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?

August had his mic-key button, or G-Tube, inserted in February 27, 2007 (my 38th birthday). After all of his medical complications and surgeries, feeding continued to be problematic and his “failure to thrive” diagnosis was keeping him in the NICU. Breast feeding with a lactation consultant and a multitude of devices, as well as many bottles and nipple styles were frustrating and unsuccessful. Finally, he was released on the first day of spring. We thought that once he was in our home everyone would feel more comfortable and relaxed and our baby would just started nursing, or at the very least, drink from his bottle. Frustration continued during our three-times-a-day bolus feeds resulted in vomiting, reflux and extreme discomfort for months. We have no photos of us bolus feeding August–not one. It was so hard.

I have been taking August to a feeding clinic at the hospital every three months for weight check, developmental evaluation and practice feeding sessions. His slow weight gain and occasional weight loss has been so incredibly deflating and heartbreaking. We have been working so hard on feeding him and celebrating every milliliter he would swallow and hearing that it’s still not enough is so disheartening.

Some GOOD things have come out of all this: swallow study, hopeful diagnosis regarding his developmental progress, and belief that August will walk someday (though at almost 3-years-old, still not walking yet).

However, after years of going to feeding clinic, dieticians, occupational therapists, speech therapists, caseworkers, RNs, pediatric specialists, plus physical therapists; there is no plan to wean him from his tube. Over 90% of his nutrition is through his tube. 20 oz. overnight, two 5 oz. sessions during the day.

I recently discovered a pediatric tube weaning program that has been going on for 20 years where kids are encouraged (not forced) to eat at play picnics with other families. Many kids leave the program in 4-6 weeks WITHOUT THEIR FEEDING TUBES!!! Even writing the words here makes my heart race and brings tears to my eyes. Families are supported by a team of 25 professionals. This program has in-patient, out-patient and net-coaching services.

And now here’s the rub: This compassionate, successful program is located at a children’s hospital in AUSTRA, but everything I’ve read about it tells me it is the best program and I need to get August into this potentially life-changing therapy. Second rub: it costs about $25,000 and is not covered by our insurance.

Some of you know that August’s papa, Johnny, lost his job in April of 2009 and has not been able to find reliable work since then. And his mama, Janet, is working part-time to help cover the cost of COBRA insurance (!). We get food assistance and collect unemployment weekly.

We are asking 1000 people to donate $25 each to send us to Graz, Austria to get August off his feeding tube.

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.

August is doing well these days. He is currently 18 pounds and is crawling around, pulling himself up on things. He has been fitted for orthepedic inserts which will help him as he learns to walk. We also have a small walker which he slowly pushes around.
He is also very communicative making lots of screeches, clicks, kissing, and mama sounds.

Below is a record of August’s current meal recipe.

Base Recipe makes 750 mls:
14 oz. milk (pref. unpasturized goat milk)
2 Tbl. oatmeal or rice cereal
3 oz. vegetable (raw or uncooked)
4 oz. fruit or fruit juice (non-acidic)
1/4 tsp. salt
4 Tbl. oil or butter
2 oz. protein (meat, egg, 1/4 cup cottage cheese, 1/2 cup lentils)
4 Tbl. molasses
Add coconut water, milk, water or tea if necessary to make 900 ml total

Mix ingredients with flax and harder substances at the bottom of the blender.
Liquify ingredients.
Warm and load into pump.
Yum.

Current vitamins per day:
1 drop vitamin K
1 tsp. multi-vitamin syrup
Current meds per day:
2 ml. zantac
2 tsp. enulose syrup

His meal schedule and rate:
160 ml at 81 ml/hr, twice a day with a least a couple hours in between
600 ml at 65 ml/hr, overnight