Saturday, February 4, 2012

Good bye Graz, Hello London…

Our last day of hospital at Graz felt different to all the other days, like when it’s your last day at school before the holidays. A very relaxed, happy feel about it. It was just us and John’s family at the play picnic. John was also having his last day and was ready and packed to leave for home in Ireland. We all just sat around and watched the boys eat and play together. We were all a bit nervous about leaving yet at the same time excited about how different our lives would now be. We will miss Gillian and Patrick, John’s parents; it was so nice to make friends with people that we could really relate too. We said our good byes and finalised everything at the hospital and set off to our hotel.

Max still has his tummy tube and will for the next 3 months, on advice from the hospital. As much as I hate Max having the tube/PEG, it’s a comfort for us to leave it in for now. If Max continues to eat and drink as he has been over the next few months, (which he will J) we then take it out and let the hole close over and be gone forever! He will also have to be increasing his intake. Max left Graz eating puree and drinking water. Today it’s been almost 2 weeks since we left Graz and he is now eating almost anything! Last night he ate steamed broccoli, roast chicken and has started drinking milk!  I’m so looking forward to getting him home and having my kitchen to make him all sorts of different yummy foods.  It’s quite limiting being away from home as to what we can offer him. It also takes a long time for Max to eat and drink at the moment, which again will be easier when we’re home. He eats small amounts but often. Almost like all day grazing. When we’re at the hotel we always have a variety of foods around for him to help himself to and every 2 hours he’ll let us feed him while he watches some TV. When we’re out and about we give him different things to hold and nibble on in the pram. I find myself always thinking of new things that he can hold himself and that are easy to eat. Prawn crackers are great as they dissolve in the mouth. I’ve mentioned before about how for now we just let him have any type of food he’ll eat. It’s all about creating pleasant oral experiences and learning how to bit, chew and swallow. Nutrition comes later. Chocolate is another good one, as it something he can hold in the pram, melts in the mouth and is high in calories.

One thing that is challenging with Max though is that he’s not supposed to eat any food high in fat due to his lymphatic disorder. So at the moment, as he doesn’t eat a lot yet, we are letting him eat anything but encouraging low fat foods the most. I’ve replaced the custard he was eating with a low fat soya bean custard, which tastes great! It just makes it hard to get the required calories in to him. So if anyone has any ideas of low fat, high calorie, easy to eat food I’m all ears!
We are absolutely ecstatic about what Max has achieved at Graz in such a short time! Every time I watch him eat I’m smiling. Seeing him eat happily, hearing him actually ask for food, packing him little snacks when we go out…It feels so weird, good weird! So with Max now eating and drinking we started thinking about what we had to do next.

As soon as we got back to the hotel after our final day at Graz hospital, I contacted Prf H, whom we had previously organised to meet up with in Amsterdam.
As we were unsure how long Max would take to wean at Graz we did not have a concrete date or appointment with Prof H, we were just instructed to contact him once Max was finished with the wean. Prof H is the founder of what is thought to be Max’s condition. This condition has been named after this Professor and has only 30 known cases worldwide, none in Australia. There is no defining test for the disorder, just that one of the main symptoms involves a faulty lymphatic system, which Max has. We know this as when Max was 8 months old he had a test done where they injected dye between his toes into his lymphatic channels, to watch how it travelled through his body. For you or me it takes about an hour for our lymphatic fluid to travel through our lymphatic system. For Max, after 8 hours the dye showed that the fluid had only travelled half way through his body. His channels are extremely narrow and congested and the fluid seeped out into his skin tissue. This is why Max was so sick when he was born. His face was like a balloon, his chest cavity was so full of fluid that for months he required permanent chest drains to drain the excess fluid so his lungs could expand and grow. Now his legs are affected and his face fluctuates, some days it’s swollen and others he’s ok. This is why he requires a low fat diet as the fats congest the channels further.  So we were very keen to meet Prof H to see if he thinks Max has the condition he founded and if so learn more about it.

Prof H’s PA called me back to say she will set up an appointment within the next few days. As soon as I got off the phone we started getting ready to head out the door and book our flight to Amsterdam.  Just before we left the phone rang, “hello Mrs Reynolds, I’m so sorry to tell you this but Prof H has changed his mind and decided he will not have time to see you after all. He also feels there is nothing more he can tell you than you already know about Max. He does not have any answers for you and even if he could see you, you and your family would need to spend 2 weeks in quarantine before entering his clinic as you have come from abroad. He cannot tell you what Max’s condition is or why he has it, as any testing he would recommend have already been done. Again I’m very sorry.” My heart sank. I had held so much hope in seeing him. Why I was only told this now!  I pleaded with her for a while, saying I don’t expect all the answers, but if anyone knows anything at all I thought it would him! I said we were willing to do whatever it takes. It was still a firm no.
I just sat for a while… thinking, angry, confused, let down, upset and helpless. Then I picked myself up and thought, ok it’s not meant to be. So I got on to calling the specialists in London.

