You ladies have me crying! You're words are very touching!
You ladies have me crying! You're words are very touching!
Kara- mom to Aaron (8-30-03) and Adam- LCDH (8-7-06). Gastric Volvulus at 7 months old; Borderline Chiari Malformation; reherniation- bowel blockage and intestional malrotation at 26 months old; Apraxia of Speech - neurological speech disorder; Auditory Processing Disorder; Asthma; and frequent headaches.
Dawn-with all you are doing...if the newsletter is late.
Please don't worry about it.
It is ALWAYS FANTASTIC!!!!!
These words are very touching and it is good we all have each other.
Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]
I don't know it you can use all of this quote but I do not mind it you paraphrase: CHERUBS is important because of the awarness for research. I want to know WHY it was for our babies. Do we not deserve that? Parents with children with cancer or AIDS or Cystic Fybrosis or Spina bifida know what causes it. Parent with children born with CDH don't know why. I don't know why. I know it is not because I live in South Carolina because Shaz lives in Australia. I know it is not because I was 35 when Baer was born because Corin was 23 when Gabe was born. I know it was not because I was married because Tania had a partner in Darryl when Jacob was born. I know it is not because I was having a boy because Stephanie already had three girls when Shelby was born. I know it was not because I worked around chemicals in a engine factory because Amy was a teacher while expecting Faith. I know it was not beacause he was my fourth and I already had 3 perfect healthy children because Shannon was Kate's first and Jeremiah was Sarah's first. I know it was not because I had teenager's at home to help out with a sick baby because Kara had a toddler when she had Adam. I know it was not because it was 2007 and there wereso many pollutants in the air because Dawn had Shane in 1993. I know it was not because I did not have top notch prenatal care because Judi was in the military when Christopher was born. I know that it was not because I am not a christian because Penny prays to God everyday yet Cole was still born with CDH. I know that it is not because I am white because Juan Pablo and Fer are hispanic. I know that it is not because I am overweight because Danielle is and was thin when Alyssa was born. So now I know so many reasons why NOT, yet I and all the other CDH parents are still looking for WHY our babies where born with CHD. Until we have that answer we cannot begin to hope for a solution. This is why I think that CHERUBS is so important.
cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg
LYNNE !!
this post was great !!
(thank you for including me
LYNNE !!
this post was great !!
(thank you for including me
I hope this will touch all who read it. We have all been told what did not cause our child's CDH, but never what did cause it.
cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg
WEll Lynne, you hit the nail on the head, no matter what area of the world, what size, race, social status, it can affect you. But we dont know WHY !! I bet all of us mothers thought "what did I do wrong, what did I not do" , I often think what if someone famous, a movie star or someone of that status had a child with this, think of the media & what attention it would get. Dont get me wrong, I'm not wishing this on anyone, I guess it's just like anything else, out of sight, out of mind.
I agree. Won't wish it on anyone, but with all of the autism attention in the media and Jenny McCarthy, I wish there was a celeb spokesperson for CDH. If I ever start playing the lottery and win you better believe that my money is going to CDH research and CHERUBS. In as much as I love you ladies and your beautiful children, I wish we all had never met because that would mean there was no such thing as CDH.
cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg
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i agree about the donation, i wish we could do more!!