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Thread: Diversity Event at Wal-mart

  1. #1

    Diversity Event at Wal-mart

    I need a little bit of help, I was approved to have a diversity event at work, It is going to be about what management can do to help our associates that are going through or have gone through losing a child and raising a child that has special needs. The main idea is to help management throughout the company understand what people are going through in the hard times. So many people in company's do not know how to deal with situations like these, you really don't understand it until you have gone through it. My boss told me one day he didn't approach me about the things going on with Johnathen and he didn't realize how hard it really is until he saw Johnathen in the hospital hooked up to all the machines and he had the stomach patch from surgery. Many people don't understand and I want to help them to be able too. They will learn how to more effectively deal with these situations when they arise. I am going to focus primarily on Johnathen's story and CDH(raise some awareness of our cause). Plus I am trying to find people to speak from the point of view that has a surviving child and the different things that gone on, ex. feeding issues, oxygen and stuff of that nature, all the doctor's visit and how time consuming it can be and how anything major could happen anytime. I don't know if there are any people that are near the Oklahoma City area that may like to speak, It will take place at the Shawnee Walmart. I was also wanting to make a collage of survivors and our little angels if anyone would like to send me a pic to include you can e-mail it to me at candiemknotts@yahoo.com, it would be greatly appreciated. I am trying to come up with more ideas and things I can do and say, maybe some pamplets about CDH I do believe there is one one this site I could use. I've been really wanting to do something to raise awareness of CDH and also help management in the workplace better understand what their associates go through, I can use all the help I can, so if you have any ideas let me know it would be greatly appreciated. It will be on Thurs. June 11th at 10 am at the walmart in Shawnee Ok.
    Candie Knotts Mommy to Johnathen Alexander Porter born Nov. 18 2008- 7lb 8oz- 32 days old- diagnosed with LCDH at 19 weeks- 27 days on ECMO- Repair on day 22- 32 days on Ventilator- 9 days on Dialysis- and 27 days on Nitric Oxide.

  2. #2
    Candie this is amazing! What a great event.....and so very needed! You are so right....people do not understand. Waht a great way to raise awareness!

  3. #3
    Great idea! I will send you a picture of Braden to use in the collage.
    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. #4
    WONDERFUL!!!! Candie, I'm going to mail you a few things!
    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.

  5. #5
    What a great event and I am happy that you are going to be a part of this event to help others and spread awareness on CDH. I will email you a picture tomorrow for your collage! If I lived closer, I would definitely have come to help you out.

    Do we have a OK state rep???? Maybe they would know somebody close by to contact to see if they are willing to help out.
    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. #6
    Actually I don't believe we do . . . maybe that is something else I can do too, but I do know there were a few other CDH babies that were born a few months prior to Johanthen at OU Childrens hospital in Oklahoma City, I was hoping they may be a member here, hopefully so! I appreciate everyone's help, I can't wait to make this a success.
    Candie Knotts Mommy to Johnathen Alexander Porter born Nov. 18 2008- 7lb 8oz- 32 days old- diagnosed with LCDH at 19 weeks- 27 days on ECMO- Repair on day 22- 32 days on Ventilator- 9 days on Dialysis- and 27 days on Nitric Oxide.

  7. #7
    If we don't have a state rep. for OK and you are interested, email Stephanie at solivarez@cherubs-cdh.org. I am sending you a picture here in a couple of minutes.
    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

  8. #8
    I think this is fabulous! It's still awkward when I visit my workplace...I haven't gone back yet, I'm staying home with Landon for another year. I know they understand why I'm not back yet, but they don't understand the reality what we've been through. Conversations are difficult...they ask "How is Landon?" What do I say?? If I say "fine" they think he's 100% okay, if I don't say "fine" I have to get into a big discussion about everything...most of the time I say "We're hanging in there" or "He's continuing to improve". I feel bad for them b/c they're trying to make conversation and are so nice, but really what do you say?? I've been wondering lately if I'll even be able to go back.

    I just sent you a picture Candie...let me know if you need any other materials!
    Shana ~ Mom to Nyah-Lyn (05-31-2004) and Cherub Landon Matthew (06-20-200 Bilateral Diaphragmatic Eventration. Left side repaired @ 3 days old- Right side repaired @ 4 months old --> total hospital days = 42. He's our hero! http://i45.photobucket.com/albums/f8...bonSmall-3.jpg Landon's Journey: http://www.onetruemedia.com/shared?p...m_medium=email

  9. #9
    Hi Candie,

    I just sent you a picture of Addisen for your collage. Good luck with everything.
    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

  10. #10
    Candie,
    WOW - this event sounds awesome.
    Thanks so much for asking for pics.... I will email you one of Liam now.
    hugs
    Shaz xx
    Sharon - mum to Liam - 30/04/03 RCDH- 2 CDH repairs- Vent: 22 days- oxygen: 315 days- ectopic right kidney- NG Tube: 3 years & 7 months Chelsea-Rose - 08/03/99 Co-Rep for Australia - sknott@cherubs-cdh.org http://i281.photobucket.com/albums/k...nLiamsmall.jpg

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