Wow what a difference. They had been waiting for my call and said how eager they were to meet Max and do what they can. They had a team prepared and all had read up on Max’s history. So off we went and booked our flight to London for the next day.
We had a bit of time in London before our appointments at St Georges Hospital, which was great as Steve and I were exhausted. The first few days we just rested and concentrated on feeding Max and getting him settled in another new place, then we took a bit of time out to explore beautiful London. I personally think the whole last year had just caught up with me. The fundraiser and anticipation of getting to Graz, then going through the actual treatment with Max, such a roller coaster of emotions. I felt like I could finally breathe again. Max is eating and I know he’s just going to continue to thrive.
Micky Mouse on southbank London
Feb 1st we went to the hospital and met the team. They are just wonderful. They said they have seen four other cases like Max where the child was born with lymphatic hydrops! They said two of the children died as babies and the other two improved and got better and better as they got older. They were all born with an underdeveloped lymphatic system but the 2 that got better, their lymph system continued to develop with age. This is what they feel is happening with Max, that he will improve as he gets older. This news was a huge comfort and offered new hope. Never have we heard anyone say they have seen other cases like Max. They said they don’t have a name for the condition as it relatively new and incredibly rare, but with our permission would like to continue to study Max’s case along with the other families. They also ordered many new tests that Max has never had done. They gave us management advice and explained everything about the lymphatic system and how it works. They also said they have been in contact with Prf H in Amsterdam and they DO NOT believe he has the condition that Prf H decribes! I am so glad we came here to London and have this team on board. They are so interested in Max’s case and really keen to find out as much as they can about how and why this has happened, what they can learn about it and how they can help us help Max. They are preparing a research investigation on Max and the other children like him and will be in contact, and work with and advice, our doctors back in Australia.
We spent a few days at the hospital and they ran a few of the new tests, but most of the testing can be done and followed up back home under their instruction. I know we don’t have an absolute answer, but to know we have these experts doing everything they can, to hear they have seen other cases and the children get better is more than we expected! I just feel things are finally looking up and Max (and us) may really start to be able to lead a wonderfully, ordinary, normal life.

We are heading home this week after completing our very successful ‘Mission for Max’. Not a day goes by that I don’t think of all the wonderful people that supported our mission and helped us achieve so much. Hundreds of people helped us do this, friends, family, business and complete strangers.  We could not have done this on our own. What’s that saying about it takes a community to raise a child?  For our community and support network this really is an understatement.  All the love and messages of support from home have also meant so much to us and really helped get us through the tough days. I feel that saying thank you is not enough. So I hope that all of those that have helped in some way or another have read these blogs and felt a sense of pride in what they have helped achieve. I can’t wait to get home and starting a new life!
Mmm num num chips
happy little vegemites

Hats off to you all that helped me!

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!

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!

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

Friday, January 13, 2012

Week 2 is coming to an end...

I haven't been able to blog for a few days so need to catch up. Max has been giving us and his teddy us lots of drinks of water, as we do this in his speech sessions, so he decided to gave my laptop a drink of water! So my laptop has been playing up since.

Thursday 12th Jan day 11 of wean.

Max slept well all night, I was expecting him to wake a lot due to hunger but he must have been so tired he actually slept til 9am. We had a music therapy session scheduled at 9am at the hospital but we decided to let him sleep, he needed it. We got to the hospital at 10am, in time for OT with Ingrid.

Ingrid noticed Max was down and lacked energy. We told her the wean was really starting to affect him and hoped he'd eat more soon, enough to at least sustain him. He was busy playing, but you cold see everything was an extra effort for him. Ingrid gave him games and activities to play were he needed to kneel or bare his weight with his arms. As Max has had a PEG in his tummy since 6 months of age he has avoided any tummy time and relies on his leg strength too much. This had made his arms and tummy muscles weak, so we need to encourage a lot of floor play, crawling and kneeling.

Play picnic time and Max ate some custard with me spooning it in his mouth. He wasn't too keen so we used our new reward system of a sticker for each spoon. The medical staff were all impressed and Professor Dunitz said for us to stop the tube fees all together! He was only on 200ml over night, so not even a cup. She asked if we were OK with that and we said yes. I was really feeling a bit worried as he's only really taking a few teaspoons and drinking his calorie powdered water, but I thought we need to continue to trust in them and do as they say.

So last night, Thursday night Max took another few spoons of the custard and plenty of water and i put him to bed. He is so used to me hooking him up to his feeding machine at this time, but I didn't. After Steve read him a story we just walked out. After a few minutes he was calling out to us "Mummy Dadda!" We went in and he became very upset. He started to cry and wanted more water, so he had some and we walked out again. Soon he became absolutely hysterical! We both went in his room and asked him what was wrong but he just cried and cried and started throwing himself around the cot. We hadn't seen him like this before, we weren't sure if it was because the machine wasn't on or if he was just so hungry and feeling awful, or a combination of both. We offered him more custard and water but he screamed no threw the water bottle at us. I picked him up to cuddle him but he was absolutely inconsolable. I said to Steve 'maybe we should hook him up to his machine and just slowly feed him just 50ml, over an hour. His tube feeds have been dropped faster than the other boys considering he started on twice as much'. Steve said it was up to me. Not the answer I was looking for... I decided to do it just to see if it settled him a bit. I was thinking Id rather see him eating and drinking more before we stop the tube feed completely. I ended up giving him 100ml, justifying it to myself that its still less than the night before. As soon as the feed started he settled down and went to sleep. Was it just the fact that he knew the machine was on or did he feel the milk going into his tummy and it stopped the hunger pains? He slept well through the night.

