Another successful and fun Halloween for the boys!

We continued the tradition of having a little party at Aunt Chris's and Trick or Treating around her condo development.  Colin could hardly contain himself getting dressed--he wanted to go, go, go!  Casey was a little more reserved but I know he was looking forward to it.

Got the boys dressed.  Got our things together.  Loaded the boys into their chairs and into the van.  Oh yeah, and Jaxon came, too.  We arrived at AC's a little after 5:00.  Soon afterwards our friends, Jennifer, Alaina and Greg arrived.  We chatted and had some of AC's munchies while Nurse Julie created Count Colin's scary face.  Then we had our traditional pictures-see below :)

Opposing stripes--Greg the zebra and Casey the referee

Scary alien Nurse Julie, Casey the ref, Cowgirl Alaina, Greg the zebra and Count Colin

Alaina and Greg were off to parties...

The boys opened some Halloween gifts from AC.  Movies, books, Halloween do-dads and all sorts of great loot!

Had some of the yummiest pizza.  More munchies.

Then it was time to hit the streets!

We had a good time determining which houses looked like they were open for business.  Julie loved the houses with "Take your own" buckets out.  She'd get really excited and scamper up and grab some :)

Casey went with us for a while and then he thought he'd rather be back handing out candy with AC.  So he and Gene headed back while Julie, Colin and I carried on the Trick or Treating.  It was fun hearing some of the people saying that they always looked forward to seeing the boys and what they were dressed up as each year.  And, then you have to love the people that apologize for giving 'healthy' treats instead of candy bars-loved the look on one of the guys faces!  I'll bet his wife picked out what to give this year, lol!  And, one woman came right up to Colin and felt his cold hands and wanted to give him some mittens to wear while he finished his rounds!  We made it up and down the whole street.  Usually we don't make it to the very end houses but Colin was so into it.   After every house, he would start laughing.  Not sure if it was because he just thought it was fun or if he thought it was funny that you could go up to someones house and get free candy.

Here we are as a family.  And, NO, this will NOT be our Christmas card!

Gene hit behind a car and tried to scare us when we were back at AC's but we had seen him, ha ha.  Casey and AC were sitting out on the porch with their candy bucket handing out the candy.  It was pretty chilly so we all went back in.  The boys found some stupid show on MTV they liked so they were happy.

Then it was time to head home.  Jaxon had stayed in the van like a good boy.  Gene had taken him for one walk.  I think Jaxon is extra good when we bring him somewhere because he knows if he wants to be with his people he had better behave.

We were all beat by the time we hit home.  Off to bed.  Boys were very quiet (which is unusual) and fell asleep quickly.

Jodi Picault quote

Peggy made this into a pin for me :)  She used one of her photographs of Burlington for the background.  I love it!

Hello Everyone!

We're moving along in our van fundraising efforts! We'd like to thank all of you for contributing and supporting us. It means so much to all of us.

Every penny we put towards the van fund feels so good and is making our dreams closer!
We are at almost $13,000, whoo hooo! We're starting to work with a mobility specialist to help us find what style van will work for our family.

Coming up on October 12th, Chow! Bella in St. Albans is hosting a Comedy for a Cause and the proceeds will be going to Wheels for O'Neills. We're excited about this and really looking forward to it.

If you're interested in the event, please email me and I can give you the details and get tickets to you. Each ticket is $20.

Thanks again for the support!

Sue, Gene, Casey and Colin.

Today we met some awesome people!  We headed up to St. Albans to meet with the folks that host the Comedy for a Cause events at Chow!  Bella Restaurant.

We were greeted by Tom Murphy, Jimmy Matas, and Patti and Richard Bourbeau.  They got to see first hand how we have to squeeze the boys in and out of the van :)   Tom is the owner of Chow Bella, and I guess Jimmy is his right-hand man.  Colin Ryan, the head comedian, wasn't able to be there.  Patti and Richard are grandparents to an adorable (I've seen lots of pictures!) 1-year-old that was recently diagnosed with SMA in the area.

It's kind of hard to write about the meeting because there's more emotions going on that I can even write about.  The nitty-gritty is that we went over what the night will look like; saw the event room, talked about seating, 50/50 raffle, and that kind of stuff.  Talked about tickets and spreading the word.

But, the best part was sharing a little bit of our story.  And, learning a bit about Tom and his passions.  And, learning about Patti and her family and her grandson's story.

I'm sure it was a little overwhelming for everyone to see the boys and all of their equipment.  I kept trying to remember that we've been living this for so long now that it's normal to us, but to the average person we must look a little odd and intimidating.  But, I truly think everyone was happy to meet the boys and enjoyed them.  I wish Casey had been in a better mood :)  I was hoping he'd regale them with his DynaVox chatter but he clammed up.  Oh well.  Colin was a little more agreeable and made happy little comments throughout the meeting.

I told Tom that Casey was fascinated with kitchens (he always wants to go see Bill's catering kitchen!) so he let us take a quick tour.

So, now we sell tickets and look forward to the night!

Oh, and Tom said they like to have someone from the charity, or in our case, the family, get up and thank the crowd and say a few words.  I already called Peggy (Gene's little sister) and nominated her.  It's right up her alley since she's the President (or whatever it's called) of her Toastmaster's.  Perfect!  I certainly know I couldn't get up there and talk about the boys!

So, if you're interested in attending, please email me and I'll reserve you tickets!

caseyandcolinsmom@gmail.com


This morning the boys and I had some snuggle time.  It's getting to be that time of year again where it's perfect to get into bed with the boys with lots of blankets and pillows and watch movies.

This evening Nancy and the boys got in some Poptropica before it was time for bed.

I consider this a good day!

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.