Wednesday, February 26, 2014

Hair cuts, the mall, dead battery and whew, tired!

Today was the only day that we had two nurses for the whole vacation, so we planned to take advantage of that and get out of the house.  Gene could stay home and work in peace (although that wasn't totally the case because he had to deal with Jaxon and Jaxon hates it when me and the boys are away from the house--he tends to be very clingy and a pain in the butt).

Made appointments for the boys at the JC Penney salon in the University Mall for 11:00.  We had never been there before but thought we'd give it a try instead of the place in the blue mall--hey it saved us getting the boys in and out of the van another time. 

Julie and Casey did their thing while Karyna, Colin and I took off for Kohl's.  I returned some things and then we hunted the racks for some good sale items.  Found a couple of long sleeved shirts for Colin and some comfy lined wind pants.  I TRIED to look for some thing for myself but Colin was not very cooperative and I couldn't concentrate so I ended up with one pair of jeans for myself.

Of course Colin was perfectly happy in Game Stop while we looked for a wii u game for him.  Casey and Julie met us there.  Colin picked Duck Tales remastered one that sounds pretty fun and adventurous.  I also picked up a new Skylanders Swap Force character.  Casey asked me to buy a Madden football game to play with Dad but I had to say no because Daddy is not a wii player nor does he have the time, and the sports ones seem like they are so complicated that I don't think Julie nor I could figure it out.   I hate saying no, but I guess it's good for him to hear sometimes. 

Headed over to Pennys.  I had mentioned before hand that both the boys had special needs and were in wheelchairs but I still think they were a little freaked by the extent of our special needs but everyone ended up handling it well.  There was actually a lot of  room for us which is a good thing with 4 people including one large power chair and one large laying down wheel chair.  Turns out the young girl doing Casey had just graduated and was brand new at the salon.  I asked Julie about it because when I went over a couple of times to check on them I could see her hands shaking :)  Julie is a pro at holding his head for hair cuts so I spent most of the time helping Karyna and Colin.  I put his chair up quite a bit so it didn't break the person's back.  But then the handle is in the way so it takes quite a bit of moving and holding and flipping to get everything right.  Colin kind of actually enjoys getting his hair cut so he didn't mind all the fuss and flip-flopping.  Our woman was very talkative and took it all in stride.  Tomorrow we will have to dedicate part of the day cleaning chairs and wiping them down and getting mall germs and hair off. 

Oh, also, tomorrow someone is coming to look at our front door area.  We applied for a grant last year to have a ramp built.  We've never had a proper ramp out our front door.  We have a little cement pad outside the door and then a piece of plywood from the cement pad to the driveway.  Not very safe, or attractive but it's worked for years.  It's a very small angle so it doesn't have a lot of play in the plywood, if that makes sense.  So, we'll see what they say.  We'd LOVE to make the whole door way wider.  Casey's chair fits through, but it's just a standard 36" door so it takes some careful maneuvering. 

After hair cuts we cruised around looking for bargains in the boys department.  Casey is in the half boys/half men department.  It was hard to find jeans for him.  I've been trying to find him black jeans.  He's an 18 or maybe a 28/28 but those sizes are so hard to find.  He insisted he needed some jeans so I found a blue pair for him and he was happy.  Found both boys some long sleeved shirts and a tee shirt or two.  I think I got 7 things for $22.00, thanks to the sales and Karyna's coupon for $10 off $25 or more.  Good deals.  Wish we had time for more perusing but we were TIRED and Julie, Karyna and I were hungry, hungry. 

Headed out to the van.  VAN WAS DEAD.  Ugh.  We knew there was a need for a new battery but Gene didn't get a chance to get one yet and it had started up fine this morning.  I think I might have helped killed it because I only had it on auxiliary when I activated the lift.  It worked for the loading up but when Julie went to start it--nothing but clicks.  She's good at this stuff so she immediately got out and talked to security.  (I was stuck in the way back).  They came and did their thing.  While they were doing that Karyna took advantage of the time and ran in and got some McDonald's for us.  I had sworn off fast food but was starving and that's what was available, so I said get me a cheese burger and a diet Coke.  She came back with a Double Quarter Pounder with Cheese meal.  I've never seen such a large fry before!  I ate some fries and had a couple of bites of the burger and it was gross.  I don't think I'll be missing fast food burgers after this.  Of course, Gene finished the burger for me :) 

Unloaded everyone.  Casey headed into the shower.  I don't know how Julie had the energy to do it but she did it.  After Colin was settled I headed up to take a rest as I was starting with a migrainey type headache.  600 mg of Ibuprofen and a quick nap with snuggly Nuggie and I was feeling better.

