Still going strong!

Wow, the last few months have been so unbeleivable. In June Doctor Goldbach-Mansky increased Jordens dose of colchicine by .3 mg/day, and the difference is incredible. Jordens last HIGH fever was at the end of July, it only lasted 2 days and no pain crisis to accompany it. The fever ended abruptly, and the low grade fever lasted only a few days, compared to 21 days like before.
Jorden still gets mild muscle or joint pain occasionally. Every once in a while he has trouble getting out of bed in the a.m., maybe 2 times a month. He has had no eye drooping and those awful reddish-gray puffy swollen eyes are no more. Most of Jorden's pain is centered in his spine and neck, and this is also where the rash mostly appears. Unfortuneatly the rash is ever present,, mostly the bask of his neck, back, face and chest. Sometimes he has about 10 hives, the ones on his neck get huge, like the size of the palm of my hand. They occasionally seem uncomfortable for him, a little itchy at times.....
jorden's lymph nodes are still always swollen, sometimes painfully enlarged....he still gets the sores in his mouth and on his rectum, but he has not complained of any on this genitals lately.
He is growing, putting on weight, and regaining control of his balance. HIs legs are strong, no more falling all the time.
Cognitively, he has improved by leaps and bounds! his language skills and memory are sharp again! I wish now I would have enrolled him in kindergarten this year, sigh, oh well. Another year of pre-school won't hurt him. He can spell his name now, and asks all the time how to spell other words. He likes to practice writing and reading. THIS IS WONDERFUL!
Thank you GOd, thank you thank you thank. Thank you to all the Dr.s and staff at NIH too. You answered our prayers. I hope it stays this way!