Tuesday, September 27, 2011
Monday, September 26, 2011
We are all so glad that Gene (Dada) is home! He was only gone for one night but he was sorely missed (is that what I meant to say?) The biggest pain in my butt was Jaxon. Oh, how he missed his master! He's a good sleeper at night but during the day he is a clingy terror. He followed me around and got under every step I took. We went outside 14 times today! He loves to play, play, play. He gets pretty rowdy and naughty. Then he goes inside and drinks tons of water since he's parched from playing and then, of course, he has to pee, so the cycle continues.
Claire was here to create a splint for Colin's new micro switch. I think it's going to work well. I have some video of him using it but my Flipshare software had some error on it. I hope it's not screwed up completely.
Gene finally made it home around 5 something. He had stopped at Price Chopper to pick up some dinner. AC stayed home but Mom and Dad came over. Gene made some nice steaks on the grill (and he didn't over cook them) and some panko breaded broiled haddock. We had rice pilaf, green beans, seeded Italian bread and raw carrots for mom. Cupcakes that I made last night for dessert and/or apple pie.
Casey wanted to sit with us a dinner tonight. That's very unusual. He used to enjoy it but then he went through a phase when he didn't want to and no matter what we did he would yell. We asked him tonight and he said "yes" and was good as gold! He used his DynaVox (mostly) appropriately....well, he did tell Grandpa to "shut up" but it was done in jest. He thought it was funny when he kept telling us to turn out the light. Gene kept on making up stories what would happen if he kept the light off--Grandpa would bite off his lip and we'd have to put a bandaid on it, or Grandma would eat Jaxon by mistake. He loved it! I was very proud of my boy!
Casey had a good day at school. He was a little better than 'medium' good. He had a few breaks but also earned some free time.
Colin had a pretty good day, too. I think he lost it a little bit when Cheryl came to shadow Priscilla, but I heard him doing some good listening and some participating.
It sounds like Gene and Dad had a good time on their adventure. They had a nice dinner in Newport and watched the Red Sox/Yankee game until almost midnight (I was home watching here!). Red Sox finally won in the 14th inning, whew, we needed that! They were up early and hit the pond/lake and fished and floated and enjoyed the beautiful day. Gene even took his shirt off and got burned. Dad caught more fish than Gene, as usual, but no keepers. They enjoyed the lunch I packed. I'm glad that they got to do that again. I know they both looked forward to it each summer.
Colin is sound asleep. Gene read the book that he's reading with Casey to both of them tonight since Mom and Dad were here late and then didn't get alone time. It must have bored Colin to sleep! But, he also does have a little temp going on. When I got him in bed I noticed his arms were freezing but his body was very warm. He also looked a little glassy-eyed. When I took his temp he was 99.9 axillary. Tylenol given. Hoping he sleeps well tonight.
Heartwarming story: Another must read/watch. I promise it won't disappoint.
http://alittlemageinthefamily.blogspot.com/2011/09/ive-got-van.html
Claire was here to create a splint for Colin's new micro switch. I think it's going to work well. I have some video of him using it but my Flipshare software had some error on it. I hope it's not screwed up completely.
Gene finally made it home around 5 something. He had stopped at Price Chopper to pick up some dinner. AC stayed home but Mom and Dad came over. Gene made some nice steaks on the grill (and he didn't over cook them) and some panko breaded broiled haddock. We had rice pilaf, green beans, seeded Italian bread and raw carrots for mom. Cupcakes that I made last night for dessert and/or apple pie.
Casey wanted to sit with us a dinner tonight. That's very unusual. He used to enjoy it but then he went through a phase when he didn't want to and no matter what we did he would yell. We asked him tonight and he said "yes" and was good as gold! He used his DynaVox (mostly) appropriately....well, he did tell Grandpa to "shut up" but it was done in jest. He thought it was funny when he kept telling us to turn out the light. Gene kept on making up stories what would happen if he kept the light off--Grandpa would bite off his lip and we'd have to put a bandaid on it, or Grandma would eat Jaxon by mistake. He loved it! I was very proud of my boy!
Casey had a good day at school. He was a little better than 'medium' good. He had a few breaks but also earned some free time.
