Monday, August 29, 2011

The day after Irene

Brought the dog out for his morning pee. Lots of limbs and branches are littering our yard. The pool is fine and the house is fine.

Now to deal with the power issue. Have to figure out where to start. Sigh.


11:20 AM: WE HAVE POWER!!!

Sunday, August 28, 2011

Hurricane Irene report

8:00 AM: been raining here for a couple of hours. Air is still, but yellowy and feeling heavy. Boys are sleeping.

10:15: Rain coming straight down. No wind yet. Dark. Boys just barely woke up. I had to turn on a light!

10:45 AM: Wind picking up. Rain is coming down on an angle now.

11:30 AM: Weather the same here. Southern Vermont is reporting lots of flooding and washed out roads.
Boys are happy watching The Country Bears. Jaxon is not happy because no one (not even him!) wants to go out and play (but he still has all his energy) and he's loping around the house with his Frisbee trying to get someone to play with him.

Flash flood warning just issued for Burlington area. 6600 CVPS customers (our electric) are without power.

1:00 PM: Wind is picking up. Some big gusts. Gene's umbrella went inside out when he went out with Jaxon.

Boys are in the living room. Colin is watching cartoons and Casey is listening to his book on CD. I'm heading up for a rest with Moxie. Gene is going to make a special concoction, I hope!

About 7:00 PM: The wind is supposedly going to pick up and we're going to get 1 to 3 or more inches. We have a gas generator but not a whole house one. We're putting it on for short periods but running the boy's equipment mostly on batteries. We'll be fine unless a tree falls on the house!

8:00 PM (give or take) Not happy. Been 2 hours and the guys haven't been back to trim trees and fix transformer. Gene called and they have no idea what the crew is doing. Advised us to seek alternative arrangements. Now what?

8:10 PM We are on "the list" so I don't know what happened but they will be hearing from me! Just spoke with milton police. They are with a cvps crew and will send a crew over. Fingers crossed!


8:40 PM The house smells like wet dog...DVD battery finally died--I think it ran for about 3 movies--pretty good! Now we're watching TV. Nurse Staci is going to bring me a milk shake if she can make it in. I think the worst is over but Gene still wants the boys to sleep in the living room. Apparently, I don't rate because he's letting me sleep upstairs, but won't let the boys sleep in the wish room!

Thursday, August 25, 2011

some things and a must read post

Not much exciting here going on today so I want to share a link to a post that a friend wrote about her child. He has SMA like Casey and Colin. It truly is a must read!!

Oh, I stopped by the Milton Public Library today for the FIRST time since it was renovated. Wow, nicely done! I picked up two books on CD for Casey; City of Embers and one by Carl Hiasen, and a dog training book for myself.

Jaxon and I had a little training today. I made him sit before we went out which he does fine. Once outside he starts jumping and gnawing on my arm. Have to study up on walking on a leash, sigh. We played some good catch. I'd throw the ball or the new Frisbee and say "bring it!" He get it and bring it back. I'd say "drop it" and show him a piece of kibble and much of the time he'd drop it. I'd have to snatch the Frisbee up pretty quickly and throw it or else he'd grab at it. Little baby steps today.

The boys had a low-key day. Poptropica, some Scooby Doo on-line games and then some wii.

I must also mention Hurricane Irene. So scared for so many of our SMA friends that are in the path of this storm. I know some will be evacuating and I pray for everyone's safety. On a less urgent note, our concert may be canceled due to the storm. What a bummer that would be, but better safe than sorry, especially after the disaster at the Indiana State Fair with Sugarland tragedy.

So here is the post:

Today...
by Kathleen Weber Piazza on Thursday, August 25, 2011 at 8:04pm

August 25, 2011

As I sit and write this entry, there are a few things I need to say immediately:

- Today...is Nicholas' 1st day of college!

- Today...is proof that DREAMS do come true!

- Today...is a MIRACLE in the works!

- Today...is the hardest, scariest, most anxiety ridden day that I have known in a long time!

My heart feels like it is going to beat right out of my body...doesn't anyone around me see it?...can't you hear it?!

Sending your child to college is an emotional time in any parents life. Imagine sending your medically fragile, wheelchair bound, totally dependant child who "they" all said would be "dead before the age of 2" ("they" being the doctors who 1st diagnosed him, I believe it was a "world renown" dr)...Imagine the stress I am going through - I really don't think you can...unless you are a parent of a child with SMA. We SMA parents are a unique breed...we never asked to join this club, yet we are dedicated to it 100%. We can create, build, adapt ANYTHING so that our special child can have the most normal life experience ever!