Me feeding Max at the play picnic

John and Max playing with food at the play picnic

Its Friday the 13th Day 12 of wean. We started the day with Speech Therapy with Andrea. She is amazing, we had a great session today. She had a hand puppet dragon and was making it ask Max to feed it some crunchy teddy bear chips. Max happily put some chips in the dragons mouth and Andrea was getting the dragon to show Max how to bite and chew and swallow them. Max loved it and was fascinated watching the dragon crunch the chips in its mouth into lots of tiny pieces, swallow them then open his mouth again and the chips were gone. Andrea had cut a whole at the back of the puppets mouth and after crunching up the chips she's maneuver them to fall down the whole then down her sleeve, so they appeared to be swallowed and gone. Whilst Max was feeding the puppet he decided to put a chip in his own mouth! We were all a bit surprised, as he'd had no prompting and putting a chip in his mouth is a bit different to custard. He was biting and chewing on it and showing the dragon how he can bite too! I was holding my breath quietly waiting for him to start gagging and choking, but he didn't! He only took tiny bits and was very careful, but best of all he seemed to be enjoying it. Steve and I were giving each other a secret look of surprise, happy surprise! We remembered to not make a big deal of this in front of him. When he initiates eating and feeding himself we haven't learnt to act casual and make no fuss. We only give him comfort, reward and praise when he is eating because we want him to, not when he wants to. When he wants to eat,the food is the prize/reward.

Max trying a chip with the dinosaur in speech. OMG!

Next was a parent meeting. Only one parent attends and the other takes the child out for a walk or play. Steve attended last week so this week was my turn. We discussed our thoughts of the program and goals for next week. I confessed to tube feeding Max the night before, after they'd said to stop all Max's tube feeding. They said it was fine and the right thing to do if its how i felt. Phew! We agreed to keep Max on a small amount of tube feeds for now until he eats more in volume. I said I was worried about Max being so pale and he has red rims under his eyes. They ordered a blood test to be done straight away. We got the results within an hour. They said his blood sugar level was a bit too low so we need to give him 3x 100ml water with sugar flush through his PEG tube. The nurse gave me a syringe full of glucose water and I gave it to him straight away, it seemed to make him feel a bit better.

Play picnic time and all 3 boys ate something together at the picnic for the first time. One of the boys, Gregor has been eating since last week, he is eating up to 9 tubs of yoghurt a day! He's an absolute star! The other little boy John is drinking great volumes of juice but not really eating too much yet. The drinking is great though and as it is juice, not just water like Max, it is giving him the sugars he needs. Max ate a little more custard and drank his water and sucked on some chocolate. At home he tried chips again (I raced down to the shops to get some of the chips he'd tried in speech) and ate some more custard!

The 2 other families we are with are great. We are all going out to lunch again tomorrow after hospital. Then Sunday, our day off hospital, we are all going to take a trip to the Austrian Alps with the kids, and take a picnic.... of course!

Max drinking from a bottle, this is huge as he's only ever before taken a sip from a cup.

Feeding Max at the play picnic

Max choosing a sticker for each spoonful he takes
So all in all we have made great progress in week two! Its amazing seeing Max taking food from a spoon, something I sometimes thought Id never see! Now we just have to work on the volume we can get in him, or at least to get him drinking something more substantial than water. Then down the track we worry about nutrition, but for now its all just about getting calories in orally, and that he enjoys it.


Wednesday, January 11, 2012

Im so excited...and I just cant hide it!

Jan 11, Day 10 of wean. Today I was having a bad day, well Max was, so I was. After hospital today we came home so disheartened as Max had again eaten nothing and its really affecting him. He's really grumpy and easily upset, crying at anything.

He woke early, hungry and thirsty but only took water. We started the day with swimming at the hospital at 8:30am. Max loves swimming and Steve goes in with him as do the other 2 boys and their dads. Then 10am Physio with Eva. Eva told us to persist with the force finger feeding him. I hate it. it feels so mean and Max hates it. We literally have to hold his head and force a finger of custard into his mouth. I told her how upsetting I find it but she said we could wait until he's 99 before he takes it himself. We have to teach him and this is how. She again assured us its fine, as once its in he stops crying and swallows it. She explained he will soon realise we are not giving up on this food thing and its something we now just do. She also again told us he will soon click that we're not hurting him, the food doesn't hurt and it actually feels nice, as he's so hungry. She told us to stick to the same flavour of chocolate custard so he gets to know it.

Next we had OT. We had a new lady today, Ingrid. She played with Max and observed him for a while and noticed he is capable of more than he does physically, but he has no confidence. i.e. he wont go down a small slide on his own, even though he can, he asks for help to get up when he can do it himself. He is too careful, whereas other kids his age jump into things with no fear. She said this is common for kids that have been sick, tube fed and had a lot of hospitalisation. Also as Max never crawled (he walked before he crawled) he missed that developmental stage of exploring on the ground, so we need to build his arm strength and confidence.

Next the play picnic...nothing. He spent most of the time trying to get out of the room, crying and asking for his dummy, which we had to take off him on day one. We gave him more custard via the finger and more tears. We were feeling really down at this stage.

