Feeding therapy - Day 18 (last day)

Wow! Last day in Graz. Back to the big smoke tomorrow ready for Christmas festivities with the family on Sunday. My Dad has kindly offered to collect us from the airport in our car. Mixed emotions about coming home as we're not quite off the tube yet and would probably choose to stay another few weeks if a) it wasn't Christmas b) I had time off work and c) we could afford it! That said we really miss our family and friends back home. Not forgetting Derek and Clive of course (Lilian absolutely loves her little ginger terrors and she can meow and make the sign the word for cat).

Derek and Clive. Likely this is all they've done whilst we've been away and they haven't even noticed we're gone.

We started off a bit depressed and emotional today. Late as ever of course and worried that Lilian didn't cope with her first night without any food via the tube. Mette was especially tired as she was up all night giving Lilian milk via the finger syringe whenever she woke up upset about being hungry. This was probably at least once an hour and was very hard work. I helped by being the pillow for Lilian to lie her heard on which was nice as I got to cuddle my darling daughter but bad because I got covered in milk. We had our last SLT session this morning. It wasn't much fun as we think Lilian was a bit tired and she refused her spoon. It didn't help that Mummy and Daddy were grumpy either.

However, later in the morning we got to meet with the Doctors and they were really impressed with how Lilian looked and acted today. She had perked up by then and we'd given her more milk via the finger syringe. Also Mummy and Daddy were happier too. They said that they are happy for us to not feed via the tube for the next three nights to see how things pan out. We need to ensure that Lilian receives at least 400ml of fluid (water included) per 24 hours. We should aim to feed Lilian little and often via the syringe so she manages to gain control of her tummy and mouth communicating with each other. As this improves the "little" doses will increase in volume meaning the "often" can be reduced. It might take a week or a month; who knows. In the meantime we're going to continue with play picnics at home and get that open mouth ready for more spoons. Oskar is starting to like drinking from a sippy cup so he's going to be a good role model for Lilian to learn from as she progresses from the finger syringe.


I think the majority of this process is actually aimed at the parents who I think are probably the biggest hurdle to get over. This is especially true with Mette and I as we've been told so many things by so many medical (and non-medical) people about how Lilian "should" be developing and what she "can't" do that we forgot to ask Lilian for her opinion. Lilian has told us that she can swallow, be allowed to get hungry, lose some weight and not be ill whilst staying happy and active and lastly she can learn how to react to a hungry tummy by being fed via her mouth and not a tube in her tummy. Thanks Lilian. It took us a while to understand and come to terms with this but we're on the road now and it won't be long.


So, we leave tomorrow with a partially tube free child. Not tube free which would have been fantastic but partial is also pretty good and we're chuffed. Given the progress we've made and the new skills Lilian has developed we're sure she'll get off that tube in no time at all. The three weeks have definitely been worth it and we'd like to thank a lot of people who've helped us along the way. Of course all the staff in Graz who've put up with us and our persistent questions. They don't escape that easily though as we're coming back via the on-line therapy when Christmas is over to get the tube gone for good. Both our families for their love and support without which this trip would have been nearly impossible. My work for letting me take three weeks unpaid leave at such short notice and lastly our neighbour and her two children William and Poppy who have looked after Derek and Clive everyday. I'm sure they loved it!

Feeding therapy - Day 17

Nearly there then, the penultimate day of therapy. Everything is starting to shutdown for Christmas. Even the hospital feels empty.

We had a session with speech and language. Lilian tried some vanilla rice pudding and loved it. She was OPENING HER MOUTH to accept the spoon whenever it was offered. This is pretty big. Not just once but at least 10 to 15 times in a row. Not bad. Something we're going to continue to push.

The lunch therapy didn't really work as we were all tired so we left after a few feeble attempts.

We said our goodbyes to Eva today. She's been wonderful and has really helped Lilian during her stay. We've made contact with a private physio in London that Eva recommended and they've accepted Lilian onto their books. The first session is coming up soon after new year. Really excited about that.

We're trying no tube food tonight. For the first time ever. Just to see how Lilian reacts. No doubt she'll get hungry and lose some weight but it might boost her desire to eat. Only for one night though. Back to norml'ish tube feeds afterwards but hopefully with smaller amounts.

Mmmmm...afternoon tea.

Feeding therapy - Day 16

Chilly willy today. Down to -6 on the mobile phone weather app. Not sure if it was that cold but the stream alongside the path we take to the hospital is starting to freeze over. Still no snow! I packed a big old pair of wellington boots too. Looks like they are going to stay virgins until we're back in the UK.

Nearly frozen babbling brook.

