“Tales From a Nehi Mom”

http://coriwes.wordpress.com/

I wanted to tell the story of my son. When we got his diagonsis there was little information about NEHI or pediatric interstial lung disease and I felt very lost. I found blogging as a way to get my frustrations out with my son’s illness and after a while, other mom’s of children with NEHI found us through the blog.

By then I had found a yahoo site for pediatric ILD and a foundation that had been set up called the chILD Foundation (children’s Intestial Lung Disease) http://www.childfoundation.us/?

I blog a lot about my son’s health. Besides the ILD we have dealt with pulmonary hypertension, reflux, a milk protien allergy and DGE, Delayed Gastric emptying, which has been our most challenging diagnosis outside the ILD.

We also have happy times, and I blog a lot about just life in general and my other children.

http://wearethesimmons.blogspot.com/
http://www.prayingforparker.com/
http://mormonmommywars.com/
http://cfhusband.blogspot.com

Make it fun, funny when you can. Even if it’s sad, angry depressing news, being sarcastic makes it easier to read.

For Reflux, resp problems, motility and many others forums: http//:parent-2-parent.com/forum

UtahKids: http://groups.yahoo.com/groups/utahkids

chILD parents support group: http://health.group.yahoo.com/group/chILDparentsupport/

I blog when I have time, mostly on my husband’s laptop.

I spend way too much time reading others blogs, i’m quite addicted.

I had a friend whose knew her son was going to be born with a lot of problems and that is how they kept in touch which everyone once he was born.

My son has the “lucky” diagnosis, because his form of ILD will not kill him, nor will he need a lung transplant. Many with pediatric ILD are not as lucky. I guess what inspires me, is wanting research, wanting answers, wanting better treatment so that this disease is not a death sentence for so many children.

I think the most important thing, is that other’s have found us and have been able to find other’s with either NEHI, or just other kinds of pediatric ILD. To put it in perspective, my son is the only child that we know of in the state (Missouri) that has this disease.

I want to touch others, give them information and hope.