SMA Awareness Day 4-We did the U Mall

These are Casey's spoils from our trip to the University Mall today.  Casey technically had summer school today so this morning when Ashley got here they did their thing preparing for the outing.  Last week Casey had a meltdown about going somewhere in Milton.  He really wanted to go to the mall.  I told him that if he was good this weekend that he could go but he'd have to have me and Colin tag along with them.  I think he was okay with that because he was pretty good this weekend.  He was supposed to pick somewhere in Milton for a plan B but I don't think he actually did.  Oh, and he had told us that if he couldn't go to the mall he just wanted to stay home.  He is a stubborn one!!

Anyway, we headed out and got there around 11:00.  Ashley, Julie and Casey went their way while Colin and I went ours.

Our first stop was FYE.  Ended up buying I Frankenstein and Oz the Great and Powerful DVDs and a wii Lost in Blue Shipwrecked.  We looked at so many movies and wiis and had fun browsing.  Then we hit FYE.  There aren't a lot of wii Us that we don't have that are appropriate so it was tough.  Ended up getting a Chicken Blaster (regular wii) for $2.69.  I'm sure it will be dumb but entertaining for an evening or two.  Got a used Ben Ben Omniverse for wii U.  If we don't like them we can return them within 7 days.

Colin and I wandered around the whole mall a couple of times and NEVER heard Casey.  It was weird.  Called Julie.  Finally got her and they were checking out at Sears.  That's why we didn't hear Casey because Sears is set back a bit and a big store.  Casey picked out a flannel shirt and a hoodie as you can see from the pic.  The hoodie has earbuds built in!  Bonus!  Now I just have to remember NOT to put it in the dryer.

Casey wanted to drive his chair to American Eagle so he puttered along.  In the meanwhile Julie bought some chocolates from the Lindt store and I got some pretzel bites from Auntie Anne's Pretzels.  They were more than delicious!  If you know me, around lunchtime I start to get woozy if I don't eat--and I usually crave protein but these did me fine until I got home. 

Casey could not decide what he wanted at American Eagle so we didn't buy anything.  First he wanted blue jeans, then gray jeans, then dark jeans.  I'll just buy him some online and save the fuss.  Plus, I can look at his other ones and see what style they are because we like they way they fit. 





Got boys settled in the living room.  Nurse Julie played the Ben 10 with the boys.  I took a 'read' and a nap.  I started Where'd You Go, Bernadette which AC lent me. 

Brought Jaxon out for our traditional post nap Frisbee throwing.  Helped AC play the Shipwrecked wii game.  It's kind of a boring one but for some reason Colin is into it.






Casey's DynaVox came back today, whoop!  We sent it in on July 25th, so that's not bad.  All they had to do was restore it to new.  The paperwork said something about a virus so the software had to be reflashed.  But, now, we have to back up the pages he's using now (he's been using Colin's) and then put them on the new one.  Easy-peasy, right?  Julie and I are ready to take it on tomorrow.

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!

We did the mall

I was up earlier than I needed to be today.  Deb was here until 8 AM but I couldn't sleep so I got up and started in on the day.  Made formula for the night at 8 AM.  (Colin's new day starts at 8 PM and Casey's at 10 PM--and they get a certain volume of food in 24 hours)  We usually don't make formula until afternoon but since we were going out, I figured it would be good to get it done early.  Laundry, straightening up, etc.

After Gene got up I took a shower and then it was straight out getting everyone ready as we were planning on leaving to go to the mall at 11:00.  Well, that didn't happen but that's okay.  Nurse Julie did an extra shift today, coming in at 11:00 to treat Casey to some birthday gifts at the mall.  Colin got a shower.  Casey got cleaned up and dressed.  Got everyone in their chairs and BUNDLED up as it was frigid and we were out of here at 11:45.

Met AC at the mall.  Colin wanted to do his regular routine; FYE, GameStop and then hang out with Dad...they usually end up at the food court as Dad likes Taco Bell :) 

Colin found some Skylanders Swap Force on sale buy one get one half off so he picked two.  Didn't really see any movies so he headed over to GameStop.  Casey and Julie were in there and he had picked a wii u Sponge Bob game out.  Colin found some monkey game and Batman Arkham Origins.  I hope Batman isn't too complicated to play.  Colin has watched the walkthrough a couple of time so he may be able to guide us.  We ask him Yes and No questions and he'll answer us and if we don't get it right he'll yell until we do! 

Traded in a bunch of games, pre-ordered the Lego Movie game, picked out one of the bigger SwapForce characters, renewed the Power Up card and we were finally out of there.  I'll say it again--we always have a great experience at GameStop.  The employees are so nice, knowledgeable  and helpful and don't make you feel rushed.

Casey and Julie continued on their jaunt.  Gene, Colin and AC went to the food court and I ran to Kohl's.  I had a 30% coupon in my pocket that was burning a hole.  Headed right to the woman's stuff instead of checking the boy stuff.  Picked up a pair of jeans but didn't try them on (ended up picking up the wrong size) and found two spring jackets that I liked.  I got both!  One is a cobalt blue short lightly puffy jacket, and one is a spring green hip length wind/rain kind of jacket with a detachable hood.  I had been looking for a wind/rain one for a while now, ever since a mouse had nibbled on it a couple of years ago when it was packed in the closet for the season.  I also found something for AC for Valentine's Day but won't write what it is here.

