Where is 'em?

This is a classic Lucia statement in reference to her sausages - yes, 2 weeks on from the clinic and sausages are still the food of choice, although vegemite sandwiches and Pom Bears are a close second. In short, Lucia is still eating; I think it was a concern that she may change her mind outside the controlled environment of the clinic, and hence the transition period here has been beneficial. Breakfast is a little cereal, then vegemite and ham on toast; mid morning snacks of Pom Bears, more sandwiches; lunch is sausages and fish fingers; afternoon snacks tend to be biscuits and fruit, followed by supper, which is whatever we are eating. Then there is always a before bed snack and sometimes even a midnight biccie celebration. Lucia is eating beautifully!

Some days she doesn't eat quite as much as I would like her to, but Tony has reminded me that most 3yr olds are up and down on this front. It is hard not to panic a little, and regress back to calorie-counting but then I remember how I used to, not so very long ago, syringe over 2000 calories into her daily, via the tube, with no weight gain. I don't beleive she has lost weight(I won't weight her till we attend a hospital appointment back in Brisbane)and while I don't think that childhood obesity will be an issue for Lucia, the sausage obsession is a different matter.

She has enjoyed being in the kitchen and helping prepare meals(quite the stirrer)and seems to be perfectly comfortable with the social aspect of mealtimes, so when we return this will be a joy to experience at home. We have had many visitors see firsthand the 'eating' in action - it is fair to say that everyone has been more than impressed, and it continues to be a wonderful event to witness.

I have to say that Lucia has been very adaptable too with a couple of nights away here and there - it has been so much easier to travel without the tubes, formula, syringes, feeding pump etc. We leave the UK on Thursday and my greatest worry for the 2 day trip is how to sneak sausages through security - they aren't mentioned on the medical letter!

Graz - we came, we saw, we ate

It is now just over 3 weeks since we started at the tube-weaning clinic in Graz and we have a happy daughter who is eating up to 3 frankfurters in one sitting! She is also enjoying rye bread, ham, cheese, pasta, paella, fried rice, fish, crisps(bit of a fave), chicken, beef and sausages and today is the first day that I offered her medications and supplements in the form of a drink - she is sipping it slowly but is quite determined that she no longer wants any sort of tube activity. I have actually packed the syringes away in some pocket in the suitcase, along with the feeding tubes - it was a momentous event. Her last weight was taken on Friday, 11.34kg and she will be leaving the clinic having put a little weight on, but more importantly, as a tube-weaned, eating individual.This is the most amazing result possible and we would like to thank the clinic team for their knowledge, guidance and support. But Tony and I would also like to thank Lucia - we are so proud of her drive and her determination to finally be rid of the tube feeding - what an achievement!
We would like to acknowledge the other parents and children that we met at the clinic in Graz, and thank them for their support and wish them the very best in their own journeys.

We have left Graz and Austria now - the clinic were happy to bid us farewell but have made it clear that they can help and advise from afar. We have been encouraged to give Lucia what she wants to eat, when she wants it, for at least a couple of months. Then we can start introducing set mealtimes and explain appropriate eating activity - for now she has three years of eating to catch up on, and it appears that no one and nothing should get in her way. Tony and I will also have a certain amount of adjustment to get used to, and will have to renovate the pantry for starters! Also this intense 3week eating programme has resulted in some tighter waistbands and snugger tops, so we will need to look at a longterm solution for this!

We are currently in East Sussex, UK visiting and eating family out of house and home. This will also be a transition period to see if Lucia can accept eating home-cooked meals, rather than eating out twice a day. On our return to Australia we shall look forward to removing the Mickey button from her body once and for all.

Achtung splat!

This title has no relevance other than it was the warning on the cable car going up to the Schlossberg fort, and we thought it was funny and wanted to share it with you!
Achtung means 'attention/danger' and I think the other word speaks for itself - it has become our new favourite phrase and when we cross the road at a crossing all 3 of us chorus!

Anyway, I digress - it is a very hot day here today and no air-con to speak of at this internet cafe so excuse the rambling. Latest update is that Lucia has been 9 days eating orally and no tube, and weight has gone very slightly up, yayy! On Tuesday we had a discussion with the whole team - 25 of them around a very big table and us(quite overwhelming if you know what I mean, especialy with German accents!) - they questioned the need for medication these days, and anything else being put down the tube. With someone like Lucia they would recomend that the button be surgically removed within a month of returning to Qld!As Tony was off on another of his admin wild-goose chases(ahh, how he loves them!)it was just Lucia and I fronting up to the inquisition and I was so proud of her facing them all while munching on both a sandwich and a cheese triangle(all at 9,15am).

