Hirschsprung’s Disease

have we had a breakthrough????????????

8.5 months post op- but whose counting? So since my last post we have seen a new local surgeon (still need follow ups every 6 months) and a gastro. I really liked the local surgeon- much better than the dr. we have seen 5x since getting home from Cinci. He is a pediatric surgeon that […]

SIX months post-op AND ONE YEAR OLD!!!!!!!!!!!!!!!!!!!!

WOW! What a year…it has been a few days of reflection for me and ALOT of happy tears. One year ago we were waiting for diagnosis and I was being discharged from the hospital and begging the midwives to come up w/ some way to let me stay admitted so I could remain in the […]

December 2008 (old ‘posts’)….

These are emails I sent out during Joey Cooper’s first couple weeks of life!  I am just getting them together for us and for Joey Coop so he can have all the documentation of exactly how he was treated/timeline of events! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 12/5/2008 B   O    Y!!!!!!!!!!!!!!!!!!!!!!!!!! Joseph Cooper Weiss 12/5/08 2:23pm 8 lbs. 8 oz […]

three month post op…more questions, no answers :(

This disease has you constantly trying to figure out what it is going to do next! The prunes worked for a few days and then they stopped ‘helping’ the poop come…so back to irrigations ‘as needed’. ‘As needed’ should mean if he does not poop in 24 hrs…however most days he poops 1-3x; BUT I […]

prunes are working!

We started prunes last week and it seems to be helping alot; we have not had to irrigate since the weekend…so that is GREAT!  Will be trying to use food as ‘laxative’ as I really really don’t want to start my little guy on any laxatives just yet..I am hoping I ‘control’ things through diet!  […]

sigh…now we have to irrigate

Think I mentioned in last post that Joey Coop has been a bit out of sorts since we got home from vacation. He has been waking up early in the evening SCREAMING about….something. Thought maybe teeth as he broke his first two right before vacation…but did not really seem to be teething. So mothers intuition […]

two months post op

Went to the surgeon last week for JC’s two month post op visit. Was very surprised to find out that his sphincter muscle is tight (prob. scar tissue forming) and we have to begin dialations ASAP. The surgeon was very happy that we had an appt when we did (on a Friday); he said if […]

One month post-op/UPDTAE

Joey Cooper is doing great!!!!!!!!! It has been 5 weeks, 2 days since surgery- but whose counting?!? His poops are starting to slow down. he was pooping a small amount at almost every diaper change and we are changing him at least every two hours during the day. His poops are starting to regulate to […]

post op day 6

It has been a rough the past couple days. Joey Coop was DEFINITELY ready to eat yesterday but he is still NPO….they had to do another xray yesterday to see if his intestines improved from Friday and they did! YAH! He was WAY fussy yesterday and we could hardly even get him to nap at […]


Arrived at hospital Sunday morning. He had his last breasfeeding session at 12pm. They put in his ‘ng’ tube (tube down his nose into stomach) around 1pm and started a solution called ‘go lightly’ to clean out his colon. After two four hour shifts of the go lightly he was ‘cleaned out’ and allowed clear […]