Crazy Day of Appointments...

The Tuesday after the long weekend was a busy one for Ethan and I.  We left the house at 8:30 am to have his existing stroller tray adjusted, then off to get his new set of wheels.  Since it was his first time getting them, everything had to be adjusted and the appointment took almost 3 hours.  After a quick stop at Clayton's work (near the hospital) to drop off a custom seat, we went to his neurosurgery appointment. 
The results of the MRI were in...the good news is that the Dandy-Walker cyst is now fully communicating.  When he required the emergency surgery the cyst had split into several chambers which is likely why there was such a build up of fluid.  Those chambers are all gone now (the surgery was a success).  During the surgery the surgeon had opened everything to flow towards the shunt.  The MRI also showed that Ethan's ventricles and shunt are doing well.  :)  Now for the other cyst - which the surgeon and I have dubbed 'Cysty' because it is not part of the Dandy-Walker nor is there any other condition name that it fits under.  So Cysty was larger in this MRI than it was in April (post surgery) but smaller than it was when it was first detected about a year ago?!  I was told it could be that the size of the cyst changes, but we would not know if it is a daily thing or an over time kind of thing, but obviously it has changed.  At this point we are going to wait and do imaging again in 6 months time.  The surgeon said it is MAJOR surgery to try and remove a cyst in front of the brain stem with several risks...so the best course is if we do not have to do anything.

Then off we went to get Lorelei from her before/after school summer program.  I unloaded Ethan from the car into his new wheels and pulled the canopy over his head to protect him from the rain (not a lot of him was exposed).  On our way in to get Lorelei some little kid yells to another boy in the play yard (keep in mind these children are 6 years old or younger), "Hey Ethan, look at this weird looking baby!"  I could not believe my ears.  This from someone so young.  I had no idea how to respond.  I was shocked!  I've noticed such negative behaviour from adults and kind of expect it from older kids but never from one so young.  I don't think I'm ready to deal with that just yet.  I heard the teacher say she was going to go deal with it as I was entering the school.  In case he heard and understood, I leaned down to Ethan and told him I had no idea what the kid was talking about, he's no weirder looking than any other kid.

By the time we got out, the teacher said she did not know if I'd heard what was said (I told her I did and asked, "How does one respond to that?") but she wanted the little boy to apologize.  She said she'd told him that, "Maybe he was born like that.  Maybe his legs don't work very well.  You might have hurt his or his mommy's feelings."  I'm not sure if he told her it was that Ethan wasn't walking that he found weird or if she was just guessing at what might have prompted his comment.  For all I know he could have thought that Ethan was the biggest baby he'd ever seen in a stroller.  She told him how Ethan is Lorelei's little brother.  He seemed bothered by what he'd done but did not out right apologize.  She again suggested he ask questions as I would likely answer them...and I said to him, "How about you just say HI Ethan, I think that would be nice."  With that obligation met, he was there a little for me to say that Ethan spends a lot of time in hospital but is otherwise like most kids and went off to play.  The rest of the play yard had all gathered around the chain link fence and all were saying hi (and eventually bye) to Ethan some in anticipation of him responding.  I told them that he doesn't speak, but that his smiles said he was happy to see them.  They seemed very curious about him.  This is more the behaviour I have come to expect from children.  The innocent questions, curiosity and genuine interest in talking to him (sometimes touching as well).  I figure it was a learned behaviour that made the boy make the comment to begin with...he is the only child in the class I noticed with glasses and one of only about a handful who is not Caucasian.  I hope it wasn't anything said to him as I'm sure it hurts, but maybe something he'd heard said of others.  That still sucks but maybe now he can teach them compassion too...