January appointment

Trevor had his infusion at Shands on Monday, January 7th. All went well. He actually feel asleep so it was good for him. It felt like we were there forever....I don't know if it was because he was sleeping or what anyway. I hate the drive, the situation.....everything. The good news...Remicade seems to be working. Trevor started feeling bad a week prior to his appointment so it hopefully means it was just wearing off.
Even though we did not have an appointment, Dr. Sukesh stopped and talked for a few minutes. He said since the Remicade seems to be working, he wants him to decrease the celebrex to one time a day(afternoon since that is when he hurts more). I am hoping in February he will take him off it all together.
A new problem we have is that Trevor has a cold. He has had it for almost three weeks. I called the pediatrician and he wants to see him tomorrow. This will complicate the medication Trevor is on. He will have to stop some,etc if he is put on an antibiotic. I hate all these medications!!
I think I am also hitting the point that I am so tired of talking, thinking, and always worrying about juvenile arthritis. I find I don't want to talk to the other parents as much. Unfortunately, the families that stay vocal are the ones that still have problems,etc. it is so difficult to find the families that can give you hope. Don't get me wrong, these families are amazing...willing to help with anything especially with words of encouragement or ideas, whatever. I just want to hear about kids that are better, not in pain, and living a life where they don't think everyday about Arthritis. I am sure it is a normal process in dealing with this disease but it is so different than where I was just a couple months ago. I wanted to know everything and anything I could learn, now...I don't want to hear anything. (Except some nights I do find myself researching studies that were completed on children with JA.). The studies are so mixed...Enthesitis-related JA is so uncommon, there is even less studies done on it than other types of JA. I guess I also think about the year anniversary of Trevor being diagnosed. It is February 20th (5 days after he turned 12). The doctor was hoping to have one year of treatment and than be done. After he failed Enbrel, I knew that was not the case but I wish it was! Okay...I will update after the doctors appointment tomorrow. I am sure many changes will take place. (This is also the first time we will see Trevor's pediatrician since we were officially diagnosed). 😁