Next we met with the professor to discuss Max's progress. She said to leave him on the 200ml at night for now and to continue with the finger feeds every hour! I told her how i dreaded it and she said I'm more upset than Max is. She said if he becomes weak to give him a flush of sugar water (50ml water with 1 teaspoon of sugar through the tube) up to 3 times a day.

Lastly we had speech with Andrea, today we worked on ways to increase the volume of what we can get in his mouth, so to start using a spoon instead of our finger. She said he was ready to take larger portions in the mouth. She also suggested we reward him after each spoonful to let him know we're happy and to relate it to a positive thing, as well as giving him the comfort of a cuddle. We had a few goes of using the spoon whilst in the session, he was so tired and over it all he became hysterical. He cried until he was almost sick, so we stopped and just comforted him. I was finding it so hard to keep myself together and strong in this moment. I could feel every tear and bit of frustration he was feeling.  It had been a full on day and Max was at the point of exhaustion, as are we. Andrea finished the session early due to Max's state and we were ready to head home for the day and get Max to bed when we were called in to see a psychologist. We hadn't seen this lady before and I wasn't sure why we were called in. She observed Max playing for a while and asked us some questions about what sorts of things he likes to play. We told her he likes posting things, putting things together, working out how things work, throwing a ball, cars etc. Max was on the floor with a piece of paper trying to fit it neatly into her bag, he became frustrated that it wouldn't go in and threw it in anger. She commented on his clear frustration of things not going his way and I had to agree this happens a lot. He finally picked it up and got it in and was happy. Then he took it back out and put it back in. She then commented this was not functional play and its not normal for his age. I was/am still, worried by what she means by this. Is she saying there is something very wrong with him? Steve then gave Max his iPhone to play with to keep him busy while we continued to talk with her, and he went straight to pressing the letter keys and saying each letter out loud. She was very surprised at this and I told her he knows almost all the letters, most by name and sound. He has a bit of a fascination with letters. Its not something we've taught him, its just something he's very interested in and takes notice of. Again she said this was odd for his age, made some notes and made a time for next week. I wanted to know what she was writing and thinking, but she said she wanted to see more of him first.
All the way home i was thinking about the big day we'd had, worried. We got Max home to bed and I said to Steve I need to go for a walk. I walked around Graz, thinking to myself ...i think tonight's blog will be titled "disaster day". I then found myself in one of the many beautiful shoe shops and decided I needed some new shoes. Retail therapy I think they call it! There is some great shopping here in Austria, I had just not so far had the time or desire to shop. Well, then I decided I needed some new pants, so buy I did and I started feeling a bit better! On my way back to the hotel I stopped to buy a few little rewards for Max for when he ate, I got him some stickers and thought he could have a sticker each mouthful, he loves stickers.

I got home and Max got up. He asked to watch the smurfs. I told him it was time to feed him so he could watch it on my knee while I gave him some food. He looked at the custard and the spoon and said "yey!" I nearly fell over...maybe he didn't understand me? I put the smurf DVD on and sat him on my knee. I held his head and quickly got in a spoonful and gave him a clap and a cuddle. He didn't cry, he just ate it! I got out the stickers and told him I was so proud of him he could choose a sticker. He chose the biggest one and stuck it on his piece of paper, so happy with himself. He went to get another sticker and I said 'yes you can have another one if you eat another spoonful first'. Now, here's the bit that brought me to tears, happy tears, the bit I'm so excited about....he opened his mouth, took the spoon off me and put it in himself, ate it and said num num num (aka yum)!!! Then he did it again and again and again! He got a sticker each time, a big clap and a happy dancing mummy! Steve and I were both ecstatic. Then Steve said 'do you want some ice cream now?' I murmured "Steve don't push it" BUT Max said 'yey ice cream' went over to Steve, opened his mouth and took it off Steve's spoon! I'm getting all teary again now typing this, we're so proud of our little man. What started out being a crappy day ended up the best day we've had yet!

Go Max!!!! :)

Tuesday, January 10, 2012


Tuesday 10th January 2012, day 9 of wean. Last night after I'd written my last blog, we all had tea on the floor mat, our own 'play picnic'. I'd made spaghetti bol, as Max had shown interest in it before. Max went straight to his plate and dove in! he was playing with the pasta and sucking on the meat. We think he may have actually eaten some too. He seemed to really love the taste and sat and sucked on spoonfuls for over an hour! He was even opening his mouth wanting us to feed him! We were so excited, we felt like it was a big break though! After a while he lost interest so we got out the ice cream and let him spoon some into his own bowl. Again he started spooning it in his mouth and was eating and swallowing it. He was also saying 'mmmm happy happy!' He then went to bed happily and we started his 300ml tube feed. We were so so happy with this. Steve and I chatted for ages about it once he was asleep. Steve suggested he might now really be feeling the hunger and maybe he's worked out eating makes him feel better. I hoped he was right.

