Brenda Weiss

6.5 years old and 6 years post pull through

Joey continues to amaze. Things are ‘normal’. We monitor is fiber and water daily. Keep a very ‘clean’ healthy diet w/ some cheating here and there. He poops 1-4x per day. They never look or sound like a ‘normal’ poop but that is totally okay w/ us!!!!! He’s been on antibiotics twice this year w/ [...]

saccharomyces boulardii

S. boulardii is one of the supplements Joey takes daily. We recently increased his dosage after he started suffering from very very watery poop following/during a head cold. His poop turned to completely to dirty water on day 2-3 of a cold. He takes this ‘healthy yeast’ daily (2 capsules per day emptied into applesauce). [...]

Stomach bug

We all got the dreaded stomach bug over New Years. I am very very very happy to report that allthough Joey did get sick (vomitting) he had NO HD flare-ups at all. He stopped pooping for a day, but that was because we didnt eat for 24 hours or so. He got better after 24 [...]

there is HOPE….

Today I got a phone call from an HD Mama from Texas. Her two year old is struggling w/ not pooping. Her GI’s are pushing Miralax. All and all she is having a really tough time, not only w/ the daily STRUGGLES of HD but w/ the emotional component. In talking to her I remembered, [...]

One year irrigation free + stomach bug + Happy Birthday Joey

We made it ONE YEAR irrigation free. I’m so amazed. Every single December has been a struggle for Joey and I can list the things that happened each and every Dec since he was born on 2008. I dont have a great memory but when it comes to HD my mind remembers it all. Last [...]

Doing GREAT!

Joey is doing great! Pooping so well. Gaining weight, growing, doing well in school, making friends, playing soccer, talking, dancing, eating. We are so happy and so grateful for every single normal day. There isn’t a day that goes by that we don’t thank god for poop and pray for continued poop. We still watch [...]

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 [...]

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 [...]