Over 20lbs

Yes – that’s right this morning Josiah was 20lbs and 2oz – he’s gaining like a heavyweight!!

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1700 Calories and Counting…

So today Shari got to experience the pleasures of feeding Josiah with a spoon – not fun. The aim was for us to come home on Saturday we’ll make a call tomorrow to see if we will actually do this or perhaps spend a few more days in Los Altos getting parent training – At the moment we are supplementing everything that he doesn’t take of the solids with a high calorie milk called “Just for Kids” – the result has been that today we are looking at a day of over 1700 calories (rather than just 900 calories on the tube). Shari fed for breakfast and for dinner and I have to say she got much better as the day progressed – the night feed was much better – I think she will pick this up great. We had to decide who was going to be the primary feeder – and I think as Shari is the primary caregiver the decision was not a hard one… (well not for me 🙂 – I am here for moral support). The feed at breakfast was hard with Josiah crying throughout – I think in the feed tonight Josiah was smiling in parts.

The funny thing is perhaps as a result of the increased calories Josiah is really active – he started crawling the week before we came to California and he is crawling “everywhere” now. Ben is confident we can teach him to walk within 10 weeks…. well we’ll see 🙂 We went to Palo Alto for lunch today as it is just down the road from the clinic and then had a small walk around the Stanford Campus – hence the picture below – it reminded me of my happy college days.

We are seeing consistent weight gain with Josiah now – who knows – if we put on another 3 ounces tomorrow we may hit 20lbs….

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I’m Learning New Things

Just down the road from the clinic is Stanford University – here’s a little scholar. Each day he is learning new things – We are learning to feed him solids – while his morning feed this morning of 7.5oz of 1.5cal milk we did back home – That’s nearly half a pint and he just drank it down – that’s great progress from 2 weeks ago. Well – we’re off to the clinic now for his evening feed and Shari is behind the spoon this time

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The Learning Begins… in Earnest

6am this morning the learning really began… it started with a nice cup of tea (we got Ben a kettle and some tea, so he is prepared for any English clients), but it got harder after that. Ben has developed a specific protocol how to feed Josiah so he will swallow and not spit up. Unfortunately Ben says that protocols for NG kids are the most difficult. After having a rubber tube placed down your throat for several months is it any surprise it is hard for him to swallow?

This protocol is to get him to take solids orally for nutrition-but in the short term it is to get him to learn to swallow again. Regardless, it’s pretty hard for me to learn – I can watch Ben do it and think it’s really easy – but it’s a bit like watching someone play an instrument – you can see what they are doing – but it is a little harder to get all co-ordinated and then stay encouraging for Josiah. It got quite messy today. I did all the feedings today with Ben’s help and Shari will be the one behind the spoon tomorrow – I guess if the one really good thing to be taken from the day is that Josiah took over 1600 calories and is still continuing to gain good weight – even once we have got the protocol down it will take a while for Josiah to learn how to swallow well – so if you can agree with us in prayer that this process will be not a really long time we would be thankful.

Oh well it’s getting late so I’d better sign off

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Relaxing after a hard day Eating!

Shari is going to post an entry tonight as I’m too tired and busy with other things – but I couldn’t resist posting this picture as he looks so cute – saoking in the tub after a long hard day at the clinic – if you look close at his tummy you can see his surgery war wound from when he weighed only 1lb 9oz. He’s just a bit heavier today 🙂 He’s gonna love me for these type of pictures in future

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Parent Training Begins

Jono has writer’s block tonight – so I (Shari) am taking over the blog!   We are continuing the process of taking over the feeding from Ben.  Ben fed Josiah all of his solid food today, as he was still experimenting with a few different possibilities to increase volume and ease of feeding, and we fed Josiah all of his liquids.  It is amazing how well he now drinks.  It is often tempting to just forget the solids and just feed him all his calories with his milk, but Ben says that getting the solids into him is the key to him drinking the milk. 

The hardest thing for Josiah is swallowing his solid food.  He is getting the majority of his calories from the milk as he averages about 2 oz of solids each feed.  Ben says he sees this with all of the kids who were on NG tubes – they often need a few months to master swallowing.  Once we get down Ben’s feeding technique for Josiah it is simply going to take patience and perseverance to increase the volume of solids he is taking. 
He gained 3 more ounces today – so he now weighs somewhere around 19 Ibs 10 oz.  So even though his solid intake could be better – he is getting all of his nutrition by mouth and it is more than enough to sustain him and help him grow!  
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Another Day at Los Altos

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 🙂

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Need New Pictures


I’m sorry this blog is starting to get boring – we need some pictures to liven it up a bit – I apologise for our lack in this regard – we need to get on that…. tomorrow… in the meantime – here’s a picture taken on Christmas Day 2007 – Josiah in the broadcast trailer working the telemetric cams

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Easter Saturday

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.

