A week I would like to forget

This was a bad week. Trevor was late one day of school and missed one day of school. The day he missed, the night before he actually played outside. He got up, took a bath and tried to get ready. He just could not do it. I lost it. I told him he could just not play outside anymore. That he needed to stay inside after school and take it easy. He needed to go to school and concentrate on the important things, blah, blah, blah....he said he would try to come to school (he would have his dad bring him.) He even texted me how sorry he was that he fell asleep in the bath tub and that he felt so bad this morning. A little while later Chad called me at work and told me that he just could not make it to school. He said that even though he played it was the first time he had seen him smile in a long time. Boom! Yes, there it was. Reality! How did I lose sight of it? How did I forget that he is a 13 year old boy that wants to play outside with his friends? I just wish this would all end for him. I wish it would all stop. I wish this horrible disease would go away and he would get his life back! It really seems like he is having a harder time in the morning. Chad has been taking him to school so he has more time to get up and ready (2 hours 15 minutes). He used to be up and ready in 20 minutes and even the beginning of the year it was 30! I don't know how next school year is going to work. He will have to be ready to go at least 1 to 1 1/2 hours earlier. I just don't know if he physically is going to be able to do it. As it is now, he goes to bed at 8 or 8:30 and gets up at 6:00 a.m. He would have to get up at 4:30 or even earlier? I guess we will see how the summer goes.

New Research About Methotrexate...maybe I'm Doing Something Right....At Least today anyway

National Institute of Arthritis and Musculoskeletal and Skin Diseases

One more sinus infection

I'm beginning to feel like a complainer. I remember the days when I had it made. We had no real problems, no real worries, no real concerns. And now I just hold my breath waiting for what's next. I hate complaining and really sharing any sort of "my story" because I feel like I am complaining but I am doing it to hopefully one day help another family dealing with this same situation. (I am a pretty private person but people need to understand how horrible this disease is!)
Trevor is learning his body. He told me this morning he was feeling like he did a few months ago. He did say everything was green in his nose. Yuck! So he saw his pediatrician today and was put on amoxicillin for 10 days. He said it was just the start of the infection but didn't want it to get out of hand. Why is he sick again?
Chad (My husband, Trevor's dad) took him to the doctor. They asked for the updated medication list. (I usually give them one whenever we go). He had no clue. But Trevor was able to tell them EVERY medication he was taking. He also told him he was put on the new medication for his headaches. He did not remember the name of it but he did just star that one.
I am proud that he is able to take some control of his care. I always have him talk to the doctors about his pain and problems and try not to intervene but this made me proud.
Anyway, I hope this is the last illness for a while, aren't we out of this sick season anyway?

State testing (FCAT) and the many problems it brings for JA children

Well like most parents this time of year, state testing becomes a big concern. Although most parents are concerned with how well their child will perform on the test, I know other JA families like me, are concerned about their child just making it through the test.
Yes, Trevor does have a 504 and can go into another room to take the exam but he wants to take the test with his class, his teacher! So, he will. He will sit for 70 minutes straight! He can stretch his fingers and legs but technically cannot stand up. We have been having problems with his hands locking recently so I am really concerned that this will happen during the test. Yes, they will simply put him in another room and allow him to finish the test but as his teacher said very directly in a meeting, "Trevor will not do well on the test if he is away from his class and in another room." Great teacher, she knows him very well. So true.
So as we say good luck to all the students taking their state exams (FCAT in Florida) I do say a special pray for those JA kids and hope not only do they perform well on the test that they "make it through it." That they can put their pains and discomforts aside a that time period and really concentrate on the state and do their best. And don't even get me started about being at school on those days....I'll save that for another post!

April infusion and headache update

Monday we traveled to Shands for Trevor's infusion. It was pretty normal. No doctor visit, just infusion. He seemed to tolerate everything well.
For about 2 months he has not been sleeping well. I don't know if it has been pain or what (he does not talk too much about things).
Tuesday we went to All Children's (Dr. Chadahumbe) neurologist, for a follow up on Trevor's MRI of his brain and plan for his headaches. The MRI looked great no lesions or structural problems just my bad genes. She started him on amitriptyline 25 mg. (for now he just takes half a pill) He will increase to a whole pill if the half pill does not work after one week. If the whole pill does not work he can increase to one and a half pills but she does not want him to take more than that. It makes him very tired. He does take it at night. We will see. He is to follow up after 2 months.