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 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.

And now for the super exciting news…drum roll please…a very generous donor has offered to match our August to Austria donations dollar-for-dollar starting today!  So every contribution will be doubled until we reach our goal of $25,000!!!  Words cannot convey our deep gratitude.  We are humbled by how much people are opening up their hearts and wallets to our Little Man.  Giant thank yous to all of you who have donated so far.  We have not had time to thank you all individually yet, but know that you are in our hearts and our dream of weaning August from his feeding tube is possible because of you and your generosity.  You are truly changing a life.

We woke up early Friday morning–5 am to get August to OHSU for a 6 am check in for surgery.  Dr. Milczuk placed his new set of ear tubes and 6 pokes into his arms and wrists for all the blood work that was ordered.  Poor little guy, even under anesthesia he is a difficult poke.  His veins are tiny and ropy and all the good spots are covered in scar tissue.  He’s three.  Overall surgery went well with no major complications or delays.  3 1/2 hours later we were home (a 10 minute procedure).  Porter spent the night with a friend and got off to school without a problem–thanks Jessica!

Dear Mr. Zuckerberg,When I first joined Facebook last year, I immediately searched for groups of parents of special needs children.  Because in February of 2007, my son August was born with a very rare genetic anomaly.  He is missing the tip of chromosome seven, which has contributed to a number of challenges including a tethered spinal cord, hearing impairment, misaligned bowel, developmental and gross motor skill delay, and feeding difficulties.  He was determined as “failure to thrive” and had a feeding tube put in at three weeks old so he could get big enough for us to take him home from the hospital 41 days after he was born.  I ended up finding a group of parents of kids with feeding tubes.  I read the profiles and looked at photos and searched for someone with the same genetic deletion as my son.  I did find a couple of families and have connected with them.Through “My Child Has a Feeding Tube” group, I found a site called Tube Fed Kids Deserve to Eat, which was full of stories and videos of kids eating, having picnics and being weaned from their feeding tubes.  I clicked on a link which sent me to Graz, Austria.  At the University Children’s Hospital, kids are learning how to eat!  There is a team of 25 professionals who have been weaning kids from their tubes for 25 years and they have a 95 percent success rate!  I devoured every bit of information on the site.  I couldn’t believe what I was reading.  This place really exists and has an amazing approach that lines up with my family’s beliefs.  Their philosophy is simple: Understand the problem from the child’s perspective, and stimulate his sensory and motor abilities.  The child’s need to develop his own will power directs his individual treatment.  It’s a child-led, compassionate feeding program that is not replicated in this country.  I have looked for comparable programs here, where my insurance would actually cover a portion of the costs, but nothing even comes close to what they are doing in Austria.

For something this important, we want to send August to the best place in the world where he has the greatest chance of success (95 percent success rate).

If we had a source of employment we would consider taking out a loan, but my husband lost his job last April.  We are currently both working part-time and sharing the home-front duties.  Without income, borrowing money is nearly impossible.  So that is why we have turned to our community and our Facebook friends to help us spread the word and raise the funds.  I had the idea to set up a page and try to get 1000 people to become a fan and donate 25 dollars each.  Right now August to Austria has 120 fans who have contributed $3670.  I found the Graz feeding program on Facebook so I decided to try our luck again with Facebook. We are trying to raise money to get August to Austria this summer.

Would you, Mr. Zuckerberg, be willing to match what we raise?  Having my son August off his feeding tube would have such a positive impact on my family’s life.  The tube requires constant thought and attention.  Besides all the blending of food and time it takes to get his nutrition in, the potential for the tube to get pulled out is always present.  We have to carefully watch August as he gets down from the couch and make sure his tube doesn’t catch on anything.  Without the tube, we would be able to leave the house with a few snacks in the diaper bag–oh, what freedom!  Eating a meal with August could be a pleasant, positive experience instead of frustrating.  Many meals end with exasperated parents and a three-year old in the high chair with food coming out of his mouth because he doesn’t know how to swallow.

After we get back from Austria, I want to help other families get there and help their children learn to eat.  I hope to raise money to get them there, while developing a program here in the United States.

I wanted you to know how your service has helped us so far and will have a huge impact on the rest of our lives.  We imagine a life without that tube, with less worry, less stress, and a happier healthier son who eats orally.  Thank you for creating Facebook.  If you have any questions, or want to help our cause please contact me at the address below.  Anything you can do to get August to Austria would be greatly appreciated.

Thank you so much for your time and consideration.

Our first press release is included.

Facebook Raises Money For Three-Year-Old In Need

A Portland, Ore., family is using the social networking site Facebook to help raise funds for their young son. Janet Funk and Johnny Levenson hope to raise $25,000 to pay for an intensive feeding therapy and tube-weaning program for their son August.

“I had the idea that we could spread our message on Facebook and quickly get 1000 people to donate $25 each.  So we set up a fan page and August to Austria launched on August’s third birthday with the first post, “All I want for my birthday this year is to learn how to eat.”  Janet and Johnny invited their friends to join, to contribute and to spread the word through their status updates. People can donate, become a fan, view photos and videos, post messages and interact with others who are interested in his cause.

August Miles Funk Levenson was born three years ago at Emanuel Hospital in Portland.  Ten hours after birth he was taken to the nursery, then to the NICU because his heart was racing—over 220 beats per minute—and not coming down.

“They had to hold a plastic bag of ice held over his face to shock his system and slow his heart down.  It was really scary to see doctors basically suffocating my baby with a plastic bag full of ice,” said Johnny.

Six weeks and countless tests, surgeries and procedures later, he came home on the first day of spring, March 20, 2007.

All of his medical challenges seem to be due to a genetic anomaly—he is missing the tip of chromosome 7.  This deletion is a very rare and unnamed condition, terminal deletion of the long arm of chromosome 7.  Unfortunately his doctors and geneticists don’t know what is contained on that specific piece of DNA, so they don’t know how it will affect him.

Along with his heart problem, tethered spinal cord, bowel misalignment, and poorly functioning kidneys, August was diagnosed as “failure to thrive,” three words parents do not want to hear.  He had a G-tube inserted when he was three weeks old and now over 90 percent of his daily nutrition is delivered through his feeding tube and pump.

August goes to feeding clinic every three months, where he gets a weight and height check, diet modifications and techniques to learn how to eat orally.  The clinic here in Portland is not providing a plan or goal to get rid of his tube—they just want to continue to increase his calories through his tube.

Also through Facebook, Janet found a pioneering tube-weaning program with a high success rate, 20 years of experience, a patented therapy, and a team of 25 compassionate professionals.  The program is done at a children’s hospital in Graz, Austria.  “When I first read about Graz, I was so amazed and excited and knew that this is where I will send August, gushed Janet.  The program is not covered by the family’s health insurance, which they only have because they are paying COBRA to keep benefits since Johnny was laid off last April. 

“Getting August off his feeding tube would change our lives.  The tube is a huge source of stress for us and trying to teach him to eat ourselves is completely overwhelming,” said Janet.  The family has been struggling financially since Johnny lost his job.  Both parents are actively seeking employment.

The fundraiser has spread beyond Facebook.  Janet’s friends at The Bhaktishop yoga studio will be hosting a kirtan benefit for August to Austria on Mother’s Day, May 9 from 6 to 8 pm.  Sellwood Yoga and Stumptown Yoga will also be hosting fundraisers for little August.

You can find a link to August to Austria on the blog, augustmiles.org.  For more information about the program in Graz, go to notube.at.