Therapies this week have been a little more problematic - lots of tantrums and 'no' and tears - I must say though that this all improved when T and I left the room. Prof DS has suggested some nondirective analytical play therapy - she says that sooner or later Lucia's differences will make an impact on her and this wil help. I cannot really explain the kindof person MDS is as I wouldn't do her justice - suffice to say that she truly is a force to be reckoned with, in a positive way! On Tuesday she invited us to attend the rehearsals of the Amadeus Choir, a production that she is directing. She is very involved in the arts as well as children at the hospital and often she combines the two - so there we sat for a couple of hours listening to some beautiful soloists and choirs - Lucia was enthralled and was quite beguiled by the king!

For the last couple of days we have been trying to pay our account - it has been a comedy of errors and we still haven't got anywhere. One one hand an office says no matter, on the other it demands 5000 euro! Well, it is over and out as the temp reaches extreme levels in this cafe - various ice-creams are calling us!

The hamster....

Well, it has been 4 days now with no tube feeding (justmedication)and we seem to have acquired a hamster! Lucia eats steadily most of the day but stores her food in her cheeks - we are reliably informed by the prog team that this is typical for someone like Lucia - and keeps shovelling it all in. We keep having to tell her to 'slow down' and 'finish what is in your mouth', which as you can imagine, are alien words for Tony and me. Her weight has decreased to 11.14kg but neither we nor the team are worried at this stage since we are witnessing the magnificent oral intake. We are a little bored with bread, ham and cheese so have been looking for new 'cuisines' to offer her and have already tried pasta, fried rice, greek salad and fried chicken. I never thought we would say this, being the labradors that we are, but both Tony and I confess to being over 'eating'!
As she 'grazes' all day we have to pack a snack box early in the morning which consists of vegemite on rye bread, ham, cheese, frankfurters(naturally),biscuits and pretzel sticks - this is a whole new experience for us and we take the morning preparation very seriously. We have been encouraged to try as many foods as possible but the prof thinks we should stay away from dairy, nuts and spices. Her skin is presenting differently each day and is very inflamed in areas, and the other night she was up for several hours scratching all over her body(very rare for her).
When we are back at the cottage and not patting the menagerie that surrounds us we are trying to cook family meals,or wrestle with the washing machine. Earlier this week our clothes got stuck in the machine and it was quite a drama to explain our concern to the owners who speak no English. Then Tony lost sound on the only English speaking channel on the ancient TV - this was further inflamed by the cost of an english Daily Mail of 3,5euros. Meanwhile we have ben encouraged to do lots of 'smelling' by the therapists so no flower or rose is spared , and my they do have some quite fabulous roses here in Graz! Also the weather has brightened up quite considerably to over 20 degrees now - best get back to those ice-creams.

Ice-cream, joggers and loos...

I must comment on how fabulous the ice-cream is here - and there is an Eis stand on every corner, even more fabulous. It is probably just as well that the climate hasn't gone beyond 18 degrees otherwise I would be indulging every hour. Lucia took her first lick yesterday and hasn't looked back. Meanwhile I think we have seen every member of the Graz community out jogging - this must be the jogging capital of the world - although they don't look particularly happy about it...and then there are the loos - fantastic wherever we go. I never thought that this would be high on my priorities when visiting another country, but I have been more than impressed on this front. Each cafe, resturant, platz all have very clean, modern and empty amenities. Ofcourse with all these 'ups' there are some 'downs' - the people of Graz stare, not just glance or briefly check out Lucia, I mean stare for a minimum of 2 minutes and within the boundaries of safe personal space. I thought I was fairly hardened to this but apparently not, so we have had to seek out appropriate 'please don't stare'phrases. But once again this was over-ridden at the w-e with 2 separate incidences: one from a young Christian man in the main Platz, with impeccable English, who asked if we would mind if he prayed for Lucia and the other from an older lady on a very packed tram who also wanted to pray for Lucia. She seemed to understand that these people were friendly and compassionate and when I asked how her legs were feeling she said that the man had asked baby Jesus to make them better, and that baby Jesus had listened and made them better. There is an icon of Madonna and Child in her room and when we got home she said 'thank you Jesus'.

So over the w-e we tried to encourage more exercise and leg-stretching hoping to alleviate the pain at the back of her legs. The skin is still very raw and tender but she seems to be a little better - Prof DS reminded us that she has sampled abóut 25 new tastes and that it may well be a reaction. We reduced tube feeding to 250ml at dinner and late night feed - her wieght on Mon was the same, so this is great news. She was once again awarded the 'champion' and 'soooper'comment!

For the last 2 days it has been very intense therapy each morning - an hour of OT, then physio and then speech. Initially she was very reserved (i imagine she is therapied out!) but has warmed up to the idea of interactive games. At the play picnic both today and yesterday she continued to sample a few new tastes, but observes all the other children very intently. And last night we decided to eat at home (no mean feat with only one saucepan and a hotplate!) - we made mashed potato, a sausage smorgasbord and a salad...Lucia consummed a couple of small sausages(over a 1,5hr period) and a tablespoon of mash - happy days! And tomorrow we have been instructed to cease all tube feeds - so this will be our first tube-free day ever!

