DAy 5 Graz, July 9
weight=9.4

PT with Eva. Cranio-sacral work. Bottom half loose, all over the place. Top half tight and strong.

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.

Weight=9.55 kg

Swimming this morning was great. Warm and happy. Porter loved it too.

LOGO=speech therapy with Christina. Good session. August drank from his sippy cup and took juice through a syringe and Finger Feeder tip attached on end. Squirt into side of mouth.

Play Picnic=great. Split into two groups so siblings could join in again. We were in the quiet room with MDS. She said August is doing great, asked if he was always so calm and content. Nope!

He ate pom-bars and pudding and was his usual self. Tasted lost of things, dumped food out, crawled through it, not bothered that it was all over him. Ate a whole chocolate umbrella.

We stopped his second tube feeding, so now he is down to one dinner-time meal through his tube and his water+honey at night.

August was able to get in shower today after picnic, he was such a mess.

Got together with 2 other families this afternoon. Very nice people from Wales and London. Zhara’s (20 month old girl) family is staying right across the hall from us and Adam’s (3 year old boy) is staying in a hotel downtown. The kids sat on floor, fed each other and played. We will hopefully do more of this.

So far, so good. Porter has been sleeping a ton and I am tired too. Fifteen-minute, uphill walk to breakfast every morning, then walk to hospital, then back to our guesthouse. Exhausting. And it is hot, humid and sunny. Today we bought a week-long bus/tram pass and rode the #82 home, still a killer hill to walk up, but it is faster. My calf muscles are sore and tight. We should be in great shape by the time we get back to Portland, though with the amount of food we are eating, it’s not likely.

I will bring August to therapy (LOGO) at 8:15 tomorrow while Porter and Johnny explore the city and the armory–largest collection of armor and weapons in the world.

PT with Eva. August needs to work on sitting in Z position to create hip opening and rotation. Support him and make sure he shifts weight to put hand down to move out of Z. Both sides.

Do not help him to stand.

Eating ideas: thick soup (add Duocal), yogurt through syringe

Eva will do cranio sacral work

Muscle weakness not necessarily a problem

Day 1 July 5th weight = 9.9 kg

Met whole team today. Dr. Margurite Dunitz-Sheer leads the program. Plan to cut morning feed tomorrow, then go to OT and play picnic.

Met other families, most speak English. Zhara’s (20 month old girl from London) family is staying just across the hall from us.

Today August had OT with Maryanne. He played on the platform swing and LOVED the tub of lentils. He sat and played and stayed focussed for long time. Scoop and dump. Sat up well because supported all around base by lentils. Stood holding on to edge of tub and stomped feet around. Happy and laughing.

Porter so patient and helpful all day. He got to be part of the play picnic (one sibling=two therapists). He also was a good play partner with August in the lentils.August loving the lentils in OT

We arrived in Graz on Saturday, July 3rd. Such a long time to travel. We left our house in Portland at 5 AM Friday morning, flew to Washington, DC, then to Frankfurt. Frankfurt airport was so hot and didn’t have very good signs. We couldn’t find a place to exchange our money, but we did finally find the right gate, only to find out that our baggage was only checked through Frankfurt and was sitting up on a baggage carousel. Johnny went all the way back, found the bags and had to take Porter’s suitcase back from a guy who decided he wanted it. He got our bags checked, headed back through security and made it back to us. We were so exhausted after the overnight flight–we slept very little because we were on west coast time still. Took a very small aircraft one hour and ten minutes to the small Graz airport. It was Sunday, July 4th. Hot and muggy. Found a taxi right away to take us to our guest house, part or Hauserl im Wald, the Hirshenhof Guesthouse.

Surprised by the complete lack of air conditioning here. None in our place and not even in the hospital. It’s been hot and humid and sunny out and we had thunder and lightning storms the first few days in the afternoons.

Guesthouse feels like Dr. Doolittle’s place. There are peacocks, chickens, ducks, llamas, deer, frogs, a cat, and ponies. It’s very beautiful and a bit loud at night. The male deer (mule deer?) charge and snort all night.

Everything is closed her on Sundays–even the grocery store. Been eating at the main hotel’s restaurant, which is a 15-minute uphill walk through the forest. My calves are feeling it! It’s a tough walk with a stroller–lots of tree roots and rocks to manage.