About 4 weeks ago Shari left Kansas City to spend a week in New Jersey before going to the wedding of my brother Justyn in England. It was a little concerning that a few weeks before going on this trip Josiah had shut down with his eating – his drinking was still OK, but the eating had shut down.
Shari hadn’t visited New Jersey since before we got married 2 1/2 years ago so it was good for her to go and visit her parents. I joined her a couple of days before flying out to England. However this is where things got a little stressful, for Josiah completely shut down with drinking as well as eating – we were not even hydrating him. It was in this state that we flew out to England on August 4th – it was a good flight – the Virgin Atlantic flight from Newark to Heathrow was an 8am-8pm day flight – the first time I have ever flown to England during the day – well advised.
However the next few days were very stressful – we couldn’t get any food or drink into Josiah, added to the fact we were staying with friends and family and we had to explain Josiah’s strange eating every time. I get the sense every time that we have to explain the situation that people think he is just a fussy eater (a common complaint among many 1-2 year olds) until they are there and they see us feed him. Josiah had been drinking independently since our trip to the feeding clinic in March – but here we were in England and I had to press his tongue down to get any liquid in him at all – all the time considering whether we go to the hospital to get him re-hydrated
We arrived at Trelowarren – the estate where Justyn and Lucinda were getting married on Wednesday and thankfully Josiah began to drink. It was a beautiful estate – the house started to be built back in 1047 – before the Norman invasion of England. The bedroom that my parents slept in was the bedroom that Charles I had slept in. Justyn and Lucinda were married in the estates chapel – I led worship.
It was a few days after the wedding however that things started to unravel again – we did the long drive back to my parent’s home in Newcastle – a 12 hour journey and unfortunately after that journey Josiah never regained his composure in drinking and every meal was a screaming and stressful time. Thankfully between the meals Josiah has been happy, smiling and laughing – however feeding him for up to 6/7 hours a day was not exactly relaxing.
So at the end of last week we made a decision to cut short the trip and return not to Kansas City, but instead to the Bay Area to Los Altos Feeding Clinic. This last week Ben Zimmerman has been working on volumes and has been feeding Josiah up to 6 oz of solids each meal and 8 oz of liquids. This is great. We have always been blessed by a Christian brother who has a really nice home within walking distance of the clinic where we are staying. We have about 2 weeks left at the clinic and we just need to get on a steady feeding track so we can avoid a g-tube and instead be on a journey to normal feeding.