Spaghetti with Daddy

Max sucking the pasta

Max woke earlier than usual this morning and I knew it was because he was hungry and thirsty. I got him up and offered him a drink of juice or broth, to both he yelled 'no!' and kept asking for a drink, I knew he wanted water but I stuck to the new rules and didn't give in, as hard as it was. He grizzled all morning still asking for a drink and i kept trying with the juice and broth, still no luck. We got to the hospital and he ran away from us into the waiting room where there is a water cooler, he approached a man and asked him for a drink pointing to the water. The man gave him a cup and Max pressed the water button, filled his cup and sculled it! He then hid behind a chair to finish it off! God we must have looked like awful parents when we went to take it from him, he was clearly desperately thirsty!
We then went to our first session for the day with Eva the physiotherapist. Eva was wrapped when we told her about his eating the night before. She said if he eats something then we can give him some water with some calorie powder in it, that he cant see or really taste. Also for the fact he had not drank anything at all, except his sneak at the water cooler, he needed some fluids.  So we gave him some water with the powder and he drank it happily. Eva then gave Steve some puree and told him to hold Max and spoon some in Max's mouth with his finger again. Again Max put up a fight and protested, but he didn't get up and move away so she said for him to keep going. Steve managed to get about 5 fingerfuls in and Max then seemed to have a bit of an energy surge and was quite happy for about an hour. Eva told us to do this again at home as although he's protesting, he will soon work out that it made him feel better. I find this really hard to watch and to do myself. Max puts up a fight and we have to briefly hold his head still and force it in his mouth while he's crying. As soon as its in we let go and hug him and tell him its OK and he's doing well. He seems happy enough to move it around his mouth and swallow it and he stays on our knee and likes the cuddle. Eva assures us its OK and part of this second stage, if he gets up and walks away or becomes extremely upset, we stop.
Play picnic time and Max ate nothing! He touched a few things and drank more of the calorie powdered water. Eva had even gone and got some spag bol for him after hearing about the night before, but Max wasn't at all interested. Its so frustrating, we had high hopes he'd made a break through. I knew he was hungry as he is all the time moving his mouth as if he's eating and he was really whiny and short tempered all day.
After the play picnic we met with the Professor to discuss his progress and she dropped his tube feeds again! I was a bit concerned and reminded her he had only been dropped to 300ml yesterday and today he is really feeling it. She said to drop him to 200ml and assured me he'd be OK. She said they are really happy with his progress and the faster we drop the feeds the quicker he'll eat. She explained if its dropped at a slow rate the child's stomach quickly shrinks and they become comfortable on a small amount. She told Steve and I she had faith in Max and we needed to too. I do have faith in him and in the program, but its so hard! Max has now lost 1kg in the 10days, they weigh him every day before the picnic. He is also looking pale and is less energetic. I have to keep reminding myself that this will only be a short time in his life and he wont even remember it and its just what has to happen to get him eating.
When we got home to the hotel this afternoon he went straight to the freezer and got out the ice cream and wanted some. This is great that he is asking for food himself! I gave him some in his special bowl and he sat with it, took one teaspoonful, had a suck on it for a while, then lost interest.

Ice cream!

 He went down for a nap as I prepared a feast for our diner picnic. I had more spag bol, mashed potatoes, rissoles in gravy, meat balls in sauce, as well as some ice cream and chocolate. He woke up just in time to be able to smell it all cooking and I told him mummy had made him some spaghetti and some ice cream and he ran out saying 'yey!!' but again nothing, he just wanted some water. He's just gone to bed for the night now and has started his 200ml feed.
This really is an emotional roller coaster for us as parents, so many highs and lows! I guess I thought that once he started to eat he'd continue to eat more each day. Last night he did so well but then today, not so much. Lets hope tomorrow he has a great day!

Monday, January 9, 2012

Slowley but surely

Its Monday evening 9th Jan, Day 8 of Max's wean. We started the day at hospital with Speech Therapy/Logo. The therapists name is Andrea and she is just lovely, I find myself looking forward to her sessions as we learn something so interesting and important each time. You would think 'why does he need speech therapy?' but its not really to do with speech, its more to do with his mouth and senses. Andrea has been focusing on getting Max to smell things. She explained that the sense of smell stimulates a part of the brain that kicks in the instinct to want to eat. Like when when we can smell good food cooking or bread baking it makes us hungry.
Speech session- cutting fruit 

Daddy helping Max cut fruit
Today she had a plate of different fruits; apples, oranges, bananas, kiwi fruit and so on. She asked Max to smell each piece of fruit then us. Then she got Max to cut the fruit up to make a fruit salad for the dolls. She and Steve helped him with the knife (of course) but he was so proud that he was cutting! We could all smell the different flavours of each fruit. She explained it was also a way to introduce flavours as he would be unaware of this from not experiencing food. While he was busy cutting the fruit he was again making noises and moving his mouth as if he was eating...'nom nom nom'. Max fed some fruit to us then the dolls. Andrea explained that she did not expect Max to eat any fruit, but just the activity helps him overcome his fear of it.

