i was diagnosed with TEF and was given surgery immediately after birth; happy to say i'm doing great. fortunately i had no other defects. i have some difficulty eating occasionally but nothing too serious. anyone else out there with TEF? i've never met anyone else. i'm 19.
@HighOnFire19 you should try the facebook pagre "bridging the Gap" they do have an adult subgroup. Also eatef.org has a discussion forum. There are several pretty active FB groups...Glad to hear you r doing well!
Well good luck on your journey. I didnt include it on this montage but we ended up spending her 1st birthday in the ICU in respiratory distress for 2 weeks. It was devastating. She ended up at the hospital with the same isssue a few months later but since then we have been hospital free, over a yr now! Still lots of coughing during meals but hard to know what 'normal' is for EA kids...best of luck and happy birhtday little Riff!
this was a wonderful montage! my daughter, jaedyn had her TEF repaired at 2 days old in aug of 2007. she is going on 4 and is doing very well. she did have on dialation and a second surgery to repair a leak in the distal end of her esophagus. These kids are strong creatures. Im happy for your little one!
touching... Our little Riff had to go through the same hell. In June he'll throw his first birthday party...Still difficulties with eating but we have faith everything will turn out fine
Thanks, she turned 2 in March and is doing fairly well. We were worried about her severe brain bleed for so long but she is super smart. By 18mo she knew 150 signs, 2 languages, her ABCs, counting to 10, taught herself to write a few letter and numbers. Such a relief. She had an eye surgery @ 2mo and we didnt if she would see but her sight is great. She still has lots of feeding issues, coughs a lot because of (we think) swallowing disfunction and reflux. I feel so blessed and lucky...
i was diagnosed with TEF and was given surgery immediately after birth; happy to say i'm doing great. fortunately i had no other defects. i have some difficulty eating occasionally but nothing too serious. anyone else out there with TEF? i've never met anyone else. i'm 19.
HighOnFire19 6 months ago
@HighOnFire19 you should try the facebook pagre "bridging the Gap" they do have an adult subgroup. Also eatef.org has a discussion forum. There are several pretty active FB groups...Glad to hear you r doing well!
worldys 5 months ago
Well good luck on your journey. I didnt include it on this montage but we ended up spending her 1st birthday in the ICU in respiratory distress for 2 weeks. It was devastating. She ended up at the hospital with the same isssue a few months later but since then we have been hospital free, over a yr now! Still lots of coughing during meals but hard to know what 'normal' is for EA kids...best of luck and happy birhtday little Riff!
worldys 8 months ago
this was a wonderful montage! my daughter, jaedyn had her TEF repaired at 2 days old in aug of 2007. she is going on 4 and is doing very well. she did have on dialation and a second surgery to repair a leak in the distal end of her esophagus. These kids are strong creatures. Im happy for your little one!
apexserviceinc 8 months ago
touching... Our little Riff had to go through the same hell. In June he'll throw his first birthday party...Still difficulties with eating but we have faith everything will turn out fine
henkus9 8 months ago
Thanks, she turned 2 in March and is doing fairly well. We were worried about her severe brain bleed for so long but she is super smart. By 18mo she knew 150 signs, 2 languages, her ABCs, counting to 10, taught herself to write a few letter and numbers. Such a relief. She had an eye surgery @ 2mo and we didnt if she would see but her sight is great. She still has lots of feeding issues, coughs a lot because of (we think) swallowing disfunction and reflux. I feel so blessed and lucky...
worldys 9 months ago
your daughter is amazing! how is she doing now?
JenUnderscore08 9 months ago