Well week FIVE is drawing to a close. Amen. Not lying, it was the hardest week since week one for a variety of reasons and I, for one, am glad that its over and done with.
Jack. Hmm. He had a rough week. Steve trained last weekend to feed him and it didn't go as smoothly as everyone was hoping. From there the week seemed to be a rollercoaster. Some meals were perfect, others were absolute nightmares. He has started throwing his spoon in an attempt to not have to eat a certain food or if he's too tired to chew or if he's just tired. Or one of many other reasons. We've adjusted his protocol to try to help curb the problem but I'm not sure if its helping just yet.
They all told me in week one to expect this. That even the kids that are doing amazing and great eventually start fighting back and that they want them to do it here rather than at home. I agree with them there but still, its hard for me to see him come off of 2 1/2 great weeks to suddenly throwing spoons and crying again. I know he'll get over and work past it but its draining nonetheless.
We had some roommate issues in the beginning of the week that were leading to me getting very, very little sleep. Come Friday I was a MESS. Seriously. Ask anyone of the 40 some people that saw me crying in the hallway over a small thing and they'll tell you. I was a MESS. Now that I've had a good 10 hours of sleep in me, I'm feeling like I can head back to KKI this evening and kick Week Six's ass.
Foodwise, because of his newfound pitcher's arm, we didn't try as many new ones this week as I would have liked. He tried Watermelon. It's 50/50 on whether he likes it. Depends on the day. Mashed Potatoes. They're instant. He doesn't like them. I don't blame him : P And Macaroni and Cheese. He eats it with no problems about 90% of the time. It's hard to say if he likes it because he makes a tortured face for any food that he really has to chew.
So here we stand at the beginning of Week Six with 22 days until Discharge Day. I'm ready to go home, he's ready to go home but I'm not ready to be done with it just yet. I'm taking his highchair back tonight so they can train him in that versus the giant, Rifton that he eats in now because 1. we don't have room for one in our house and 2. its a $500 highchair.
He's still doing good in OT and ST, they're mainly focusing on getting him to take bites of things, not just shoving the whole thing in his mouth. Like he did with NutraGrain bar and fish sticks this week.
Yesterday he was sick. 101 fever and needed breathing treatments during the day and at all. Poor kid. Daddy reports that he's back to his normal self today though.
Before I sign off, I'll leave with a funny story. During his meals, he watches TV as his reward. He was bored with Octonauts so we switched to Special Agent Oso. WELLLLLLL, we learned the hard way that we should screen those videos. I won't go into details and I'm fairly sure its safe for work since it made it through KKI's ridiculous firewall. So here you go. Enjoy. I laughed so hard I could barely finish the meal.
http://youtu.be/qlVECGk4Md4
Until next week.
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