A kick off to the day with some OT. In fact our last session of our Graz tour of duty. It's a real shame as we've always really enjoyed OT and today was no exception. Lilian had a good old swing about as did Oskar. We took snaps this time.

King of the swingers.

Zooooom!

Lastly a play picnic for lunch. Lilian sat in her usual car seat but wasn't up for much lunch today. She grumbled a fair bit so we just gave her some soup and other treats to play with instead. There's not much point pushing a child to eat if they aren't in the mood.

Lilian is now nearing the end of her three week stay. She is continuing to make great progress with the finger syringe and now accepts it more and more. Her weight is still going up so we're going to start to drop her tube intake slowly but surely. Remember the current aim is to move the milk from the tube to the mouth. The mouth methods will start with the finger syringe and then evolve to spoons, sippy cups and then a knife and fork! We've no idea how long it'll take but Lilian hasn't used her mouth properly for nearly two years so she's got a fair bit of catch-up. All the staff here really praise her progress and are more than happy that Lilian is well on her way. We're going to pick-up the web coaching when we're in the UK so we have a professional on hand.

Feeding therapy - Day 15

Another good day. Lilian continues to take the finger syringe in her mouth with little or no complaint. We've been told that she's over the hard part of getting it in and now we just need to practice practice practice so we can up the volume.

She tried a new flavour today. A really strong fruit flavoured energy/calorie/fibre juice made by the same people who make her milk. It seemed to go down really well which is great as it means she get to taste more than just vanilla.

The rash is gone and Lilian is in a pretty good mood today. Not much sleep last night but she had a lovely snooze in bed with me this morning which is always a nice way to start the day. So sweet.

Lilian is continuing to try a new move on her OT swing by going superwoman style on her front. Only for short burst until she starts to get grumpy (she hates tummy time remember) but she tolerates it for longer and longer periods each time. The OT suggests we seriously look at getting a swing installed at home or asking our OT service if we can use theirs as it has so much benefit for Lilian. Another new project to look into when we get back to the UK!

Lilian is also gaining weight back from where she'd lost it. She's put on 70g over the last 24 hours and she even had a big poo before we weighed her. Her weight has gone up since roughly we started the finger feed so we assume she's definitely taking it in. Let's hope this continues as a tube fed baby going through a wean can lose as easily as she gains.

End of week two in Graz

A roller coaster week and the introduction of the finger syringe. The week started okay but we were starting to get a bit lost and confused about the process. We've been reassured that it's the normal process for most parents and we're not panicky or otherwise overly concerned. The staff seemed to do a good job of keeping us under control and we've certainly exited week two in a much better mood.

Lilian is now only taking milk via the pump overnight. During the day she gets finger syringe milk or two or three play picnics. She's given sugary water when we think she tired but that's right down to 60ml from 360ml when we arrived. Her weight has dropped, that's to be expected, but today she weighed 9Kg when we arrived two weeks ago it was 9.3Kg that's pretty good going and shows that she's taking something in during the picnics and finger syringe.

Oskar is a cheeky little mite at the moment and has grown two bottom teeth since we've been here. He's also decided that he doesn't need to sleep and stays up until at least midnight.Then he's up three or four times in the night for feeds or a cuddle. I think it's down partly to the teeth and the pain plus the fact he sleeps more during the day as we're concentrating on Lilian or walking about with the pram which means almost instant sleep for babies his age.

So four more days of therapy then it's back to the UK and Christmas with my family. We're torn to be honest. We miss the UK and being in our own home and the fact it's Christmas is sort of exciting but....we're here for Lilian and to get her onto a path that will make her quality of life so much better. We did ask about staying for longer but as Lilian appears to be doing so well there's little need. We can mimic what we're doing here at home with support from family and friends. It's not going to be easy but we have a door leading away from the damned tube which is exactly what we've worked towards for the last few months.

Eva recommended a private physio in London who worked wonders with one of her previous kids. I contacted the physio and we're going to look at sorting out something in the new year. Apart from feeding Lilian is way behind with her physio development. We need to step up the game a little and look into investing some serious hours to see if we can move along a bit faster. Oskar is already ahead of Lilian in some regards so hopefully he can help out too.

Feeding therapy - Day 14

After yesterdays lazy day we started off okay and were on time for our OT session at 9am. Lilian spent some more time in the box of beans and had a good old swing about too.

Weeeeeeee!

Oskar wanted a swing too so we took him to the park during a break.

Yesterday Lilian had a bit of a rash on her back and tummy. She didn't have a fever and seemed okay. We asked the Doctor today and he suggested a blood sample. The sample suggests something is not right but nothing to be concerned about. Possibly more fluids are needed. We'll keep and eye on it over the next 24 hours. Lilian seems happy enough and it doesn't itch etc.

