First, Alexander was diagnosed with Hirschsprung's Disease when he was 3 days old.

That's where the nerve cells don't exist in the intestinal wall, therefore peristalsis doesn't occur, basically total blockage. I've heard different numbers, but this occurs once in about 5,000-20,000. Then, only 12% of those have long-segment (like Alexander) which is where it effects the entire large intestine and part of the small.

He was given an iliostomy at 3 days. He had pull-through surgery at 9 months. We had some problems after that. They left in a temporary ostomy. when they did the pull-through, thereby taking out of play about 6 more inches of small intestine. That wreaked havoc on the poor guy. I can relate to how important every inch of intestine is after seeing him do so poorly at that point. He weighed 16 lbs. 8 oz for 4 months.

Finally, the surgeon decided we better go ahead and close his ostomy. We put him on TPN to beef him up before surgery, and then a few weeks after surgery to keep him growing. The ostomy. closure went well, but more problems after that. For 2 weeks he wouldn't poop, was spitting up and had very distended belly, etc. We had the NG tube down him the whole time. Then, they tried something, to put him under and stretch out his sphincter muscle. Well, it worked wonders. He's been poopin' ever since.

We checked out of the hospital a couple of weeks ago and he's thriving wonderfully.

The first year of life is typically the hardest for Hirschsprung's Disease. Hirchsprung's kids have only been surviving since the 60's or 70's. Long segment like Alexander since the 70's.

He had a total of 5 surgeries in a year, 3 major and 2 minor (central line, etc.). At this point, Lord willing he'll lead a pretty normal life as far as diet, etc. We'll probably be hospital-bound whenever he gets a stomach virus or something because he can dehydrate in about 2 or 3 hours. My doctors talked to me about vitamin B12 shots, we'll probably have to do that in the future. Incontinence is also an issue with adults with Hirschsprung's, we're not there yet.