The CGD Café

Hello All,  Domenic has been having his ups and downs with a long lasting pnuemonia that seems to just hang on. On the bright side Make A Wish Foundation has granted Domenic his wish and they will be installing a beautiful playground in our backyard for him. ( pirate theme)This is so exciting for him his own special playground he picked out we are all looking forward to the start of constrution.

Also if there are any local CGD families in the Boston area we would like to communicate with you I'm sure we must share some of the same doctors. Or anyone else for that matter.

Well I hope everyone is doing good and bless you guys all having BMT's good luck your in my prayers.

Hello  All

    The Nih is starting a remicade protocol for 25 patients with Cgd that have IBD symptoms. We are considering this due to Domenic's constant battle with his bowels. In the past we did go through 2 rounds of remicade but Domenic picked up an infection so we had to stop, but I think its time to try again.Has anyone else been contacted please respond.

Thank You

Mark 

Hello, an episode with cgd is on (usa) this sunday morning at 9:am 12-28-08. I have no idea how accurate or if it is any good but i'm going to record anyway so i can see for myself.

Hello, I don't write in very often but i do visit the site atleast once a week.Connie it is great to read how Ben is doing. My son Domenic is turning 6 this month and also started kindergarden this year. He has been doing so good a few sores around his bum has been the only issues and a little more predisone has helped that. He has scheduled appointment  coming up this month at the  NIH his third trip check up only.I can say he is definately a very active boy as i write he is brawling with his 4 year old sister who is allready taller than him and out weighs him.We still have no luck trying to get the town to remove mulch in our local playground and his elementry school won't budge on their playground in the school yard either.He brings his own toys to school and plays in a seperate paved area and all his friends join him.  Zach and Jaxsen you guys are allways on my mind and i pray that you have a speedy smooth recovery.I'll write again soon.