Colin had a pretty good day, too. I think he lost it a little bit when Cheryl came to shadow Priscilla, but I heard him doing some good listening and some participating.
It sounds like Gene and Dad had a good time on their adventure. They had a nice dinner in Newport and watched the Red Sox/Yankee game until almost midnight (I was home watching here!). Red Sox finally won in the 14th inning, whew, we needed that! They were up early and hit the pond/lake and fished and floated and enjoyed the beautiful day. Gene even took his shirt off and got burned. Dad caught more fish than Gene, as usual, but no keepers. They enjoyed the lunch I packed. I'm glad that they got to do that again. I know they both looked forward to it each summer.
Colin is sound asleep. Gene read the book that he's reading with Casey to both of them tonight since Mom and Dad were here late and then didn't get alone time. It must have bored Colin to sleep! But, he also does have a little temp going on. When I got him in bed I noticed his arms were freezing but his body was very warm. He also looked a little glassy-eyed. When I took his temp he was 99.9 axillary. Tylenol given. Hoping he sleeps well tonight.
Heartwarming story: Another must read/watch. I promise it won't disappoint.
http://alittlemageinthefamily.blogspot.com/2011/09/ive-got-van.html
Wednesday, September 7, 2011
Wasted day :(
Well, it was a wasted day for me. Gene worked from home (luckily for me), Casey had a thumbs up day at school, and Colin got a couple of runs (although the TV wasn't working for much of the day) and even the dog and cats were content. Me, I had a migraine. I had some little niggling headaches throughout the weekend that I was able to stave off with 600mg of ibuprofen, but today it hit hard. I was having some weird flashes of dark and light and I was nauseous. So, after Casey got off to school and Colin had his neb and meds and Lauren came, I hit the bed with my icepack. I know I drifted off pretty quickly and slept hard for a while.
I came to this afternoon and ventured downstairs for a while and ate some fritata that Gene had made. Oh, and somewhere in there I made a fruity, icy smoothie. Cold always does my head and stomach good.
Aunt Chris came with DVDs for the boys. A new Scooby Doo movie came out on yesterday and AC was right there to get it for her Colin! She found a Super Bowl DVD for Casey so he was very happy, too.
Nurse Julie came over with some yummy food; ham, scalloped potatoes, baked beans, mixed veggies and carrot cake. Delicious!
I hope I can sleep tonight! Casey and Julie are in the shower. Colin is watching a movie in the wish room. He decided that he wanted to stay out there this afternoon/evening. Gene went out for a bit and left me with the stinky cheese dog. He really smells like cheese! Darn rain!
I came to this afternoon and ventured downstairs for a while and ate some fritata that Gene had made. Oh, and somewhere in there I made a fruity, icy smoothie. Cold always does my head and stomach good.
Aunt Chris came with DVDs for the boys. A new Scooby Doo movie came out on yesterday and AC was right there to get it for her Colin! She found a Super Bowl DVD for Casey so he was very happy, too.
Nurse Julie came over with some yummy food; ham, scalloped potatoes, baked beans, mixed veggies and carrot cake. Delicious!
I hope I can sleep tonight! Casey and Julie are in the shower. Colin is watching a movie in the wish room. He decided that he wanted to stay out there this afternoon/evening. Gene went out for a bit and left me with the stinky cheese dog. He really smells like cheese! Darn rain!
Tuesday, September 6, 2011
Making progress on Colin's new chair and a fun package
Casey was off today in a good mood. He ended up doing okay. He had some time outs in the hallway but he spent some time in class, phew! Things are still new and I know he likes to have things more concrete and settled than they are right now, but Mel is working hard to nail down his schedule and routine!
Colin, well, he had a stinky morning. Lots of complaining and not listening very well. He got lots of strikes and outs. I'll have to go and count). He made 10 cents for one good listening period.
Colin did better this afternoon and made a quarter :) The TV had some issues. I guess the drops in his other classrooms (his homeroom/main class is fine) aren't working.
