Whoops!

Alright, a little bit of time has passed.  I have never been very good at journal writing - well, consistent writing.

We met with the pediatric neurologist.  He wanted an MRI done as he knew it was neurological and just wanted to see the activity in his brain.  Skip forward to July 2014.  MRI scan is completed.  This was an extremely difficult time for me.  They took Mikai in, got him to sit on the table, and they brought me through this experience.  The worker's at the hospital were absolutely wonderful!  They played a game with Mikai in trying to "blow up the balloon".  You see, he was getting put under for his MRI and they needed to put a mask over his face in order to administer the anesthesia.  He was having fun and enjoying myself until they put the mask over his mouth and had me hold his arms away.  He struggled to get free and pry the mask off and started crying.  He wouldn't inhale and gave me the look of "why are you doing this to me!!".  The anesthesiologist was reassuring me, telling me not to worry as he won't remember much after this point.  Sure enough, Mikai inhaled and went limp.  It was like he was sleeping.  I promptly left, huge crocodile tears in my eyes to my husband and second son.  My husband took one look at me and said "I thought maybe it was I  that should have volunteered".  Seriously, amazing guy this man is.  After the MRI we took Mikai for a treat for being so good.  He bought Baymax and Hero action figures.

Fast forward three months - we received the results of Mikai's MRI.  The doctor sat us down and explained that they know the cause of the drooling, choking, and lack of speech.  They told us that it was highly unexpected and they were quite surprised.  They told us Mikai has a brain disorder called bilateral perisylvian polymicrogyria.  What this means is that on both sides of his brain, 3 out of 4 lobes are affected by areas of many small gyri.  The condition is apparantly quite rare and they aren't really sure what his life is going to look like, but they are hopeful because Mikai is so far advanced for having this condition.  We drive home, silent, for about 2 and a half hours.  It takes me until that night to become so over struck with fear that I feel like I can't breathe.  We were told not to google PMG so of course we do and the news is pretty grim.  The more I read about it, the more I want to stop.  So I do.  After about a month, we pick the pieces of our lives back up and learn to be thankful for what we know, thankful for how functional Mikai trully is, and blessed to be able to communicate with Mikai although it's restricted.

It has almost been a year since his diagnosis.  Our government has been extremely supportive financially of our situation,  Mikai has received his AAC (his communication device) and using it regularly at school.  Mikai's teachers have been so flexible and encouraging and it has been great to see him grow with them over this past year.  We are hopeful and blessed beyond compare.