The Official Site of Jono & Shari Hall

I hate using cliches, but one seems appropriate to describe the day – we hit a few bumps in the road. It is absolutely amazing how just one little thing can upset the whole eating process! Over the past week Josiah has gone from barely being able to sip water from a cup without choking, coughing or vomiting to gulping it down with gusto! This may seem like a good thing – but it ended up being another one of his tactics to prevent eating. He really started consuming the water between his feeds about 2 days ago. At about the same time we noticed him getting a little fussier again during his feeds. This morning at his 6am feed Ben could barely get him to eat or drink, because Josiah had drank a bunch of water 1 1/2 hours before.

Apparently this is another pretty common situation in kids with these eating issues. They will drink water like a fish and refuse to eat. They could go all day on just water. I actually talked to one of the other mom’s whose 9 month old son does this and she said he has gone 20 hours with her not being able to get anything into him but water. (and he wasn’t sick or teething) The more water we let Josiah drink the harder his feeds become! Ben’s recommendation was to cut out all water between feeds. The feeds did seem to get a little better after we did this but Ben said it may take a few days to get things completely back on track.

The great news from today is that Josiah gained an incredible 8 ounces yesterday! This was all catch up weight – as that is the exact amount that he lost last week when we first weaned him off of the tube. He wont gain that every day (otherwise we would have a sumo wrestler on our hands). Ben says they usually catch up on the weight they lost and then taper off.

Well, tonight’s post will be short because I am really tired. Josiah is still doing very well. Today wasn’t quite as good as yesterday – as far as how much he ate and kept down – but he still had a very good day. He also had gained 2 ounces when we weighed him this morning, which is the first time that he gained weight since being off the tube!

What I have learned through this process is that getting nutrition from a feeding tube is very different than getting it by mouth. The body just processes it differently. Unfortunately there really has not been much research done in this area to determine exactly how feeding tubes effect the digestive process. For some reason it seems that all of the mother’s I have talked to have experienced the same thing – when their child was first weaned off of the feeding tube they lost weight even though they were consuming more calories by mouth than they were from the tube. All I know is that Josiah’s body has been making some big adjustments over the last couple of days. He has gone from 6 – 7 feeds in one day to 4 feeds. He has also never digested this much food in one setting before. It seems that his digestive tract has not yet caught up with the changes. He has been quite gassy and irritable. He woke up several times last night with gas pains and was inconsolable for a little bit. I did some time pacing the floor with him which finally settled him (it would have been nice to have had Jono’s help last night! – I am sure he got better sleep in KC) He seems a little more settled tonight than he did last night, so hopefully I will get some needed sleep.

This is Shari taking over posting for a few days while Jono is back in Kansas City. Josiah and I took Jono to the airport this morning at 4am so that he could catch a 6am flight back to KC. (That was after I had gotten up to feed Josiah at 11pm and then again at 2:45am!) After we dropped Jono off, Josiah and I had a half hour nap and then headed to the clinic for the 6am feed. Needless to say – I am feeling a little tired so this may be a short post!

Today we had a few ups and downs. First the good news – Josiah gained back almost all of the weight he had lost in the previous week as a result of all of the tube feedings that we did over the weekend. The bad news is that he regressed a bit in his eating skills. Ben had a really tough time getting Josiah to swallow at all. One of the reasons for this is probably a result of the tube having been in his throat irritating it. To prevent anymore setbacks, the plan is to no longer use the tube and work through the weekends – so I guess that means we will be spending Easter in the clinic! (Ben is Jewish – so it doesn’t really matter to him!)

Even though the day was a little rough, Ben still managed to get enough calories into Josiah. He is amazing! We will have to see the results on the scale tomorrow morning.

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.

After Josiah came home from the hospital we fed him with the bottle – from May thru to early December all of his feeds were oral – In November we were even starting to feed him some solid foods, however it all came to an abrupt end towards the end of November. His spitting up was getting progressively worse and he would only take the bottle while asleep. By early December even taking the bottle asleep was a significant task. Which is when we were told to get an NG tube – henceforward we would feed Josiah exclusively through a tube. There really was no plan of action as to how we would feed Josiah other than the tube – months/years of therapy. The next stage in the process was to get a G-tube – straight into the stomach. It surprises me that they even bother with the NG route – because every baby I have known to have had an NG tube eventually has a G-Tube.

Ben Zimmerman, who heads up the clinic here in Los Altos hates tubes – G or NG and one of his passions is to get kids eating normally and orally even going as far to imply that the NG/G tube business is a money making business that the medical industry does not want to give up and therefore the almighty dollar takes precedent over the good of the child. Looking at the invoices for the little pieces of rubber tubing – which came to over $70 a piece and seeing Ben’s approach to feeding I tend to agree. Why would our medical insurance cover a G-Tube surgery which would cost the same as a treatment at a feeding clinic and yet not cover the treatment at the feeing clinic? So much of our medical system is governed by profit and not by the best care for the patient.