Next was the play picnic. Max was happy to see the other kids and be there and was again saying 'nom nom nom' looking at all the food. He took some bread and a small piece of ham and sucked on it a bit. Steve then was told to offer him a cup of juice, Max has never drank or sipped anything but water, we have even tried to just add a few drops of juice to his water cup but he knows and refuses. He took it and sipped it! He didn't go back for any more but its a start. They then told us no more water for Max. He can only now be offered drinks with taste/flavour. They suggested we only put soup broth in his drink bottle or cup. This is worrying us as we are so pleased Max has been drinking water we don't want to now deny him of it. They said we have to push him and if he is thirsty enough he will drink it. We also got told to reduce his tube feed again, now to only 300ml over night! They also told Steve and I to start putting yoghurt in his mouth with our finger. We did this a few times each and Max cried and was saying no and turning his head away, but each time his mouth was slightly open we had to quickly get some in. Once the yoghurt was in Max's mouth he seemed to be OK and even like it! Its just a matter of getting it in. They explained that even though he was saying no and turning his head away we need to persist. They said if he really didn't like it he'd get up and walk away. They suggested we do it again at home.
After hospital finished for the day we went to the supermarket and stocked up on soup stock and yoghurt's and got some ice cream. We set up a 'play picnic' in our apartment and Max ate a little ice cream! Not much, just a teaspoon at the most, but he spooned it in himself! Steve sat him on his knee and again put the yoghurt in his mouth with his finger and again he grizzled but he took it and swallowed.
Max and Daddy having a picnic in our apartment.
Here you can also see the temporary tubing they had to put in Max's tummy a few days ago.
We're really happy with today, but we do need to learn to be patient. Its a waiting game now. Waiting for him to click and make that connection between hunger and food. That its safe to drink other things but water. Waiting for him to be so hungry that he eats an entire meal. Waiting for him to trust food and to trust us. He hasn't drank anything much at all today. Since we were told no more water, hes asking for a drink and we give him broth or juice and he wont take them. He's lost almost 1kg since we arrived which the doctors assure us is fine and expected. They compared it to a how a newborn looses 10% of its birth weight as it learns to feed. So tonight we start only giving him 300ml, so it will be interesting to see how this will affect him tomorrow. At the moment he is still happy, but definitely quieter and less energetic than normal. Poor baby boy, it feels awful seeing him so small and hungry, but its the only way, and we believe he'll get there.

Sunday, January 8, 2012

A better day...

Its Sunday late afternoon, day 7 of Max's wean. Max had his 500mls over night and vomited this morning, I don't know why, so would have lost some of his intake. He woke during the night and asked for a drink and took a small amount of water from a bottle and went back to sleep. We don't go to hospital on Sundays, so we packed Max a picnic and went out for the day with my folks, before they leave tomorrow. It was nice to get away from the hospital for the day. We went to the Clock Tower built in the 15th Century, a must see if you're in Graz! We went to the top of the mountain to the Clock Tower via a glass elevator, which Max loved! The views from the top are breath taking! You can see the entire city of Graz and all the red shingle roof tops. We stopped for a coffee at the beautiful glass cafe on the top of the mountain, surrounded by the stunning views. Max again asked for a drink while we all had our coffees. He then saw a little girl eating chocolate and ran over and took it off her, sucked on it, then threw it away. We thought this was great, but it was a bit hard trying to explain to the poor little girls parents why we weren't telling Max off! We had an array of foods packed and spread out for Max but he didn't take anything, just the water.
We then walked down the mountain and took Max on the fairy tale train ride that went through tunnels at the base of the mountain. We all really enjoyed it... and Max drank more water.
From the bottom of the Clock Tower

The top of the Tower

A drink from Nanna

Beautiful Graz, amazing views

Whoo hoo! Max sucking some meat!!!!
We walked back to our hotel and stopped to get something to eat, Dad and Steve have become a bit obsessed with the hot dogs here and surprise surprise we ended up at the hot dog stand...  Steve says its good role modeling for Max to see Daddy and Pa pigging out like they are! Max was watching us all eat and was moving his mouth making noises as if he was eating too, then he reached for Nana's hamburger! We broke off a bit of the meat and he put it straight to his mouth! Steve also handed him a chip and he tried that too, but dropped it to concentrate on the meat. Dad said 'hey guys look!' and I quickly and quietly said, 'no dad remember we don't say anything!' It was quite funny really, we're all trying to act ultra casual, but were all pretty excited. We kept walking home and Max held and sucked and nibbled on his piece of meat all the way. We're not sure if he actually swallowed any, but its still good.

Saturday, January 7, 2012

More ups and downs...

