Saturday, January 22, 2011

Friday, January 21, 2011

From Mop Head to Handsome-Head

Today Casey's class was having an exam that he didn't have to participate in so he got to go out in the community with the high school kids. They hit the mall--and Casey got his hair cut!



and now:




After his hair cut he asked to go to FYE.

Colin had a good day. He only lost one scooby snack! He sat up in his kart for art and got messy painting.

Me, I was blah. Headache. Not much accomplished but a nice nap with my fat marshmallow Moxie-kitty pillow.

This evening the boys have run me ragged with wanting this and that and that and this.

Tomorrow is another day!

Wednesday, January 19, 2011

Kaitlyn Pas

Kaitlyn Pas earned her angel wings this morning. She was 8 years old. She had SMA type 1 like Casey and Colin. I've 'known' Kaitlyn (cyberly anyway) since she was an itty-bit. For several years we were Secret Santas to Kaitlyn and her big brother, Liam. We always had fun picking things out for them! Kaitlyn will be missed greatly by so many people. She is very loved. I ache for her family and caregivers and friends. And, I feel a special ache for her baby sister, Dawn, who will grow up without her big sister.

http://www.oursmaangels.com/kaitlyn/




I write about Kaitlyn because I "knew" her for so long. Three other SMA kids earned their wings this past week (just that we are aware of) and I didn't write about them--not that I didn't care or that their deaths didn't affect me, but I didn't "know" them as well as Kaitlyn. But my heart can almost touch the hole that these deaths have left in these families. It hurts to see that hole in my head but I can't quite let my heart feel it.

Casey is going to be 14 on Sunday. Why have we been so fortunate as to have him for almost 14 years? I almost hesitate to write this because tomorrow is another day and who knows what the future has in store for us; any of us. It's just so confusing some times. Sometimes I feel like I have everything under control and then a day like today happens, hearing that another one of my kids is in Heaven, and nothing seems clear.

I know it can be a tough life to live having SMA. I see it every day times two. I am so thankful that my boys have been so 'healthy' and have done so much and enjoyed so much despite so many physical obstacles.

Kaitlyn, and all the SMA Angels; you will be missed and not forgotten.

MJ created the following picture...

Tuesday, January 11, 2011

Quote for SMA moms (dads, too, if you change the word!)

"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman

Of course, this goes for a parent of a child with any disabilities but it resonates so much with the SMA fighter moms I know.

Sunday, January 9, 2011

When it's quiet around here, it's noisy!

The boys were asleep. I was sleeping on the couch because we had a night nurse that hadn't been here since August...All should be quiet, right?? Weeeellll... Gene set up the humidifier/air purifier in the living room. It's clunky and old and very noisy. Gene says, "Fine, our bedroom is really dry so I'll put it up there." Then Gene decides to make bread in the bread machine (this is at 11:00 PM.) I said, "You're not going to put that on the table, are you?" (the table is right by my head.) Gene says, "Fine, I can put it upstairs in the bedroom." Weird, but okay with me.

Trying to sleep. Hear the hum of the boys machines. Normal and fine. Crack--Pop! The wood stove is alive!

11:30 nurse comes out to get Casey's meds. "What is that noise?" Grrr. It's the bread machine clanking and banging away. We can distinctly hear it through the vent between the living room and the bedroom. Do you know how LONG bread takes to mix and knead?! Seems like forever when you're trying to fall asleep.

Griiiinddd, scrape. Plow trucks going by every two minutes.

Trying to sleep.

Static. For some weird reason the baby monitor in the kitchen is putting out static and I can't hear the boys sounds. Get up and investigate. No, the monitor in their room had not fallen over. Hmmm. Go upstairs and pull the plug on the humidifier. Ahhhh, I didn't realize that I had been hearing the constant hum of the humidifier through that same vent. No interference up here. Weird.

Still interference downstairs. Suck it up. Try to sleep. Trust the nurse. Can't. Can't sleep without hearing the boys' night sounds.

Go upstairs. See that there is 32 minutes left to go on the bread. Go downstairs. Wait. When it buzzes for doneness go upstairs and unplug bread machine. Got downstairs and check. STILL interference.

Decide to sleep upstairs and listen from the bedroom (yes, it will be harder for the nurse to ask a question but I can hear beeps, fusses and sleep sounds).

Ah! Comfy and quiet. SNORE!!!!! NO, it's not me! Sigh.

Now what?
......

Random pic of the day:

Friday, January 7, 2011

Is this getting boring?