Shari was told today that if someone has an NG tube for a prolonged period of time it can take up to 6 months for the eating process not to be painful. Josiah only had the tube for 3 months so hopefully this will not be the case with him – so how did he do today? He took in around 3000g of food or 1300 calories – which is a good intake. Ben’s behavioral approach seems to be working.

This approach to me is so compelling – yet so totally foreign to the main philosophical thrust of much childhood care in the US – which is based upon what the child wants – we should surely base our approaches to childcare upon what is best for long term growth and development of the child and not what the child wants… this seems to be a much more biblically sound.

Tomorrow is the Weekend and we will have to look after Josiah’s feeding for the whole weekend – we are praying that we will not have to use the tube.

I’m sitting at the third feed of the day at the feeding clinic. Each morning Ben weighs Josiah – unfortunately this morning (the first morning when we have not done 3 night feeds) Josiah had lost 6oz from the day before. Which wasn’t great, however I think that was as a result of night feeding which is usually not a possibility for most people. Ben has now changed his strategy a little with Josiah and tomorrow we start at 6am and will continue at 11am 4pm and 8pm.

It seems quite a journey that we are on. He is already a lot more receptive to taking water from a cup when we try to feed him. Once the calorie intake is increased and the defenses are broken down somewhat Ben will train us to feed Josiah in a similar way – he said that Josiah will probably play some of the same tricks – then we will go to different locations and feed Josiah in all locations so that he will eat in all places… we have quite a way to go. Although looking a Josiah now he is a lot calmer now than he was on the first day.We will see what tomorrow brings.

We feel today was a significant day – why? Because Josiah went to sleep this evening without a tube protruding from his nose which goes down to his tummy. Furthermore, Daddy and Mummy do not have to get up in the middle of the night to feed the little one.

On Monday, Josiah took about 1000g of food, yesterday that rose to 1400g and today that rose again to about 1900g – which is about 900calories – not as much as Ben would have liked – given that in the last feed of the day Josiah spit up 1.5 oz right at the end – but he is significantly fed and hydrated so we do not have to get him up in the middle of the night – hallelujah!

Josiah is still crying, spitting up and refusing to swallow – but each day the refusal is reducing itself

Ben’s behavioural approach seems reminds me of several things – firstly advise that Susannah Wesley gave to her son John when she said “Whatever pains it cost, conquer their stubbornness, break the will if you would not damn the child” While at the same time a dog whisperer has a show on TV and his key premise with regard to dogs is “show them who is the leader of the pack”

Anyway – we fall into bed tonight tired – but not having to set the alarm for 1am and 4am Praise God.

We’ve now finished the second day at the clinic. Last night I asked Ben how long Josiah would take on initial assessment. His reply was 2-3 weeks, which is great news.

Throughout the night last night we fed Josiah to keep his calorie intake up – however meant that today we were pretty exhausted when we went in for the 8 o’clock feed.

In these early stages Ben is breaking down all of Josiah’s bad feeding habits – throwing up after a bite, screaming, falling asleep while feeding, refusal to swallow, shaking his head side to side violently to prevent the spoon from entering his mouth. Each feed is progressively getting better – although the feed tonight was something of a marathon taking over an hour. Today his calorie intake by mouth was up and we trust that will continue over the next days.

One of the up sides of the feeding clinic’s location is that between feeds we drove down to the shoreline and showed Josiah the ocean for the first time – it was quite a blustery day to say the least. We will see what tomorrow brings.

By 8.30am this morning we were sitting in the office of Ben Zimmerman who heads up the feeding clinic at Los Altos. This first day is an evaluation day so after a conversation about the problems we were facing Ben did the first feed of the day. He is a behavioural psychologist with remarkable success in this field.

He feels very confident that we can get Josiah eating anything – so much of Josiah’s reactions – the gagging and spitting up is learnt behaviour.

So today the first feeds Shari and I sat in an adjoining room while Ben fed Josiah a high calorie mix. It was quite an ordeal for the little one – something we were prepared for – but nothing that we haven’t seen a hundred times at home.

Fortunately Josiah took most of the first feed – unfortunately within an hour most of it was on the sidewalk in Mountain View. The second feed of the day was going much better until the second to last bite when everything inside came out…. the gory details 🙂

We have one more feed left today and will be returning to the clinic sometime soon – there is a journey to go on this but we are confident that Josiah will get there

Watch this space for progress – again thank you for all your love and prayers

We were so very grateful for the amazing journey yesterday – I don’t think it could have been any better