Nothing more between the OT and noons play picnic so we went to the park. Oskar had a swing about and Lilian took a 2 minute snooze. The air ambulance arrived which gave us a couple of minutes of excitement.

Lilian did very well at the play picnic. She had lots of custard and enjoyed it very much. We're still going with the finger syringe and Lilian seems to be accepting it. Yesterday at home we managed 200ml but today only 75ml. This might be because we were out and about or that she not up for it as much as yesterday. The key thing is not to get disheartened and to continue as planned.

Feeding therapy - Day 13

Best laid plans and all that. Today was a wipe out. Mette feels rough. Lilian has a rash. Oskar's new teeth hurt. My head hurts. We were meant to climb the mountain but opted to stay at home and recuperate instead. It worked. Lilian took 200ml of milk via the finger feed. A massive achievement. We've not given her anything via the tube since last night. The last week starts tomorrow. Let's see what else Lilian can achieve before we head back to the UK.

Feeding therapy - Day 12

A Saturday but Eva offered to come into the clinic for a lunchtime play picnic. So generous! We sat Lilian in an old child's car seat to try and get her into a relatively upright position but without her having to work so she can fully concentrate on her feeding. This worked really well and whilst she still managed to turn her head a few times she didn't cry and was totally relaxed. We reckon she took at least 20ml of milk via the finger syringe. Great progress and we should be attempting this about four times a day. It took roughly half and hour until Lilian got moody enough for us to stop. As this position works we can try the same whilst out and about in the buggy and at home with Oskar's old car seat.

Mette feeds Lilian in the car seat while Eva looks on.

The rest of the day off so we took a trip to the art gallery in Graz town centre. It's a really great building and I'm sure I've seen it on TV before. They nick named it the alien or the whale. We sought out two of the exhibitions before the kids had had enough. One mainly photographic gallery by Ai Weiwei and another object gallery by Antje Majewski.

Can you spot the modern art museum?

We took a stroll around town and had some curried sausage and Austrian mulled wine. The sausage was great but the wine was too sour. Bleurgh. The Danish one is much nicer and I like the Swedish version also. It has nuts in it. Floating about.

Sausage and curry/spicy sauce with a really sour mulled wine.

Tomorrow we're going to climb the mountain in the town so we took a quick look from the streets below.

Looks steep.

Feeding therapy - Day 11

Yay! A happy day and the end of week two. One more to go then back to Blighty. Actually we're coming back late afternoon on Christmas Eve. We've done zero shopping and have no pressies for anyone. Even our own kids. Maybe I should buy a job lot of the RyanAir calendars on the plane? I know my Dad would like a copy as he found it difficult to check flight details on their website earlier tonight as he kept getting distracted!

We kicked off today with some speech and language. Really concentrating on the finger syringes now. Next was some music therapy which was pretty nice. Then some physio before the play picnic at noon. Phew. Busy day and not much difference to report from earlier in the week but we're getting there/somewhere I'm sure.

A big difference mentally to make us happy though. We were never quite sure where Lilian was going with her therapy and felt a bit lost and confused. Even though we're at the end of week two we weren't sure of the current goal. Yesterday was pretty hard and I think we both felt very depressed and upset. Today, during physio, we had another great chat with Eva and got some good clear answers on where we're going. The goal is to migrate Lilian from feeding via her tube to feeding via the finger syringe. Then we move onto spoon feeding and lastly normal every day feeding. We've got to keep with the same flavour each time so she remembers the taste. The milk and water need to drop some more to make sure Lilian associates hunger and being fed. This will happen early next week and we're going to stop feeding Lilian on the strict schedule we've become accustomed to.

One thing to bear in mind with our care for Lilian is that she is a pretty complex little thing with 21 different medical departments currently looking after her. Back in the UK Mette has pretty much daily appointments which are all medical in nature. A majority of her care has been dictated to us by Doctors and not by nature. We're learning so much new stuff from Oskar which we've never done with Lilian. Different feeding cues and behavioural aspects are just the start. As we're so busy with the medical stuff we tend to become blind to the child. We need to step back from the medical and look at what Lilian is telling us. If she is hungry we'll try the syringe or some sugar water. If she's not then we won't. Before we'd just pump milk in regardless of how Lilian felt about it according to out strictly controlled schedule. Living by a schedule is probably okay if you're still tube feeding or have issues with weight but we're trying to get rid of the tube here so living by the clock and scales isn't going to work. It's not easy to let go of this (not the tube you understand!) as it's been our life since Lilian was born nearly two years ago but we know it's for the best and we have great support from the excellent professionals here in Graz. Lets just hope we can stick with it.