Really not much to report. I feel like this is getting boring. Sorry! One of these days we'll spice it up and thrill you again, I'm sure!

Colin was in his stander today AND sat up in his kart so he had his belly brace on quite a bit today. He did really well with it.

Priscilla and Colin showed Lauren a couple of his new magic tricks today. Everyone seems to like the Sword in the Stone one the best.

Casey had a medium day. He eventually had to leave science for yelling. He did listen to some more of The Outsiders.

He earned time with J and J and they all watched a little bit of the movie Moby Dick. Long story as to why. For some reason, Casey has been into the story of Moby Dick. He also brought home a book to read of Moby Dick and a VHS copy of the movie that he says he wants to watch with Aunt Chris and Colin.

Gene had a physical this morning and then headed to the office.

I was very motivated and got all sorts of those little kind of things done today that I'd been putting off.

I got to enjoy a nap with Moxie and Nugget.

AC came for a while and did some reading with Casey and entertained him while Colin's cartoons were on.

Casey is a little disappointed because we thought Lawren (who used to do shifts here) was going to shadow overnight with Brooke tonight but she thought she'd be fine without shadowing so it will just be Brooke tonight. Casey was psyched to have a party throughout the night!

Random pic of the day:

Thursday, January 6, 2011

2 big things

1. Our microwave died.
2. Casey had a terrific day.


This morning I made my first cup of coffee from the Keurig and then put it in the microwave for 20 seconds like usual (I like it extra hot) and I drank it. I noticed that it was noisier than normal but didn't notice that it didn't heat my coffee. Brooke said, "Oh, I think your microwave died. I ate cold oatmeal last night." Sure enough, it was kaput. Gene tried to fiddle with the fan but it must have been the heating element. It was a good microwave; we've had it since 2003! Found a Kenmore online. Gene went to the Sears in MIlton and, of course, they didn't have the one we liked on line. But, I think he just walked in the door with one he got from the mall Sears. Gotta go check.

............

Done! The microwave is in it's place. I already heated up some ready-made turkey meatballs (and now they're simmering in the sauce). I think we'll like it although the keypad is different.

Yes, Casey had a great day. He was awesome in Language Arts class and earned free time by listening quietly (optimal word here) to Mr. Wyndorff read The Outsiders out loud.

His trip in the community was to Good Will. He donated some of his toys and a few odds & ends. He got to see the room where all the stuff is taken in and sorted. Then he shopped he bought a book (one of which we already had) for 99 cents.

Random pic of the day: Nurse Julie and Casey~Kate's Place 2009

Wednesday, January 5, 2011

Nurses Galore

Today was a very nursey day :)

Both boys had day nurses, evening nurses and a night nurse! A couple of days a week we have an evening nurse--usually for Casey. (But they unofficially help us with both boys.) Julie does an evening now and again and tonight was one of them. Aunt Chris was here, too, so we had quite a menagerie of people!

I made myself as scarce as I could (which wasn't very) and did paperwork, laundry, putting stuff away, etc.

Colin has speech after school today so he was quite 'educated' and just wanted to sink into his cartoons. Casey had a pretty good day until the end, again, so he didn't get wii or football (via Mel). Again, don't feel sorry for him--he had it all laid out in front of him and he chose the yelling road. Oh well. I think he's starting to get it.

Good thing of today: Casey's switch on his power chair DOES work properly! Long story short: Claire, the OT went over to the school to check it out. They played around with it and got it working perfectly. Apparently, yesterday they had it taped to the bottom of the Plexiglas instead of the Velcro. Thus, the switch was TOO close to the Plexiglas and threw off the beam. Jack, the tech, came anyway, and they all decided that it was a good thing that he came because if he didn't, Murphy's Law would have been in effect and it wouldn't have worked. Plus, Jack looked at the cord that is supposed to run the vent and saw where it's damaged so he put it on his list of things to replace.

Casey's class is going to be reading The Outsiders by S. E. Hinton. I think it's a little mature for 8th graders but I think he'll 'get it'. He read (as an accommodation) the Cliff's Notes with Julie this evening. He was very attentive and they talked about some of the issues that will come up in the book. He gets excited when talking about how people are different and can have conflicts and how good and bad things can come out of the differences and conflicts. He also has the movie on his DynaVox that he'll be watching.

Gene made some killer ham and scalloped potatoes tonight. It took a heck of a long time for the potatoes to finally get to the properly cooked consistency, but it was worth the wait! It tastes like it has cheese in it but it doesn't. Somehow, he makes the sauce so rich and smooth and creamy. Yum.

