Scary time, hair cuts and Disney Infinity

I'll preface this by saying Casey is okay :)

Nurse Julie and I took the boys to the U Mall today for hair cuts and to pick up the Disney Infinity wii we had on reserve that finally came out.  We had a good time tooling around.  Casey drove his power chair some.  I love letting him go way ahead of us and watch him go.  Today he was interested in the nail salon :)

The hair place was busy so we shopped some more.  Colin was very excited to get the Infinity wii that we've been hearing about for months!  I gotta give the guys in GameStop some kudos.  Every single time we've been in there they have been so cheerful, helpful and knowledgeable.  I mean, these guys are true geeky gamers and I don't think there's a game they've never played! 

Hit McDonald's in the food court for a 'snack' and a sundae.  A woman came over to us and asked us if the boys had SMA...wild, huh?  Turns out it is our little buddy Asher's paternal grandma.  We've met his maternal grandma Patti.  She was very nice and we chatted for a bit.  We also chatted with Mel (Casey's old para) for a while as she was there shopping with her Collin. 

Finally it was time to hit the hair cutting place.  Colin went first.  It went okay although she had a hard time using the clippers because of the handles of his chair.  Colin was, "Ahhhh"ing as he loves to get his hair cut so he kept us entertained.  Then it was Casey's turn.  He was in his power chair and the head rest doesn't come off it it easily like his manual chair so I was holding his head and moving it where the stylist needed me to.  I got kind of tired after a while so I asked Julie to switch places with me (she was hanging with Colin),  She took his head out of my hands and said something like "he doesn't look right."  And, OMG, he was dusky, and the most awful color.  After that things got kind of crazy.  Of course we had the cough assist in the van--almost brought it in but decided not to.  MISTAKE!  He was still conscious and would blink but couldn't make noise.  NOT good.  We got the ambu bag out (it give him direct, big breaths via his trach) and suctioned his mouth.  Got some out.  Suctioned his trach. Not much.  Still not making noise.  Julie did what she has always said she'd do if she had to--She BREATHED BIG BREATHS RIGHT INTO HIS TRACH!   And, he started making noises!  That's when we knew he'd be okay.  Somewhere in there 2 stylist and 1 customer were there not knowing what to do.  One of them asked if we should call 911 and I finally said yes.  For some reason she went out in the mall to summon someone???  I ended up talking with someone on the phone and said we were okay.

The stylist and customer were so kind but pretty shattered.  I told the customer (an older woman) that I hoped her hair cut would be straight because the stylist's hands were shaking so badly!  She laughed and said she was just getting foils and that her coloring would probably be the best at the wedding she was going to!  I took the opportunity to spread SMA awareness  and gave the 3 people our cards with SMA info on them and I had two cards left from The Getty Owl Foundation that I gave them, too.

Casey looked very pale for quite a while.  I'm hoping some of it was the lighting.

But, those of you reading this that have SMA kids that have had such an episode you'll know how quickly our kids recover and act like nothing happened.  Thank goodness they are so resilient and forgiving!

Although, Casey did have some things to say on his DynaVox on the way home and after we got home.  He was talking about police man, hospital, etc.  (although this isn't totally unusual for him)  Later on he said, "because I was sad.  I couldn't breath."  (breathe).  My poor heart was so sad hearing this.  BUT I'm glad he's able to express this much because I know some kids can't. 

He is fully recovered now.  Had a shower and has a fresh trach :)   We were kidding him saying that Julie blew chunks of her McCafe and the caffeine revived him, ha ha.

Me, I needed a nap after that.  Phew!

On a lighter note...the boys and I started the new Disney Infinity wii game.  I'm really kind of not sure if I'll like it.  I wasn't even sure what to do.  I was hoping it would be a simple game and they'd guide you like Skylanders does.  I like having objectives and I think this game might be more of a free play but we'll see.  The boys were entertained while I tried to learn how to build, drive and combat.

Time for bed soon.  Tomorrow is a quiet day.  Casey has his art therapy and that's it.

Sorry no pictures!