Weber, Joshua

[admin]

Hi. Thank you for sending me the "Cherubs" newsletter. It was really great to see that someone had started a support group for parents of children born with CDH. I have also been trying to start some kind of support group here in Wisconsin but have been somewhat unsuccessful. (I don't really know why). Although, we have been trying to set up a support group though Children's Hospital of Wisconsin called "ECMO Parent Support Group", it's not quite the same as a group specifically geared toward CDH. I'm glad to hear that your son is improving everyday. He really seems to be a fighter. My son was born on September 22, 1992 and is also doing very well at the time. He was in the hospital for four months and came home on a G-tube with severe gagging reflux. He had the G-tube removed in June, 1994 and is eating very well (sometimes too much). He has a severe hearing impairment but is learning sign language in order to help him communicate, and is slightly physically and cognitively delayed. He also has pulmonary hypertension but seems to be functioning very well with it, although he does need periodic follow-ups. I will send a short story for you to put in the newsletter soon. Anyway, I just wanted to thank you again for including us in your "Cherubs" group and I will be more than happy to help in anyway I can so please just either call me or write me if there is anything you may need help with. I have already given copies of your newsletters to two other moms. (It's wonderful)! Thank you again.

Written by Josh's mom, Kelly Weber (Wisconsin)
1995