Random pic of the day: Casey at Kate's Place 2009

Tuesday, January 4, 2011

Rest of today...

Colin used his stander for the first time since before break. He was fake fussing when he was getting strapped in but ended up doing great. Today was his sort of short day. He had a break in the afternoon and then Emily came back for science.

Casey did pretty well in the morning but kind of blew it in the afternoon. He was supposed to go to the public library in Colchester but yelled through the hallways and had ample opportunity to express what he needed/wanted. Mel made the decision that he wouldn't go out today. Don't feel badly for him because he knows just what he's doing and what is expected of him!

I puttered and cleaned and organized and didn't even take a nap. Lots of phone calls and emails.

This evening Brooke was here and they played some Where the Wild Things are wii. Bedtime was started earlier than we had been but I think they're still awake now. Casey was awfully crabby this morning getting up at 6:40!

Me, I get the couch again tonight. I don't even think I'll read or watch TV--just try to get some zzzzzzzzzzzzzzs.

Random Picture of the Day:

RIP Sister-Cat

The bus company is on my list

So, the bus company is on my list; the list of those who have pissed off Mama. Casey's regular morning pick up is at 7:41. The driver is very prompt and we like him. We knew ahead of time that he was not going to be here for this morning's pick up so he would have a sub driver. Well, 7:46 came along and no bus. I called and they said "oh, we don't have anyone down for that pick up" or something of the sort. WHAT? "But we'll send someone down right now." He's finally picked up and it's 8:08. It will be an extremely short day for him today since he goes out into the community and they drop him off around 2:00. Mel (his para) will not be happy! Casey has big plans for this year; lots to do and lots to learn!

Monday, January 3, 2011

A Monday

It was a good kind of day. Nothing extreme in either a good or bad way.

I was kind of worried because Casey got a little anxious and teary-eyed when he was rolling out the door this morning and I kind of laughed at him and pushed him out the door! Julie gave me a warning look, but I couldn't help it. So then I worried that I set him up to have a stinky day but he ended up having a good day. Whew!

Casey actually signed into the school network today all by himself with his password. That's huge for him! He did it with scanning but he had to use the key board and that's a big step for him!

Power chair is still giving us fits. Supposedly, it was fixed so that he could use the proximity switch through the Plexiglas on his tray, well, it didn't work today when he tried it. Back to square one for the hundredth time.

Colin had his new teacher today. The regular classroom teacher has been on maternity leave and is back. The sub and the regular teacher are going to job share and it sounds like a good solution for everyone. I think he had a good day. I didn't catch Priscilla before she left. I mostly heard him 'cooing' a lot through the monitor.

I'm not even sure what I did today. I guess I did a lot of puttering. And I did take a nice nap with Moxie.

Julia was here for a bit and did her thing.

Gene had a holiday today so he spent the afternoon out and about doing whatever it is that he does ;-)

Casey had some down time in his room after school, then had a shower and got in snuggly PJs. He wanted to watch some football but Colin had hogged the TV in the living room and I hogged the one in the yellow room so he got stuck watching a video in the wish room--but he was happy!

AC spent some time with Colin. Colin doesn't always reciprocate like Casey does because he is so fixed on his cartoon programs but she snuggled in with him and half napped while keeping him company.

Oh, Julie brought me some peppermint bark that she had bought from Costco...Yum. Peggy and I were talking about how we hadn't had any this year--or even seen any, so I was quite happy to have some. I'll even share it because there's quite a large bag full.

Right now I'm watching Enough Already with Peter Walsh. I liked him when he was on Clean Sweep so I'm glad to see him on a similar-type show.

Random pic of the day:

New Header!

Who loves my new header???? Thank you so much, MJ! It is AWESOME and very fitting!

Sunday, January 2, 2011

Last day before school starts!

The boys want to get lots of computer and wii in today since school resumes tomorrow. Goal for the day is to teach Nana H how to play wii!

...........................

Whew. It seems like all I did was go, go, go today and nothing is completely done. I hate that!

Casey had a little bit of a restless night as the night nurse kept fiddling with him to try to get his respirations down. I finally said to give him some Tylenol and when she told him, he immediately went down to 15! She's not here that often so I sleep on the couch in the living room so that I'm available. She only woke me that one time but I felt like I didn't sleep much. I didn't even take a nap today so I deserve to go to bed early (if you're reading this, dear).