Other children on the programme are experiencing lethargy, mood swings etc. due to reduced feeds but Lucia seems to be coping very well. She sleeps a good 11hrs each night and certainly is enjoying life without the vomitting and pain. So as we come to the half-way mark in the programme I can honestly say that it has been a great success so far. Tony and I are thrilled with the result to date, and last night's family supper was a special event indeed.

Sausages are considered junk food here!

So we found the sausages in a food stall at the tram station - the setting was all a bit seedy, so we have concluded that perhaps Austrians don't get as excited as Tony about sausages. Lucia nibbled her first frankfurter - Tony is a happy man.
We tried swimming in the hydrotherapy pool, but it seems that the hospital warm the room not the water and Lucia was not impressed with the 25 degree pool.Today the spielsesen was with Tony - they mixed all sorts of food onto one plate and Lucia helped feed one of the younger patients Noah. The plan is to completely stop breakfast and lunch through her tube as weight is still the same - 11.16kg - this is a bold move as it represents 50% of her calories for the day, but whatever is reaching her tummy from the grazing seems to be enough. As her carer and personal calorie counter this is difficult for me to comprehend, but nevertheless I see the scales. She hasn't accepted any liquids other than water so far so that is what we will work on over the w-e. The prog staff are all happy with her progress to date. Unfortunately her skin has been very distressed since we have been here - it is probably a combination of flights, weather(cold & crisp)and the addition of real food - her legs specifically are very sore and she screams throughout her skincare regimen. We really hope that this settles down and think that maybe she is sitting too long in her buggy of an afternoon.

Where are the sausages?

Lucia woke early again and requested a biccie. After the biccie she wanted an apricot – and all this before 7am. She doesn’t eat it all but she nibbles and chews in a very exaggerated way and seems to be enjoying it. Bath with Tony while I prepare some ‘snacks’ for her bag – what a genuinely new experience! We have been advised to encourage her subtly but at every opportunity so we need to be prepared for any request! Regretably the eating of ‘real’ food is also having a dreadful effect on her bowels and the constipation is causing her to scream and bleed at every visit; she is now refusing to go because of the pain so we need to address this with the hospital. I guess her system has taken a battering in the last couple of weeks.
It took us only 10 mins to walk through the wood this morning – it was raining so we picked up the pace due to unsuitable clothing - very unprepared on that front! No joggers today. Lucia asked to go to the loo no less than 8 times but was very distressed each visit and with no results. Today we were meeting the physio, Bettina and Elizabeth, the speech pathologist also joined us to assess Lucia. All the notes and summaries that I have presented them with have been well received and they are interested to hear about all the methods our therapists have been using back in Australia. For me, I can finally see how those weeks, months and years of attending therapy sessions have actually paid off – at the time the progress seemed so miniscule, so painfully slow, so desperate sometimes, but today as I looked at Lucia playing on the mats with Tony it all came together. The therapists will work on an active programme for her and we meet again next week. At play picnic it was my turn to go in while Tony watched from the adjacent room. Lucia sat in a different spot today and with some coaxing reached for a plate of grilled chicken. Avi, the Israeli doctor, had heard about her constipation and was encouraging fruit juice and yoghurt in various forms by placing plastic cups and containers within arms reach , but Hermania tipped most of these out all over herself whilst spraying Lucia too. She remained pensive throughout but edged closer to me, but still seemed 'involved' with the food. Of all the children present, she seems to be the most at ease with the food.Forgot to mention a very important fact - weight still th esame which in kilnik terms is, and I quote Prof.D-S 'champion!'
We walked down to the tram station after the spielsein - Tony still hasn't eaten a sausage and is getting quite anxious...ham, bread and cheese are not cutting it for him!

Day Two: grazing in Graz

I just deleted the whole post, so here is take 2! The klinik is going well - Lucia has been assessed by all staff now and they are happy with her progress. She weighs 11.1kg now but hasn't lost any further since yesterday which is a good sign especially as we have reduced all her lunch and half of her b'fast. Essentially she has been 'grazing' all day - quite outstanding - biccies, ham, cheese, fruit - not large amounts but significant nibbles and sucks etc. without spitting out and without gagging. In fact she seems quite comfortable with the whole process. We are staying in a very heidi-esque place - goats, reindeer, peacocks and shetland ponies roam the surrounding fields. We have a hike through a forest to get to breakfast at the main house and a further 30min woody adventure to reach the hospital - hence we had to purchase a stroller yesterday! Graz itself is very picturesque and is very accessible by way of trams and buses, but is seems unspoilt by tourism. Lots of cafes, ice creameries, bakeries etc. - all to be encouraged according to the feeding team. Ah well, when needs must!Tomorrow there is further assessments by therapists etc. and the daily picnic - so far so good!