I hate to say it...
BUT...things have been pretty quiet around here from a health standpoint. I hate to say it because it seems as soon as you mention how great things are, they turn to not so great very quickly.
Last week, Shelbie stayed pretty healthy, all things considered. I feel like her body is finally accepting the plasma better and all the treatments are starting to pay off. It kind of gives me a false hope that she is 'cured' but I know it's not real. Well, it's real but it's not her body doing any work, just the medicine.
Spencer had a few glitches in his week. He broke his toe playing soccer in gym class, had the pneumonia shot which irked him some and continued with his daily nausea routine but he managed pretty well. He got a job over the weekend so that is great but means he will be gone everyday after school for a few hours and I worry that it will be too much for him but we will see how it goes. He's really excited and I am too.
Sam scared me this week but other than the scare is doing well. He seems to be the healthiest of the bunch even though his bone marrow is just as empty as the others. We have known now for some time that he has the mito defect for Liebers optic neuropathy. Liebers is failure of the optic nerve which results in blindness. All the kids have markers for it but the doctors can't tell us for sure what it means. A few months ago, Sam got a black eye. At the same time, he had a problem with his peripheral vision which I attributed to the black eye and inflammation. Well, this past week, it happened again only in the other eye but it had not been injured or anything. He complained about it for two days. I was trying not to worry and take the wait and see approach but I was worried. I think I asked him every hour, "Is your vision back?" It did resolve but I don't like it when weird stuff like this happens without an explanation.
At any rate, I am glad for the break in trauma and crisis from chronic health problems, it has freed up time to deal with other things falling apart. Sadly, I know the problems will be coming around again.
Last week, Shelbie stayed pretty healthy, all things considered. I feel like her body is finally accepting the plasma better and all the treatments are starting to pay off. It kind of gives me a false hope that she is 'cured' but I know it's not real. Well, it's real but it's not her body doing any work, just the medicine.
Spencer had a few glitches in his week. He broke his toe playing soccer in gym class, had the pneumonia shot which irked him some and continued with his daily nausea routine but he managed pretty well. He got a job over the weekend so that is great but means he will be gone everyday after school for a few hours and I worry that it will be too much for him but we will see how it goes. He's really excited and I am too.
Sam scared me this week but other than the scare is doing well. He seems to be the healthiest of the bunch even though his bone marrow is just as empty as the others. We have known now for some time that he has the mito defect for Liebers optic neuropathy. Liebers is failure of the optic nerve which results in blindness. All the kids have markers for it but the doctors can't tell us for sure what it means. A few months ago, Sam got a black eye. At the same time, he had a problem with his peripheral vision which I attributed to the black eye and inflammation. Well, this past week, it happened again only in the other eye but it had not been injured or anything. He complained about it for two days. I was trying not to worry and take the wait and see approach but I was worried. I think I asked him every hour, "Is your vision back?" It did resolve but I don't like it when weird stuff like this happens without an explanation.
At any rate, I am glad for the break in trauma and crisis from chronic health problems, it has freed up time to deal with other things falling apart. Sadly, I know the problems will be coming around again.
Comments
Post a Comment