Colin and his gang.

We had a successful field trip to Carnes Arena with the 5th grade!  Of course, it took us longer than we predicted to get out of here but it was just as well because we had plenty of time to watch his classmates and FREEZE while we waited for Colin's turn on the ice.

I had never been to Carnes before but it's a really cool (pun intended) place.  The kids were all on the rink and skating away when we arrived.  I imagine it was chaos when they were all getting their skates on so I'm glad we avoided that part.

It was fun to watch the kids on the ice.  Some of the kids were evidently very comfortable skating and some were new at it and it was fun to see their antics.   Aunt Chris came to watch, too.

We went into the warm up room and readied ourselves for Colin's ice time.  At about 11:15 we made our way to the smaller rink and got Colin from his kart into the sled and settled onto the beanbag with his pillows and blankets.  Priscilla even brought a hot water bottle which she put under his legs and near his feet.  AHHHH!  A bunch of kids came to the rink to skate as well.  Initially, there were to be only a handful of kids but it ended up being a couple of handfuls :)   Mr Phillips and Mrs. TC were there as well.

So, Colin was very nervous, at first, but he bravely let us slide him onto the ice and Mrs. TC took off with him!  Nurse Lauren is a skater so she was out there on the ice watching over him and taking some pictures and video.  He went around a couple of times and said he was done, but we convinced him to go around a couple of more times.  Very proud of Colin for trying something new and something he was so unsure of!  He is a trooper!

Colin was supposed to be home by 2:00 to meet with Christina the PT from school to try out some different Hoyer slings but since it was still early Aunt Chris asked us to go out to Friendly's for lunch.  Sounded good to me!  We asked Priscilla, too.

Went to the Friendly's on Dorset Street.  Colin liked it!  He even said it was his favorite part of the day--weird kid.  I think he liked that Lauren kept him entertained with games and YouTube videos on her phone while we had our lunch and dessert. 

Made it home a little after 2:00...the weather started getting yucky--kind of icy/rainy.  Christina had a sling that was another kid's that we really liked.  She took the green one that we don't like (the one that is hard to get underneath Colin because of the stiffness and weird stays that it has.  If it works for the other child, we'll get to keep this one instead of the school having to order a new one.  Yay!

Casey stayed at home with Gene and Aunt Julia.  Mel came for a couple of hours and they did some school work and he was cooperative.

Skating away!

Mrs. TC and Collie

Me, Priscilla, Aunt Chris and Collie,

Another Angel

We lost another little one last night.  Chloe.  Beautiful and sweet little girl.  She was about 5-years-old and trached and vented like Casey. 

 I'm always saddened to hear of another angel passing but I don't always write about it here.  Many times we find out about a new angel from MJ and Brenda and Blankets 4 SMA.  They are usually the first to find out about newly diagnosed kids and thus usually the first to hear about new Heavenly angels.

I don't want this to become too sad of a blog.  Sometimes I get extra attached to a child and I was attached to Chloe.  I loved looking at her pictures--she was just so beautiful and sassy and her eyes sparkled!

So, instead of running out today and doing last minute shopping, I'll be staying here to be close to my Collie and 5-driving-minutes away from my Casey.  Sorry, Gene, you won't be getting the pack of underwear I was going to get today.  Sorry Aunt Chris, your stocking may be a little light this year.  I think you'll understand.

More treats made and Haddie plays Poptropica

Tiny bit of snow on the ground and flurries this morning.  BRRR cold, too.

After catching up on laundry and that kind of stuff, it was time to make my next endeavor of Peppermint Bark Rice Krispies.  Yes, you read it right.  I did it all in the microwave and it was easy, except for the drizzling part.  I am more of a clumper than a drizzler.


Boys finally stirred around 10:15!!  Casey was up before Colin.  Poor Colin must be going through a growth spurt or something but he's been falling asleep earlier than Casey (which is not heard of) and sleeping later.  They watched some Christmas videos including A Rolie Polie Christmas in memory of Lily. 

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.