One last thing. As I knew I wasn't going to be in the office for a while I took the opportunity to let my face get hairy and not shave. I ended up a bit like this so have taken the razor out tonight to bring back my youthful good looks. A colleague at work goes for this look but my facial hair is a mix of blond and auburn. Almost a strawberry blond you might say. Some other work colleagues might differ and claim ginger but they are misguided ;-)

Feeding therapy - Day 10

Bad start but great ending.

Lilian wasn't well last night and was awake crying pretty much all night. Oskar felt left out and also cried all night. Both Mette and I stayed up trying to get two upset babies to sleep. We failed and got zero sleep. Grumpy, knackered and emotional parents does not make for a happy place today!

At least today we just had a play picnic to attend at the clinic. We could try to get some rest in the morning. Or not. We were late for the picnic and Lilian had to be seen by the Doctor to make sure she wasn't dehydrated or had caught a virus. Both appear negative and she seems much happier tonight which is a blessing as if she becomes ill then the therapy will be affected.

So we had a quick picnic with the usual licking of everything then a blood test and a grumpy pair of parents snapping at each other. Boo. We came home in the afternoon and chose not to go the restaurant for an afternoon meal as per usual as we'd have probably killed each other.

Now to the good bit. Beatrice, the manager of the house we're staying at, had organised another special visit for Lilian and Oskar. Staying with the Christmas theme she'd invited the local professional hockey team, the Graz 99ers, over to decorate the Christmas tree. I can't think of many people who can say that their Christmas tree was erected by local sporting heroes!

Lilian is so excited she can't keep her eyes open!

The guys were really friendly and Beatrice had laid on some coffee and dickmanns so we all sat down and chatted. Apparently Graz has an annual scooter fair and Austrian people are fond of Vespa scooters. I managed to get in that I owned two Vespas and a Lambretta when I was younger and cooler. Lilian and Oskar were coo'd over and held up their part of the bargain by smiling in all the right places.

Some of the players signed their photos.

Lilian did really well and wasn't upset by all the burly men being in her house! Beatrice had her son and daughter over to help out and I think Oskar took a shine to Beatrice's daughter by employing his dimpled smile. All in all a great finish to the day. Mette and I are now happy people again. We're genuinely touched by all the efforts the magnificent Beatrice is going through to make us feel welcome in Austria and it'll make this medical holiday all the more memorable for it.

The finished article.

Feeding therapy - Day 9

A good day today. We started Lilian off on a nice strong coffee to help her get over her tiredness. We were meant to have a swimming session but the pool is still closed so we had a play picnic breakfast instead. This started off okay and Lilian licked her food etc. I pulled out the finger syringes and thought we'd try again. I'm not sure why but Lilian accepted the syringe today. She didn't cry or moan and hardly pushed my hand away at all. I managed to "feed" her at least 60ml of milk of which only a large amount went down her top. It's a brilliant start though. Later Eva brought us some high calorie vanilla and banana flavoured milk as Lilian's milk has an odd fish smell and isn't great for oral feeding. We're going to keep the finger syringes up and try them throughout the day. Once Lilian starts to realise that when she eats her tummy gets full she'll be much more open to being fed. Obvious really but such hard work.

Lilian and coffee.

The usual play picnic at lunch. Again the food was licked and played with. She did have a good lick of some chocolate. Oskar had carrots for lunch and ended up with a bad Essex tan over his face. A thing to note about Oskar's own wean. Last week he was 100% boob fed. Now he has sausage sticks, carrot, potato and tiramisu. Only tastes and licks you understand but it's all good. Mette is starting to come around to the idea...sort of. He's still getting boobs. Last night he only wanted one feed instead of three so hopefully the carrots are filling the gap.

Oskar just slightly wired after less than half a teaspoon of tirimisu this afternoon.

We met Prof. Marguerite Dunitz-Scheer for the first time today. We've spoken to her during the web wean but she was off the last couple of weeks. We both came away with much more confidence somehow. Lilian is still getting too much fluid via her tube. This time its the sugar water (for energy) that has to be reduced. Instead of 60ml six times a day we're going to aim for only four times a day and only when Lilian shows that she needs it. Until now we've given it to her regardless to meet the daily target.

Last session was OT. More beans but no swings today. We had a go with the finger syringe whilst she was tinkering with her beans. Not as successful as breakfast but still pretty good. She is definitely swallowing milk. Mette was worried about Lilian's ability to swallow but zero gags and a good 20ml went in this afternoon.

Showing the syringe the hand because the wrist is pissed!

Go on then, just a drop.

All in all a good day today. Such large amounts via the finger syringe was great plus the brief meeting with Marguerite really boosted us. We're still looking at returning to the UK next Friday for Christmas with my family. We're going to talk it over with the staff tomorrow.

