This has been such an interesting and intense trip. I am sitting on a bed in the Mariott Hotel, south of Graz, near the airport. There’s nothing around here. Desolate industrial park, next to a lake resort where people live/camp for the summer. There is an adrenalin park at the lake, a bunch of playgrounds, boats to rent, zip line across the water, restaurants and beer gardens. But no one is going there. It’s empty.

We are heading back home to Portland in a few days. August’s three-week tube weaning program ended last Friday. We thought we were going to pull out his button and toss it in the river. We didn’t. We thought he would be eating and drinking a ton of calories by now, he’s not. As usual with this unique little guy, nothing is going as I thought it would. August has never followed anyone else’s schedule of “developmental milestones”. He has always performed the unexpected. When doctors talk about the small chance of complication or the minimal occurrence of failure or the normal course of events, I just look at them and say, “well this IS August we are talking about and we should expect the unexpected.”

With a 96% reported success rate for this program, I expected August to not be one of the four percent. I hoped we would go home tube-free. I expected him to learn how to eat enough orally to sustain himself. So far, this is the progress that I see:

August does drink more milk (he was up to 1/2 liter a day)
He is able to control his saliva better (less drooling)
He is interested in eating more, and does eat more (at least puts more in his mouth)
He is able to concentrate on an activity for a longer period of time

What I continually remind myself is that we have not used August’s tube for nutrition since July 9th. And that is pretty awesome. We have never been able to do that. He has lost a bunch of weight, down to 9.25 kg from 9.9 when we started, but the average weight loss for kids who go through this program is 10% and he’s not there yet.

The hospital absolutely counts August as a success. We learned a lot, we will bring a lot of new tools home with us, but there is still a part of me that says, no he’s not eating. He’s not able to sustain himself. We still worry when he doesn’t swallow his food.

When he was drinking so much dairy, he was pooping several times a day. Suddenly he stopped and he hasn’t gone in several (5???). I have lost count. We have tried enemas, suppositories, laxatives, softeners, massage, warm baths, etc. If anyone reading this has a suggestion (I am thinking alternative med ideas like herbs, Chinese herbs, acupuncture, etc.). Please post a comment with your thoughts on getting this kid moving again. Since the button is still in we can put in any nasty-tasting things we want.

We went to Salzburg for the weekend and Johnny was laid up with what we thought at the time was food poisoning, but four days later when I got it, we were suspicious. Porter spent the past two days with the same thing. Miserable, barfing, unable to be upright. Gross stomach bug took out 3/4 of us.

This has been such a wonderful and difficult journey for us…for all the families here that have to feed their child through a tube. I have met some wonderful families. It’s been so comforting to be around other parents who “get it”. Who understand the isolation, the frustration, the absolute fear we live with when our children don’t eat. Can’t eat. We have machines keeping them alive. We rely on plastic buttons, tubes and bags. We spend a small fortune on supplies and tests and surgeries and appointments and therapies. We’ve spent hours that add up to days, that add up to weeks in waiting rooms. We dread taking our kids to the doctor or the hospital for their health needs for fear they will catch something. We don’t sign them up for play groups or music class or pre-school. We don’t take them to indoor playparks, or messy art, or mom’s group. Mom’s group? It saved my life after Porter was born. I can’t let Porter go play with his friends if anyone in their house is sick, for fear of August catching something. The other parents here–they get it.

After getting our hopes up that August’s button would be removed today…it’s not. He is just not eating enough calories and his weight is still dropping. We will probably have to wait until we get back to Portland to take it out. I don’t know what else to post. We just continue doing what we are doing and remain hopeful he will figure it out and start eating more and more. The heat does not help with the food consumption.

We did meet a really nice mama in the park last night. She is from New Orleans, living over here with her Austrian husband teaching English. She has a little guy named Sam, lives near the hospital and offered up her apartment to us to stay in for free while her family is traveling. We shall see if it works out.

Weight is still fluctuating a bit, but so far only lost a little bit since we’ve stopped the tube feeds on Friday. Still planning on removing the mic-key button tomorrow. If all goes well we will train it over to Salzburg for the weekend. Should be a beautiful, more typical Bavarian town with castles, mountains and soft pretzels. We will be singing songs from The Sound of Music.

Wanting to find different accommodations in Graz, something a bit more convenient as far as location, proximity to restaurants and the tram and a place where we can get on-line. Now we can only connect when we are in the hospital.

Therapy continues to go well. August is a star at the play picnics. Eating (and actually swallowing) and drinking tons of milk. We need him to start drinking water and believe that this will come along, especially in the hot weather.

Swimming this morning in the warm water, speech therapy next. Porter continues to be so helpful.

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.

41 days from now it will be July 4th–the first day of August’s tube weaning therapy.  Wow!  We have so much to do still, including raising more dollars to get us there.   A huge thank you to everyone who has donated so far–all contributions are being matched dollar-for-dollar.  Our friend Kate hosted a family trivia night in France, our friend Mark is helping out with flight and hotel points, and our local yogis are hosting benefits.There is a Weekend of Yoga for August coming up June 12 and 13.  Right now we have two SE Portland Studios on board.  Stumptown Yoga will host a benefit class on Saturday, June 12th and Sellwood Yoga will teach a Family Yoga class for August on Sunday, June 13.  Check back for more deets.On June 16th, August will undergo surgery to correct his ptosis (droopy eyelid) to help his vision to develop in his right eye.  He is going to look so different!  We had some family portraits taken and will have another round doe after his eye is done.