We got the results of Matthew's latest blood work. This is the first done since we increased the Predinsone and since he started the Methotrexate. These tests results are almost the same as the last ones done 4 weeks ago. That is good in that at least things are not getting worse as far as the inflammation goes. Now I will be interested to see if the results start to get better.
Over all Matthew is feeling better. He has more good days than bad right now. He has not had a stiff and sore neck in a couple weeks, which has been such a blessing. When he is stiff and sore right now it is generally on his ankles and feet. It has been 9 days since he has had a fever-yeah! That is big for him right now.
Matthew started Little League baseball a couple weeks ago, along with his two big brothers. We live craziness for a few months during ball season. It is fun though. We are having to make sure he doesn't do too much of the running exercises during practice. He has had a couple bad days at the beginning when he over did things the day before at practice. We are so thankful that he is able to participate in this. I think it gives him a sense of normal in a life that has been pretty hard for him for 8 months. It is great to see his excitement when he gets to go play. Our challenge is teaching him to take it easy even when he feels good, knowing that too much physical exertion for him will cause a bad day tomorrow. He is an amazing kid with such a positive attitude through all of this!
Please continue to pray that he feels good more often. In the next couple weeks we will start lowering the Prednisone. Hopefully he will be weened off of this in a few months. Pray that the Methotrexate would kick in and do its job in the absence of the Prednisone.
In Christ's Hands,
Christina
Tuesday, March 24, 2009
Wednesday, March 4, 2009
Reality
I thought I would report on how Matthew's first day on the new drug, Methotrexate went. As far as I can tell he has no side effects from it. We were told that when he takes in on Tuesday night he could likely feel nauseated from it. That didn't happen last night. Then we were told the next day, today, that he would probably be very sleepy. Well, he took a nap for about an hour today, but he does that often as he doesn't feel well many days. He has felt well today, no aches or fever. He had a hard day on Sunday and again yesterday. Fever and sore ankles and neck. You should see his ankles when they are swollen. Poor guy! We are thankful that so far this medicine seems to do OK with him. Tonight he takes the Folic Acid to replace what we wiped out last night.
I was so thankful to find out that Matthew didn't have a life threatening illness. I was relieved to find out that it was JRA. The reality of what this will mean for his life is now settling in for me though. It hit me yesterday and my emotions went a bit crazy. I am saddened to think that he will have these physical challenges in life(not to mention all the pain), but encouraged when I read about people who can lead a pretty normal life with the meds. Then I am worried about the long term effect of being on meds, but am thankful that we live in a time that we have access to this research and medication.
Two nights ago I had an awful headache. So bad that it made me nauseated and I couldn't stand the light. I had to just go to bed. I felt awful. The next morning, yesterday, Matthew woke up sore with swollen ankles. He had a fever and his neck and jaw were very sore. At one point he just cried because he hurt so bad to take a bit of his food. Tears were streaming down his face. He had to eat something so he could take his medicine in the morning. I know it hurt him so bad. Having just had my bad headache the night before, it really hit me hard. I can't imagine dealing with the pain that he does as often as he does. He is my hero. So as I right this with tears in my eyes from the memory of this yesterday, Matthew is running through the house shooting Trevor with his ten round Nerf gun :) I think Trevor is letting him win :). I am thankful for the good days!
Christina
I was so thankful to find out that Matthew didn't have a life threatening illness. I was relieved to find out that it was JRA. The reality of what this will mean for his life is now settling in for me though. It hit me yesterday and my emotions went a bit crazy. I am saddened to think that he will have these physical challenges in life(not to mention all the pain), but encouraged when I read about people who can lead a pretty normal life with the meds. Then I am worried about the long term effect of being on meds, but am thankful that we live in a time that we have access to this research and medication.
Two nights ago I had an awful headache. So bad that it made me nauseated and I couldn't stand the light. I had to just go to bed. I felt awful. The next morning, yesterday, Matthew woke up sore with swollen ankles. He had a fever and his neck and jaw were very sore. At one point he just cried because he hurt so bad to take a bit of his food. Tears were streaming down his face. He had to eat something so he could take his medicine in the morning. I know it hurt him so bad. Having just had my bad headache the night before, it really hit me hard. I can't imagine dealing with the pain that he does as often as he does. He is my hero. So as I right this with tears in my eyes from the memory of this yesterday, Matthew is running through the house shooting Trevor with his ten round Nerf gun :) I think Trevor is letting him win :). I am thankful for the good days!
Christina
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