I broke Nancy in with wii bowling. She finally got the hang of it and almost beat me! I think if we start slowly, she'll eventually be able to play the more complicated games.

Then we finally tried Casey's Oceans game. It's really cool and intricate. There's a lot to explore and learn. I think that Casey should get to use it for some credit in science! The funniest thing is that we got GENE to play. He did it for quite a while and he caught on quickly.

Casey's favorite part of the day was watching the Patriot's. He also liked watching the sports talk station.

Colin's favorite part of the day was playing wii baseball with me. He liked it because I kept yelling at my fielders.

Gene's favorite part of the day was probably sleeping in, or eating Julie's oyster stew or his homemade turkey soup.

One of my resolutions is to get outside for at least a few minutes a day (I flunked Day 1). I spent a few minutes cleaning out my car (found some weird stuff in it from when Peggy used it while she was here) and wiped the dash and shook out the floor mats. Then I took out some of the junk that has accumulated in the van and wiped that down a bit. Thrilling, I know!\

Worked my butt off boxing up Christmas books, CDs, odds and ends and there's still more. Sigh.

Saturday, January 1, 2011

1-1-11

Nothing too interesting happened today.

The boys watched a couple of Christmas videos since they're going to be packed away soon. We always keep a couple out all year, though, since Colin tends to go through phases when he is obsessed with HoHo movies. We also keep a bunch of movies on DVR--you never know when he'll insist on watching The Miser Brother's Christmas!

I packed up all the kitchen Christmas stuff.

Gene made a mess of the kitchen making turkey soup and pea soup. How lucky are we??

Casey had his tubby early today.

I watched quite a bit of the premier of The Oprah Network. It sounds like their will be some good programs to watch this winter and spring.

Both boys have been pretty spitty today and Colin has needed/wanted his bipap for the majority of the day...I hope it's just a fluke and they're not getting the cold that has been going around. They've been so healthy this fall...

Happy New Year!

Happy New Year to everyone who reads this blog (and to those of you who haven't found us yet, too, LOL!)
I've used Live Journal for blogging since 2005, I believe, but my new plan is to use this format since so many more families use it--so we will be found easier. I hope I can get used to it!

............

We had an upside down New Year's last night. I stayed awake later than Gene!! Neither of us made it to midnight, but that's okay. The boys actually didn't fall asleep until about 11:00. We brought the boys into bed right before Brooke came at 10:00. After getting them all settled, Casey wanted "drawers." And then they had to read one book. "Drawers" is when Brooke goes through multiple drawers of the boys treasures and they play with them all. Colin's favorite is the different 'mood' readers (pendant, stone, ring, fish) that tells his mood and/or fortune. Casey likes when Brooke does silly stuff like putting plastic sea creatures all over his head and arms. Go figure; that's my boys!

It's quiet this morning. I like it.

Still lots of Christmas to put away. And, it's time to go through the boys' game closet and give away some of their games/toys so the new ones can fit!

...........

Casey had a fun day yesterday. Julie and Joseph (her 12 year old nephew whom we've know since he was little) came and picked up Casey and Nancy H and headed to the mall. Everyone came home with tons of goodies! Nancy bought Casey two winter hats; a Boston Red Sox one and a UVM one. They were a steal at Lids for $5 each! Julie got Casey a Red Sox winter hat that looks like a baseball cap. AND, he got Don't Wake Daddy. I know, I know, a very young game, but the boys like being silly and they've wanted it for a while. Julie got it on sale at Kohl's for $10 and she used her Kohl's cash. (Nice nurses we have, huh?!) Casey spent some of his money on a used Sponge Bob Wii game from Game Stop. Joe bought some stuff and Nancy and Julie did, too.

Colin spent the day with Lauren playing Wii, and I mean ALL day. He is a Wii-Head!

I did my usual 'trying to organize' and put Christmas stuff away. Julia was here and helped. She also did some cleaning in the Wish Room which really needed it badly.

Gene, well, not sure what he did. He was gone most of the afternoon. He came home and messed up my kitchen. He did make some killer shrimp dip and Tom's Special Bean dip (with burger and pepperoni and cream cheese...).

Aunt Chris was here and brought some Chex Mix, chocolate tarts and fresh pineapple.

We had a lovely smorgasbord for our Happy New Year celebration.

Gene popped a couple of poppers at random times. No real countdown or party hats for us this year.

..........

Hmm, 9:14 and all are sleeping. Let's see if I can get a project done before the crew wakes!