Here is our little guy enjoying some California rolls. We keep raw tuna out of his diet, but his normal go to meal is chicken teriyaki.
Hirschsprungs Disease News: I received an email from Dr. Levitt today. It’s sad news for the folks at Cincinnati Children’s but it’s good news for those little ones who are suffering form colo-rectal issues. Dr. Marc Levitt is moving to Nationwide Children’s Hospital in Columbus. He stated that… “it will be an incredible opportunity, to help [...]
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 [...]
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 [...]
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, [...]
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 [...]
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 [...]
Our little guy is pooping again. He’s had a foot fungus thing going on for a few months now. There is a school of thought that if there is an external fungal expression, that there could be an internal fungal imbalance going on too. I’ll update this post soon with what medication he has been taking.
Well right after his 4th bday he started w/ a minor wet cough. Pooping started to slow, maybe because of the mucous. Then just in time for Xmas his pooping stopped. We had to irrigate the day after Xmas and start him on senna. The irrigation was very hard but I got him clean and [...]
Joey had a wonderful week of celebrating with all his friends and family. He’s doing so well, growing, eating and pooping like a champ!!! Its been 10 mos since his second round of Botox and we cannot believe how close to normal things have been. We do sit on the potty for 1.5-2 hours a [...]