Poor Colin was yearning for wii but we didn't get to because I had the whole house to straighen up and formula to make, etc. 

No pictures today, sorry!

Tuesday, February 25, 2014

The Lego Movie and Doing up Essex

Today Colin and I had a date.  He's been looking forward to seeing The Lego movie ever since we first saw the trailer ages ago.  And, we've been playing Lego City Undercover so it's really relevant to us, um, I mean him.  Casey hasn't had the best behavior at the movies so he was going to do something else with Nurse Julie.  At the last minute Gene decided he could go for a couple of hours.

We packed pack and got the boys in their chairs.  It was FREEZING.  Is it spring yet????

The whole way down to the theater Colin's vent was beeping.  We tried everything to lessen the leak.  Luckily, I brought a mask with me so I switched him to that when we got there. We went to a 12:05 show so it was very quiet there.  I had to have some popcorn and a red ICEY so I got a small popcorn and a medium ICEY (I wanted to get larges to get the free refills, but I just couldn't bring myself to do it for fear of eating the whole large bag myself).  It was a little awkward pushing Colin with the portable cougher on my shoulder and juggling a bag of popcorn and a drink, but we made it down to the T Rex theater.  We haven't seen a show in there in a couple of years so it was a treat.  It's a pretty large theater with comfy seats, great audio and lots of choices for a wheel chair.  We found a good spot and settled in.  Off with the blanket, coat, hat.  Adjust chair for perfect viewing.  Reposition so he was comfy.  Eat popcorn, and drink magically delicious frozen ICEY.  There were only a couple of other families in the whole theater so I didn't feel to self conscious with Colin's jabbering.  If you've ever watched TV or seen a movie with Colin you know he is never quiet.  He is full of Yays, and OOOHs, and OH Nos, and HA HA HAs.  And then he started with OWs.  I had to take off his AFOs AND socks--if I hadn't, the whole theater would have probably rioted because he wouldn't have let up with his OWs until I did.

The movie was good and Colin really enjoyed it.  I liked it a lot but wasn't blown away.  I was hoping for more "Lego-ness", I guess.  I guess I was hoping it would be more like our wii games.  The end is kind of cool, how they work in the real world with the lego world so that was a surprise.

After the movie we went into the lobby to call Gene and Julie popped in.  Bonus!!  (I needed to go to the bathroom really badly)   Dropped a couple of dollars in the grabber machine but didn't have any luck.

Headed out to the van and there was a snow squall!  By the time we got Colin into the van he was covered in snow!

So then we heard about the exploits of the other three.  Julie and Casey were to go to Big Lots while Gene did some work and had a meeting.  Apparently there was no one on the call so he found them in Big Lots.  Afterwards, Casey and Gene wanted to go to the parts store.




Casey has a fascination with restaurants. He likes to Google Dunkin Donuts, Subways, etc. in different cities.  Weird, probably :)   But he really wanted to go to the Chinese buffet.  So they went in to check it out and of course someone was right at the door to ask "three for lunch?"  So they sat down.  Gene was going to buy Julie lunch but she declined so she and Casey people watched and watched Gene devour his plates of food.  I had given him strict instructions to not go out in public because he wasn't looking his best, but he didn't heed my words.  Oh well, he is what he is :)


Daddy devouring his lunch

After the buffet, they still had time to go visit "Grandfather" and "Grandmom".  Before we left we had asked Casey what he wanted to do and he said he wanted to go to GrandFather and Grandmom's home and go inside.  They were able to go and visit with them but only in the driveway because there's no ramp and they have quite a few stairs. 

So Casey had a grand time and didn't want to go home.

Julie and I got some wii-ing in so Collie was very happy.  Casey Google mapped and did his thing.

It was a good day.

