An interesting HD fact

The digestive system contains it’s own nervous system called the Enteric Nervous System (ENS). Many scientists have called it the “second brain” because it is so complex. During surgery for HD, part of the colon is removed and the healthy part is reattached. This new piece of plumbing knows nothing …about “pooping,” yet it learns […]

Pooping slow down!

YAH…his poops are getting bigger (HUGE) and slowing down to 3-4x per day………….oh my goodness. THIS IS AN AWESOME, INCREDIBLE ACCOMPLISHMENT for our HD baby!!!!!!!!!!!!!!!!! YAH YAH YAH. It is not happening every single day, but it has been about two weeks of great slow down. YIPPPEEE!

ER visit

So our pooping slow down turned into a pooping STOP. So we had almost a week of daily enemas to keep JC cleaned out. Poor little man HATES them and we HATE giving them to him. It takes the two of us to hold him down and then it takes 45-60 min of naked time […]


So we went to see the nutritionist a few weeks ago and didn’t really get much help. She seemed to be more concerned w/ talking about his protein intake as opposed to his fiber intake. We talked a bit about soluble vs insoluble…but all and all I didn’t get much help. I did however get […]

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 […]

enema, laxative and diet!

So after 14 days on oral and topical anti-fungul Joey Cooper’s diaper rash was still not going away. We had a few days where it started to look better, but then the redness, bloody, open sores were back! When you hear diaper rash you may think, what is the big deal? Well this diaper rash […]

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 […]

4 month post-op

Joey Cooper is doing so so so so great! He saw the local surgeon at end of Sept and we were told we did not have to dilate anymore….BUT when we spoke w/ our Cincinnati surgeon he recommended weaning him off the dilator- which will take another few months. So we still dilate, now down […]

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 […]