The weekend arrived and there was no feeding clinic appointments – so although I (Jono) had planned to return to KC on Saturday I postponed it until Monday to help Shari for one last weekend with the tube (and the many spit ups which this entails). This weekend we had several spitups in the car, at the hotel and at a church we visited… oh well, we pray this will not be a long term thing- here is a picture of Josiah and his pump in the middle of a feed.
On Saturday we went to see the Golden Gate Bridge and in the evening went and had dinner with one of Ben Zimmerman’s recent clients – they had a daughter a similar age to Josiah who had had surgery at 2 days to connect the esophagus to the stomach and a couple of heart surgeries at 4 month – she had spent her first 5 months of life on a tube. The GI doctors from Stanford had said to expect feeding problems for at least 18 months after getting off the tube – that is crazy. They said it wasn’t unusual to have problems into Kindergarten…. this just underscores I guess why Ben hates NG tubes so much – they are needed in a way to get nutrition into the body – but should never be considered a long term medical solution – Ben was telling us one of the only cases he did not succeed in was the case of a 2 year old who had an NG tube for 2 years – he got her off the tube – but her Parents could not continue in the feedings so she came into the clinic a second time and although Ben could feed her – she was so difficult her Parents could not do it. I will return back to KC first thing tomorrow AM and return on Friday.