Graz Day 4

LOGO with Christina, who suggested asking MDS for appointment with dietician for ways to add more calories to food he is eating/drinking.

August needs to make eye contact when asking us for something–when he points and whines, wait for him to look at you before getting him what he wants.

Vibrating massager on face, feet, hands (round flat disc, cell phone size) He loved it.

ET (OT) with Maryann. Played with TOMY brand ball maze. Hep build, drop ball through. Large vibrating machine all over his boy, loved it, but he seemed tired. Disappointed that she said Porter and Johnny couldn’t come in, but in the end she let them in. Supposed to involve family in all the therapies and they do the first day, but then they are asked to wait in hallway. It was distracting having Porter there today, and when Johnny stepped out of the room, August kept trying to open the door.

August was tired–he took a nap in the stroller on walk with Johnny and Porter.

Good play picnic again today–he didn’t eat as much, but he was quite happy and very messy. So happy to have access to shower at the end of those sessions.

MDS says to give one meal through tube, but only when August is asleep, plus his water. We will probably stop tube feeds tomorrow. Wow! It’s going so fast!!!

Forgot to ask MDS for appointment with dietician.

We are to tell August the his tube does not work and we can no longer use it.

I know everyone gets excited at this point and I am very excited that it is going so well, but I am also bracing for the really hard part when August is not eating and losing weight. Most families struggle through the second week. The plateau–when he is integrating changes. Must be patient during this part of the journey.

It’s hot here. No AC at the guest house and it’s hot and stuffy in the hospital too. They don’t use AC like we do in the states, even the trams and buses are stifling.