Lilian having some trifle.

Feeding therapy - Day 8

A day late updating the blog. Knackered yesterday. So tired. So little time. Please can I go back to my nice cosy office job please!

A cold start to the day.

A full day of therapies. A start with some physio but Lilian was just too tired to bother. She didn't sleep very well and is still getting used to being hungry in the morning. Her last feed is at 2am now. We skipped the session after 10 minutes and went for a walk in the woods instead. Lilian had a nice snooze and we had a nice strong coffee.

After an hour relaxing back to work. Next was speech and language. Something new today. Finger syringes. It's essentially a small 3ml syringe with a soft rubber tip that you can use to get fluid into mouths that don't want to open. Lilian wasn't having much fun though but we gave it a go. We'll try again.

A finger syringe.

Last session was OT. More beans in a box and some swing time. Oskar wanted a go on the swing too.

Feeding therapy - Day 7

A good start to the week ahead. We were on time for our first appointment (ever).

A view from the hospital.

Some OT to start the day then. Lilian first did her trick of emptying a box of dried beans into a smaller box. Sometimes back again, sometimes across the floor and sometimes into our hands. She loves it and is sooo getting a box of beans for Christmas. Next up was the indoor swing. She just loves being swung about and is getting pretty good at maintaining her balance. The OT is very pleased with Lilian; high five!

Next some physio. Lilian hates physio. She is like her Mum in this respect. I'm sure Mette has told Lilian that if you start to sweat then it's your body telling you to stop! However, Lilian has made massive steps forward compared to last week. For example, she no longer cries all the time, she spends most of her time on her tummy and she wasn't sick everywhere. She also tries her hardest to get toys herself instead of asking Mum/Dad to do it for her. In one week such progress is fantastic.

The play picnic as usual was at noon. Oskar had some potato/carrot/meat purée on his tummy and Lilian licked at a mixture of custard, mashed potato and chocolate. No real difference to the last session on Friday but then again the next step is for Lilian to eat/chew/swallow so it's quite a big step she has to take.

A quick nap before speech and language.

A quick visit to the pharmacy and a sleep and then the last session of the day; some mid afternoon speech and language. Again nothing much new here but we did try drinking from a big girls bottle and enjoyed emptying a big packet of crisps into everyone's hand apart from Daddies; an enforced diet for Daddy then.

We managed to speak to some of the medical staff to discuss our concerns and answer some of our questions. We had a really good conversation with Eva who takes Lilian for Physio and also runs the play picnics. Our main query was based around what we're actually doing day in and day out. When we started the course last week we didn't really have a sit down meet outlining how it'd all work. We sort of jumped straight in. We were right to ask the question as all parents feel like this. We both came away feeling much more reassured and confident in what we're doing. Plus Eva really praised Lilian for the progress she has made. Maybe Eva sees it more as she can spot the cues better than us. We know Lilian was doing well but hadn't realised quite how good she really is. Double high five. Make it ten!

This is how I understand it. Essentially Lilian is the boss. We're going to help her with some physio and OT sessions and also try to "show" her how to eat at the play picnic. But the big point is Lilian is having her daily milk reduced to get her to start to feel hunger for the first time. Tube fed kids are essentially always full up. They stay topped up day and night on heavy milk. They never feel hungry and don't have to work for food hence they become "lazy" with eating. Who can blame them?!? By slowly reducing the milk and emphasising eating through play picnics you try to bring the child around to wanting to eat for themselves to satisfy that hungry tummy. I don't think you can expect to leave after three weeks with a tube free child but you can certainly work towards leaving with a child who might take bite size chunks of some food and maybe drink from a cup. You then build on this from home and over time wean them over to feeding themselves. Then you book in the day to have to tube removed for good! Some kids take longer than others but this programme gets them onto the right road.

One thing that we were worried about was Lilian's weight and her getting too tired to take part in the sessions properly. The weight has gone down but not too much. You have to expect this as she's getting less milk, almost half her normal amount. We weigh her daily to keep it in check and the dietitian and other medical staff monitor the figures. The tiredness thing is actually the reverse. Lilian normally wakes up at about 5:30 plays by herself for a bit then wakes us up 5 minutes later. A mid morning nap at 10 and then she's good until late afternoon. Here she sleeps in until about 7 and goes through to the afternoon without a nap. Eva explained that tube fed kids are more lethargic as they are always full. Do you feel sleepy after a big meal? Fancy running on the spot for 10 minutes? Thought not. Reducing the milk actually brings the kids around a bit and they become more active and less sleepy. Anyway, Lilian has and we love it. Another thing to consider is that as the overnight feed has reduced Lilian can now sleep better. When on the pump she'll not sleep for more than an hour at a time due to reflux etc. This ruins her sleep (and ours) and makes her tired in the day. Now she sleeps through from when the pump is switched off at about 2am. Mette hasn't slept through the night for nearly two years. I wake up too, just in case you were wondering :-)

End of week one in Graz

Austria is lovely. We feel really welcome. The people we are dealing with are all so nice (except the grumpy man in the service centre that Mette had to deal with..."where are your papers!") and the McDonalds house is perfect.

