Tuesday, January 17, 2012

A new leaf

After much stress over the last few days I have decided to turn over a new leaf and just focus on the positives. After all there are many positive changes that have happened since we arrived here in Graz. This new attitude came after chatting with some of the med team here, they are a wonderful support when you talk to them. They are experts in this field and have been dealing with tube fed kids as well as other eating disorders, for well over 20 years.

Monday 16th Jan: Day 15 of wean

We had a late start at hospital, which was great as Max slept in. We met with Prof MDS first up and she asked how the weekend was for us. I replied, not too good, he's not eating enough and he's not wanting to eat for himself, only for a reward. She asked us if we had some food on us and we did so she put in on the table. Max went over to it and took a tub of yogurt to her and asked her to open it. She did, then he let her feed him, there was no reward he just did it! We said he doesn't do that for us. She then put a bread roll on the table and he took it and went off eating it. He was running around happy. We realized he is eating if he want/needs to. We need to relax a bit and take the pressure off. We need to just have food around all the time and not much else he can do or play with. He will not let himself starve. He is on his way and each day eats a little more. This is what we need to focus on. We went to the play picnic with a new attitude. We just chatted amongst ourselves. Usually we often comment "Max look here's some chocolate" or "oh yum look here's some yogurt." We told ourselves he knows its there, he knows what to do with it so let go a little. Max is a very independent boy, he likes to make his own decisions and doesn't like being told what to do. We have found this is what he's like with everything. Every therapist in every session has commented on this trait of his. Its the same with food, the more we push the more he'll refuse, the more we ignore the more he'll want. Its the same with his behaviour, which we have also been getting help with. Prof MDS also told us its OK to continue with the reward system but only when he gives us a cue and to stop when he wants to. Although when he takes and eats food himself we just ignore, the food is the prize.

He was really great in the play picnic, he walked around and tried a variety of foods, tasting different things and even took a little dumpling to munch on as we left. We were amazed and thrilled.

We stopped at the supermarket on the way home and bought anything and everything that we thought would be easy to eat for him and when we got home we just put it around everywhere and put away most toys or distractions. He went to a few things then asked for TV so we said OK and got out his custard. He just opened his mouth and was happy for us to feed him through the duration of his show. We decided to put him to bed with out the tube feed, for the first time. Instead we just ran the sugar water through it, rather than giving it to him throughout the day. He slept all night and woke up happy!

Tuesday 17th: Day 16 of wean.

We had a full day today starting with seeing the psychologist at 9am. We learnt so much, she observed him playing and played with him, again noticing the way he gives up or gets angry if things don't go his way. She taught and showed us some great strategies to ease him into things to avoid the tantrums. As the session finished Max asked for an apple! I gave him a piece of cut up apple and he sucked and gnawed on it for a while.

Next we saw the dietitian that went through what types of foods Max will/wont be able to eat because of his rare lymphatic condition. Max is unable to have fats in his diet as his lymphatic system has trouble absorbing/digesting fats. If Max were to have too many fats his lymph system would become very sluggish and cause his lymphatic system to leak fluid into his skin tissue and lungs. This would make him very swollen with excess fluid. We found this out when he was born and his condition became worse as he was being fed my expressed breast milk. He was put on a special formula that had the fats already broken down so that the fats absorb directly into his blood system rather than having to by pass the lymphatic system. He has been on this formula ever since, hence our need to be educated by the dietitian on what foods are OK or not OK for him. For now we don't need to worry too much as he's not eating enough yet to affect him. For now we just let him have anything he wants to get the calories into him and to let him enjoy it. She also told us of ways we can add calories to his meals and drinks that is safe for him.

At the play picnic Steve went in with Max today and I sat in a viewing room and just watched. Again Max walked around and sampled a few different things and wanted Steve to feed him some yogurt. I watched in amazement. It was fascinating to see him interacting as he was, and instead of worrying or counting how many spoons he had, I just thought back to day 1 where he just clung onto us crying, he was like a different boy.

John, Gregor and Max all diving into a box of chocolates the other day at play picnic...
Who'd have ever thought!!!

We got home and as soon as we walked in the door he asked for num num (yum yum)/ food! Amazing!!! He looked up and said "Num num mummy?" I got out a custard and he went to sit near the TV, its as if now TV and food go hand in hand, which is great as he LOOOOVES TV. He ate almost an entire tub, drank a good amount of water and happily went to bed for a sleep. We feel such relief. Is it the fact that we backed off a little and changed our attitude or is he just ready now? Who cares what it is, we've had a good day! I feel like we have now turned a corner and will not look back. After going through all the worry and the process we needed to get him here, its all worth it. I realise it will be a long process to get him to the 'typical' meal/eating routine and to increase the volume, but we can only go up from here!

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