Spent 2 and a half hours with the "chair" people. Missy, (The Medical Store), Paul (seating for Children with Special Health Needs) and our rep from Invacare were here. THANK YOU SO MUCH, Nikki, Heather and Sandy for sharing pics of your kids in the Solara/Spree chairs and paving the way to getting Colin a wheelchair that he can be comfortable in and meet his needs! It's so nice not to have to start totally from scratch! I had pictures of 4 kids that Missy printed out so that we could see what parts/accessories/modifications that they made so that the kids can lay flatter (like our Easy S medical stroller) and have room for equipment and to have a functional push handle, etc. The rep was very impressed and excited to see what others have done.
Jaxon was a super pain in the butt while we were trying to get this all done. Luckily, all three of the "chair" people like dogs so they dealt okay with him hopping all over us and 'snuffling' their hair and bringing them his toys and barking when I finally put him in his crate, sigh. Julia even tried to bring him out but he was so hyper and wild that she couldn't get him to stop gnawing on the leash!
Today we received our package from Busy Bee Sewing for SMA (Peggy McBee). Peggy makes some beautifully sewn things and profits go to SMA research. I ordered 3 covers for oxygen tanks; 2 'E' tanks and an 'M' tank. They look great! I wanted something for older boys and since we're re-doing Casey's room in flames, I asked if she could use flame material...Here's Casey with a pillow case that she added to our order!
And, here's one of the oxygen tank covers.
Check her out on Facebook...BusyBee Sewing for SMA or on Etsy
"100% of the proceeds from this shop will be donated to Sophia's Cure Foundation (http://www.sophiascure.org/) to help fund Gene Therapy Research for SMA."
Colin, well, he had a stinky morning. Lots of complaining and not listening very well. He got lots of strikes and outs. I'll have to go and count). He made 10 cents for one good listening period.
Colin did better this afternoon and made a quarter :) The TV had some issues. I guess the drops in his other classrooms (his homeroom/main class is fine) aren't working.
Spent 2 and a half hours with the "chair" people. Missy, (The Medical Store), Paul (seating for Children with Special Health Needs) and our rep from Invacare were here. THANK YOU SO MUCH, Nikki, Heather and Sandy for sharing pics of your kids in the Solara/Spree chairs and paving the way to getting Colin a wheelchair that he can be comfortable in and meet his needs! It's so nice not to have to start totally from scratch! I had pictures of 4 kids that Missy printed out so that we could see what parts/accessories/modifications that they made so that the kids can lay flatter (like our Easy S medical stroller) and have room for equipment and to have a functional push handle, etc. The rep was very impressed and excited to see what others have done.
Jaxon was a super pain in the butt while we were trying to get this all done. Luckily, all three of the "chair" people like dogs so they dealt okay with him hopping all over us and 'snuffling' their hair and bringing them his toys and barking when I finally put him in his crate, sigh. Julia even tried to bring him out but he was so hyper and wild that she couldn't get him to stop gnawing on the leash!
Today we received our package from Busy Bee Sewing for SMA (Peggy McBee). Peggy makes some beautifully sewn things and profits go to SMA research. I ordered 3 covers for oxygen tanks; 2 'E' tanks and an 'M' tank. They look great! I wanted something for older boys and since we're re-doing Casey's room in flames, I asked if she could use flame material...Here's Casey with a pillow case that she added to our order!
And, here's one of the oxygen tank covers.
Check her out on Facebook...BusyBee Sewing for SMA or on Etsy
"100% of the proceeds from this shop will be donated to Sophia's Cure Foundation (http://www.sophiascure.org/) to help fund Gene Therapy Research for SMA."
Saturday, September 3, 2011
Waiting for the S family and going to Lady A
Well, we're WAITing for Connie, Justin and Daniel to arrive. There's really no rush, except that we're anxious to see them ;-) They are going to sleep in our living room--should be fun!
Casey has decided that he does NOT want to go to the concert. Colin really wants to go so we're going to take him instead. It's funny because Casey has always been the music lover and adventurer. But, he's been overly vocal at the last several events we've been to--the movies and Big Time Rush concert. He hasn't seemed like he's enjoyed himself so he's telling us he doesn't want to go and we're going to honor that (instead of what we'd usually do and make him go anyway since we're thinking that he really DOES want to go....but maybe we're wrong).
Still waiting!
