Sunday, January 15, 2012

Up and down the more ways than one.

Saturday 14th January; Day 13 of wean

As its the weekend we don't have any sessions at the hospital but Prof Shere came in for us to have our play picnic at 11am. We fed Max some of his custard but he isn't taking it himself, as in he doesn't want it, hes only having it for a reward of a sticker or at home (hotel) he'll let us feed him tiny spoonfuls for some TV time. Every tiny spoonful is an effort to get in and so time consuming. I realised this is going to be a long ongoing process, getting him to be OK with eating. We assumed we would come here and go home with a child that eats like other 2yr old kids. Now we're worried this may well not be the case. We have definitely made progress, just to get him to accept and swallow any food in his mouth at all, this may never have happened with out all we have learnt here at Graz so far, but its an ongoing battle and a fear he has not completely overcome. We want him to want food. We still don't think he has made the connection between hunger and food. Drinking water yes, he knows it makes him feel better and has no fear to drink it, if its in a cup. He's taking occasional drinks from a bottle if there's no alternative, but still wont drink anything but water.

After the play picnic we all (the 3 families) went out for lunch. We fed Max a couple of spoonfuls and he also actually fed himself 2-3 spoons while watching The Wiggles on the iPhone (a new reward) we were really excited he did this, he must have been hungry or maybe it was the social setting/atmosphere of no pressure. I wish I knew! It hasn't happened again. It is really good to get out of the hospital and do 'normal' things like going out to lunch, we feel really lucky to be doing this with the group we have. Although we are all from different ends of the earth we are all so similar and all had such similar experiences with our boys and all have the same hopes. Little John is drinking heaps of a variety of juices and now starting to accept a little food and Gregor, well he's eating and drinking better than his parents ever expected, they have been told they can go home early.

All up Max would have only eaten about 10 small teaspoons of custard all day and nibbled on a prawn cracker. We are still giving him 200ml of formula overnight and the water/sugar flushes, just to sustain him.

Sunday 15th: Day 14 of wean

Today our new friends form Germany, Andy, Jill and Gregor took us for a beautiful drive up the mountains to see the Austrian Alps. We took all our feeding supplies for the boys and got away from it all for the day. We've been told to involve the kids in all sorts of ways we eats food. We hoped he's eat or want to feed himself in a relaxed social atmosphere like he did the day before.

Steve and I were overwhelmed by the views and beauty of the snowy mountains. The pine trees and gorgeous traditional houses. At the tops of the mountains we got out to feel the snow beneath us and take in the extraordinary views. It was just amazing, breathtaking. Oh yeah.and incredibly cold! The cold wind was like a sharp slap to the face after being all warm and cosy in the car. Never have I felt such a cold sting. Max got out, in his little snow suit and boots and had a little play in the snow, but the air was just too cold that we quickly piled back in the car and decided to continue to appreciate the views from the car window! We drove on and found a cosy little guest house amongst the mountains and enjoyed a traditional Austrian hot lunch. We fed our boys, well Gregor ate but Max took nothing, just water. He's been grumpy, tired and miserable all day. Its the worst we've seen him and are really worried, so we ended our day trip there and drove back into Graz. We had such a lovely day out but all the time in the back of my mind I was worried.

Max in the Alps

Beautiful but freezing

Austrian Alps

Village in the Alps

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