SOMEBODY PASS THE WINE AND CHOCOLATE

Well, it's official, I have THE most stubborn child on the planet. I swear, there are days I could beat my head against the wall, really hard, and repeatedly. So could his teachers, therapist and nurse, I'm sure. What is it going to take for this kid to get motivated to do schoolwork?! I have no freakin' clue. It's obvious Colby absolutely knows how to use his eye gaze. As a matter of fact, he is very accurate and purposeful with it, when and only when he wants to be! Why doesn't this child want to learn? Why doesn't he show his teacher he can do the easy stuff so we can move on and give him more challenging activities? He won't even spell his name on the letters page. C-O-L-B-Y that's it. Just 5 stinking little letters, and he WON'T do it. Simply because he doesn't want to/doesn't feel like it. So the nurse came home today and told me all about this non-responding, not-trying bullcrap he pulled today. Then I have to be the mean guy. I told Colby, it's 2:00. You go to bed at 10:00. That gives you 8 hours to spell your name on eye gaze, and you're not getting TV, watching your fish, listening to your audio books, or doing anything else until you spell your freakin- frackin name. I could scream. So far he has done C-O-L-B. Not right in a row, he added practically every other letter in between. But as long as he picks the letters once I tell him to, we're going to count it. That took from 2:15-3:00. He's back there doing his cough treatment right now. As soon as that's done, it's right back to the eye gaze and waiting for him to pick the letter Y. For the love of corn, his stubbornness is out of control. His IEP is coming up in March, and it's going to be pitiful. The data that they take at school will show that he is mostly non-responsive, or didn't respond, or however they label it. It's complete bullshit because Colby knows this stuff. I know he does. I will not stress eat. I will not stress eat. I will not stress eat.

And here's the other lovely news I received today. I've been trying to reach the Ortho nurse up at Cincy Children's because it's time to get Colby's pre-op appointments on the books. They have to be done within 90 days of surgery. So I say, okay, we can start these any time after March 11. She says no, March 25 because Colby's surgery is scheduled for June 25th. Uh, excuse me? Not hardly. I said that's not what I was told. I was originally told Colby's surgery was June 25. Then someone called and said it had been moved up to June 11, and that's the last I heard. I've told my parents, all the nurses and my job this date so everyone can plan accordingly. She said well someone was supposed to call and let you know the surgery got pushed back to June 25. Well hell's bells, which is it?! Just give me a freakin' date and stop changing it. So she's going to look into it on her end and call me back. I stayed very calm in speaking with her. Actually she was very nice and seemed to have her shit together for the most part, so I couldn't get too mad at her. There are a buttload of departments at Cincinnati that will need to sign off that Colby is well enough for surgery: pulmonary, neurology, cardiology, endocrinology, hematology, anesthesiology and of course ortho. I did tell her that when we start to scheduled these appointments, hematology needed to be first on the list, considering the troubles we've had with all that in the past.

So to summarize, my kid is smart, although you could never tell it by his academic performance. Furthermore, I hate being the meanie weanie who has to make him do something he doesn't want to do. I HATE it, but he has to know we all have expectations for him. Also, Colby may or may not be having VEPTR surgery on June 11. Maybe the 25th. But really, the sooner the better, so he has the rest of the summer to recover/recoup.

That's it. That's all I've got today. Except that the bitter cold is back. Polar vortex they're calling it. Can't we just say it's f-in ridiculously stupid cold?! I've been going back and forth on whether or not to send Colby to school. If you have an opinion on this, by all means, feel free to keep it to yourself. For now I'm sending him. He's only outside for maybe 3 minutes at a time, at the most. Plus he wears a toboggan, scarf, Huggie, long sleeved shirt, back brace, t-shirt, pants, leg warmers, AFO's and a pair of long socks over his AFO's. We also cover his head when going outside. He hates it, but he doesn't need to be breathing in the cold air. He tolerates it well, except for the blanket over the head part. Okay, back to the torturous eye gaze. We just need a Y, Colby, just say a stinking Y and you can move on with your life.