Colin gets a day off; rest is good!

Colin gets a day off from school today. His para and his backup para are both out sick! It will be good to give him a day to sleep in and have a mellow day. Casey is off to do some errands in the community!

Colin had a good day.  Much less stuffy. 

Casey didn't do too well on his outing.  He refused to drive his chair.  He didn't get to do anything fun like look at magazines or pick me out a 'prize'.  Oh, dear. 

 

Colin has the 'suds'

From my Facebook status...I want to add this here so I remember when he was sick and how he handled it.  

"It's official. I'm declaring that Colin has the 'suds.' (Amy and other Sponge Bob watchers can relate :) ). So far it's all in his head. He has a headache, lots of oral secretions and stuffy nose. Thankfully, it is NOT in his lungs and we'd like to keep it that way :) Casey will not be going to see Les Mis tomorrow with school. He's going to go out in the community and bring his DynaVox to UPS, shop for shoes and shop in Hannaford's. He'll work on driving his chair in the community and work on some math skills. No need for a power struggle."

Casey turns 16 and Colin 'skates'

I cannot believe that we have a 16-year-old child.  That the said child has SMA and has thrived is even more unbelievable.

Casey had to go to school because he didn't finish his mid-term exams.  Send him off with little fanfare but he was in a good mood.

Colin had his first class like normal, and then we had to rush to get him ready to go skating.  I had him in his long johns, a warm shirt and lined pants and he had on his DAFOs and socks, but I forgot his "Puss in Boots" booties, oh dear.

Since we had no nurse for Colin, Gene came with us skating.  Priscilla drove with us to Cairnes Arena.  We made it there after all the kids had already donned their skates and were out on the ice.  We watched the kids for a while and then headed down to the smaller rink.   Man it was cold in there!

We got Colin settled on the sled and he was much less anxious than last year.  He was all comfy and snuggled.  Priscilla brought her thermos of hot water and her water bottle so Colin had some warm toes :)

He really enjoyed himself this year.  Last year he was ready to get off the ice after a couple of circles but this year he went round and round and round.  He had lots of pullers.  Mrs. TC, Mrs. Smith, Mr. Dabritz, and some of the kids.  We were a little worried since neither Gene nor I skate so no one was on the ice with him, but they assured us they would listen for any beeps and they watched him like a hawk.  He did great!

Priscilla warmed up his chair with the hot water bottle before we put him back in.  We headed into the warm up room to hang out.  Colin got to use some of the questions Priscilla had programmed into the DynaVox and had a conversation with Mrs. Damon.  We headed out not to long after that.

Went to iParty so we could get Casey's football balloons filled.

Came home and Casey was there.  (he got his exams done--yay!).  Colin gave the balloons to him as a gift.

Julia and I worked on Casey's cake.  I baked and she decorated.  I did two yellow mixes in the bottom rectangle and one chocolate one in the oval one.  I think it came out pretty good but Julia wasn't satisfied.  What do you think?

So, then it was time for celebration!   We got the boys up in their chairs and we started in on some gifts and cards.

I think he was a little overwhelmed but enjoyed himself.  He got some handsome dude shirts, DVDs, cash, gift cards and lots of goodies.

And then it was time for some excitement.  Gene popped the popper!

Time for candles!

Julie is the official cake cutter.

 

 More cards, more gifts.  Listened to some of his new music and then the day had to end.  It was certainly a big day for all of us!

1st Day with VGo (Wall-e)

Today the VGo was at school and Priscilla had to drive it from our house.  Emily (Spec. Ed) was there to help in the beginning.  There will definitely be a learning curve for all of us on figuring out how to manipulate it and how to maneuver through the classrooms and hallways.  And, there are some areas where the wifi drops so we have to figure that out.   The kids and teachers and all the school personnel will have to get used to having the VGo roam around the halls!

I had put Colin's new tee shirt on it the other day, "Keep Calm and Kill Zombies."  Priscilla ended up putting a little bit of velco on the shirt and the unit so it would stay on.  I'm not sure if it's an appropriate saying for school, but oh well :)

Talked with the van people a couple of times today.  Kind of a bummer that the salesman isn't going to be there Sat-Monday.  So, if Gene wants to get it sooner than later he's going to have to go on Thursday.  Still have some things we ne:ed to get done before he heads out so we'll see.

I'm giving a shout out to our friend, MJ Purk as it's her 25th birthday today!  MJ has SMA--She's not a typical type 1 nor a type 2--sometimes she calls herself a super type 1.  Anyway, she is amazing!  Unfortunately she is spending her birthday in the hospital but I'm sure she's making it a good one anyway.

Casey story to share:

He was hanging out with his ipad watching football and had his DynaVox hooked up.  He said,

"Queen Latifah sing football game Dallas Cowboys could you please, mom?" Does he seriously think I'm going to find a football game (on YouTube) where Queen Latifah sings at a Dallas Cowboys game????????????    First of all, it's an excellent sentence.  Second of all, he must have remembered seeing it before and something prompted him to want to see/hear it again.  Pretty amazing, huh?!   Then, another funny thing is that I posted this on Facebook and two of my friends found a video of Queen Latifah singing the National Anthem at a Giants/Cowboys game and posted the YouTube links!  So, I got to show him the video and he was satisfied.  After a while he was onto something else ;-)

Here's a pic of him using his adapted MP3 player that Santa got him from RJ Cooper.  He loves it! 
He can change the songs with his switch!

Deposit put on the van!/VGo in action!

It's official!  Gene put a deposit on the van we've been looking at (via photos only).  I really, really feel like this is the one for us.  It's going to take some getting used to but I know it will fit our needs.  It's a 2009 Ford E-350 XL with a rear lift and tie down spots for 3 chairs!  It has fold down seats and benches, so we put them up and down as needed.  One of my concerns is where we'll put everything...we're used to having room behind the bench seat in our current van and we won't have that now.  And, we'll have to get a TV and some lights to make it homey for the boys.  We are all so excited we want it now!  Can't wait to take our first drive with the boys!  It will be so cool to be able to take both boys in the van so easily--AND Casey will be able to take his power chair--FINALLY!

Here it is:

This morning Priscilla and Colin practiced driving the VGo around the house.  Tomorrow will be the day it goes to school.  They had fun practicing and driving and exploring the things they can do with it.  Highlight of their exploration:   They drove Wall-e into the living room and freaked out Gene!  It was so quiet (and they had the VGo side muted) that he didn't know it was coming!  I was upstairs and heard him yell out, lol!  Colin was thrilled!!

At the end of the day Priscilla told Colin she had to bring him to school and Colin cried--the fake kind of cry--but he went on and on.  I think he thought that the robot was going to be staying here!