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Thread: Dallas Parade of Cherubs on April 20th

  1. #1

    Dallas Parade of Cherubs on April 20th

    Dallas Parade

    Parade on April 20th
    On Facebook - https://www.facebook.com/events/553054394719908/
    Register on Eventbrite - http://cdhawarenessday-2013dallas.eventbrite.com/
    Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
    50% of money raised will be donated to the Texas Fetal Center at Children\'s Memorial Hospital for CDH Research
    Contact Cassandra with any questions about this event

  2. #2
    Casey, look forward to seeing the pictures!!! You are going to do great!!
    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

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    Hi, my name is Lisa Carter. I am mom to 26 year old survivor, Casey Carter, born with Undiagnosed LCDH despite 5 sonograms for a large grapefruit size cyst on right ovary. Guess that is why undiagnosed. They were focusing on the cyst. Tis was a repeat c-section scheduled 2 weeks before due date. Once delivered Casey had a difficult time breathing in delivery room and taken immediately to newborn nursery and pediatrician's office was luckily just next to the Hosp. X-rays ordered and that is when she was diagnosed. She was transferred immediately by ambulance to Children's of Dallas. Dr. Coco, her pediatrician, rode in the ambulance with her as a precaution. She was in surgery within 3 hours of birth for her repair when it was discovered her intestines, stomach, spleen and liver were in her chest cavity. She spent 5 days on the ventilator, 6 days in PICU and 5 days on the floor. She was lucky because at the time only 1 ECMO machine in Texas and it was being used. Casey did extremely well and we were blessed to have her home so quickly. She has had to have 2 bowel obstruction surgeries, one @ 18 months and one @ 23 years old. For the last few years she has had quite a bit of trouble with her asthma and they finally in the last few months have done pulmonary function studies which she has failed. Her lungs they say are the lungs of a 41 year old and she has never smoked nor been enclosed in a household of smoke. The doctor says it has nothing to do with her CDH but I can't help but wonder! I remember the pediatric surgeon said right after her surgery we would not know the extent of her lung damage until she rec'd a pulmonary function study. Now she has and it does make you wonder. The is now on Singular, Advair, rescue inhaler and breathing Tx's as necessary. She has to go back in 6 months for a retest and if still not passed they will send her to a pulmonologist! But all in all, we are blessed! She is the co-rep for the State of Texas and coordinating the Dallas Parade of Cherubs! Please sign up and join us on April 20th!!!
    My email is cici1gm@yahoo.com
    Last edited by LisaCarter; 03-12-2013 at 04:21 PM.

  4. #4
    Casey gives others so much hope!!! Thank you for posting Lisa! It is great to hear Casey's journey from you, her mom.
    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

  5. #5
    Many thanks to all who have worked so very hard to get this event set up. I wish you all a wonderful day. Can't wait to hear how your speical event day turned out.
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )

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