Back 2 Baltimore, But 4 a Quick Visit

Ben had an appointment for a follow up on June 24th. We flew to Wash. DC, and arrived at 1am on the morning of the 23rd. My sweet sis sacrificed some shut-eye to pick us up, then later drove us to Baltimore, to the Ronald McDonald House. It was great to walk in to the House and to feel like I was home. What an amazing charity that is! I met up with some friends who were still there, and those were very happy reunions. We also timed our visit so that we could see Ben's best buddy who went through 7 weeks of the program with us. It was great to see them again, and we spent the evening chatting and hanging out with them.

On the 24th, we went to KKI. Ben had a feeding appointment at 12:30pm. We fixed his lunch and I fed it to him. The session was videotaped for analysis, and his therapist also sat with her laptop and took data during the meal. While we were in the program, I felt tremendous pressure to follow all of the rules and guidelines for feeding Ben, but now that we are out, and I have had two months to tweak and adapt his program at home, and I do not feel that same pressure. That is a relief for me. Ben, of course, in the simple cocoon of a feeding room, ate his meal perfectly. In reality, Ben eats in our kitchen, and loses focus everytime someone walks into the room, or makes a noise. Now that school is out, every meal is difficult for Ben to focus on, and to get through. I was a bit disappointed when his meal went flawlessly at KKI.

Ben had his clinic appointment at 2:00pm. At that appointment, we met with all of the members of his team. We saw the dietician, his OT, the nurse, pediatric GI, and his behavioral psych. His team thought he was doing very well, and the dietician noted that Ben had grown two inches since his evaluation in October. His weight has only increased by about a pound, but she thought his weight would increase after some of the height settled down. The team member that made the changes was the behavioral psych., and I like what we came up with.

We changed the way Ben earns Level 3. The problem is that he is getting very distracted, and that he is wasting time in the beginning of his meal, and running out of time in the end when he needs it most, on the food that is most difficult for him. Budgeting is an advanced skill. So, we are allowing him two chances on pureed food, and four chances on regular textured food. If he goes over the allotted time (15 sec. per bite of puree, and 45 sec. per bite of reg. texture) per bite, he will lose a face on his chart. We also cut down the time allotted for purees. He was formerly allowed 30 sec. for a bite of yogurt or pudding, and he was wasting all of it, which made me CRAZY. It is like he has a timer in his head. Obviously he does not need that much time for one bite of food like that. He is adjusting well to only 15 sec.

The other change is where we feed him. The kitchen is too central. Now I sit and time him in the laundry room. I set up a TV tray and a folding chair for him, and I can watch him and work on my computer at the same time. There is much less distraction for him in there, thus keeping the total time per meal shorter. Yay for that! I feel like my time is so much better spent now...as feeding goes.

I am implementing these changes for the first time today. We have been on vacation for almost two weeks, and that is no time to make changes. The clinic will call me next Monday to check on how things are going, so knowing that helps motivate me to get going on these changes. I like them so far, and feel much less frustration. Ben was resistant to the idea at first, but I don't think he minds it so much now. The most difficult meal is at dinner when I want to be fixing dinner for my family, and not sitting feeding Ben. I think that is where a helpful teenager comes in handy.

Overall, the time and money we have invested in these changes has been very worthwhile. I know Ben will keep improving. I think when he is older, and more mature, he will understand that he needs to sit down and get the job done. I can't wait for that time.