Tag Sale, Phew!!

Well, we survived the Tag Sale Weekend.   It was hot, hot, hot, and muggy, muggy, muggy!  Next tag sale will be in June or September but not July or August!

We made about $400.  Thanks so much to everyone who donated items and/or lent tables, etc.  I would definitely do things differently next time but it worked out okay.  And, when we cleaned up, Julia, Gene and I made a point to pack things up in categories and we labeled the boxes.  We also have a Free Pile, a couple of boxes of stuff to donate, and then a bunch of boxes of stuff we'd like to try to sell next time.

I was surprised that there weren't more kids coming through.  I mean, there were definitely some kids but I thought we'd have hoards.  We have tons more awesome kids stuff.  Lots of Spongebob stuff left and books and games and stuffed animals.  The boys clothes were big hits.  Of course they're all in really great shape and most of them were classics so they were snatched up.  Still have some really nice baby stuff, too.  One thing that was missing at our sale was 'guy stuff.'  Funny how there was lots of kids stuff and my stuff and some household things, but no tools or gadgety guy stuff because Gene is such a hoarder!!  I'm working on him to get rid of stuff for the next sale.

The boys were able to be outside helping for a bit on Saturday morning but it was so muggy that they were not thrilled to be outside.  So they went into the AC in the wish room with Nancy H.  Sunday they stayed out a little longer.  We had the water guns going and they had a blast!  Nurse Lauren worked the day shift, as well as Nancy H so they were thoroughly entertained.  Lauren's mom and aunt came and that was fun--they loved chatting with the boys and getting shot by the water guns!

We met some nice people from Milton.  Many people were aware of the boys and we very supportive and generous with donations.

Oh, I can't forget to mention that Connie, Justin and Daniel came up from Springfield to hang out with us and help take care of the boys!  I only took ONE picture the entire time they were here!  We had Zachary's pizza and kind of blabbed, hung out, and worked on the tag sale.   We wanted to bring the boys into the pool but they weren't interested.  Connie and I ended up in the pool by ourselves which was fine by me!  It was completely refreshing!

Connie got a good deal on a hotel room so they stayed over night.  They came back for a bit on Sunday.

We had the boys overnight and they were Mr. Grumpy and Mr. Flippy.  Guess which was which?!

I was up early on Sunday getting things ready.  Not much sleep.  Ugh.  I changed the times of the sale on the Craig's List and the Milton pages to end at noon since there was a prediction of bad thunderstorms.  Just as we packed up the majority of the stuff we had some rain, but not like they predicted.  Most of the boxes ended up in my car or the van.  It will be up to Julia and Gene to get the stuff into the garage this week while I am gone!

What a day

Finally I am getting to sit for more than 3 minutes at a time.  Been going since 7:00.

Boys had summer school today so we had to get them ready.  And, yes, I had two nurses today; one for each boy, but I still ran my butt off, with phone calls in-between, and the dog and the cats, sigh.

I'm very grateful for the boys having summer services but man, it's a lot of work.  Both boys are doing their services at home, for the most part.  We'll have 5 different providers rotating in and out Mondays through Thursdays for 5 weeks.  That doesn't leave us a lot of time for gallivanting so we'll see if we have to take a couple of days off.

I feel like I have to be there for almost every second.   Finding things, positioning, filling in gaps, coming up with things to do, fixing "ows", etc.  I guess I can't quite explain it but I sure feel it.

Today Casey, Mel and I tried setting up Casey's DynaVox to turn the 'yellow room' TV on and off and have him use the channels.  We got pretty far but we're not done.

Then, Mel worked with Colin while Julie and Casey ran over to her place to pick up some tables and an awning for our tag sale.   We tried to get Colin's DynaVox set up to do the same in another room but it's different version and we got a bit of it done.

For summer school this year we're also working on getting the boys to do more activities together and communicate more with their DynaVox's. Today we attempted Go Fish!  Well, that took a bunch of programming.  We made a page with numbers and some phrases and put them on both boys devices. Then we had to teach them the game and where things were on the page, etc. Sounds easy but the game took probably over an a hour and a half!

Right after summer school Deb from Biomedics came with Casey's new AFOs.  So we had to try those out and see how they fit.  One just needed a bit of stretching.  He also got new sneakers and 4 pair of SmartKnit socks.

