Water Colors!

Colin got to take a break from doing stander today and made a water color from one of the kids in math class.  He painted numbers on the page and then colored over them as kind of a seek-n-find project.  He had a good time with it.

He also had a good time with his science experiment.  The kids used frozen juice concentrate and water to make different ratios and then they tasted them.  Pretty cool lesson!  Colin really liked tasting the orange juice!  I'm surprised that he's been so into it lately.  Casey has totally no use for trying things and Colin used to like it when he was little but kind of got out of it.  But the past 6 months he's been into it.

Karyna (Colin's nurse) and Colin played some games after school today and he had fun with that, too.  Splashy the Whale and Jumpin' Monkeys were the picks of the day.  
I had my phone interview for a SMA Care Giver Perspectives Research Study being conducted by a pharmaceutical/biotech  consulting group.  I was on the phone with the woman interviewer for about an hour--and I'll get a hundred bucks for it (well, in4-6 weeks).  I'm not sure who is funding the study or what they are hoping to learn from it, but it was interesting and they had good questions.  We'll see if we ever hear what comes out of it.

Oh, and Colin did well with Mel this morning, too.  He's had a harder time working with her in the new special, music.  We think it's because he just did a unit of PE and got to do fun things like play wii in his stander and get a massage....but today he had his A game on and did a good job!

Casey had a pretty good day.  Of course he was loud at times but he did okay.  He was even disappointed when Read, Read, Read was over and it's a longer class than last semester.

Still having a hard time getting the DynaVox to work the way it was before we sent it in for repair.  Today Paula was on the phone with DynaVox for an hour and the tech couldn't figure out why it wasn't doing what we wanted it to.  She called here when Mel was here and she and Mel talked and they tried a few things, to no avail.  But, Paula thought they had it working so that if we opened the browser FOR Casey he'd be able to do his maps and send things to the Internet but it didn't appear to be working right this evening.  It's almost like the scanning stops and then Casey is stuck.  Poop.

I guess that's it for tonight.  AC came and played Lego wii with Collie.  Then we watched some DVRd American Idol.

I think we have a nurse tonight....I thought she was coming but it's crossed out in the book, so we'll see!

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.

No April Fools here

I guess we kind of forgot that today was April Fool's Day. Oh dear! Casey usually likes to play tricks on people and we didn't plan a thing! Brooke said she was a little nervous thinking we might play a trick on her during the night, but we didn't! Next year will be double trouble!

Casey got off to school with Julie. We were supposed to get a bad messy storm but when I woke up there was nothing on the ground and it wasn't precipitating at all. Eventually it did snow/rain but nothing big--the warning was cancelled.

Colin has slept in HARD these past two mornings! He's not used to being out late at night like we did on Wednesday. He had a good school day. At break time Lauren did his nails with sparkly blue nail polish. Sigh. She had promised him, so she did it. We thought he was over his blue nail obsession but apparently not. He got nice and messy during art. They're doing paper machee.

Casey had another good day at school. Julie actually commented that he is growing up so fast. All of a sudden I think he *gets* it and is acting more responsible and controlling his voice and acting mature. He watched a movie in bed for a while and then Nancy H messaged me and reminded me about the Red Sox opener and I mentioned it to Casey and he wanted to get up and watch. So he watched the game in the yellow room while Colin watched Magilla Gorilla in the living room. I had to do lots of running back and forth (by this time the nurses were gone and Gene wasn't home yet) but they were cooperative for me. Casey had his DynaVox and opened his e-book reader and multitask-ed by watching the game AND listening to a book about the Harlem Globetrotters.

Gene came home and we had huge burgers, fries and cole slaw with his famous slaw sauce.

Bedtime was pretty late. We read about 3 chapters in SuperFudge--both boys kept agreeing that they wanted more.