Nathan Update #6

Video EEG

(electroencephalogram)

(or what you brain waves are doing)

I figured out a very round about way to put some pictures on the blog! I'm taking pics with my phone, emailing them to myself, saving them from email onto the computer, then putting them on the blog. Lots of steps, but it works! These are from a couple of days ago - Nathan is electrode free at the moment. Well his head is anyway! His chest is hooked up to a little portable battery powered cardiac telemetry unit. I have no idea how to spell that either. Lets just say its a little box with electrodes and wires that keep track of what his heart is doing 24/7.

In these photos N all hooked up to the EEG. This is EEG #4, and no, he still does not like them! This is our first one in the hospital and also the first video EEG. In the picture below you can see his brain wave patterns as well as the picture-in-picture video. This way the docs can see what he looks like when his brain waves are doing various things. At this point he was still having many clusters of seizures a day. A cluster would be anywhere from a few to up to 30+ seizures, one after another.

Today N isn't having the big frequent clusters of seizures. He is not seizure free, but they are less frequent and less intense. This has happened before when he has started a new medication. At first it seems to make a drastic difference, then the seizures come back and settle into their regular pattern (of no clear pattern, except many intense clusters a day). I am hopeful, but not assuming that they are gone for good yet.

I think he is feeling better today. He is still "talky", but it sounds less fussy. He may just be more alert after getting off some of his meds and now realizing that he doesn't feel so good. ??? I don't really know. He does seem to want me to hold him a lot more, whereas before he was so lethargic that he didn't seem to care. It's nice to have him more alert!

He did a little better with eating today, although still not as much as he needs to. They are going to change his formula so that he still gets enough calories even though he's not eating as much. You wouldn't think this would be a concern from just looking at him - he's still chubby and hasn't lost all the steroid puffiness yet, but he has lost a little bit of weight. So just so that he doesn't lose too much, they're increasing his caloric intake. That makes me feel better. :)

Thank you for praying for Nathan and for us! That's exactly what we all need. Thank you, thank you, thank you. :)