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!

Sigh, doctors

Most interesting thing about today was dealing with the darn old doctors and Casey's feeding schedule the night before his surgery.  First, Gene talked with someone about some general questions and then he deferred to me.  According to whoever this person was, the anesthesia doc, Dr. Lahiri and our pediatrician thought that Casey shouldn't have any formula after midnight which would mean 8 hours of fasting for him.  That doesn't fly for me AND I had talked to Dr.Lahiri before and he was on my side saying that Casey was a low risk for aspiration, etc.  A bunch of phone calls later, including our pediatrician, I kind of agreed that he'd get his formula until 12:30 and then at 4:00-5:30 I'd run Pedialyte.  The Pedialyte will give him hydration, electrolytes and sugars but he'd be without his aminos/protein which SMA kids need to thrive.  I know it's only one feeding but he's never gone so long without before.  We'll see what happens next.  I still may get a chance to talk with Dr. Lahiri again.  We had talked about emptying his stomach if there was anything it in so I don't see why anesthesia is being so strict.  The procedure should only be 10-15 minutes long.  Oh, and they agreed that he had a nissen fundiplication but it was placed at 9 months of age so they wouldn't trust it.  Sigh.  I get the risk of aspiration but I think they are going overboard.

AND, then our pediatrician mentioned that they might do the trach change while he's in the procedure room.  So they would take out his AIRWAY when he was under anesthesia???   I think NOT!!  I plan on that being a group effort that includes Nurse Julie and myself.

That's the gist of it without many of the details...I can't wait for it to be over with!!!!  Oh, and they did say that if all goes well he'd be able to get his feeds right after.  Casey is the first case in the AM--at 7:30 so that's a good thing.  Is it Monday afternoon yet??????????

Other interesting thing that happened today was that Mrs, Short (Casey's SLP and case manager) called and said she got Casey's note about wanting to stay in the Read, Read, Read class.  They talked about it for a while and then she told him he could go to it today and we'd talk about it.  She wanted to honor his feelings since he doesn't always get a lot of say in things.  I'm fine with it.  I was hoping he'd enjoy the creative writing, but there is next year so we'll keep it in mind.

Read some of Emma on my 'nap' time today.  Still not loving it but am keeping an open mind and remembering that it was written by a woman, and written over a hundred years ago.

Casey had Randi today (art therapist).  He had he going on about the Fresh Prince of Bel Air and she sang him the theme song (you can tell by this that she is young :)  )   Then he wanted to come up with alternative names for himself.  Odd, I know, but he likes getting people going and making them guess things.

AC came and hung out with Casey for awhile and then played some Lego with Colin.  Of course, I had to help and I made some good progress, hee hee.

Watched Idol from yesterday.  It was annoying because there must have been something wrong with the air waves because the show came out all jittery and kept stopping.  Then Gene said, maybe it's On Demand.  Bingo!  But we had to watch the darn commercials.

Pre-registration called and we got that done.  My poor cake and ice-cream got a little soggy.  Why do people always call whenever I touch food??  Maybe I touch food a lot?????