Casey's last EVER first day of school

So, today we sent Casey off to his last first day of school ever.  He's 21 but because of special ed law, he will get to continue at Milton High School until he turns 22, which is in January. He's done with his core classes and already technically got his certificate in June of 2015 but there's plenty of things for him to work on at school. 

He had a good day.  Nurse Staci gave him an A for the first day of school.  He was very surprised this morning to see Larry 1 as his bus driver and 5 Craigs for the helper!!!  He was very pleased to see his cronies at school.  He's in the same space as last year for rest and all that.  They actually have a classroom for him to go to for his class time. 

Mondays and Tuesdays he'll be out in the community again.  Thursdays he'll go to the Milton Public library to do his projects.  Wednesdays and Fridays he'll have his regular long days at school.  He and Paula are hashing out his schedule and we're prioritizing what he'll work on.  We're going to try to get him into a Virtual High School class on American Popular Music.  He'd like that. 

Ungodly hot and humid today.  Tomorrow should be back to normal. 

I got two loads of laundry out. 

Promptcare and I changed our appointment to tomorrow at 9. 

I napped as I have Casey tonight.  Nurse Deb and Vic have started their trip to run the Gore -Tex Transalpine Run.  Yes, our nurse is running through the Alps for 7 days and 257.6km, God only knows how high the peaks and dips are!

We're hanging in the yellow room with the AC on.  I think it's already getting less humid out but it feels sooo good in here!  Red Sox on in a little bit. 

Feeling hot and blah

Kind of a draggy kind of day.  Very hot and humid.  One more day tomorrow and then it will break.

We stuck to our plans, though.  Woke Casey early and did his treatment and got him up and ready for the day.  Green Mountain Power knocked on the door at 8AM to let us know they were going to trim some trees and needed the power off for 2 hours. The man had remembered that we had medical needs...Anyway, it was a perfect timing because we had planned to be out of here at 9.

Gene drove us to school and stayed in the van with Casey while Nurse Julie and I brought in Casey's medical supplies to his room.

Then Gene went home and we headed to Garry's Barber Shop.  We had to wait for quite a few others ahead of us.  Robyn did a good job on Casey and gave him a little flip in the front.  He was cooperative.

Got some goodies at Quality Bake Shop.  Walked over to Dollar Tree.  Casey was mostly cooperative.  He remembered that we were going to pick out some post it notes for Paula.  He also picked out a cheery card to send/give to Grandpa. Then he obsessed about Halloween costumes.  No clue why as he hasn't dressed up in years.

Visited with Gramma O'Neill for a few minutes and delivered her cookies.  She came out to the ramp with her walker to wave at Casey.

Home again, jiggety jig.

Connected with Casey's SLP/Case Manager via FaceTime/and then phone when FaceTime didn't connect well.  Talked about some scheduling and things to focus on.

Shower time.  Must feel so good to have a shower after a hair cut.  No matter how careful the stylist and we are, he always ends up with hair everywhere.

I managed a quick nap and to listen to a podcast.  I still feel bleck.  I'm sure part of it is that I only had one cup of coffee this morning as I forgot to grab my iced coffee I had all ready to go in my travel mug.  Everyone else was a little blah and crabby so I didn't feel too out of place, haha.

Tomorrow morning will be easier not having to do shower.  7:15 pick up, oh my.  We'll probably have to start him at 5:40 or so.

Watching Red Sox now.  Occasionally he'll come up with something he wants to add to meeting agenda, or a person he's looking forward to seeing tomorrow.  And he's obsessing about wondering who his bus driver will be!

I wasn't planning on going anywhere today, but Nurse Julie said we should do something.  I've been wanting to hit Costco so we decided to go for it.  Casey was not too thrilled but resigned himself to the fact that we were going out.