Its Saturday night now, here in Graz. I haven't posted anything on the blog for a few days as we've had to stay in at the hospital last night. Thursday Max's PEG fell out of his tummy, I had to hold him down and push it back in as soon as possible, as the hole in his tummy can completely close over with in 3 hours. We tried to distract him but this has happened many times in the past so he knew what I had to do and he put up a fight. The more he cries and fights the harder it is for me to push it back in as his tummy muscles clench. I forced it in then cuddled him and tried not to cry myself. We put him to bed and started his night tube feed. He's now down to just 500ml during the night and nothing at all during the day.
Friday morning he woke at 8am and when we got him up there was the PEG, out again and in his bed. It had come out again at some stage during the night. I looked at his tummy and sure enough the hole had closed over! We were in a panic of what to do, as he is still not eating and is currently relying on the small amount he gets overnight to sustain him. We jumped in a taxi and got him to the hospital asap. It was a public holiday here in Graz on Friday, we had no programs scheduled that day except for the play picninc at 12pm, one of the medical team was kind enough to give up her holiday to come in for. We spoke to the doctors in emergency called the professors in charge of the tube wean program and they said they would come in at 12pm to observe Max in the play picnic and make a decision as to whether Max needs go into surgery to have it put back in or to leave it out and he just will have to start eating now! We were very anxious, as although we know we are here for Max to eat, he isn't yet!
During the play picnic Max was better, he drank some water from a cup and bottle and was happy to play with and touch the food, he put a few things to his mouth: a suck of some chocolate and he tasted some spaghetti bol. He didn't actually eat anything really, but it is progress. The professors met with Steve and I afterwards and said they are confident he will eat but he's not ready to be off all tube feeds just yet. They called a surgeon up to look at his tummy. The surgeon said he may be able to break through the first layer of Max's skin to re-insert a small tube. They gave him a local anesthetic, 3 men held him down and the surgeon broke through his skin and has put a temporary, long, thin NGT tube in where his PEG was, so we can still tube feed him at night. The hole was too closed over to get a PEG in. It was awful and heartbreaking to watch. Max was screaming and almost made himself sick crying. I picked him up and just hugged him as soon as it was over, again trying not to cry myself. They then suggested we stay overnight in case it came out again.
Steve and I were both able to stay with him, so he now has a long tube hanging out of his tummy with a plug on the end of it. We have to tuck it into his pants to stop it dragging or catching on anything. This will stay in his tummy until Max is eating and drinking enough to sustain him and is off all tube feeds. God I hope its soon!
We stayed overnight without any problems, Thank God! Max slept well through the night and had his 500ml through the new tube. Steve and I did not sleep so well. We just wish we could explain to him that eating is not scary, its actually great and if he'd just eat we can all go home! So we woke at the hospital this morning and went to the play picnic as normal. My parents also came along to learn and observe how we need to be with Max and food. Mum came into the play picnic room with Max and I and Dad and Steve watched from behind a glass, tinted window. Again Max drank some water, but he wont try anything else to drink. We also played a game with the kids where we actually put a little yoghurt in their mouths whilst engaged in play. This is not something we can do often as the goal is for the kids to take and want the food themselves. Max resisted but didn't cry or run away and he did swallow a bit. A small success.
After the picnic the 3 families went out for lunch to a local Austrian Pub. We ate and chatted and the kids sat in highchairs with bits of food on their trays. Max sucked on a bit of chicken and a chip. We've been taught that involving the kids in meal times, seeing us eat and these food/social type situations is important, but we have to remember to make no big deal or pay any attention to when and if they do try food. It was so hard to not say "Yey well done, eat more!"
We would have just looked like a normal group of friends out enjoying lunch, but all we were all really thinking was, "pls kids eat, eat and swallow and want more... is this ever going to happen?"
Tomorrow is Sunday so we don't go to the hospital at all. We are planning on going with my parents to see the famous clock tower in Graz and taking along a picnic lunch, and practice what we have learnt so far into a real life, fun, social situation. It will also be my parents last day in Graz as they are going on to Rome on Monday.
Max is definitely showing signs of hunger and is a lot quieter and less energetic than usual but he's not unhappy. He is aware that the machine feeds him at night and looks forward to bed time and smiles when he hears the machine beep. I also feel hes aware of whats going on and that we want him to eat. I guess this is why they say the younger they are the better and easier it is to wean a child. It feels like a waiting game to us, we're just waiting for him to make that break through. I just hope its soon, it has to be...

Wednesday, January 4, 2012

1 step forward 2 steps back...

Wednesday 4th Jan: Day 3

Max's tube feeds have been dropped again now to only 700ml and only overnight while he sleeps until 5am. So nothing at all during the day. We started the day at the hospital at 8;30am with swimming. Steve and Max went in the pool with the other dads and kids and I watched with the other mums. The idea of swimming is that for the kids to be emerged in liquid and enjoy it will help them get over their fear of drinking it. All 3 boys here are the same in that they don't like water on their faces, they don't like having their hair wet or to be touched on the face and head. It all stems from the oral aversion.
Next was speech where Max was encouraged to enjoy more water play. She gave him a tub of water to play with and got him to bath and wash the faces of some toy animals (Max does not let us wash his face or brush his teeth). She then told Max the animals were hungry and could he pls feed them. She gave him a spoon and he spooned water into their mouths, which is great! We told her that he had tried some food the night before and she was very happy, so we all thought he must be starting to get hungry and may be better in the play picnic.
Next was OT. This was our first OT session. We were mainly asked about if Max is sensitive anywhere else beside his mouth. We discovered yes he I, as he gets very upset if his hands get dirty, even a spec of dirt or sand or food he becomes very upset. He also does not like to hold hands or be touched on his hands (or feet) too much. Again she explained this is all related to early trauma and all the negative experiences he had with needles and lines in his hands and feet as a baby. She said the focus of OT was to slowly desensitise these fears. She said he'll never help himself to food if he cant tolerate messy hands.
Next the play picnic.."The main event" as we call it. Max was showing signs of hunger by clearing his throat and moving his mouth as you would if you were eating. He interacted a little with the other kids but again didn't touch any food or drink at all. One of the other boys, John was touching and playing with the food and even allowed one of the Dr's to smear some chocolate on his mouth, which he tasted. They said Max is not ready for this yet. We were hopeful he would try something after trying the chocolate the night before, plus he must be so hungry! But nothing.
We met with the professor and he told us to again drop Max's tube feeds.
We've been told no more dummy, only in the first few minutes to get him to sleep. We've always encouraged the dummy as we figure its a oral experience that he enjoys. He loves his dummy and we had to take it off him there and then at the hospital. Max cried and begged. The professor said its like giving up smoking, the more he has the dummy in his mouth the less likely he is to eat. When you give up smoking you eat more because you are looking for the oral stimulation.
We went home and laid out a variety of foods on a small table for him to go to if he wants to. Its so hard to not say anything or offer it to him, as a mum I instinctively want to say "here Max here's some food, have some pls," but this is exactly what not to do. We have to make him feel in control of this choice to eat, so it is HIS choice not ours. We sat around and ate tea and just chatted but he showed no interest at all, which we felt was a step back from the night before.


