Still here

Yep, we are still at the hospital. The 48 hour EEG has now turned into a 72 hour EEG since we have not seen anything even close to the episodes we have been seeing at home. Now, we won't go home until Sunday. I think she wanted to keep us longer, but Hayden has an appointment with his physiatrist in Minnesota on Monday. His tone keeps increasing, so it's important that we get there. His legs are getting very hard to straighten out and it seems that his hips may be contributing to his increased tone. There are days when we can't even get his legs to touch the seat of the wheelchair let alone the foot rests on his wheelchair. I am not looking forward to this visit. We have a lot of things to pack into this summer. I am hoping that nothing prevents us from doing the things we are hoping to get done.

The hospital doesn't have Nutren Jr, so he's been on Vital Jr since we've been here. The crazy thing is that he hasn't had any hiccups at all since we've been here and the most surprising thing of all is that his eczema has almost entirely cleared up. It's never been really bad and only noticeable if you are taking care of him every day. Now, I am really thinking that I am not crazy about him possibly being sensitive to a milk protein, likely casein. Since he hasn't had any of his episodes since we've been here, it is quite possible that at least a couple of his movements are triggered by reflux. He hasn't refluxed into his nose either so the coughing and sneezing has almost entirely disappeared, too. We are pretty certain that his reflux causes him to gag himself since he stops when I remove some of the food from his tummy. He has gagged himself several times each day, so it appears that he is still refluxing. It sounds like a trip to an allergist and possibly a change in food is in order.

This is an image of a normal EEG:

This is Hayden's EEG...YIKES!

As much as we never want him to have another seizure, we know that that is a very unrealistic possibility. However, if he is going to have one any time soon, it would be great if we could actually capture it so we know what we are dealing with. Besides, my back would really like to sleep in a bed instead of this chair that pulls out. Hayden is just being Hayden...making everything just a little more challenging than it needs to be. He is great at keeping us on our toes!