Disney w/ our HD friends!
Sarah and I ‘met’ online when Joey was a few mos old. We were planning our trip to Cinci for p/t, she was planning her trip to Cinci for her then 2 yr old to be seen by Levitt for consult ( he was having problems w/ Soave p/t cuff issue). We were going to […]
Such kind words from another HD family
Attention Hirschsprungs Disease families. You are not alone. We were fortunate enough to meet with another family who has a boy with HD. Our respective wives had become close friends thanks to the internet and Facebook. We met in the place of all places, Disneyland in Orlando. Here is a link to Keaton’s Blog: Eat, […]
Four years post pull through and our daily life`
Things are good…really, really, really good. Joey is almost 4.5 years old. He is in preschool 5 mornings per week. He is fully engaged, active, verbal, stubborn, adorable, sometimes fresh!, loves to wrestle w/ Daddy, cuddle and read w/ Mommy and play princesses and firemen w/ his sissy! He is FULLY potty trained. Wakes […]
Vancomycin and Diflucan – LOVE these two drugs
So I am the Mom who hates for my kids (and myself) to be on meds. Once HD entered our life I had to let go A LOT and let the meds come into our world. So once Joey stopped pooping again and irrigations had to resume I remembered that back about 1.5 years ago […]
Well he had the procedure done today. It was supposed to take 30 minutes and took closer to 1.25 hrs…all because he was so filled w/ stool Made me feel like a terrible Mommy. We did an irrigation less than 24 hrs ago, but 1x per day is just not enough and they are so […]
He stopped pooping AGAIN. We immediately start flagyl irrigations for about five days. We then stop the flagyl and just continue w/ irrigations. Enema’s don’t work, we get no return and then have to insert the irr. catheter to clear him. Xrays come back fine. We try upping his senna and that just causes vomiting. […]
After 8 weeks of not pooping on his own we have resumed an ‘aggressive’ poop schedule! I cannot believe that after 8 weeks of on/off entero and of his system shutting down he is now pooping again. WOW! I didn’t want to post until I was pretty certain that we had turned a corner. Last […]
One year post pull through!
We have made it to the one year mark!!!! YIPPPEEEE!!! I cannot believe it has been a year since our journey out to Cincinnati for Joey Coop’s pull through surgery. It has been a long road but all and all he is doing so well. I cannot believe it!!!! My boy is so strong and […]
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 […]
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 […]