Then it was Colin's turn to get casted for new night time let braces.  He actually did pretty well.  His heartrate only binged out at 165 a couple of times.  Maybe after 8 years of her coming he's finally realizing that she doesn't do anything that hurts.  It probably didn't hurt that Julie was playing the Hardy Boys wii with him.  Casey was watching his football and keeping an eye on wii.

Then the dog needed to play Frisbee.  Then there were lots of 'ows' and grumps, etc.  Whew.  Glad the boys are in bed and Gene is reading tonight.

Tomorrow we have no school because Casey needs to go to The Medical Store for a power wheel chair appointment.  And, we have to start working more on the tag sale this weekend.

Oh, yes, I put the tag sale up on Craig's list and the Milton Front Porch Forum.  Julie made us some colorful signs we'll put up bright and early on Saturday.

Boy Sout tag sale and Madagascar 3

Busy weekend!

Saturday started off with getting the boys up earlier than normal so that we could get all of us ready to head over to the Cornerstone Church for the Boy Scout tag sale.  We made it there about 10:45 or so, not bad!  Everyone was so nice and welcoming.  They said they had a lot of traffic through and things were selling well.  We talked with some people, poked around and found some treasures.  Casey was obsessed with a huge projection TV that they had for sale--sorry Casey!

Outside the boys had an encampment set up with tents and a fire, etc.

The boys with the troop!

Afterwards, we walked across the street to the library and the boys picked out a few movies.  Then we headed home.

The boys played some Poptropica when Nancy came. I napped for a bit because I had the boys for the overnight.  I hit the pool for a bit.  Casey had a tubby and we called it a day. 

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On Sunday we decided to go see Madagascar 3.  It had been a while since Colin had gone to a movie and AGES since Caseey had gone.  We were in theater #10 which is the tiny one near the bar and the birthday room.  NOT very accessible.  We've always had good luck in the other theaters but this one only had one real spot for a chair, which Colin and I took.  Julie and Casey ended up sitting in the very front.  Aunt Chris sat in front of Colin and I.  It worked out okay but if there had been more people in there it would have been a bit crazy.   I was also disappointed that the ticket seller (who seemed like she was a manager) didn't say anything to us.  She clearly saw that we had two kids in chairs.

After the movie the boys and I tried the claw machine with no luck.  We found one of those big gumball machines that had miniature Madagascar 3 figurines so they each got two of those.  Time to head home.

Julie headed out.  We hung and that's about it!

4th of July; no side effects and water pistols

The boys slept well last night.  They had no side effects from the Pamidronate infusions.  No fevers, no spaciness, no aches or pains.  I guess when we had the infusions a couple of years ago their bodies must have gotten used to the medication.

This was the first year in a long time that we didn't go to the Milton 4th of July parade.  I guess we were all tired out and kind of grumpy so we decided to stay home.  It's usually a fun time once the parade starts.  We usually go about and hour early to get a decent spot and the boys are always whiny and fussy and complain while they wait.  We bring books and music and they still can't stand waiting.  So it was kind of nice to avoid that part of the day. 

What a ucky, yucky, muggy day.  We made it outside as early as we could so we could try out the boys' new Nerf Super Soakers.  One of my SMA friends made some special battery interrupters that we put in to make them usable with the boys' switches.  It wasa perfect day to try them out!

I think Casey and Colin were surprised at what they could do!  They had a good time soaking each other and occasionally one of us :)

Nancy H picked almost 4 cups of raspberries while the boys squirted their guns.

Nancy, Christy and the boys went for a quick walk to the pond before it got too hot and we had to go inside. 

I had a wonderful nap--best one in a long time--in the air conditioning.  I was out like a light!

I decided to try out the pool.  It looked pretty good after I skimmed about 100 rose bugs out of it!  It was chilly but so refreshing!  Love our new pool float!  Called dad from the pool to let him know I was enjoying it.  He was happy but a little distracted since he was able to get Yankees game on TV since they were playing the Rays :)

Huge thunderstorm came in.  We got a pretty good one but nothing compared to Burlington and South Burlington.  Whew!  No power outage for us!

