Casey's English 'report card'

So proud of my boy.  And, so glad to have a teacher that is committed to understanding our boy and wanting him to progress in his learning and communication. 

Casey

Well, I guess Nurse Julie, Mel (aide at school) and Casey were looking at this blog and thought that there were too many posts about Colin--well, how about not enough posts about Casey!

Casey has been working hard at his communication.  He's had his DynaVox for years.  (Actually, he's on his second one!)  He has most used phrases that we've put on for him.  We're truly not sure of what he can read and spell so it's tough trying to figure out the best way to help him communicate effectively. 

This year Mel has been working on getting him to put single words together to make a sentence.  No, it's not grammatically correct but it can make what he's trying to say more definitive.  The first time he put two words together it was pretty amazing. 

Tonight Casey is at a home basketball  game at the high school.  He went with Dada and Nurse Brooke.  I guess he really wanted me to go because he said, "mom-basket ball-game."  When  I explained to him he'd have more fun with Dada because he knows more about the game, he said, "my heart is in the gutter"  (That's a one-button phrase that we put on there).  I think he amazes himself sometimes about how he can say things and we respond.  He finally is 'getting' communication. 

On a different note, Casey is in 9th grade and many of his classrooms are upstairs.  When he was upstairs s at the elementary school they had an evacuation sled that they used for drills (never had to use it for real!)  But the way the stairs are at the high school the sled can't make it around the turns.  So, he's using the 'real' evacuation chair.  I really didn't think it would work for him but I guess it does!  Julie sent me these pictures from a practice they had. 

Isn't he so handsome!

I think he looks pretty good in the chair!

Hanging out in the evac chair.

So there are some Casey stories!

SMC party, no tree

Well, today was kind of a sad day.  Casey did not want to go to the annual St. Michael's holiday party.  I guess now that he's 14, almost 15, he doesn't think he needs to go see Santa anymore.  Colin is still kind of into it at 10, so Gene and Colin headed out while I stayed here with Casey and Aunt Ju.

I was in a crappy mood anyway since I started with a dang cold sore and I was tired from being nurse for the boys last night.  Colin slept pretty well.  I guess he was tired out from being so naughty at school all week.  He even fell asleep before Casey and I can't even remember the last time that happened!  I had Star 92.9 Christmas music on for Casey so that may be why he stayed up.  But, his vent was acting weird, which was bugging both of us.  I had hearing it, click, click, way too fast.  I tried checking all the connections, checking his trach ties, moving his head/chin, giving him big breaths, but nothing seemed to work.  He finally got intto a nice, slow, even pattern after 3:30 or so.

Somewhere around that time, Gene was awake as well.  I said that I was hungy and asked him to bring me a bowl of cereal.  He did.  :)

Around 7:30 AM or so I headed up to bed for a while.  We all slept in until 10:00!

Sausage frittata a'la Gene this morning.  Then it was getting the boys ready for the day.  Colin got a shower and got duded up in handsome clothes (sweater and pants used to be Casey's!).  Sent Gene and Colin off to the party.   AC came and kept Casey happy.  Julia and I did some catching up around here:  laundry, beds, formula, supplies put away, living room pick up, etc. 

Apparently, Colin was not too into the party.  He closed his eyes for just about everything.  He liked his face painting.  And, he did keep his eyes open for pictures by the tree.  He didn't even want to see Santa!  He kept saying, "Mama, Aunt Ju."  I guess he thought something more fun was going on at home!   He wasn't mad or grumpy, just quiet.  Gene said he almost ran off the road because he couldn't hear Colin at all.  When Casey rides--everyone knows that he's there!

Gene took a ride this evening through Milton but didn't get a tree.  Sigh.  So today was a weird day for me.  Cold sore, no St. Mike's party and no putting up the tree after the party.  Bummer.

Colin and his festive tree.

The St. Mike's Tree

Dada and kid.  A woman volunteered to take some pics and after this one the camera died.

Colin tales

Colin has been quite a handful lately, especially at school :)  This is his behavior chart for today.  At least he got 2 runs in the afternoon and NO outs!

 

Last night Gene suctioned Colin's mouth and said he got some yucky yellow. I asked Colin if he was too sick for TV school tomorrow (he's NOT sick at all!) and he said "uh huh, uh huh, uh huh!" I said, "Well, then you'll have to go to the doctor (that didn't phase him since he doesn't mind) and you'll have to take lots of medicine." That got a "NO! NO!" He hates taking medicine...and yes, it would be through his g-tube so I have no clue why. Then, I said, "You'll just have to stay in bed and not watch any movies or play any wii so you can get better." He didn't like that too much and when I asked him again he said he was fine and he'd be okay going to TV school tomorrow!

Colin, Lauren and I have pulled out the Christmas board games.  How many kids do you know that have 3 Christmas board games????????   The other day we played Charlie Brown Christmas (I WON and I got to light up the Charlie Brown tree!)  Yesterday, Colin, Lauren and Aunt Chris played The Polar Exrpress.  Colin won that one.  He was being very funny/odd and kept saying that he saw something scary over by his bed.  I tried to convince him that only nice ghosts, like Casper, come to nice boys' houses.  Or that maybe he saw an elf that was spying on him to see if he was naughty or nice????  Don't think I convinced him.  He watches too many scary shows!

Here are a couple of random pics. 

Just my handsome dude engrossed in a movie.

Playing a vintage Scooby Doo game with Nurse Lauren.

He wants to WIN!

Helping Nurse Lauren play a game on his DynaVox.

It's the little things that count?

That's what they say, right?  It's the little things that count?  Well, I was going to tell you about my 'little thing' that I did yesterday.  After several years of putting it off, I decided that it was the day to consolidate and update my address book.  You know, the ones that are like a loose leaf notebook and you write in??  Does anyone but me even have those anymore??  I set the timer on my stove for 15 minutes (are you familiar with flylady.net?).  I went to work.  I made my way from A through E before the timer went off.  There.  I was pleased with myself.   It's the little things, right?

This morning I woke up and checked out Facebook to discover that one of my favorite little boys with SMA became an angel yesterday.  It's the little things?  I think not. Ironically, Aiden was nick-named Biggie.  Sure, maybe he was big for his age, but he had a big smile and a big personality as well.  He's gone.  That's not a little thing; that's a big thing.  It's the big things that count. 

You will be forever remembered, Biggie.