Day Nine: Lodging, Nap Time

Lodging: There is a Ronald McDonald House just a couple of blocks from OCH and originally I had planned to stay there. The social worker here is the one who makes those arrangements and the day before I left I did get a call telling me they had room for us. I was able to tell them that they could pass that on to someone else because at the last minute our insurance came through for us and put us on "orders" meaning I could stay anywhere at the government rate and they would cover it as well as meals.

I call our lodging the hotel in the hood, where the poor get poorer because they have to shop at convenience stores and gas stations to buy groceries. I had to drive from the hood to THE HOOD (big beautiful homes) to find a real grocery store. There must be one closer but I couldn't find it. Despite the neighborhood and lack of close shopping/restaurants, this hotel has really worked out for us. We have a kitchen which just makes cleaning out his tube feeding bags easier, plus I can prepare my own food here. It also has a complimentary breakfast buffet with real food (not just donuts) AND a nightly "manager's social" where there is a complimentary light dinner out on the buffet. I also recently found out (but haven't yet used it) that they have complimentary grocery shopping. You just leave a list at the desk in the morning. I guess they are well aware of the limitations of their location and try to make up for it. The complimentary meals work great for us because the last thing I want to do with ZZ is sit at a restaurant waiting for food since he doesn't eat. This way I quickly eat without causing him too much duress. We did meet the rest of the family at the Rain Forest Cafe at the end of our week last week, but there's plenty of entertainment there for ZZ not just eating. The hotel also has complimentary internet (it is wired but in the room) coin laundry, a pool, a work-out room, and a basketball court. So really I can't complain!

Nap time: ZZ takes an afternoon nap with a feeding everyday. The program director scheduled 2 hours for him to take his nap and starting yesterday they increased the break by 30 minutes since I was having to wake him and he was always tired for his first afternoon session. There is a nap room here so we don't have to go back to the hotel which is nice.

Today's therapies: This morning started out with refusing as soon as the spoon was dipped in food (dry spoons were fine - but he pays attention to when the food goes on). The ST went better. They decided (and I agree) that ZZ is more motivated by mentally stimulating puzzles and games then simple toys and videos. He was finger painting a turkey for OT but only would do I feather so she'll work on it more later. (His sensory issues are with wet substances like fingerpaint). His OT feeding went well (he was playing with number, shape and letter cards) for dry spoons, dips and even a few half spoons (the best he's done for the OT), but after a few half spoons he started refusing and cried the rest of the session. The first afternoon feeding went amazingly well. He went in crying but once she got him to stop he took his bites the entire time. He ate 2 oz. of tomato soup! I have to admit he looked absolutely miserable the whole time and we both thought at the end he was going to lose the whole thing, but he kept going and kept it down. The last feeding was fruit cup puree again and he made it through about half the session and then started refusing. He was really mad when she kept the spoon right up next to his face because a few times in his head turning and putting up his hands, he got some on his face and hands. That just drives him crazy (again with the sensory issues) but she told him she would only wipe him off after he took a bite which he never did. As soon as the timer rings to end the session ZZ immediately stops crying and carrying on, which is a good indication that he's mad, not distressed. So, finally some food went in today!