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

This Sunday, Mother’s Day, The Bhaktishop Yoga Studio is hosting its monthly kirtan to benefit August to Austria.  Each second Sunday, the Bhaktishop family comes together to sing devotional music in a call-and-response style.  Each month the kirtan and satsang (coming together of like-minded people) raises money for someone in the community.Again, every single dollar donated will be matched.  We hope to see you there on what will be a very special Mother’s Day.Sunday, May 9th6 to 8 pmThe Bhaktishop (SE Division and 26th)503-244-0108

August had a weight check one week after we reduced his tube feeds by 30 percent. The threshold was two pounds and he only lost 6 ounces. Awesome. So we can continue his schedule of 4 feedings of 150 mLs each.

Yesterday he ate tuna fish for the first time, lots of pirate booty and cereal.

Now we need to find a great feeding therapist or program to continue on our path towards weaning.

August had several procedures done yesterday at OHSU. He had a cleft palette repaired. His palette had not formed correctly when he was born and was causing problems with speech, eating, and hearing. He also had his frenulum snipped because his tongue was not allowing him to move food to the back of his throat. The last procedure he had done was to have ear tubes put in. This will allow his ears to drain better and hopefully improve his hearing.

The surgery went OK, but there was an old clot at the back of his nose that started bleeding which caused some stress with us and the doctors until the cause was found. He and Janet had a restless night at the hospital but we are all home now.

August seems to be his old self, lots of energy to explore and play. We are hoping to keep on top of his pain and wishing for a speedy recovery.

August recently got a new walker that goes behind him. Below is a video of him touring the first floor of our house, with only a little help steering!

Janet and I are at the hospital while August undergoes a three hour hearing test. The test is to try and narrow down where his hearing loss is located. Depending on the results this impairment might be correctable.

Unfortunately, he has to be sedated for this test. On the plus side, Janet was able to replace his “button” while he was asleep, before they did the hearing test. His button is the tube into his stomach through which he is fed. Janet did it very smoothly, having seen it done a couple times before, and the nurses all complimented her.

She left a couple minutes ago to go to Porter’s school for a special presentation. Porter has been helping to build a Yellow Submarine at his school and they’ve created lots of learning activities around it. After showing Janet what his been doing they’ll come back to hospital to pick August and I up.

August has been doing well lately, despite a cold. He’s been crawling around and has braces to support his ankles to help him learn to walk. He pulls himself up on us and furniture and has even made it up a couple of steps.

He’s been nibbling on some food but progress has been slow for learning to eat. His favorite thing to eat are cheese puffs.

Janet, Porter, and I have been learning and using sign language, and August really likes it when we sign. He has learned the sign for “more”, which he does to us, but where not sure he knows what it means.