, Baylor and CHOP!!!"
    I don't see what hotel it is going to be at yet posted.
    I am definitely going (I live in Florida and my sister lives in Orlando so it will be easy for me)! Looking forward to meeting you and Scarlett!
    Mom to Dakota Tenney- born 12-25-08 (RCDH). Diagnosed at 29 weeks. Born 7 weeks and 2 days early (32 weeks and 5 days). She is my Christmas gift and I am never giving her back. ECMO three days. Surgery on Day 13. Home on cannula oxygen 2-25-2009. Off oxygen 3-31-2009. No feeding tube yet *knock on wood*. Hard to feed and still a skinny little girl- but we are working on it!

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