Blurred Lines

We once referred to our Seattle specialist as the Justin Beiber of neurologists.  It turns out he was more like Miley Cyrus, twerkin' on errbody while they tryin' to sing they song.

We went.  We saw.  We were conquered.  It turns out that it does not actually rain very often in Seattle.  Those are just the tears of all the crying angels.  Or maybe its the tears of puppies.  Either way, its a pretty terrible place.

We went to see the doctor that was supposed to be the best.  Well, maybe he would have been better if he had had a cup of coffee.  He spent half our appointment yawning and the other half telling us all the things our son would never do.  Things like walking, talking, thinking, or eating.  The only good news he gave us was that while Dominic would almost surely have seizures, he may be a good candidate for having the his brain cut in half to stop the seizures.  Well, that's just swell.  Thanks, but I think we will hold out for the medical marijuana treatment of seizures.  This is actually something that is making huge leaps in other states.  They decrease the hallucinogens and increase the cannabis.  It is actually proving very effective for in-retractable seizures, which is typically what comes with our type of PMG.  He did say that because of Dom's area of damage, there was a possibility that puberty could stop the inevitable seizures.  I think we will hold off for that option, Doc.

It was a terrible appointment where we felt that he largely ignored Dominic's current abilities and just gave us the standard textbook terror.  Thanks, Doc, but I won't scare that easily.  He also talked about Dominic's life expectancy.  This is something we never speak of.  We are aware of the realities, but we don't speak of them.  At this point, we have been fortunate to have no real medical problems that can be associated with PMG.  We did get some good recommendations for specialists that we will need to see that could ultimately be crucial to Dominic's treatment if he develops medical problems.

We also got our results back from the CDC to confirm that Dominic's PMG was caused by cytomegalovirus (CMV) while I was pregnant.  If you are not aware of the risks of CMV, you should educate yourself.  CMV is a common virus that 80% of people get.  It is especially common in children under 3.  Once you have it, it never leaves your system (much like chicken pox), so you develop immunity to further infection(typically).  It is a very mild virus.  Except if you are pregnant.  I never even knew that I had it.  There were no symptoms.

Overall, it was a waste of a trip, but we did get our new diagnosis, which is what this guy is really good at.  We went from unilateral PMG (one-sided, almost best case scenario) to bilateral, asymmetrical diffuse PMG including the perisylvian region (aka everywhere, worst case scenario).  The perisylvian region controls the ability to eat and speak, so that was a huge blow to us.  Although, his right perisylvian region is only half damaged.  Based on the fact that he doesn't drool, it appears that his right side may be taking over, so we have hope that he will eventually speak and eat solid foods.  We had always known that Dominic was doing really well for having unilateral PMG; considering he has diffuse PMG, he's clearly not messing around.    

We don't give up that easily and neither does Dominic.  Plus, I don't plan on telling him any of the things he won't do.  I think I'll let him figure that out for himself.