Update on Joshua

Hi! Sorry for the spotty updates. We've been on the road for almost three weeks now, and won't get our new home for over a week from now.

Just before we moved, Josh was diagnosed with a "seizure disorder". He had an EEG and there were some observed spikes. The whole experience was awful, as the techs ignored his CI site (I even made them feel it in the beginning!) and roughed up the site quite a bit. Then wondered why he didn't get a reading on the electrode in that area. DUH! The electrodes were just put on with the goopy stuff, no damage to the kiddo. Other than he screamed, sweated like a pig, the electrodes kept falling off, and it took them 1.5 hours to get hooked up for the test. Half way through they had to wash his head and start over, putting him on a body board and fully velcro wrapping him in. But they did find some possible seizure activity.

I didn't see the doc except for a few seconds when they pulled him in at the end, still confused as to why they couldn't get a good reading on one electrode. THEY NEVER LISTENED TO ME! The doctor barely spoke with me for a few seconds and that was it, he was gone. Then when the results came in I was only able to speak with the referring doc, who didn't fully understand the results, either. He is very experienced with special needs kids, that's what he specializes in. So he talked to me for a while about what he knows about seizures, medications, etc.

After almost three weeks of constant time with Josh, I'm fully convinced he does have some type of seizure disorder. I've had time to reflect on the past, too, and I'm pretty sure he's had this since birth. We just didn't understand the signs, were more focused on his hearing loss and inner ear malformations, thinking those are what caused his imbalance. I've finally gathered up the courage to do some research online, and feel much better after reading stories, "blogs", online journals of other parents who have gone through similar things. We are working hard to get us enrolled in the new insurance region, and will put the pedal to the metal to get Josh reevaluated by a doctor I feel more comfortable with, and then probably start him on medication.

I type this journal online to not only to get my story down for us, but to share with others. I can't tell you how comforting it was to read other stories of families going through similar things. The main purpose of this blog is to document the boys' CI stories, but it now emphasizes even more how very different the journey is for each child.

My heart is breaking right now for Josh. He's having a "fit" of sorts right now that I can't seem to snap him out of. When he gets tired, and he's tired now because he had some shake of sorts that woke him up early, but when he gets tired it's like his brain can't focus too well. I don't know if it's getting worse or if we're just seeing i more because we've been with him so closely lately.

His CI experience has actually been the blessing in our days. H is really understanding more, and is expressing better what he wants and feels. Kind of cool! :)

Well, I'll try to type more later. I'm a bit tired now, and the day has only begun...