Thursday, January 19, 2012

Mission Accomplished!

Wednesday 18th Jan: Day 17 of wean

We said good bye to our friends from Germany, as Gregor is eating so well they could go home early. Gregor surpassed his parents expectations in week one and is eating like a champ! We are so happy for them. So now only us and little John's family are here. Max usually goes swimming with Steve Wednesday mornings but we rushed out of the house and forgot to pack Steve's bathers. Instead we had a coffee in the waiting area and Max asked for some num num, how wonderful to hear him asking for food. We sat and fed Max a little, had our coffee and went to OT.

OT is so great here. We have learnt so so much about the senses and all it has to do with eating. I never really knew what OT was before so had never thought about taking Max to see anyone. Ingrid is amazing, the knowledge she has and how she knew all of Max's cues. The way she interacts with Max, he just thinks they are playing, although the whole time she is working on things like balance, posture and to stimulate his sense's. All things we can continue to do with him at home.

At the play picnic i again stayed in the viewing room and just Steve went in with Max, I have a little bit of a cold so thought best to keep clear from the kids. Max was amazing! the best Id seen him in at the play picnic yet.  Eva sat down near Max and was casually mixing a bowl of mash potato, knowing Max was watching, then Max went over and wanted to join her and also do some mixing, she gave him a spoon and started mixing with her then he just started eating it. I was behind the window watching with some of the med team and we all looked at each other and said "yey!" He ate a fair bit, kept going back for more. He was happy and really having fun, exploring and tasting a few different foods, feeding Steve and himself.

At home the progress continued. We had our own 'picnic' and Max ate baby puree, prawn cracker, rice and even ham that we broke into tiny pieces for him. At one stage he was sitting there spooning puree into his mouth, one after the other. Steve and I were wrapped! This went on for a few hours and then Max started pointing to him tummy saying "ouch", we think he finally felt the feeling of being full from food. A tummy ache from eating so much! How wonderful is that!!!

Thursday 19th Jan: Day 18 of wean

We decided today, with full support of the medical team here at Graz, that Max has officially passed "Eating School'! Tomorrow will be our last day at the hospital. A few days ago we thought we would need to stay at least another week, but Max has come so far in the last few days that we all agree he is ready and will continue to progress. We are absolutely astonished at what has taken place over the past 3 weeks! Max is also currently off all his medications and has been since day 3 here at Graz. Max was on daily reflux medication and daily diuretics. We, as well as our Dr's at RCH, thought Max may take a long time to wean because of his diuretics, but he is coping well. In fact since not being tube fed so much fluid, his oedema (fluid/swelling) in his body has come right down! He still does have some swelling but it is much less than it has been.

Now we will start to organise going from Graz to Amsterdam to see a world leading specialist in Max's lymphatic condition. We're not sure yet what will happen there or how long we will be there, it could be anything from a day to week, I guess it depends on if they want to carry out any tests etc. Next we will go to London to see another specialist that studies rare genetic lymphatic disorders in children. As we still don't know what causes Max's lymphatic problems, hopefully we will get closer to some answers or a diagnosis so we can help treat or manage it.

Much of our success here has been due to Eva, Max's physiotherapist here. She is the physiotherapist for the eating program for tube fed kids as well as all different eating disorders and has been for over 25years. She has helped us in so many ways from getting Max to start eating to teaching us strategies in managing his behaviour. Max is like a different boy! Also Andrea the Speech therapist has taught us so much that helped us to get Max comfortable with food. Max now smells EVERYTHING since our session of smelling different scents to stimulate the hunger part of the brain. Its actually quite funny, Max smells his drink before he will drink it, to make sure its just plain water and that I haven't tried to sneak some juice or milk in his bottle.

So tomorrow will be our last day with just a 'play picnic' scheduled at 12pm. I will post another blog after our last day, but for now I have to go and get some food ready for my little star's dinner!

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