On 28th of Dec 2011, after over 30hours of travelling we finally arrive in Austria, Graz. It feels like a relief to be here, after working so long on our Mission for Max fundraiser. Max the right word.. "Difficult" on the flight. Over 30 hours of flying and waiting at airports and an active 2 year old boy was... difficult!
We had a few days to settle in, get over the jet lag and adjust to the time difference before we started at the hospital. We are staying at Hotel Gollner in a great little self contained apartment right in the city centre of Graz. We also had these few days to explore this gorgeous city, lots of beautiful old architecture, cobble stone streets, cosy little cafes and fairy lights everywhere. Its very cold here, it only gets to about 2 degrees Celsius at the most, but we have become used to this already and just rug up to stroll the beautiful, quaint, little streets. It was easy to believe we were here for a holiday for a few days, we enjoyed New Years Eve here with a magic show in the city centre square and little huts everywhere serving warm beer and hot spirits, and lights everywhere like a fairytale wonderland! Although in the back of our minds was always that thought of why we're really here, and it was all to start on Monday 2nd Jan.

Monday 2nd Jan 2012: Day 1

We got a taxi from the hotel to the hospital. No many speak much English here so we had it written down in German to show the driver where to go. Its only about a 7 min drive away and apparently a tram that goes there directly from the hotel. We were so glad we got a taxi, because the hospital is HUGE! We would never have found where we were meant to go if we'd got the tram. The hospital is so big its like a small city of its own! The driver took us to the door of the kids ward.
We started the day with a meeting with all the medical team and the 2 other families there for the same reason as us, to wean their child off tube feeding. All 3 kids are boys, our Max 2yrs old, John from Ireland 18months old and Gregor from Germany is 5 yrs old. Then we had a private one on one meeting and assessment with Max's own doctor. We got given our individual program and got started straight away with the 'play picnic'. Every day at 12pm all 3 families and all the medical team met in a room and eat. There is all different foods in little bowels all over the floor/picnic rug. We all just sit around and eat and the kids are encouraged to do what ever they like with the food. They can crawl around and play with it, taste it, share it, throw it, whatever they like and us adults just eat what we bring along and chat. The idea is a non pressure, fun, friendly environment, to build the child's trust with food and too see it as something fun, social and something they may even enjoy one day. Max spent the entire hour crying and cuddling me or Steve, he didn't touch any food. None of the kids really did. One little boy, John tipped a bowel over but that's about it. They doctors said its OK, its day one, at this stage they are just getting familiar to a new situation. After this Max had speech therapy. The speech therapist mainly just wanted to meet us and get to know Max and told us she will be doing activities with max over the next few weeks to desensitise his oral aversion, such as games to build trust to let her and us touch his mouth etc. Before we went home for the day we were told to reduce his tube feeds that day. Max usually is tube fed 1300ml per day over 24 hours. We were instructed to stop his night feed at 5am and he is to have nothing via tube until after the play picnic at 2pm. So he went from 1300ml to 900ml on day 1.

Tuesday 3rd Jan: Day 2

We started the day at 10am with PT/physiotherapy. Here we mainly discussed his behaviour and how we need to make him more independent so he will eventually independently help himself to food and drink, its amazing how much we are learning and how everything is related.  Next was Speech therapy or Logo as they call it here. Today she got Max to play with a doll house with dolls that were in a kitchen. He called the dolls Buce (his uncle )Bruce, Dole (his aunty Nicole) and Edi (his cousin Ethan). He was encouraged to play feed them and sit them at a kitchen table. Again at 12 the play picnic, and again he cried and clung to Steve and I, and again he did not interact with or touch the food. They decided to send us home as they could see Max was too tired and upset to continue.
We went home and he slept for a few hours then we spent some time with my folks that have just arrived in Graz. Steve and I explained to them all about the rules and strategies they want us to follow and Mum offered to have Max stay in their room so Steve and I could catch up on some sleep, as Max has been waking at 3am every day here! Mum put some food on a little table and Max sucked on a bit of chocolate and tried to eat a blueberry! He gagged on the blueberry but that's OK, he tried and is showing some interest! We all have to ignore these little achievments and make no fuss or 'big deal' about it in front of him. The more he knows how much we want him to eat the more preasure he feels. We were all quitely smiling!