Stay Connected

Results 1 to 5 of 5

Thread: CDH Awareness - St. Louis, Missouri Parade of Cherubs

  1. 02-29-2012, 12:54 PM #1
    Dawn Torrence Ireland
    Dawn Torrence Ireland is offline
    Administrator Dawn Torrence Ireland's Avatar
    Join Date
    Jun 2007
    Posts
    4,087
    Blog Entries
    59

    CDH Awareness - St. Louis, Missouri Parade of Cherubs

    Join CHERUBS & St. Louis Fetal Care Institute in the first annual Parade of Cherubs to raise awareness of Congenital Diaphragmatic Hernia!!!!

    https://www.facebook.com/events/181282675316108/

    ALL CDH families and friends are welcome to participate!!! ALL CHILDREN ARE WELCOME TO WEAR WINGS!!! Including siblings, cousins, friends, etc. Adults welcome to wear wings too!

    Everyone, please also wear appropriate CDH Awareness gear (http://www.cdhawarenessshop.org/) and the cloud CDH ribbon! Free graphics you can use can be found there as well.

    Wings can be purchased at http://www.savethecherubs.org/
    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.
    Reply With Quote Reply With Quote
  2. 03-01-2012, 11:10 PM #2
    NeilRubenstein
    NeilRubenstein is offline
    Senior Member
    Join Date
    Feb 2011
    Posts
    195
    Blog Entries
    5
    If you can't make it to the parade but want to show your support...now there's a way. Check out the CHERUBS Virtual Parade page to find out how you can participate!

    http://www.facebook.com/CherubsVirtualParade

    You can participate on Facebook, twitter, Google+, and Pinterest
    Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.
    Reply With Quote Reply With Quote
  3. 03-12-2012, 04:25 PM #3
    NeilRubenstein
    NeilRubenstein is offline
    Senior Member
    Join Date
    Feb 2011
    Posts
    195
    Blog Entries
    5
    Here's the St. Louis parade official sign-up form:

    http://stlouis2012paradeofcherubs-eorg.eventbrite.com/
    Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.
    Reply With Quote Reply With Quote
  4. 03-23-2012, 12:49 PM #4
    Chris and TracyMeats
    Chris and TracyMeats is offline
    Administrator Chris and TracyMeats's Avatar
    Join Date
    Sep 2007
    Posts
    6,814
    We need help in running this event, if you are interested, please let us know! The hospital is the one who contacted us in holding this event and we want to have a great turn out. We also are in need of a MO state representative for CHERUBS, please let me know if you would like more information on volunteering. We also need hospital angels in MO if you are interested.
    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
    Reply With Quote Reply With Quote
  5. 04-19-2012, 05:02 PM #5
    Chris and TracyMeats
    Chris and TracyMeats is offline
    Administrator Chris and TracyMeats's Avatar
    Join Date
    Sep 2007
    Posts
    6,814
    I hope tonight's event is great, with a ton of CDH awareness happening!
    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
    Reply With Quote Reply With Quote
« Previous Thread | Next Thread »

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  

Forum Rules