The second weekend in this feeding program and this weekend we had decided to work through instead of just putting Josiah back on the tube. Ben is confident tonight he has worked out the final piece of Josiah’s “protocol”. His feeds consist of a high calorie mush of various high calorie stuff and then milk – the solid part of the feed over the past few days hadn’t been going so well as Josiah had continued to vomit – but tonight Ben said he has found the key – no more vomit. That said, he also said after he has perfected the protocol for the first two feeds tomorrow, we will start parent training tomorrow night. Today Josiah took over 1500 cals by mouth which is pretty amazing and he is so happy about it.
With Shari and my background in TV we have been trying to persuade Ben to get some parental video testimonials for Los Altos. This is such a big problem in the US (and around the world) and nobody is really having great success in getting kids off feeding tubes. Los Altos success rate is above 91% of eliminating tube feedings. Ben has said that if someone leaves the course early that is counted as a failure – I say he should just invalidate those people. He also does not count it a success if he manages to eliminate tube feeding – but the parent cannot sustain the oral feeds. His success rate of 91% is therefore pretty astounding also considering the speed with which this is achieved – most of the kids are taking all of their nutrition orally in the first week of treatment. With all of these amazing facts and the amount of parents who are at the end of their tether because their child simply will not eat – it seemed like the perfect video testimonial subject – We shot the first testimonial today from the other parents who are doing an intensive at Los Altos. The production quality is terrible with no microphones and shooting under a noon day sun with two camcorders – but the testimony is powerful – It is just a pity Final Cut Pro got wiped from Shari’s hard drive recently so we can’t edit it well while here.
Much of the feeding therapy that is out there in this country is based on getting the child to want to eat – however the facts really show it doesn’t work that great – kids are on tubes for years while going through therapy – it is not a few week job to get off completely.
The other thing I did today was go up to Fremont and help the Chinese Church there out with their media – I got called up to the stage at the beginning so I could greet the people and let them know what I was doing – it was a good time.