October 20, 2009

Dylan's Youtube Video to raise awareness of Hirschsprung's Disease

This video was made in hopes to raise awareness of Hirschsprung's Disease. Truly shows the ups and downs of what these kids go through battling a rare intestinal disorder....

October 14, 2009

Recovering and Restarting

My last post was about Dylan being sick again. After being sick with watery diareaha and vomitting for 6 days and not eating and barely drinking and not getting any help from pediatricians at home we decided to make the trip to Cincinnati to see Dr. Levitt. He had told me in an email to do rectal irrigations 3x a day, but Dylan just kept getting worse so of course I was scared and wanted Dr. Levitt to see him. Dylan was feeling a little bit better when we got there, we saw Dr. Levitt and he diagnosed enterocolitis (an inflamation of the intestines)admitted him so the nurses could continue the irrigations and the plan was to do IV fluids and antibiotics. Things worked out fine and we even lucked in to avoiding the iv. We came home and Dylan did a complete turn around....

This goes to show you that with Hirschsprungs children, a surgery isnt the absolute fix, children still go on to suffer and always will have a life time risk of getting enterocolits which can be dangerous if left untreated. We have always taken our journey with Hirschsprungs one day at a time, thats all you can do. It is a struggle that you just pray doesnt keep getting worse and hopefully gets better and pray to see that light at the end of the tunnel.