We’ve settled into a routine over these two weeks – up around 5ish and to the clinic for a 6am feed then a mid morning snack and lunch at 1pm. Then dinner at 7pm. This weekend we had decided to work through due to the set back last weekend when we didn’t work and put him back on the tube. After the mid morning snack we decided to go on a little drive through the Los Altos Hills just next to the clinic. They really are beautiful – with some great views down into the Bay Area.
Tonight was our first feed in the room with Ben – he still did the feeding, but we were in the room with Josiah – we were prepared for a fresh spike of resistance from Josiah due to this change – but it thankfully wasn’t that noticeable. One thing that I was a little discouraged about tonight was the fact in this evening’s feed his solid intake was a little bit less than it has been. (he is still drinking the milk amazingly well though!) We are a little confused as to why this is because Josiah seems to was accepting the food fine. So this week Ben will be figuring out how to get a consistent volume of solids into him as well as training us in the protocol.
Before we came to the clinic if we got all his feeds in him by tube he was getting 900cals – Today at the clinic (and a bed time drink we give him at the hotel) he got over 1500cals – he gained over 3 oz in weight and is heavier than ever – so we have a lot to be thankful for – This feeding thing is a troublesome business, but we are getting there.
Here’s Josiah tonight waiting for his last meal of the day – see the nice orange grove behind the clinic 🙂
He is such a cutie! I love that pic.I am so glad things are going well and that you guys are having an opportunity to share your experience with others. I can’t wait to see you when you get home. Love you!
Josiah looks fantastic! You can finally see the boy and not the tube! I am so excited that you have had success and have no doubt that your success will be long term!Please don’t think that all OTs follow that ‘leading OT’s’ philosophy. Those of us who are less scholarly and still in the trenches with families in distress follow a more foundational OT goal of simply ‘helping the child and family function their best in their environment.’ This does not mean years of therapy without success. It means combining a wide variety of experience, tools, skills and techniques tailored to meet the needs of the situation with specific goals and timeframes, then recognizing when you are unable to meet the needs of the child. You are absolutely right in your thoughts and I agree.Your pursuits and success have, once again, broaden my knowledge and spurred me to learn more. The question I now ask myself is how can I learn more about the techniques that have worked for Josiah, combine them with my experience and previously successful techniques and continue to help families who could never afford in time and/or money to make the journey you have. You have given me more work :-)Take care of yourselves. Tell Josiah I knew he could do it! You continue in my prayers.