Wednesday, March 13, 2013
Trevor's recent appointment
We went to Shands on Monday for Trevor's infusion. Everything seemed normal. He was in a lot of pain but he seems to be all the time again now. The doctor did stop by and talked to us for a minute even though we did not have an appointment. He wanted to do extra blood tests to see if Trevor had enough antibodies. I called yesterday and still no word. Trevor had to leave school early Tuesday and checked in late on Wednesday. This morning he said his back hurt so bad that he just could not move. Even though he did not feel well, he worried about falling behind I. School. At 9:30 he told Chad he wanted to go to school. He looked awful when I picked him up from the bus stop. He made it though. Dr. Eanett prescribed him a new antibiotic. I am ready for summer. I hope to find the results from the antibodies test tomorrow. Poor kid.
Saturday, March 2, 2013
Does this ever end and why can't I stop crying?
Trevor had to go to see his pediatrician again on Tuesday for congestion, sore throat, etc. he again has a sinus infection. He is on antibiotics again. He also prescribed him a nose spray. If he is not better by Friday, he is to return to the doctor. We did not return on Friday, he seems better? He says he feels better or the same, I don't know. I should have taken him. I guess we will see how the weekend goes. He has an appointment with the neurologist on Tuesday the 5th.
Another issue we have been dealing with is school. He does not have even have one fine this year so far. But he says he went to see the guidance counselor on Thursday for not doing work in his class. I guess he and the teacher came to a realization that Trevor needs structure and does not do well with the lack of it. They wrote a list of all of the activities that they need accomplished in this class and I think things will be better.? He has also told me he does not like this class because the teacher really wants him to do a news show about his JA. He says it makes him feel very uncomfortable when she brings up his condition in front of his peers. I don't blame him for that. He also had an issue on Thursday in PE with talking. He and some friends had to sit out. Which if you know trevor is kinda funny because at school he usually does not talk. So that brings us to Friday. He says a friend of his hit a volleyball out of his hands while he was trying to put it away. It almost hit one of the coaches and she was mad. He says he tried to explain but could not get a word in. Anyway, the coach told him that she was going to talk to me and one of his favorite teachers ever. She said she always hears such good things about him from us but maybe we need to hear about this story about how he is behaving. In Trevor's way, he is devastated. He does not cry, he gets angry. So now, he hates his school and just wants to go to a local public school. I am sure this will pass but I really wish I knew what he was going through his head. And if he is acting out, fine him, write him up, tell me. At least I can have some solid hard evidence that something is going on. He barely says a word in his other classes. Needless to say, I think Trevor needs to talk to someone. I can't even imagine how his brain is to comprehend his disease. I am looking for someone now that has dealt with children with chronic illness.
The other week, I saw an episode of Grey's Anatomy. It was season 9 episode 13 which aired on 1-31-2013. I wish I could find just the clip and post it...maybe one day. I can only find the whole show. It is about a 13 year old girl who was a gymnast who had to have a double hip replacement. They never mentioned JA or why she had to have her hips replaced but it seemed so much like the disease. After they do the surgery and the girl does not want to walk. The scene where she is talking to the doctor named Callie made it all clear to me. If you get a chance, watch it. What the little girl says to Callie is heartbreaking. She tries to make Callie realize how it would feel to be in her situation. She was a gymnast, active and now the doctors were hopeful after her hip replacement that she would be able to ride a bike one day. The girl does not want to ride a bike, she wants to be a gymnast! It is really heartbreaking. If Trevor even feels an ounce of that, it crushes me. And yet he has to.
I guess it has taken one full year of this new life we have for me to realize that this is the way it is. I literally have been crying since last night and continue. I don't know when it will stop. I guess I need the counseling too. Why him?
Another issue we have been dealing with is school. He does not have even have one fine this year so far. But he says he went to see the guidance counselor on Thursday for not doing work in his class. I guess he and the teacher came to a realization that Trevor needs structure and does not do well with the lack of it. They wrote a list of all of the activities that they need accomplished in this class and I think things will be better.? He has also told me he does not like this class because the teacher really wants him to do a news show about his JA. He says it makes him feel very uncomfortable when she brings up his condition in front of his peers. I don't blame him for that. He also had an issue on Thursday in PE with talking. He and some friends had to sit out. Which if you know trevor is kinda funny because at school he usually does not talk. So that brings us to Friday. He says a friend of his hit a volleyball out of his hands while he was trying to put it away. It almost hit one of the coaches and she was mad. He says he tried to explain but could not get a word in. Anyway, the coach told him that she was going to talk to me and one of his favorite teachers ever. She said she always hears such good things about him from us but maybe we need to hear about this story about how he is behaving. In Trevor's way, he is devastated. He does not cry, he gets angry. So now, he hates his school and just wants to go to a local public school. I am sure this will pass but I really wish I knew what he was going through his head. And if he is acting out, fine him, write him up, tell me. At least I can have some solid hard evidence that something is going on. He barely says a word in his other classes. Needless to say, I think Trevor needs to talk to someone. I can't even imagine how his brain is to comprehend his disease. I am looking for someone now that has dealt with children with chronic illness.
The other week, I saw an episode of Grey's Anatomy. It was season 9 episode 13 which aired on 1-31-2013. I wish I could find just the clip and post it...maybe one day. I can only find the whole show. It is about a 13 year old girl who was a gymnast who had to have a double hip replacement. They never mentioned JA or why she had to have her hips replaced but it seemed so much like the disease. After they do the surgery and the girl does not want to walk. The scene where she is talking to the doctor named Callie made it all clear to me. If you get a chance, watch it. What the little girl says to Callie is heartbreaking. She tries to make Callie realize how it would feel to be in her situation. She was a gymnast, active and now the doctors were hopeful after her hip replacement that she would be able to ride a bike one day. The girl does not want to ride a bike, she wants to be a gymnast! It is really heartbreaking. If Trevor even feels an ounce of that, it crushes me. And yet he has to.
I guess it has taken one full year of this new life we have for me to realize that this is the way it is. I literally have been crying since last night and continue. I don't know when it will stop. I guess I need the counseling too. Why him?
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