As I sit here in SUNY New Paltz, Wooster Science Building (we actually found a great little lounge area complete with a huge ROCK coffee table...GEOLOGY is what Nicks' major is and he currently is in a geology lab class)..Oh sorry, I kind of went off track...as I sit here in this science building, I am overhelmed by the fact that my son is EXACTLY where he wants to be...he is living his DREAM! AMAZING!! I can barely write as the tears flood my eyes and stream down my face. I could never have imagined when we were first diagnosed 17 years ago that this is where we would be today!

I'm trying to blend into the walls so that Nick feels his accomplishment without me hovering, but let me tell you...it is VERY difficult! I have always been the one caring for him, sensing what he needs I think sometimes before he even does. Now he is a young man, "walking" through the halls of college...WOW! I thank his nurse for attending with him, I know he is in good hands...but still I worry, wait, I pray. As an SMA parent i think we worry more than any other parent on this planet! It sometimes becomes unbearable, all the worrying, a feeling like nothing is possible. But TODAY...EVERYTHING IS POSSIBLE! TODAY...IS A GREAT DAY!

1st day of Kindergarten!

1st day of College!

The pictures didn't post :( but it's a powerful message.





Tuesday, August 23, 2011

Rango-boy, Earthquake

Wanted to post a pic of my Rango-boy. He is definitely into it. Today Nurse Lauren duded him up and they went outside to check the neighborhood (back yard) for bad guys. Apparently, the pool and the grill were very bad because they got shot with lots of nerf bullets!


OH, and no one in this house felt the earthquake that we centered north of Richmond, VA. It was the largest earthquake the east coast has seen in 100 years! Many people felt it in Vermont, and specifically, Milton, but no one here felt a thing! I must have been napping with Moxie...maybe that's what woke me up. The boys were outside and Julia was around here somewhere...

BUT, this morning, we all SWORE that there was a huge explosion or earthquake. Gene figured that they were blasting in the quarry again. It's recently re-opened. We all looked at each other like "is this the end of the world?" Weird, because we didn't feel the actual earthquake.

Here's Casey today. He was hanging in his room listening to a book on CD and gazing out the window.


This morning the guy came from the chair place to tune up the boys' chairs. I had envisioned something a little different than he did. I remember our old place they would pick up the chairs, bring them to the shop and check them over completely. When I made the appointment I had a feeling that it wasn't going to be thorough. All he did was ask us a few questions and then suggest some new tires. I said, well, can you check the breaks and the frame solidness and things like that?? He said that the chairs looked great and the power chair wasn't making any noises so it was good. Sigh. We did point out that Casey's manual chair needs new tilt cables so we're getting those, too. Ooooh, and he noticed that we're missing a few caps over some of the bolts on Casey's power chair so he'll get those covered. Ha! Wanna bet that never happens!?




Monday, August 22, 2011

Exciting things!

Two exciting things happened today, but I'm only going to tell you about one of them ;-)

I'd been pondering getting tickets for the boys to see Big Time Rush at the Champlain Valley Fair. Casey and I are already going to see Lady Antebellum with MJ, Brenda and Connie....but I really didn't want to miss, I mean for the boys to miss, such a cool show. I asked Gene if he thought we should go and he was okay with it. $170 later, we're going!! It will be Aunt Chris, me and the boys. Gene will go with us and walk around the fair while we're in the show. We did that with the Jonas Bros. and that worked out fine. I wasn't going to tell Casey yet but I forgot to tell Aunt Chris not to say anything, ooops. So, when Casey used his DynaVox to say, "When is the next good music concert?" Instead of saying Lady Antebellum she said Sunday and Big Time Rush! I think he's excited. Colin said, "YAY"!!!!

Casey spent some time out on the swing with Julie today. Not sure what they did but he probably listened to music. It was a beautifully cool and breezy day--more like fall.

Colin and Nana L played some old-time computer games-Monster's Inc and some Putt-putt. We haven't played those in a couple of years! For some reason Colin is obsessed with Randall from Monster's Inc. He's also Obsessed with Rango right now. Gene found him an Australian outback hat that he got from someone and I cleaned it up and he loves wearing it. Aunt Chris found him a glittery, blue star (perfect for him since it was his beloved BLUE) but Jackson got a hold of it and pretty much chewed it up. I took a Big Change Roundup for Kids badge (raises money for our children's hospital) and covered it with aluminum foil and Colin is happy again.

I never got to take my read/nap today but got a chance to have a good catchup with a facebook friend from Canada.

I'm actually reading a book again. Dad gave me Smokin' Seventeen for my birthday and I'm really enjoying it. It's definitely a laugh out loud book! It even comes with stickers in the back "I <3 Ranger" or "I <3 Morelli" I'm looking forward to sporting "I <3 Ranger". How about you?????