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I would like to see whatever else eveyone thinks that their employer could have done to make things easier or anything they could have done differently (ex. grant you more time off, more understanding), I know what my employer could have done, although they were quite understanding, but I want to know what others may have experienced too. Thanks.
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.
Well it went well today, I had a hard time at first telling Johnathen's story out loud to a group of people, but other's cried too with me, and I felt so great afterwards telling it, now 30 more people know about CDH and Johnathen's journey! I was pretty shocked by the amout that attended I figured on half that, but I was excited. Plus I went back to the children's hospital in Oklahoma city today too where Johnathen entered this world and flew to heaven from, we had our quarterly children's miracle network meeting there, it was great. That was difficult too since it was my first time back there and of course the elevator stopped on the floor he was at, so I got a little choked up, but I was glad I went. Thank you everyone that submitted a photo for my collage and helping me, I greatly apprecited it!
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.
I'm so glad it went well! Congratulations!
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
So happy the event went well. Johnathen was watching over you and is very proud of his mom! Hugs!
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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