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Thread: CHERUBS 2009 Conference Hotel & Information !!!

  1. #61
    I was just filling out the registration form, and it got to the part about if we needed childcare or if we were bringing someone to baby sit. Just wondering.. can we not bring our child into the conference? I could understand why we would not be able to ( it might be a little disruptive if there were a bunch of children running around!)
    We cannot afford to bring someone with us to baby sit.. With her oxygen (canullas), issues with refluxing followed by coughing, gagging, spitting up.... The list goes on.. I can't imagine her leaving my side!!!
    I know that the conference is not for many months, so things will definately get better from now until then. I just don't know how much!
    Our precious daughter Isabel Ruth was born on June 24- 2008 with a LCDH. CDH repair- PDA Ligation-ECMO for eighteen days due to MRSA (Staph Infection- Sepsis). Ventillator and Oscillator from 6/24/08 to 8/28/08- INO machine 7/8 to 9/25. Currently home on Oxygen (Nasal Cannulas) and a Feeding Tube (Mic-key button). Currently has Bronchopulmonary Dysplasia and Pulmonary Hypertension. Taking meds for Pulmonary Hypertension- Bronchopulmonary Dysplasia- and Gastroesophageal Reflux.

  2. #62
    Elizabeth, I'm ok with her being in the conference if the board is (we'll run it past them). The reason we separate the kids (aside from the obvious distraction of the kids running around, being loud, disruptive, etc) is that the conference can be very emotional. There is sometimes a lot of crying, especially during the round table discussions when parents talk about their cherubs and the struggles. This can be distressing to kids.

    Plus, for the older kids with ears - what parents say is confidential. We want them to be able to talk freely - which they can't do if kids are in the room.

    BUT, the kids are occupied! Crafts, entertainment (clown, magician, etc). So they do have fun, plus they get to hang around other kids.

    And they all understand about reflux and oxygen - because either they have issues or their siblings did. I'm sure the kids will be proud to show off their feeding tubes and buttons to Isabel! We're a pretty understanding bunch! And it's only half a day conference days so the kids aren't going to be spending all day away from their parents - just a few hours.

    But that is a few months away and Isabel could be doing much different by then and you may not even need oxygen!
    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.

  3. #63
    Thank you! I would definately like the option of being able to have her with me. Although, the conference is a long time from now and who knows what will happen from now till then!
    Being off oxygen by then is really thinking positive!!!
    In a few months she will probobly be so much further a long, hopefully sitting up and even more healthy! I completely understand why kids aren't able to be in the conference!
    Our precious daughter Isabel Ruth was born on June 24- 2008 with a LCDH. CDH repair- PDA Ligation-ECMO for eighteen days due to MRSA (Staph Infection- Sepsis). Ventillator and Oscillator from 6/24/08 to 8/28/08- INO machine 7/8 to 9/25. Currently home on Oxygen (Nasal Cannulas) and a Feeding Tube (Mic-key button). Currently has Bronchopulmonary Dysplasia and Pulmonary Hypertension. Taking meds for Pulmonary Hypertension- Bronchopulmonary Dysplasia- and Gastroesophageal Reflux.

  4. #64
    I just booked my flight today!!!!!!!
    I will be arriving on july 22nd and departuring on july 26th!!!!!!!
    Now I have to book my room, if Charles doesn't go, I'll be sharing a room with Kara
    Fer Mom to Ana (29-11-2001) Mom to Juan Pablo (1-6-2007) born with a right sided diaphragm eventration- a rare type of CDH- severe reflux and speech delayed with signs of autism Juan Pablo- a Tribute to Life at http://es.youtube.com/watch?v=DYQAqMoTaiQ Our family blog at www.arcephoto.blogspot.com (if you want to visit- email me at maferarceamare@gmail.com so I can send you an invite)

  5. #65
    Just a quick question, when you fill the online registration form out, do you get an email confirmation or how do we know you received the form? The reason I ask, is I was on the conference site this morning and noticed the form know says 2009 registration form, but when I submitted mine several weeks ago, the registration form still said 2008. Will you be posting a list of names in the future, so we know who will be attending?
    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. #66
    When is that latest we can register?
    Shauna Curtis - Mom to Addisen Noel born 12/10/2003 with LCDH diagnosed at birth- 5 1/2 weeks in NICU- 70 days with NG Tube- Cleft Lip & Palate- Horseshoe Kidney. Also Mom to: Mitch 08/17/2006 Luke 12/11/2008

  7. #67
    I just booked our flight last weekend! We will be there the 22nd and leaving 8/2! We are spending a week in San Antonio after the conference. So exciting!
    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

  8. #68
    Before we all know it...it will be JULY!!!!!!!
    I am looking very forward to meeting all of you!!

    The latest to register...I am going to say try and do it ASAP...but if you can't....we will definetly assist you in anyway we can.
    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]

  9. #69
    Hi Ladies i'm Booking my flight this week i can't wait !!!

  10. #70
    Tracy, the same happened to me. I registered the 1st day and I haven't received any confirmation email. Are we supposed to receive one?
    Fer Mom to Ana (29-11-2001) Mom to Juan Pablo (1-6-2007) born with a right sided diaphragm eventration- a rare type of CDH- severe reflux and speech delayed with signs of autism Juan Pablo- a Tribute to Life at http://es.youtube.com/watch?v=DYQAqMoTaiQ Our family blog at www.arcephoto.blogspot.com (if you want to visit- email me at maferarceamare@gmail.com so I can send you an invite)

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