Monday, February 24, 2014

Spa Day

Today was our spa day.  February school break tends to lend itself to wanting pampering so we indulged the boys in their desired treatments.

For Casey it was teeth brushing with homemade baking soda and peroxide paste, face exfoliation with the special vibrating tool, followed by an Icelandic facial mask. He also dallied with orange and blue hair coloring, which was followed by a steamy shower.  Now he is in his spot in the living room with his DynaVox--talking and Google mapping, and listening to Pandora Country Christmas radio with his hot pack on his feet,

Casey and Nurse Julie starting the facial treatment.





Can't forget the cooling eye gel mask!

Poor Jaxon didn't know what to make of Casey's face!


Starting hair coloring.



It's hard to see but it looked pretty good :)

Colin was very happy starting off his day with computer game walkthroughs on his ipad.  Then he indulged in a warm, bubbly foot soak.  This was followed by time on his belly and getting a full body massage (all while watching his ipad).  Then he got dressed in lounge wear and picked out some fresh tattoos (thank you for the Sponge Bob tattoos, Colby!).  Then came his hot pack on his feet.  Last but not least was his orange and blue hair coloring which he chose to keep in (I think more because he's not a fan of being bothered with a shower rather than really liking his hair!).   Colin is immersed in his shows, snuggled under his fleecy blanket, hot pack on feet, humming away watching his shows. 

Ahhh, so warm and bubby!



Belly time and massage time.

New tats!  Mystery Machine and Sponge Bob.

Colin calls his hot pack his "aaaahhhs"


So lucky that I don't have a girl!!  I would be a horrible hair fixer!


Saturday, February 15, 2014

Happy Valentine's Day and a big storm

I got up at my regular time so that I could do my routine and let Staci go.  She had the option of sleeping upstairs in the Aunt room but she thought she'd be fine.  We heard lots of snow plows out and I could see cars moving pretty well on Route 7 and West Milton Road.  I let the boys sleep, of course!

Karyna made it for 8AM.  I was pretty surprised to see her so early.  Nancy H made it for 9:00.  She was not happy but she made it :)  Gene had tons of work to do so he was stressed out working and worrying about the snow and driveway--and then we had a little leak again in the wish room!!  I guess it was warmer than it had been so some of that snow decided to melt into the boys room.  Poop.

I made this for Gene:  A Valentine's Jib Jab 

For some reason I was digging in our old website and I found these:

Valentine's Day 2006

and

SMA Support Valentine's Day 2006

Boys slept in a bit. They did their thing.  Casey got up in his chair and played some computer with Nancy and flipped channels.  Colin watched some movies and he and Karyna played a memory game--I made them use their brains even though it was a snow day! 

Gene plowed some and worked.

I was very surprised that Aunt Chris came over.  She even went to Kathy's and got her nails done and a pedicure!  She really must have wanted to have nice feet and nails for Florida if she went out while a Winter Storm Warning was still in effect.  AND, she wanted to see her boys, of course, for Valentine's Day. 








 Aunt Chris gave Casey Cloudy with a Chance of Meatballs 2 DVD and Colin got Free Birds.  We gave Casey the choice to pick the movie we'd watch but he wouldn't pick so Colin picked Free Birds.  It was pretty good, but I didn't watch the whole thing--I had to make formula and fix up their room for bed time, etc., but I'm sure I'll have a chance to watch it again.

Our friend from the corn rows, I mean Indiana, Hannah, sent the boys a fun Valentine's Day package.  Casey got cool dude stickers and Colin got wrestling ones and they each got a bouquet of heart shaped lollipops.  AND, Hannah colored and decorated very cute cards for each boy.  Thank you, Hannah P!!!




Gene wanted to make something a little special for dinner, and um, he tried.  He had picked up a rolled steak with spinach and cheese.  In a perfect world it would have been great, but for me, not so much.  Some of the steak was kind of yucky and rare and there was way too much slimy cheese.  The rice pilaf and broccoli were good!  He also picked up a black forest cake with yummy cherries so that ended everything on a good note. 

Have the boys again tonight--Casey had better be good! 

Thursday, February 13, 2014

Snow Day for tomorrow!!!

