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Thread: Need Stories and Photographs for our Newsletter and Book!

  1. #21
    Dawn-I didn't send a pic with Alex's story, should I go ahead and do that?
    Donna Easley mother of Alexander born 9-28-06 with RCDH ECMO 9 days- ASD- chronic lung disease- pulmonary hypertension- tracheomalacia- reflux- nissen- g-tube- trach and home vent since 6/2007 overall a happy and rotten 2 year old and little brother to Walker (5) http://www.totsites.com/tot/alexeasley http://webpages.charter.net/jtejctn/cdhsmall.jpeg

  2. #22
    I am in the progress of finishing Gabriel's story - happy to include it in the next newsletter and happy to include in the book. If I'm not too late I can send a pic of Gabriel for the newsletter?
    Jaana - mum to Gabriel and his big sister Shaddel Liisa. Diagnosed 19 weeks in utero with LCDH. Polyhydramnios. Surgery day 3 - collagen patch. 8 days vent and 3 days oxygen. 6 days NG Tube. Home after 13 days. Additional surgery at 7 weeks for bowel obstruction - reflux settled. VSD closed naturally and no problems with lungs. http://i316.photobucket.com/albums/m...abKiasmall.jpg

  3. #23
    Sorry, I missed this! Yes, you can send photos - membership@cherubs-cdh.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.

  4. #24
    I will write Juan Pablo's story for the book and the next newletter
    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. #25
    Dawn-I went ahead and sent the picture yesterday. Sorry, about the mind lapse. I don't know why I didn't send it with his story. Hope you are doing well.
    Donna Easley mother of Alexander born 9-28-06 with RCDH ECMO 9 days- ASD- chronic lung disease- pulmonary hypertension- tracheomalacia- reflux- nissen- g-tube- trach and home vent since 6/2007 overall a happy and rotten 2 year old and little brother to Walker (5) http://www.totsites.com/tot/alexeasley http://webpages.charter.net/jtejctn/cdhsmall.jpeg

  6. #26
    Hi Everyone,

    I'm finishing up the newsletter and updating the banner at the top of the site. Any new photos in our photo albums will be added. I have a hard time keeping up with avatar photos and photos you all post within posts here so please e-mail me your photo or add it to the main photo album.

    Thanks!
    Dawn
    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.

  7. #27
    I sent you Alyssa story now I just have to send you some pics.

    Alyssa~ 7/19/2004; LCDH- ECMO 11 days (VV 5 days)- (VA 6 days)-To date, the only Double ECMO Case at Helen DeVos Children's Hospital, Vent 19 days- Osc. Vent 1 day- Jet Vent 1 day- Oxygen 20 days. 64 days in the NICU, came home on NG tube, continuous drip feeds. 02/28/2005 Fundoplication and G-tube placed.

  8. #28

    cherub stories

    Dawn I have been updating Payton story for months now, I want to be as detailed as I can, so it will be informing to others who may read it....In fact I just pulled out Payton's medical record file ( or at least the condensed version that was $80, her full medical record would have cost us almost $800 can you believe that) It brought all the memories back as if it were yesterday, I never even read thru it till now five years later......I do have until October 31 to get in submitted correct???

    Thanks

  9. #29
    When is the deadline for the stories to be in for the Stories of Cherubs Vol 2??
    Jaana - mum to Gabriel and his big sister Shaddel Liisa. Diagnosed 19 weeks in utero with LCDH. Polyhydramnios. Surgery day 3 - collagen patch. 8 days vent and 3 days oxygen. 6 days NG Tube. Home after 13 days. Additional surgery at 7 weeks for bowel obstruction - reflux settled. VSD closed naturally and no problems with lungs. http://i316.photobucket.com/albums/m...abKiasmall.jpg

  10. #30
    Ill send you Claire's story and pics!
    Ashley Jackson Louisiana State Represenative Claire Noel Jackson born 12-10-07 had repair on 12-18-07. LCDH with the stomach-intestines-liver and spleen up. Had a bowel obstruction at 5 months.The nebulizer is our best friend!.but is still a very happy baby!

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