Gene had some time so he went, too.  I should try to remember next time that Gene is not the more fun shopper.  He hates if we get to look around too much because we'll spend money, haha.  He had all the things on our list, and Peggy's, before Casey, Julie and I had even explored an 1/8 of the store!  We found some dark charcoal grey pants for Casey to wear for RJ and Tiff's wedding.  Now we just have to find/borrow a tie that has black in it.  He has a clip on tie that would work but it's red and blue.  Casey wanted to look at books.  He found some Dr. Seuss books for Cousin Lucas for Christmas.  Very cute ones about whales, dolphins and sharks.  I guess he wants to share his love of aquatic mammals with his cousin.

Then we made a little stopover at Julie's rental property.  Bill and his brother, Bob, (Sponge Bob to Casey) were working on the kitchen floor.  Got the tour.  Nice little place and the area seems so quiet, and it's got a nice big lot.

Talked Gene into going to Village Scoop for some ice cream.  I got a small maple walnut cone, which was BIG!

Managed a quick nap for myself--actually feel refreshed.  Put diapers and some supplies away.  Made formula, blah, blah, blah.

Casey is mad that the Red Sox have the night off.  BUT we hope they are regrouping and are poised to come out of their slump!

SMA Awareness Month 2018

This is what I came up with for SMA Awareness month this year.  Wearing my shirts that have something to do with SMA and SMA Awareness.  I had hoped I'd have 31 to wear, but alas, I made it through day 26.  I have some shirts that I have doubles of so for the last few days of the month I will wear those--different shirts but carbon copies of some of the ones I've worn already.  I wish I went out in public more, because then I WOULD be spreading a little bit of awareness. I did get out and about some so I feel like I did a little anyway, even if no one looked at my shirt, lol.  

Great Nephew #2 visits

Highlight of the day was having Conor visit--oh, and Peggy (Gramma) too.  We don't get to see Conor enough, even though he lives right in Milton!!! 

Anyway, Peggy had brought Conor to visit Grandpa O'Neill at the nursing home and then to see Gramma O'Neill at Main Street.  On their way back they came to see us. 

Conor was very happy to play, eat toys, play, eat toys, play....Casey thought he was funny.  Even Jaxon liked him, although the cats were scarce. 

Nobby again

We got to see Nobby Reed again tonight.  They played at Trucks, Taps and Tunes at The Essex Experience (formerly the Shoppes at Essex Center).  Gene had to clue me in that 'Taps' was beer as I had no clue.  I knew they had food trucks and music....

Anyway, it was a beautiful evening--picture perfect, really.  Chris came over and we headed out.

The band was playing when we arrived.  It was pretty sunny so we had to go past the pavilion and we were not close enough to see well, but the sound was good.  Gene was able to get Casey on the wifi so he was happy with his maps and listening to the music.

Chris and I checked out the food trucks.  I had eaten a late lunch and was still pretty full (I had the weird kind of episode where I get shakey like low blood sugar but I was craving protein so I had some leftover chicken cordon bleu).  We decided to get ice cream from Sisters of Anarchy.  I don't remember the fancy name but it was a very yummy chocolate chip.  Rich and creamy with yummy chocolate chips and in a waffle cone.

Saw our friend Lynne Moon.  She is good friends with Nobby.  We also saw our Child Life Specialist, Jenni, from UVM.  Casey used to have her running all over the hospital looking for certain movies that he just HAD to have and then didn't even watch, lol. She is very nice.  She's in the Comfort Zone now and we don't get to go there anymore because Casey has aged out.

Eric (drummer for Nobby) came over to chat with us at break.  He and Casey have become good buddies.  His 7-year-old son was there so he had him come over and meet Casey.

We stayed past 8 and left while the band was on their last song.  We would have stayed to chat with Eric again but we wanted to get Grandma O'Neill a sundae from McDonald's and Nurse Elizabeth was due for her shift at 9PM.  Hit McDonald's and brought the sundae to Grandma.  Gene and I went in for a minute.  She ended up coming to the door with her walker to way to Casey.  Oh, and Casey got to see Roxy for a minute!

We got home a few minutes before Elizabeth arrived.  Casey was very wired, lol, but eventually he fell asleep