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

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. 

Went to see Dr. Milczuk today at OHSU.  He’s the ENT doc who found the cleft palate and put in August’s last set of ear tubes.  Last month he said that the tubes had come out and that his eardrums looked thick, which could mean fluid in the ear, which could mean another set of tubes going in.  We found out today that both ears have fluid and he will in fact need another surgery to get tubes put in.  Don’t know what other procedures are on the horizon, but in my typical form, I will try to get multiple procedures, as well as a bunch of blood work done at the same time to minimize the number of times he has to go under.

August turned three recently and I have been thinking about the day he was born.  It was sunny and warm and beautiful in Portland, just like it was this year.   Three years ago we spent his first 41 days of life in the NICU.  August came home on the first day of spring with a G-tube, 6 prescription medicines, bags of syringes and tubes, bottles, nipples and a freezer full of breast milk.  I can’t believe that he still has his G-tube three years later, but I guess once I accepted it, I’ve always thought he would be three when he got rid of it.  So here we are…facing another day of surgery and many more nights of tube feedings and little sleep, another shipment of feeding supplies, another meal not eaten (or eaten and spit out).  But I will not go another year without intensive intervention to get this kid to eat.

Can’t wait to see what his 4th birthday is like!

Turning three is a big deal. This is the year we want August to eat on his own and get rid of his tube. We are kicking-off our August to Austria fundraiser, mostly on Facebook, but through traditional e-mail as well. I’ve always thought that August would get his tube out at three, then I came across this amazing tube weaning program for kids. It’s at the Graz University Children’s Hospital in Austria. They are ready and excited to meet August and help him eat and eventually wean him off his tube.

Our insurance won’t cover any of the expenses for this treatment. Both of us are unemployed right now, actively seeking work. We are quickly going through our savings, but we don’t want any of that to stop us from helping our Little Man learn how to eat and change his life.

If you all could kick in a little bit–we are hoping for 10000 FRIENDS TO DONATE $25 EACH–to cover the cost of this innovative, intensive and effective therapy. He could be off his tube forever after only four weeks on in-patient treatment. Can you help us out? Do you know someone who might want to help? Please send them a link to this site, or become a fan of August to Austria on Facebook, where you will find photos, a donate button, and an easy way to spread the word.

Thanks!

Last set of ear tubes have come out. Ear drums looking thick–could be fluid again, which could mean another set of ear tubes placed. Damn. Thought the cleft palate repair was supposed to help with fluid drainage. Will check on those ears again in a month.

Supposed to patch the left eye everyday for an HOUR or TWO. Really? What two year old keeps an eye patch on. We are lucky to get more than five minutes.

What I am looking for in August’s next feeding therapist/therapy/clinic:
-compassionate (no force feeding)
-enouraging, positive
-family involvement and teaching
-goal=tube removal
-peers (watching other kids eat)
-intensive sessions every day
-supportive team of professionals
-involving play, music, movement (like a typical toddler’s day)

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.

Had a good appointment with Dr. Cockrell (pediatric rehab and development) and Marta the dietician. Because August’s weight gain has been good over the past six months and he is healthy and supple, they are supporting our request to cut down on tube feeding instead of increasing it. This is a big decision for them to make after three years of struggling for every ounce of weight gain.

August had been receiving 900 mLs of blended food–600 overnight and two 150 feedings during the day. We are now doing four 150 mL feedings over the course of 24 hours. Our goals are to get August to sleep better and to motivate him to eat orally. So far so good, but he was awake at 4 am for the day. Awake and ready to party. He asked for food several times this morning and actually ate some. Could we actually be catching a break?