One step forward, two steps back...

It's been a hard day so far today, but I'll try to start with the positive:

Richard O. has gained 4 ounces since Monday. I can't even tell you how much those four ounces mean. That puts his current weight at 20 lbs, 8 oz, which is the most he's ever weighed. Even better is the fact that since he pooped not once, but twice (and they were huge!) before being weighed this morning, I am fairly confident that those 4 ounces represent a true weight gain, and not a little body stuffed full of poop.

But, then there was his first feeding.

Now that Richard is opening and accepting a greater variety of foods, our task is now to get him to tolerate the pressure of the spoon on his tongue for 3 seconds. I noticed towards the end of the day yesterday that Richard was developing some pretty fancy manuevers to avoid having the spoon linger on his tongue for too long -- he would lean forward to open, and then sit back when he closed; or drop his head down in front of him so the food would cling to his upper palate. Thus, today we began "midline placement" which requires that after the spoon is in his mouth, we put gentle but firm pressure on the tongue with the spoon for 3 seconds.

To put it mildly, he was not a fan of midline placement. At all.

He struggled in his chair. He batted at the spoon with his hands. He screamed. He cried. When food did get into his mouth, he would sometimes spit it back out because he was angry.

And then, at the second feeding of the day, he figured out that he could choose not to open, and he still would get his reinforcement, which is to watch a video while he eats. At one point, after I had been offering him the spoon for well over a minute and wearily saying "open" over and over again, he turns to the feeder (who was sitting next to me) and excitedly said "Apple!" while pointing to the screen. Both of us burst out laughing, even though we probably shouldn't have, because it was just so ridiculous. He had the upper hand and he knew it.

Andrea (our feeder) told us that they may change "the rules" for him at the next feeding (or perhaps tomorrow) to conditional reinforcement -- that is, he will have to take the bite, and THEN he can watch the video for 20 seconds or something. He's a smart boy -- I think he'll hate that at first, but he'll figure it out pretty quickly.

Oy. It was rough.

So, my other big beef of the day is that the physical therapist turned down a second pair of sneakers for Richard O. She was concerned that his arches weren't getting enough support, and recommended that we pick him up a pair of New Balance or Nike shoes. We made an excursion on Monday, after leaving treatment, to find a mall and to go get the shoes. We found what we thought were a pair of decent Stride Rites, tried them on Richard, and bought them. Yesterday, we showed them to Genie (our PT), and she poo-pooed them because she thought they still didn't have enough support. So, again, after a long day of treatment, we dragged our tired selves and our even more tired toddler to the mall yet again, and after poring over about 20 pairs of Nike & New Balance shoes, finally decided on a pair of cushy Nikes. Well, Genie didn't like those either. Fed up, I told her that SHE needs to tell us the exact make and model of the shoes, and then we will go get them -- I am not going to waste any more of my time until she can tell me exactly what she is looking for. Supposedly, she's going to go look for shoes tonight, and bring back a "sample" pair to the center so we can see what she's talking about.

I am getting so weary. If I could somehow assign someone to sleep for me, I would. I am now in my third week of this epic struggle, and I feel as though my reserves of strength and patience are starting to fail me. I am desperate to get some extra sleep. In fact, I may go try to nap for a while right now.