The weather is cold and it needs to snow now please! We don't mid the cold but it's more fun when it snows. We may as well get some pay off for having to dress up so warm and lug our stuff around the hospital all day long.

The hospital is pretty good too. Nice and clean and well laid out. The walk up the hill is okay as we're probably putting on kilos of weight with all the extra eating so we'll need something to keep the edge off.

The therapy itself appears to be having a positive effect. Lilian is showing small signs of changes, such as accepting the lemon drink earlier today, but we both feel a bit lost and confused. I think we'd feel better if we sat down with one of the staff and talked over how this stuff works. We sort of got thrown in at the deep end on Tuesday and haven't had a sit down talk with anyone about the overall process. We're going to ask for a meeting tomorrow so we can ask some questions and get a better handle on what's happening now and what the goals are. Some if it might seem obvious from a distance but we need a bit of hand holding now we're in the woods.

The physio is my personal favourite class as it's something Lilian really needs to develop. It's funny how different the UK is to Austria in this respect. Our physio Eva is so firm but so nice it makes me feel better. I've always been the hard one with Lilian and Mette needs to toughen up a bit. It is hard when Lilian looks at you and smiles though!

So overall a positive place to be. We feel a bit lost on the details and need to be more assertive with an action plan but Lilian is getting everything she needs and changes are emerging. We were told to plan for two weeks with three weeks as a contingency. I can't see us returning to the UK before the 23rd Dec at this moment in time but...

Feeding therapy - Day 6

Not much going on today. Both kinder stayed in bed until 9 which was new. Mette and I were still awake waiting for them to wake up though. We had a lazy morning in bed with the iPad and some chocolates. Lilian is willing to let Mette slip a tiny corner of chocolate into her mouth which she then suck/swallow (it doesn't come out at least).

And relax.

We then headed out downtown. We caught the tram right into the heart of the city. We love the tram it rocks. A Sunday in Graz is not a time for shopping; it's all shut. We headed to the kunst museum but needed some lunch first. A few false starts (it's all shut remember) and we found an Italian at the foot of the Grazer Schloßberg. It wasn't the best choice of venue as it had loads of steps and didn't appear to have child seats. We ate our (delicious) food, offered some to Lilian and left. Not a good day for lunch training then. By now it was dark and cold and we were a bit grumpy. We decided to give the kunst museum a miss and head home. We grabbed a kebab on the way for later. Not a rubbish British kebab but a proper Turkish one.

One thing is new on the feeding front. Lilian is quite keen on having a sour lemon drink from her tiny bottle. She actually opens her mouth and lets us pour some in. We've been giving her the lemon drink via her dummy for the last couple of days so she must like the taste. This is BIG.

Tomorrow is busy. 9am start with four different appointments and a 4pm finish time. Phew.

On the tram. Note Lilian's small bottle of lemon.

Oskar and I at the restaurant.

Feeding therapy - Day 5

Saturday, no therapies today so a sightseeing tour of Graz instead. In the morning we had a bt of breakfast then got the kids ready; only took us three hours today. It's still pretty cold outside, about 1 above zero, so everyone is wrapped up nice and warm.

Toastie.

A 20 minute walk and we start to hit Graz town proper. It's surprisingly quiet for a Saturday but I suppose we're used to busy London. First a walk through the park at the foot of the mountain called 'Grazer Schloßberg' which was nice but a lot of the fountains and statues have been covered over we assume for the Winter weather. We then turned a corner and was presented with a winding cobbled street that led down into Graz town.

We only investigated the main street but it was really nice. Trams everywhere. Chestnuts roasting. Decorations and people Christmas shopping. We nipped into a restaurant and had some Italian food. Lilian was offered everything. Oskar had some peach smoothie. Then we found a kids shop and bought some toys realising that we had none in the house and the kids were bored some of the time. One toy is a little ball that pops up like a jack in the box when you press buttons. The only problem is that it says words and signs in Austrian! Ha ha, now the kids are going to have three languages under their belt.

We took a tram back home and stopped for some quick food shopping. Catching up with 'Enders on iPlayer then tonights double bill of the Killing II on BBC4. Tomorrow we're going to give the Kunst museum a go and see if the kids like some modern art. The building is fantastic.

