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!

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!

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!

Up and down the mountain...in 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

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.

Mmmmmmm

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!!!! :)

Hope

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!