First round of Remicade....done

This experience is something I don't think anyone can be prepared for. I have taken my mother to the cancer center for chemo for years but when it is children sitting there, it is so emotional. Yes, I held it together but it was hard. Here is my baby laying there with an IV in his arm with Benedryl, a steroid, and Remicade being put into his body. I know all he worried about was the IV. The nurse called it when we first got there. She was amazing, he didn't even feel it. He took a Tylenol (pill form) then the Benedryl was given through his IV. Next came the part we were not prepared for. The steroid! The nurse mentioned that it would cause a metallic taste and mints or lollipops would help. You know the point when your child begins to squirm and move around? We hit this point. I really thought he was going to start throwing up before he even got the Remicade started. He tried the lollipop, no help. The mints helped but he ate about 5 of them. Everything he ate tasted funny and yucky. This latest a long while. The Remicade took 2 hours but was nothing compared to the steroid. I wish I could take his pain and everything he is going through.
The noise in the infusion room reminded me of my last day with my dad. He was in the hospital, quiet, except for the machines beeping and making all their racket. All the machines beeped and made loud noises. The blood pressure machines were compressing and deflating. It was not loud but it was LOUD.
Trevor does not like to sit still so I knew it would be hard for him to sit for this long watching tv or playing a video game. He did it though. Once that medicine put the bad taste in his mouth, he didn't want to move.
He finally fell asleep. The blood pressure cuff would wake him up but he would go right back to sleep.
I wonder which medicine will win? The steroid which makes him wide awake or the Benedryl which makes him tired.When we got home he was still awake but says he is dizzy. I don't know if he is in pain from his JA but hopefully tomorrow we will know more.

Infusions are about to begin

Tuesday, Trevor will be the remicade infusions. I am nervous but have complete faith in the doctor. We did skip a dose of the Enbrel because of insurance issues and at first thought it had never helped him but as days went by, we could tell a difference. One evening Trevor and some friends were tossing the football out front and they all came running in saying that Trevor was hurt. I went outside and Allie and I had to carry him inside. His big toe area hurt. It was swollen. I really didn't know what to do so I put ice on it. Usually we do heat but for some reason I thought ice in case he sprained it. They all said he was running and just fell to the ground. That night Chad had to carry him to the tub, and carry him to bed. I was ready for Shands the next day. He was better and each day got better. The first day or two his shoe was really tight and he just had to tuck his laces in.
I really hope the infusions help. We are getting a blanket for him and some movies to download onto my iPad for him to watch. They say it should take four hours. We will be exhausted on Wednesday I am sure. So far, his teachers have been very good and supportive of the time he is going to miss.
A question I have for the doctor the next time we see him...when Trevor gets up in the morning he cracks with every step. I can actually tell if it is Trevor or Allie walking around by his sound. Is that normal? I am scared to ask because it just doesn't seem like it would be good.
I will post the first infusion experience after Tuesday. We are hoping to catch a glimpse of the Gators practice after his appointment if he is up to it. Especially after their big win to South Carolina this weekend!

Really a rash???

I have heard of many arthritis suffers developing rashes but once again thought, oh, not Trevor, "that is a different kind of JA."  Actually the Friday before his appointment he had just gotten this red dot rash on both ankles. No pain, no itching, nothing else.  The doctor did look at them.  Now that is gone (only latest about 3 days) but he has a rough feeling around the same spot on both of his ankles. And these itch!!  What is this????  Everyday, it seems like it is something else.  When is this all going to stop????  I am trying to keep a positive attitude but I just don't understand when things will go back to normal.  I hear all of these stories of families with children so much worse than Trevor and am thankful that he is "not so bad," but it really scares me that in a few months or years, he is going to be right there with these other children. 
He started the Celebrex again today and so far his stomach does not seem to bother him.  I hope that continues and he starts to see a little relief from the Celebrex, at least until he gets started on the Remicade. 
Tomorrow is World Arthritis Day and I am encouraging everyone to wear blue for arthritis!!!

The latest

I really don't know how I feel right now. I think I may still be in shock (which I think I live in right now). We went to see Dr. Sukesh at Shands. We are almost 4 months on Enbrel. He was very disappointed in Trevor's condition. He looked and felt worse than when we started this. The doctor has an ultrasound and was able to look at Trevor's joints and tendons. He looked at this wrist and foot. He had inflammation everywhere and fluid around the joints and tendons. He really saw the enthesitis (tendons). The. Sukesh said the Enbrel should be working by now. So he really wants him on remicade. He will begin in 2 weeks (once insurance approves it and they get the medication). He will go in 2 weeks than in another 2 weeks than monthly. The first four weeks will take 4 hours. Remicade is infusion based so we met the nurses in the infusion room. They all seemed nice but I could see the fear in Trevor's face. It really scares me to think of seeing him sitting in the chair with the IV and pole thing.
After the first four weeks it should take just 2 hours. The first couple, they have to be sure he does not have a reaction to the meds,etc.
Trevor did such a great job naming and pronouncing all of the meds he is on. I love how Dr. Sukesh talks to him also and wants to know his opinion as well. I just can't get the image of the doctor's face out of my mind when he looked at Trevor's wrist. He could not bend it down that far. He said Trevor is in a lot of pain. He could really tell that from the ultrasound.
He also wants to put him back on Celebrex. He seemed to feel better on that than Mobic but it bothered his stomach. He also increased his Prilosec to help with the stomach. I am hoping to get the Celebrex started this week so we can see if there is any improvement before the remicade.
I really don't know how these moms do this. I feel like I am on a roller coaster that I cannot get off of. I really felt deep down that he was going to put him on remicade which makes me sad but I also feel deep down that this is going to work. It has to.
Trevor is hurting so much today. He played football at PE and ran for a touchdown which I think really irritated him. I feel so bad for him. I pray one day he can run and not feel pain and not have to suffer for just wanting to be a kid.