SNOW DAY for tomorrow!!  We already got the automated call.  It's supposed to be a doozy.  Each time I check Weather Bug there is an increase in the amount of inches we're supposed to get.  The main reason I'm glad is that I don't have to worry about Casey getting to/from the bus down the driveway in the snow, and worrying all day long about his ride home on the bus in crappy weather.

Bummer for Colin because he bought two carnations for two of his 'girl'friends and they were supposed to be given out on Friday/Valentine's Day.   

Gene ran out for some groceries much to my chagrin.  But, he came home with some beautiful roses for me.  This time he was able to find yellow ones, which he knows are my favorite.  


 

Wednesday, February 12, 2014

Colin rocked the Science Fair!

Colin, Priscilla and Karyna spent the day finishing up Colin's science fair project.  Finished writing, printing, matting, gluing, etc.  Finally, done!  Priscilla brought it over to school and set it up.
I napped (had the boys last night and Casey was a total restless mess).   I had help from Ryan Nelson on how to make Colin's experiment pictures and videos into a slideshow.  So easy once he walked me through it. 

Decided that Gene and Casey would stay home because Gene was feeling pretty crappy and Casey has his ear infection going on and was pretty tired out.

Aunt Chris came and we got ready to head out.  Called Priscilla and Rick to let them know we were leaving...she was there already with Rick.  Rick (Priscilla's husband) is such a good sport and came to help tote things and hang out.  Told us to park out back and drive up on the sidewalk (it was okayed for us to do that).  So we had a perfect spot.  What a Zoo!!  But I really think they did a good job with set up and that kind of stuff.  Everybody had a table and a number and it was pretty organized.

Colin had to be at his table to be judged from 6-6:30.  We set up the ipad and looked around and chatted and not too long later the judges came.   Colin got shy when the judges came and shut his eyes but Priscilla talked to them and explained how he did things and how much work he put into it. I think they were impressed. 

After he was judged (and we have no clue as to how he did or what the rubric was for judging) we toured many of the projects.  Lots of great ideas and hard work in the gym!!  Colin talked with some of his friends and had a good time.  He really was excited!  My favorite part was a hug from Tom Keblin, one of Casey's middle school teachers.  He is teaching at a different school now but came back to judge and see his old cronies.

Daddy and Casey watched Emergency 51 while we were gone and had a fine time.  I think they missed us a little bit, though.  So all in all it was a successful evening and all went smoothly.  Pretty impressed with myself since I drove and parked and got Colin in and out all by myself and we had no equipment snafus or any mishaps.  Whew!












Tuesday, February 11, 2014

Ear infection for the big



It's a cake-for-breakfast kind of day today.

Casey had a little blood in one ear this morning.
Gene is not feeling well.
No nurse for Colin. No Julia coming today.
Gene is supposed to go into the office for meetings today.
I'm supposed to take a nap because I have the boys overnight tonight.
Dog almost knocked me off of my feet earlier.
Colin is high heart rating.
Dropped his 'pickers' (bipap mask) on the floor.
Couldn't connect with his class via Skype for advisory today.

But, things could be worse.
We might not have had cake in the house to eat.
Gene could be too sick to get out of bed.
We could have no nurse for Colin AND no nurse for Casey today.
Gene could have to go into the office EVERY day instead of being able to work from home a lot.
We could have MORE nights uncovered by nurses than we already do.
Dog could have literally knocked me off of my feet and hurt my back...
Colin could be having higher heart rates and tons of secretions and be unwell.
I could have made a hole in the plastic tubing of Colin's 'pickers'.
Skype AND VGo both could not have connected today.

So, it's going to be a GOOD day and I'm very thankful for it!

Monday, February 10, 2014

Yay for Nurse Julie!

Yes, the most exciting thing about our day was when Nurse Julie got us past a point in Lego City Undercover where Aunt Chris (AC), the boys and I had been stuck for about a week!  We tried and tried and tried but we kept getting the delivery truck blown up :(   Julie had even tried before and couldn't do it.  But since she and Casey came home at 1 PM, because they had been out in the community, she had more time to work on it.  And, she did it!!!  Big cheers and sighs of relief around here.  Julie immediately went for some cheese doodles afterwards because it was such a stressful time and to finally beat it was so relieving!  I guess Julie and I are both stress eaters!