Julie and Bill stopped by after their huge barbeque at the fire station and brought us some of Bill's famous baked beans and coleslaw.

That's about it for the day.

Gene went outside and tried to peek at the Milton Fireworks.  I watched a bit on TV.  Pretty lame celebration for us.  I didn't even get out our 4th of July decorations.  Not that we don't appreciate all the sacrifices the service men/women and their families make for our freedom, but we didn't outwardly show it this year!

Pamidronate infusions and 3 broken things

We're back from the boys Pamindronate Infusions.  We got there about 10:00 and were downstairs waiting for the van by 2:25--not too bad--and home by 3:00.

We had a good IV nurse who got a vein first try for each boy.  Whew!   Tylenol given via g-tube, labs drawn, 1 hour of saline via IV, 2 hours of Pamindronate via IV, short flush and done!

Casey was the needier one, as usual.  He wanted a movie.  He wanted a different movie.  He wanted music.  He wanted a different artist.  He wanted TV.  He wanted football on the ipad.  He wanted a different football game.  So on and so forth.

Colin was pretty happy with Nick on TV and then Honey, I Blew Up the Kids.  He was kind of vocal saying "ow, ow, ow" about his IV and "out, out, out" wanting to go home, but he only high heartrated once when he was getting his arm assessed.

I almost cried when a little boy, maybe 3, came in and got so upset about having to have his infusion.  Must have been a maintenance drug for some type of cancer.  He was screaming "I don't WANT to do this!  I don't LIKE this!  PLEASE don't make me do this!"  Totally hurt my heart.

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Broken thing #1  Colin's new chair has squeeze handles to change the tilt and recline.  Well, Colin will tilt no more, until we get that fixed.  Apparently when Casey was loaded into the van today he crushed Colin's handle with his chair and when we got up to the infusion bay we noticed that it was broken off.  BIG bad, bummer.

Broken thing #2  Colin's newish Nasal Aire's (his bipap nasal prongs) cracked.  It happens quite often, which sucks because we can only get so many in a period of time.  We buy them out of pocket as we need them.

Broken thing #3  The van is making awful noises.  The guys at the valet parking at the hospital said it sounds like a CV joint.  Well, I said that to Gene when we got home and he laughed and said we don't have CV joints because it's rear wheel drive and has axles.  But something is obviously wrong!   Our inspection ran out the end of June...I hope Gene brings it to some reputable place and gets it checked out and inspected. 

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So, right now both boys are hanging in the living room waiting for Julie to play a little wii.  They look pale, but they are both full of piss and vinegar, so, hopefully, we won't get any of the flu-like side effects that we had last time.

Farmer's Market and Timmy

Today was Casey's first outing with the Trilogy vent.  I almost grabbed his LTV just in case but he's been doing so well I decided not to.  He did great!

Courtney came here at about 11:00 and we headed out to South Burlington.  The day started out a little dreary but ended up being beautiful!  Aunt Chris met us at the Farmer's Market by the High School.  We set up the boys' DynaVox's but it was hard to see the screen since it was so sunny.  Well, that gives us one more thing to work on this summer--finding a sun shade of some sort so that they can communicate when it's bright out.

We had a good time roaming around.  It was a rather small market- I was hoping for more crafty type items, and Nancy H pointed out that there was no homemade breads!

Alaina was there with her cards, and book and her new canvas veggie bags.   Always good to see her and Jennifer!  Also ran into Mrs. S, one of our favorite teachers!

I bought a cheese and veggie pocket from Mr. Samosa and some kale chips.  Gene bought some pickled garlic from Michelle who is the girlfriend of RJ and Tyler's Dad.  She owns Vermont Pickle where Tyler works every Tuesday.  She gave us a couple of jars of seconds, which Gene has declared to be delicious and I'm going to try in a minute.

As we were driving home, we got a call from Timmy and that he and Grandma and Grandpa were on their way up to visit.   I was surprised since I didn't think Timmy was going to have time to come over.  

It's always good to see big Tim.  We all sat and chatted.  We went out and played Frisbee with Jaxon.  Gene and Tim made a creemee run to the diner.  Tim put on some scary, gruesome viking movie on which Colin loved and Gene made him turn off!  That was about it, but glad we got to see him!