Met up with the food court people.  Colin was happy as a clam playing with Daddy's hot sauce packet.  I got a caramel Coolata which is a splurge for me.  Yum.

Found Casey and Julie and regrouped.  Then it was time to head out.  Julie was proud of Casey as he did some good driving.  He stopped in front of the tee shirt place and said, "tee shirt ...well, I'll have to get the story from Julie again but he got his point across as to what he wanted.  He picked out a black shirt with a Boston Bruins logo on it but with the shape of Vermont in the middle of it.

Home.  Get everyone settled in the living room.  Julie played the new Sponge Bob game and a bit of the Monkey game.  I ended up playing a chapter of Skylander's and it was the hardest yet!  Crazy hard!  We must have killed 12 of our guys before I finally beat the level.

We watched a bit of the ProBowl and then I DVRd the rest.  Even Colin was liking it.  He's been enjoying football these past couple of weeks, now that the season is ending, oh well. 

Scary time, hair cuts and Disney Infinity

I'll preface this by saying Casey is okay :)

Nurse Julie and I took the boys to the U Mall today for hair cuts and to pick up the Disney Infinity wii we had on reserve that finally came out.  We had a good time tooling around.  Casey drove his power chair some.  I love letting him go way ahead of us and watch him go.  Today he was interested in the nail salon :)

The hair place was busy so we shopped some more.  Colin was very excited to get the Infinity wii that we've been hearing about for months!  I gotta give the guys in GameStop some kudos.  Every single time we've been in there they have been so cheerful, helpful and knowledgeable.  I mean, these guys are true geeky gamers and I don't think there's a game they've never played! 

Hit McDonald's in the food court for a 'snack' and a sundae.  A woman came over to us and asked us if the boys had SMA...wild, huh?  Turns out it is our little buddy Asher's paternal grandma.  We've met his maternal grandma Patti.  She was very nice and we chatted for a bit.  We also chatted with Mel (Casey's old para) for a while as she was there shopping with her Collin. 

Finally it was time to hit the hair cutting place.  Colin went first.  It went okay although she had a hard time using the clippers because of the handles of his chair.  Colin was, "Ahhhh"ing as he loves to get his hair cut so he kept us entertained.  Then it was Casey's turn.  He was in his power chair and the head rest doesn't come off it it easily like his manual chair so I was holding his head and moving it where the stylist needed me to.  I got kind of tired after a while so I asked Julie to switch places with me (she was hanging with Colin),  She took his head out of my hands and said something like "he doesn't look right."  And, OMG, he was dusky, and the most awful color.  After that things got kind of crazy.  Of course we had the cough assist in the van--almost brought it in but decided not to.  MISTAKE!  He was still conscious and would blink but couldn't make noise.  NOT good.  We got the ambu bag out (it give him direct, big breaths via his trach) and suctioned his mouth.  Got some out.  Suctioned his trach. Not much.  Still not making noise.  Julie did what she has always said she'd do if she had to--She BREATHED BIG BREATHS RIGHT INTO HIS TRACH!   And, he started making noises!  That's when we knew he'd be okay.  Somewhere in there 2 stylist and 1 customer were there not knowing what to do.  One of them asked if we should call 911 and I finally said yes.  For some reason she went out in the mall to summon someone???  I ended up talking with someone on the phone and said we were okay.

The stylist and customer were so kind but pretty shattered.  I told the customer (an older woman) that I hoped her hair cut would be straight because the stylist's hands were shaking so badly!  She laughed and said she was just getting foils and that her coloring would probably be the best at the wedding she was going to!  I took the opportunity to spread SMA awareness  and gave the 3 people our cards with SMA info on them and I had two cards left from The Getty Owl Foundation that I gave them, too.

Casey looked very pale for quite a while.  I'm hoping some of it was the lighting.

But, those of you reading this that have SMA kids that have had such an episode you'll know how quickly our kids recover and act like nothing happened.  Thank goodness they are so resilient and forgiving!

Although, Casey did have some things to say on his DynaVox on the way home and after we got home.  He was talking about police man, hospital, etc.  (although this isn't totally unusual for him)  Later on he said, "because I was sad.  I couldn't breath."  (breathe).  My poor heart was so sad hearing this.  BUT I'm glad he's able to express this much because I know some kids can't. 

He is fully recovered now.  Had a shower and has a fresh trach :)   We were kidding him saying that Julie blew chunks of her McCafe and the caffeine revived him, ha ha.

Me, I needed a nap after that.  Phew!

On a lighter note...the boys and I started the new Disney Infinity wii game.  I'm really kind of not sure if I'll like it.  I wasn't even sure what to do.  I was hoping it would be a simple game and they'd guide you like Skylanders does.  I like having objectives and I think this game might be more of a free play but we'll see.  The boys were entertained while I tried to learn how to build, drive and combat.

Time for bed soon.  Tomorrow is a quiet day.  Casey has his art therapy and that's it.

Sorry no pictures!