We did it!  Both boys were ready for their first day of school on time.  It definitely was not a fun two hours but we got through.

We got Casey up at about 6:30 which is a little earlier than we got him up last year.  One, because it just gives us more time, and two because the night nurse hasn't had a lot of 'readying for school'.  A couple of screwy things happened (plug on Casey's suction machine wasn't in his room), couldn't find his tray, etc.  Oh, and then the chair was doing weird things and Nancy and I were getting a little stressed :)  .  For some weird reason the display kept showing the red stop/kill button. Somehow we got out of it.  He didn't seem too nervous but I'll bet he was.  New bus driver.  I didn't meet him but Gene helped get him on the bus.

Just before Casey was set, I started Colin's saline neb and shakey vest.  He was very quiet and didn't seem too mad to be up so early.  After Casey was out the door, I started in on the little things to do, like making Casey's bed for him to do his school on, meds, water, clothes, etc. Cristy came at 7:30 so all she had to do was get him washed up, coughed and dressed.  At about 7:30 we pulled up Skype on the ipad and tuned into school.  We made sure we could see and hear them but they couldn't see or hear us.  Colin will be missing about the first half hour of school each day but what can ya do???  This way we'll hear a little bit of what's going on.

Tuesdays and Thursdays are going to be rough.  Cristy is going to start work with Colin at 7:00 so that will ease the burden a lot.  But, Nancy L will be coming at 8:00, as far as I know, so that puts a lot of pressure on me!

It was Grand Central Station here this morning for phone calls, school, VNA, etc., but it quieted down later.  I was able to complete some paperwork this afternoon, yay!

Casey had a very good day.  Good start to the year.  Mel was very happy with him!  He was pretty appropriate and used his DynaVox well, and drove his chair a lot.  Yay!  The new personal space is going to be great.  Casey has some of his old buddies on his team this year, and he has his precious Mariah.

Colin did pretty well.  He has lots of new teachers and a completely different kind of schedule and he hung in there through it all.  I did hear a lot of "ows" and whines at a couple of segments of the day but I think he did okay.

Thank you, MJ for pic monkeying our photo!

Gene cooked up Karen's chicken in the crockpot today.  I made some noodles and green beans and we had a real dinner!

Casey just had a shower and they're both snuggled in bed now.  I'm anticipating that they'll both be asleep soon.

Oh, tomorrow Kinney Drugs will have the Gentian Violet ordered in for Casey.  He definitely has thrush on his tongue.  Hopefully, that will kick it and we won't have to go in to the doc and get a script for oral Nystatin. 

Communing with nature

Today we communed with nature.  The boys enjoy taking walks and fishing and doing other things outside, of course, but they've never, that I remember, lay in the grass.  I remember sitting cross legged at the village green, laying in the grass at Caumsett, rolling down the grassy hill near Mary's house...grass was always something I seemed to be near, lol.  The boys haven't had that experience so today I was determined to get them in our yard on the grass. 

Nurse Lauren was able to do a shift today so Colin was happy.  Nancy L was here for Casey.  After watching a movie and getting ready for the day, the boys got in their chairs and we headed out.

Gene came with us so he could help lift the boys from their chairs to the ground.  Plunk!  Colin was down first and boy, did he HATE IT!!  Goodness gracious, it's just grass!  He cried and yelled and high heartrated and his hands and feet were soaked with sweat!  We got him to cooperate a tiny bit but he did NOT enjoy himself at all. 


Casey was next.  At first he fussed but then he got into it.  He laughed at Colin for being such a poop about it! 

Casey is wondering why in the heck is Colin fussing?

Colin is trying to be happy here.

Jaxon is protecting his boys.

All boys should know what it's like to have their feet in the grass!

Well, maybe Colin doesn't need his feet in the grass as he hated it!

Nancy and Casey checking out some Demi Lovato videos.

Nancy tried to read some jokes to the boys and we blew bubbles and tried to distract Colin, but he didn't last long :)   When we asked him if he wanted to go for a walk and he was all into it.  So Gene helped us get him back into his chair and he and Lauren took off for a walk to the pond. 

Casey was very happy hanging out (we finally did put him on a sheet) and watching some videos on the ipad and reading To Kill A Mockingbird with Nancy.  (At least I think they read a chapter).  Oh, and Jaxon was outside with us and Casey loved it! 

We let Colin do whatever he wanted after we tortured him with the grass.  He chose to watch a movie, surprise,surprise! 

Casey came in eventually and watched some YouTube and flicked through the channels in the yellow room.

We all ended up out in the living room late in the afternoon like our normal.  Colin watching DVRd Celebrity Ghost Stories and Casey watching football, basketball and Catholic Mass on the ipad. 

AC came over later and brought some take out dinner.  Three kinds of yummy subs that we shared and some cannollis. 

Casey is full of questions about the fair and the concert tomorrow night.  I've gone over with him as detailed as I can of what we're going to do, who we'll see, and all that kind of stuff.  I hope he enjoys himself and isn't freaked out. 

We're hoping the weather is okay...might have some thunderstorms in the afternoon so we'll see what happens. 

Our friend Cashel Gardner sent us wrist bands with his passion, SMA It Forward With Cashel printed on them.  I snapped a few pics of the boys wearing them.

If you're on Facebook, please look for his page, SMA It Forward.  He's doing some amazing things and raising a huge amount of awareness for SMA.

Successful day

Signed the papers today to refinance our house.  Got an awesome rate of 2.75% at the NEFCU.  ALL of us went as we didn't want to leave the boys home with the nurses since they've been 'tricky' lately.  So, Nancy H, Cristy, Gene, the boys and myself piled into the van at 10:00 and made it to the credit union for 10:30.  We had to wait until 11:00, which didn't make us happy, but glad to have it done.  My friend, Donna, was working teller and I had to wait on line to visit with her for two minutes!  Busy, busy place!  It was nice to chat in person for a bit instead of just Facebook contact :)

While we were in the credit union, the boys and Nancy and Cristy walked over to Buttered Noodles.  OMG, I am so sick of hearing about Buttered Noodles since they sponsor a lot on the radio stations I listen to, but I let them go over anyway :)  It's a discount kids store and I know that's a good thing, but I think it's a dumb name and their commercials grate on my nerves.  That's enough on Buttered Noodles, but I feel better now!

After that, we headed over to Gary's Barber Shop for haircuts.  For some reason, Colin enjoys getting his haircut.  Casey went first and then he and Nancy walked around outside while Colin got his done.  They both look great and are spiffy to start school on the 29th.

Mom and Dad headed back down to Florida today.  Sad to see them go.  Once again, we didn't get to do a lot of the things we were hoping to do with them, but we did have a quite a bit of hangout time and lots of dinners. 

Tried to get the boys to go to sleep EARLIER but Casey bucks the thought of going to bed early and getting up early so he stayed up way past 10:00.  I'm getting very nervous about having to get him up at 6:30 on Wednesday!!!!   And, Colin is starting early this year, too.  We are all going to be a bunch of grumps until we get into the swing of things, I'm sure!