Can he survive on love and yoghurt?

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   Hi ladies,

So sorry it's taken so long to do an update. We've been on a 6 week roller coaster and I was waiting for things to settle before I posted. But, silly me, I should know that there's no such thing as smooth sailing. So, while we're in a good phase, I thought I would write.

Jackson's stay in hospital was very productive. The first week we were there he had a lot of tests, some old ones repeated, some new ones and some ones we expected to be negative, but they did anyway. He pretty much came back a picture of health! On the 5th day they wanted to do a stool test for malabsorption. The doctor came to me at the end of the day to apologise because the silly nurses had sent it off to be tested for rotavirus by mistake. So, we had to give another one. The following evening (after we'd been discharged to Ronald McDonald House for the weekend) Jackson began vomiting violently in his sleep. All night. So, we were back to hospital the following morning, and not long later that accidental stool test actually came back positive for the rotavirus. Completely not we needed!

The following 8 days was utter hell. Jackson vomited and poo'd liquid countless times a day. We soaked towels, filled laundry trolleys, changed sheets all day every day. He was utterly miserable, and just lay in his cot not wanting to be touched or disturbed. He couldn't hold down anything, even pedialyte or water, but was desperately thirsty, so I had to allow him to drink and then wait for it to pour out again. It was heartbreaking. The oncall doctors would visit without reading his notes with NG tubes to insert in him and I had to fight to keep them out. I was scared to leave the room in case I came back and he had a tube!! Finally they agreed to an IV line instead and the tube threat waned. He entered hospital at 8.2kg and, after being fully hydrated once he was better, hit the scales at 7.7kg.

After the Rotavirus finished, Jackson developed serum sickness - a whole body, itchy rash - a reaction to the penicillan he had been taking for the cough he'd had for four months. We have a family history of penicillan allergy, so guess he's got it too! Poor boy was miserable all over again!

Once he was better, he drank like he had never drank in his whole life. We had one day where he hit 1000mls, the one and only time he's done that ever. Most days he was hitting 900mls, and this was concentrated at 20%. After a few days of just drinking, we started working with the therapy team. They consisted of a child psychologist (NZ's leading expert in psychological feeding issues), an occupational therapist and a play therapist. Through different approaches, we finally got Jackson accepting some yoghurt off a spoon. First it was 5g, then 20g and a week later he was finishing a 125g pottle of yoghurt. But here's the funny thing, he would only eat the yoghurt if we put a crunchy cornflake on top of each bite! Discovered by accident, but made a massive difference to how much he would eat. The cornflake, and the fact that whenever he drinks a bottle he has to rub a sock all over his face, prompted the team to carry out a whole heap of sensory evaluations.

The end result was that they believe that Jackson aspirates some of his milk, but not badly and it should get better as he takes more solids (if that ever happens!). He also scored at the extreme end of the sensory evaluations. It means Jackson needs sensory feedback in many situations, particularly eating. Which is why he needs the crunch in his yoghurt and the sock on his face (as bottle drinking doesn't give much stimulation on his own). The flip side is that too much stimulation is likely to freak him out, so we have to find the delicate balance. Kids get better at handling things as time goes on, so we're hoping it's an upward curve for Jackson.

We've got lots of strategies to try to get him eating more than just yoghurt. It's quite daunting and involved though. The good thing is that the team think we've done really well to keep Jackson happy in his highchair and not freaked out by food. He's still very interested, but shows visible worry whenever presented with anything new.

Since returning from hospital (a month long stay!) Jackson had a terrible week. The old aversions returned with avengeance, he rejected his yoghurt, cried in the high chair, flipped out if we tried to give him a bottle. I was beside myself thinking we'd gone straight back to where we came from. It was a very dark few days. But then Jackson developed spots on his hands, feet and tongue and the doctor diagnosed Hand, Foot and Mouth. No wonder he didn't want to eat!! I really have to learn to chill and go with the flow and trust that the boy knows what he's doing.

Since he got better again, we've settled into a not bad eating routine. He's drinking about 600ml per day, still a bit of an effort to get him taking it, but nothing like before. He eats a pottle of high calorie yoghurt at Day Care in the morning, drinks some milk, plays messily with lunch and snacks and often has a little more normal yoghurt for afternoon tea. At dinner time we work on something new every night and then, when he starts crying and reaching out for the fridge, we know it's time to finish up with more yoghurt. So, he's eating about 250g of yoghurt on top of the milk. So far, we have had very little success with anything aside from yoghurt! But, on the positive side, it seems he's getting better at allowing me to put little bits of food in his mouth, sometimes he allows me to touch his teeth and tongue and he is giving kisses again. This is big progress for this little boy who's mouth was so firmly clamped shut for a long time, and who freaked out if we touched it.

I try to be patient with the new foods, but I am worried that he will only ever eat yoghurt!! He seems to know that he can hold out for it and he'll get it in the end. At the moment I am more concerned with getting some more weight on him, but I know eventually we'll have to start cutting back the yoghurt and milk in place of real food so he can learn. He's still got big problems with lumps and swallowing finger food. Having said that, I gave him some rather large chunks of chocolate covered marshmallow the other day and he accepted and chewed them up with a big smile on his face, so I am sure he's quite capable if he wants to be.

When I look back and see how far we've come in 6 weeks, I am really pleased. But still a little scared because the road is long and I can't really see where it will end. But we're both getting better with coping. And, I can say this with relative certainty, Jackson is not ever going to have a tube again. Even if he does have to survive on love and yoghurt..... ;-)