The kunst museum and my stunningly beautiful wife.

Feeding therapy - Day 4

The last day of the first weeks therapy. A 9 o'clock start with some speech and language. Lilian really loves a vibrating toy being held to her cheeks and also a massage around her mouth. This will stimulate those muscles that she isn't using by not eating.

Lilian having a cheek massage.

Next up was physio. More mat work and exercises to help strengthen her arms. Lilian appears to be tolerating tummy time more today but it's still a struggle as the tube in her tummy hurts when she's on it. It's a vicious cycle this one. Some more exercises to try at home. Maybe a circuit training routine needs to be worked out.

Our first music session after physio. The nurse played a guitar and sang some favourite nursery rhymes. Lilian loved it and banged away at a drum. She's pretty good at the drums as she plays one at the Dulwich park nursery every weekend. Over time food will be introduced to these sessions. Oskar also had a drum and whilst he wasn't as accurate as lilian he certainly made up for in terms of noise. Mette mentioned his Sepultura training has paid dividends.

Last event of the day was the play picnic. Same story as yesterday but Lilian has managed to not get quite so upset when other children come into contact with her. She looks angry but doesn't cry. Mette and I got told off by the head doctor though as we haven't been out to enjoy the "best food in Europe". He gave us a list of restaurants in the area to try. The first being a local for the students. We went straight there for lunch. Imagine a harvester. Lots of deep fried brown food. We didn't really enjoy it but Lilian had a good go on the sour cream that came with the fries. Tomorrow we're off into town to try and find something a bit more appetising and also take our first look at Graz proper.

Lilian enjoying some custard at the play picnic.

Feeding therapy - Day 3

No therapy today as it's a national holiday in Austria to celebrate the 'Feast of the Immaculate Conception'. Instead we decided to stay at home and sleep, clean and eat.

Sleeping went well, we didn't wake up until at least 7 although we stayed in bed and relaxed relaxed relaxed. Oskar, Lilian and I even managed to grab a few minutes later in the day. I don't think Mette caught us although I'm not sure who took the photo!

Ssshhh...don't tell mum we had a quick nap whilst she put the washing out.

Cleaning was much needed as the kids are going through clothes like no tomorrow. Bear in mind during the play picnics there are no rules so if Lilian wants to pour custard all over the place then she can and she certainly has taken advantage so far.

Custard.

The eating is different to last week. Lilian is putting more food to her mouth now and mimicking what Mette and I do. This evening I had a sour lemon drink and thought Lilian might like the taste. A dipped finger went down quite well and she smiled. I put some in the lid from the bottle and dipped my finger again this time sucking my own finger. Lilian immediately put her finger in the lid and did the same. Numerous times. To me this is good progress. Oskar just pulled a 'lemon baby' face....hahaha.

Lilian and Oskar teaching each other how to drink.

Tomorrow is busy. We start at 9 and have a full day of occupational therapy, physio, music therapy and speech and language plus the play picnic. We're excited to get back into it and also to show the staff some of Lilian's new tricks. Mette is going to post something soon with a more technical description of the feeding process so other families with similar problems can understand what stage Lilian is at currently. Now I'm off to figure out how to get the iPlayer working on the iPad so we can catch up on 'Enders.

Feeding therapy - Day 2

An early start today. Had to be at the swimming pool for 8. Of course we were late (we're allowed we have two babies) but the pool was closed due to some maintenance problem. The physio opted for a mat session with her instead. It was Lilian's first visit to the physio so we went through the usual background checks and current progress. Little did Lilian know what was in store! This physio is going to play hard ball and not take any mucking about. Mette and I were a little nervous at first but seeing the results come flowing out minutes later we soon got into it. Essentially we're being too nice to Lilian and need to make her work harder. Over time she's leant to rely on us to hand her toys and to move her around the place so she's not really learnt how to by herself. This was partly born from us being told Lilian has poor muscle tone. The physio disagrees and says Lilian is fine she just needs to "work out" more to build up her strength. I'm not saying it's easy but Lilian made big progress steps today in just over an hour so we're going to stick with it. Having a little brother whose just starting to learn how to crawl is a great help and Lilian is essentially at the same stage so she can learn from Oskar.

Next up was another occupational therapy session. More of the same as yesterday on this front. We're definitely going to get Lilian a big box and fill it with uncooked beans for Christmas. She just loves decanting beans to a pot and back again. Some fine motor skills were also worked on for her finger/thumb grip. Lilian has always excelled at OT so she just got loads of applause today.