Casey has decided that he does NOT want to go to the concert. Colin really wants to go so we're going to take him instead. It's funny because Casey has always been the music lover and adventurer. But, he's been overly vocal at the last several events we've been to--the movies and Big Time Rush concert. He hasn't seemed like he's enjoyed himself so he's telling us he doesn't want to go and we're going to honor that (instead of what we'd usually do and make him go anyway since we're thinking that he really DOES want to go....but maybe we're wrong).
Still waiting!
Friday, September 2, 2011
Full day #2
Both boys did a little better in school today. Casey spent some time in class although he did need some time out but earned some free time, too. He chose to walk through the halls for his free time. He loves exploring new places! Colin seems eager to start his new behavior plan. This year he wants to do a baseball themed plan. He'll earn runs and outs for positive and negative behaviors. Positive behaviors: listening quietly, participating, using his DynaVox to express his feelings. Negative behaviors: closing his eyes, 'yelling', not participating, not using his DynaVox to express his feelings/needs (whining). He'll earn dimes and quarters for runs that he makes. When he strikes out in the morning he looses picking his activity for break time. In the afternoon, if he strikes out, he will not get to play Wii or computer or watch movies and he has to finish any school work/projects before watching TV. (I just can't see taking TV away from him totally because it would be a punishment on us adults!
Thursday, September 1, 2011
Full day #1 and hair cut
Well, I had a good day; can't say the same for the boys. Casey had a very loud day at school. Mel said that she couldn't really blame him since everything was brand new and very disjointed.
Colin had some good parts, and not so good parts, of his day. He closed his eyes quite a bit and did lots of 'owing'.
I met AC at her house and we went to The Hair Studio. She had her eyebrows done by Kathy and I had my hair cut by Margie. Ahhhh! She cut it in layers and shortened it up a bit and was excited about my 'natural wave'. I never thought of myself as having wavy hair but in my old age it seems to have become somewhat wavy. We'll see how it looks after I wash it and brush it out tomorrow!
Then we went to Chef's Corners. Delicious chicken salad sandwich on homemade wheat bread, side salad and iced tea. We got dessert to go. I picked a triple nut bar---so sweet and nutty and very scrumptious!
I was feeling badly for not buying any new clothes for Casey's start of 9th grade so AC and I went over to Old Navy. I found a pair of black jeans but that's about it. They had way more girls and womens' clothing than boys. I had a $10 gift card so the jeans were $5.
Still had some time left so we hit Kohls. Hit the jackpot there. Found Casey some tan jean-like pants and some gray parachute kind of pants. I also found 2 long sleeved shirts and a maroon short sleeved one. I used my gift card and 15% coupon and got a great deal.
Headed home after that. Oh, wait, I got to see AC's new paint job in her living room. She had 3 walls painted a pretty blue. I helped her put back some of the switch plates and move the china cabinet back into place.
Colin had some good parts, and not so good parts, of his day. He closed his eyes quite a bit and did lots of 'owing'.
I met AC at her house and we went to The Hair Studio. She had her eyebrows done by Kathy and I had my hair cut by Margie. Ahhhh! She cut it in layers and shortened it up a bit and was excited about my 'natural wave'. I never thought of myself as having wavy hair but in my old age it seems to have become somewhat wavy. We'll see how it looks after I wash it and brush it out tomorrow!
Then we went to Chef's Corners. Delicious chicken salad sandwich on homemade wheat bread, side salad and iced tea. We got dessert to go. I picked a triple nut bar---so sweet and nutty and very scrumptious!
I was feeling badly for not buying any new clothes for Casey's start of 9th grade so AC and I went over to Old Navy. I found a pair of black jeans but that's about it. They had way more girls and womens' clothing than boys. I had a $10 gift card so the jeans were $5.
Still had some time left so we hit Kohls. Hit the jackpot there. Found Casey some tan jean-like pants and some gray parachute kind of pants. I also found 2 long sleeved shirts and a maroon short sleeved one. I used my gift card and 15% coupon and got a great deal.
Headed home after that. Oh, wait, I got to see AC's new paint job in her living room. She had 3 walls painted a pretty blue. I helped her put back some of the switch plates and move the china cabinet back into place.
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