Colin had a good day at school.  He payed attention well, and got some more writing done for his science fair project.  I don't think he's too far behind at all since many of the kids hadn't started their posters yet...and the science fair is Wednesday evening!

Casey did well at the mall. He did a lot of driving.  They ran into Cousin Tyler so that made it a bit more exciting.  Tyler was there buying his girlfriend a gift for Valentine's Day!  Peggy taught him well, especially since it was only Monday and Valentine's Day isn't until Friday!  You go, Tyler!!

Gene is kind of sick.  Not the drippy, blowing nose kind of sick, but is stuffy, has a weird kind of cough,  his eyes look pretty tired and he is very droopy.  Sigh.  So far the boys and I are unaffected and we hope to keep it that way.  Many SMA families quarantine themselves or their kids when sickness hits the house but we've not done that very often.  We try to be careful, of course, but even with nursing, we need both of us available to take care of the boys.  Maybe we're playing with fire, but it's worked for us. 

Though he wasn't too sick to go out to the store :)  He has a habit of heading out most afternoons to pick up groceries or visit a friend, or just drive around--I think it's his down time from us, ha ha.  I have my naps and he has his driving time.  He wanted to get some cold medicine and he asked me what I wanted for dinner and I said, "New York Pizza Oven" just on a whim and he said okay :)  We had an old gift certificate and he had been wanting to use it, so he decided to head out to the bay.  It was very good!  Love their pizzas, but $20 for one large Hawaiian pizza is crazy.

Staci comes at 9:00 on Mondays, yay!  I asked the boys who they wanted to read to them.  One said, Staci and one said no one.  So, Staci read a quick one to Collie.


Sunday, February 9, 2014

Sat and Sun.

I guess we are boring people.  We didn't do anything grand or exciting this weekend, nor did we even leave the house.  Well, Gene did his normal outings but he pretty much laid low, too.

I had the boys overnight Friday night and they were very restless again.  I started them off with Tylenol and ended up giving Casey some Ibuprofen.   They finally slept better after about 4AM.

Saturday Casey had his shower and that's about it.  It's crazy how the little, every day things take up so much time.

I guess the highlight of the boys day was watching WWE.





Sunday was pretty much just getting through the day.  Colin had his shower.  That's it!!

Friday, February 7, 2014

Scared for a second

This morning I had to go to Kinney's to get some photos printed for Colin's science fair project.  I haven't hardly been out at all lately because of the weather, scheduling, and trying to stay away from sickies.

I did my thing at Kinney's.  Headed home.  Turned left into our road and what do I see???  An ambulance stopped in front of our driveway.  HEART ATTACK!!  I had my blinker on and then after a beat or two I saw that the two people were laughing/grinning so I guessed it wasn't for Colin (Casey was at school).  They pulled back into the road after another couple of beats.  I ran into the house and didn't hear any beeps and saw Gene in the kitchen so I knew for sure things were okay.  WTH???   I recognized the man driver as one of the first responders that came in December when we called 911 for Casey.  Maybe he was telling the other person about the boys or maybe it was just a fluke that they stopped where they did.  Anyway, I was shaking and my stomach wanted to throw up.

Took an early nap and tried to regroup.  The boys weren't very good sleepers last night as they were both restless for some reason.  I finally gave Colin Tylenol and that seemed to help.  Between them being restless and me having a crimp in my neck, laying on Colin's feet two times to make the pulse ox go off, Casey's pulse ox going off because I pulled it off with my foot, Moxie sleeping on my face, and Nugget batting things off dressers--I did not have much sleep.

But, I managed to get up and do the routine; let dog out, feed dog, feed cats, turn on computer and coffee maker, make k-cup, take meds, give Casey meds, etc.  Then I got Gene up (well, actually Jaxon did by jumping on him while he was sleeping on the couch) and we got Casey into his old room and I started washing him up and getting him dressed for school.

Julie came and took over finishing up Casey and I helped Karyna do Colin.  Phew, done, everyone was ready on time.

