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.