Today we went to Middletown to get hooked up. It was easy but Byron did not enjoy it much.
Now that we are home, Byron needs to do all his activities in front of a video camera that travels in a suitcase. So not only does he have his little power purse with him at all times, he is constantly on video. We are also to keep a written log with times of all activities. If he does have a seizure while he is being monitored, there is a button to push on the little purse. This is exactly like the hospital protocol but again, so much easier to do at home.
Tomorrow afternoon we return to have it all removed. Then in a week we get the results. If the neurologist sees a lot of activity she may choose to put him on medication.
He's a brave and tolerant boy.
This comment has been removed by the author.
ReplyDeleteReading this made me really appreciate how much less stressful home monitoring can be. The image of him carrying both a power purse and a camera suitcase feels oddly relatable and heavy. It also made me finally look up what does ambulatory mean in a medical context.
ReplyDelete