Funny thing...I was walking towards the wish room and something caught my eye outside.  It was Barry, the bus driver, shoveling a path for Casey :)  Gene had taken my car out of the snow bank and made a mess and Barry must have seen it.  So I sent Casey on his way with two of my homemade rugelachs...one was supposed to be for Julie but she gave them both to Barry.

Oh, and Julie reported today that while Casey was on break today he fell asleep!  He had been grumpy and vocalizing a lot so he had to take part of his break (he gets out of his chair and lays down) with no music, magazines, etc.  She checked on him and he was totally out!

Wednesday, February 5, 2014

snow day for Casey and belly brace prep

 I declared a snow day for Casey today.  No public schools were cancelled in Chittenden County but it looked pretty nasty out to me and was only supposed to get worse.  Nancy H came and she masked up because she had been fighting a cold.  She only stayed until noon to go home and get rest and to beat the weather. 

Casey got up for a while and read some of his ebook; Speak.  Watched some TV, some football, etc.  I think he thought it was funny that he didn't have to do school and Colin still did. 

I made another batch of rugelach today and I will say they were even better than last batch.  I think there was more apricot in them and I think I had a perfect amount of nuts/cinnamon/nutmeg.  It also helped that I used the Penzey cinnamon Peggy gave me, and also the Madagascarian vanilla. 


Deb from Biomedics came today at 1:00 so Colin got to finish school a bit early.  No sweating or high heart rates when she worked on him.  I think he is finally getting used to her after all these years, ha ha.

We've decided to go with a 2 piece belly brace/ TLSO.  We've always used a one piece that has Velcro straps in the front and a cut out for his g-tube.  Now that Colin is getting bigger it's pretty awkward getting him into it so we're opting to try this.  He'll have Velcro straps on each side to fasten and hold him snugly in.  We'll have the first fitting in a couple of weeks and Deb will mark out the g-tube hole and cut it out at the shop and do another fitting.  Colin was glad to pick out a new print for his belly brace.  We'll keep it a secret and unveil it when he gets to keep it :)

I always encourage Karyna and Colin to do a 'non-screen' activity after school before he puts his face back into an ipad, computer or TV.  So today I started pulling out some games and things that I want them to focus on.  I'm trying to get Colin to use the abstract thinking/predicting part of his brain.  Today they got to choose between Mr. Potato Head Yahtzee, Red Sox/Yankees Tic-tac-toe and Scooby Doo concentration.  Colin picked Yahtzee.  He used to play it with Nana Lanza so we had a moment when we made our sad sounds and missed her.  I can just hear in my head how they used to play that together and it was so cute.  Anyway, I made sure to let Karyna know that Colin had to make all the choices whether she thought there was a better move to make.  She could point out something if he didn't pick it but had to honor his final choice.  He won :)  

Colin has played some Tic/tac/toe before but I don't really know if he can strategize or if he just picks random spaces.  So, we'll see.  And, I know he has a good memory for some things--like movies, or wii games, but not sure if he will use that memory in a matching/concentration game so we'll work on that, too.  I'm going to make them a special box and maybe even build in some rewards for them for completing these activities.  They'll get a kick out of that.


Tuesday, February 4, 2014

Sleepy Colin

Colin just fell asleep during his half hour break in school.  Weird.  Mel gives Priscilla a break and comes and does Unified Arts with Colin every day.  He's in music/drama right now.  The connection via Skype has been pretty much non-existent lately so maybe that's why he was bucking participating today.  He is supposed to participate, and for doing so he earns stickers for either Persistence or Flexible Thinking, which are part of the Habits of Mind for the middle school (but that's another story).  Today they got connected and Colin started in with his noise making and closing his eyes.  He did not earn any stickers so that means NO fun break afterwards.  It's lunch time for the kids so Colin usually gets to pick something fun to do.  He usually picks watching a Wii walkthrouh and lately it's been Nancy Drew.  Poor buddy.  He likes his one-on-one time with Priscilla and Mel so we think that's why sometimes he has a hard time with Skype and VGo, at times.  He's been a little odd these past couple of days; he just hasn't been finding a comfy spot.  He wants his arms moved a lot, especially his left one.  I hope it's not hurt.  I ended up giving him Tylenol earlier so maybe he just got all his aches and pains taken care of so he dozed off.