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Back to the Clinic for Jono

After three and a half full days in Kansas City catching up on work, having meetings and shooting a number of TV programs and promos for IHOP and TheCall – I (Jono) managed to get my assistant to take me to the airport for an early morning flight back to California (thanks Hanna – your reward is in Heaven :)) After an interesting 3 hours talking to a Catholic Theology and Philosophy College Student I finally saw the Bay with the Golden Gate Bridge and Alcatraz and the San Francisco skyline basking in the morning sun. And after landing at Oakland I spent a very productive few hours with Fremont Christian Church – a Chinese Church in the Fremont area – which strangely enough is this weekend hosting a speaker from Kansas City called Mike Bickle…

Anyway – Shari posted the blog on a feeding group – so I better get straight to business – today Josiah’s feeding has gone back up again – he ate over 1400 calories at the clinic and tonight greedily “downed” another 3oz (90 cals) of Pediasure at the hotel room – he would have taken more – but we thought it prudent not to make him spit up (not that he has been spitting up – but I guess I’m so used to it). Ben has noticed a decline in the milk that he was drinking and thinks it is down to the water we are giving him – so has suggested we give him milk – it is so refreshing to have a baby who is grabbing the cup to have a drink rather than having a baby that twists and turns so the cup doesn’t come near his mouth.

Shari and the other Mom who is doing an intensive at Los Altos have become crusaders for the behavioural approach to feeding therapy writing on online forums – even as I write this she is feverishly typing away 🙂 In the last day she has been following a thread of a family who were going to come to Los Altos but wanted the opinion of one of the main schools of Occupational Therapy thought

In response to the question of how can we get kids to eat this leading OT said

First of all, I don’t believe that we can ever “get kids to eat”. Somehow the eating part is really the kid’s job and not something that we get them to do. Encouraging kids to eat is part of our job and for me isn’t based on a series of techniques. The firm foundation is attitudinal and is really a philosophy of what we believe and how we perceive the kids and the choices they have made. Let me see if I can expand a bit on this idea.
When we judge our kids as having a behavioral problem or are fearful that they are not progressing fast enough, our attitudes and beliefs communicate themselves loud and clear to the child. They become guarded inside, in part because they know they can’t trust us. Most of their energy is going toward protecting themselves and not toward learning something new. So, for me, the first and most important step is becoming clearer about my own attitudes and beliefs. I’m not talking about just appearing to be accepting and encouraging to the child. When our inner messages don’t match the outer messages we give kids, it is confusing for them and they protect themselves even more by saying “no”.

Now I don’t think all OTs take this approach – our OT in KC is very eager to learn new approaches to feeding and is great – but the approach that the OT here suggests is responsible for a generation of kids who are selfish and wilful – after talking about it we responded (I wrote this:

I’m sure you are way more educated in this field than I, I’m just the parent of a preemie with feeding difficulties – but your whole approach to feeding seems bogus. When I was growing up I was “made” to eat everything on my plate, I wasn’t “allowed” to leave the table unless I had eaten everything on the plate. I didn’t like it at the time, but I am so grateful to my parents for loving me enough to teach me how to eat, how to have respect for others, how to think of others apart from myself. We have brought our little fella to the Los Altos Feeding Clinic because he didn’t know how to eat – every bite is painful. Nobody enquired of his preferences when we stuck the feeding tube down his nose and into his stomach – we did it because we loved him and wanted to see him grow, likewise I’m not asking his preferences now when we are overcoming some of the difficulties and teaching him to eat. Sure he cried and screamed the first few times and spit up – but he did that again and again when we put the tube down his nose – but after only a few days he stopped and started to eat. If we took the OT route at what point would he eat? When he wanted – 5 years old? 10 years old? And accepting the fact that he is a “picky” eater because nobody has loved him enough to show him there is another better way. I’m just one parent with a whole system that says otherwise – but this one parent says – if you love your baby take medical advice – but don’t bow to every whim of the baby – do whats in their best interest. An approach which bows to these whims is not only bad (really bad) for the child – but it bodes ill for our society as a whole.

A Concerned Parent

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