Well we are off to another weekend at Children's Hospital for another 24 hour EEG (Video). We just had one in June but they wanted another one before we start ACTH. I guess, from my understanding, that depending on what they see on the VEEG, will determine if Daniel will start ACTH on Tuesday or Wednesday of next week.
Wouldn't it be positively wonderful if they saw no seizure activity, no hyps, and calm background activity?!
I hate doing these VEEG's. Besides the fact that Daniel is tethered (basically with all the wires) to this little area in the room, and he always has to be facing the video camera for 24 hours straight.......they also have a monitor so that you can see all the brain activity. Every time we go to these tests I end up just staring at the monitor to try to figure out what is wrong looking and what is right. Its bizarre to watch when he laughs what it does in the brain, or when he cries, or sleeping. You would think with as many as we have had that I would be able to master these spikes and dips and know what they all mean!
Well, we will keep you posted about what is going on with the ACTH treatments. Cross your fingers.
On a good note, this week, Daniel got the iGallop. Now I'm sure people are thinking "WHY does Daniel need the iGallop?" Well, I will tell you WHY! The iGallop mimics a horse trotting, and a horse trotting is like hippotherapy and since Daniel can't go to hippotherapy because of scheduling conflicts, travel time and age...we got him the next best thing. It wasn't designed for special needs children but I will tell you that among the special needs groups that I belong to, this is the big rave right now! Here is how hippotherapy helps children with Cerebral Palsy (CP). And if that isn't enough of a reason for Daniel to have it, he also loves to ride on it. He is almost ready to do some stunts on it! He tries to get me to lay him on his tummy on here too. He thinks that is a hoot! We will have to post a couple pictures of him next week.......for now we're off to the hospital. Yipee............NOT!