Last week, the cardiologist phoned to hear how Monkeyman is doing on the new medications. I told her that the first 2 weeks we saw absolutely no improvement (which is perfectly normal, it apparently takes quite a while). The 3rd week he had a fantastic week. Definitely more energy in the afternoons. He played and yelled and ran around in the house like any normal 6-year old. I had to yell at him at times to stop being so boisterous! What a great feeling. :-) But, it's not that he has never had such weeks. Maybe, it was just a good week after some really bad ones. Who knows?! This 4th week he was less energetic. Much more lethargic. More pale again, cricles appearing again which were gone last week. But, it wasn't a bad week just yet. More just a normal, average week. Ontop of this, since yesterday he has symptoms of a cold. Which could be the reason for the bad week.
So what to say? Does the medication work? I don't know. Yet. So at that moment, the doctor asked what I wanted to do, because it's coming towards the end of the year and things are slowing down to a standstill in our country. You're lucky if you could get anything done in December here!! I had a very normal, though little strange for me, moment where I just couldn't go forth with it. I backtracked. At that moment, I just couldn't face putting Monkeyman through a biopsy, looking for a diagnosis I really, really, do NOT want for him. Who wants their child to have an incurable, progressive illness?? And really... do I think he has a mitochondrial disease? Really, really believe it? No. I'm far from convinced. So I said we needed more time. But after putting the phone down, I realised that waiting would mean that we would only start the process in January, which would mean we'll take him off all of his medications just as he starts grade 1. It seemed a bit stupid. It felt unfair towards Monkeyman. All because of my moment of fear and doubt.
So I phoned the doctor back the next day, and she said she spoke to the mitochondrial specialist about the order things need to happen in. First, there's a blood test they want to do. For this, he have to be off the medications for 2 weeks at least. So we've stopped the meds on Friday, and in little less than 3 weeks from now, we'll test. If it's negative, the cardiologist said we'll go forth with the muscle biopsy. Probably in January then, I guess. If it's positive... well, I didn't ask her that part. Oops. I guess I don't want to entertain that thought just yet.
While I'm updating.... It's going so well with the exams!! I don't have many marks of the kids just yet, but from what they said after each exam, I really believe their hard work (and mine!) has paid off this exam. I taught them a technique which seems to have helped memorising the massive amounts of work they have. Even after summarising, it's still pages and pages and pages of facts and information.
I'm so relieved that it's going so well. We're on the last few days and subjects. Just one more for Boeboe, and 2 more for Mr N. Then they're (hopefully!) done with school for the year!! Done with this school, and done with primary school for Mr N!! Can't believe my baby is now (almost) a highschool teenager. Where has time gone by?
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