Last session of the day was a feeding picnic. This is daily and the core reason we're here of course. Yesterday was a settling in session. Today we worked; Oskar too. Lots of guidance and advice and Lilian started to take an interest in some of the fluid she was offered. Small steps but again she's made progress since yesterday. I started to feed Oskar on my lap and was told to put him on his front and to feed him lying down. We'd never have done this ourselves but it really worked. He ate a whole kids size pot of peach and apple purée and loved it. Apparently as he's still little he can't sit properly on his own. If we sit him up them he has to think about sitting and eating. If he's lying down then he can concentrate on eating. Which he did with gutso. At the end of the session we were talking over some ideas with the teacher. She sorted out a bottle of water and some of the peach/apple mix. Lilian took the teat in her mouth and sort of sucked it but only when nobody was looking. She had this coy way about her which was really sweet. We went to the shops to stock up on new teats and more peach/apple mix so we can practise at home.

An early finish today so we walked home in the daylight. It's freezing at the moment quite literally. The floor is white and if there were any clouds it'd surely be snowing. Hats and gloves for definite. A day off for Austria tomorrow to get started with the Christmas festivities so we're going to take it easy and get our heads together. It's been a bit mad the last couple of days so we need to breathe.

Some pics of the walk home and a picture of our temporary home.

Feeding therapy - Day 1

Blimey, three weeks sounds like ages when you're planning the trip but when it starts you think crickey we better get started we haven't got long to go and such a hill to climb.

The hospital is massive. Like a small town with lots of seperate buildings that work their way up the side of a valley. Of course childrens services is at the top of the valley, next to the heli pad. Typically Mette and I went to the wrong side of "town" and had to hike all the way to the other side with seconds to spare.

The first day started at 10am with a check-in with the Doctors and a few forms to fill in. We got given our schedule and some informational sheets. The staff are really nice and embarrass us with their fluent English. We met one of the department heads and he reassured us that Lilian is already doing well and that we're going to enjoy ourselves.

At noon Lilian had her first of many play picnics. It's exactly like a normal picnic but the parents aren't allowed to interfere. If the child wants to pour a drink on the floor then they are allowed. Throw some mash potato over there - crack on! We're only allowed to step in if the child starts to cry or gets upset. This lasts for an hour and is meant to teach children that they can have fun with food and that it's not a bad thing. Adults are eating their own lunch during the session. I suppose part of the idea is that over time children see others enjoying food and start to take small tastes. Eventually learning that food is a good thing and actually tastes pretty good to boot.

Next up was occupational therapy. Lilian normally enjoys this one at home as to her it's play time. We first discussed her history and what she likes/dislikes. A few toys were brought out so they could gauge her skills. Then they attached a massive swing to the ceiling and put Lilian on board. Mette swung Lilian back and forth. Lilian loved it. This is meant to help strengthen her core mucsles as Lilian has to work against the swing to keep her balance.

Last session of the day was speech and language. Again we introduced Lilian to the therapist then some small tests were carried out. Lilian was taught how to feed a hand puppet which she thought was great fun. Some long thin snacks were brought out. The sour snake sweets didn't do the job but the pretzel sticks went down just fine. By down I mean the were licked to death but not swallowed. We think our little Lilian has a savoury tooth.

By then it was already four and we had a very special appointment to keep back home so we ran to the local supermarket to buy wine for daddy, sweets for mummy and pretzel sticks for Lilian then almost jogged through to woods home.

Remember we're in Austria and they do Christmas properly over here. We were just in time to get in doors before the actual Saint Nicholas arrived in his battered old Opel car or should it be sleigh? The manager of the house had organised for the local Priest to visit Lilian and Oskar to bless them and tell us the story of the proper Saint Nicholas from Turkey - not the Coca Cola fella from up north. He brought them each a small sack of treats too. The house manager had also freshly baked some traditional Austrian cinnamon pastries and made some lovely Christmas tea whilst also knocking together a gingerbread house. Like I said these guys do Christmas properly! Mette and I were truly touched by all this effort and whilst the kids are a bit small for the story I think they enjoyed being spoken too by some old geezer with a white beard and a funny hat.

Tomorrow we have swimming at stupid o'clock then some other therapies. Now we know our way about a bit it'll be a bit more relaxing. The weather is cold but not quite under freezing during the day. The lake in the woods is frozen over though so I assume it drops below zero at night. It should already be covered in snow over here so expect some white backgrounds any day now. Must be all that Christmas spirit.

Travelling from London to Graz, Austria

We thought it'd be a nightmare to travel all the way from London to Graz with two small babies and enough supplies to last three weeks. It actually worked out really well. My dad drove us to Standstead in our car which he's going to borrow whilst we're away. We checked our numerous bags and the double buggy in about 3 minutes flat, sailed through security with no tasting of milk and were suddenly deposited in Starbucks waiting for our gate to open. Books and magazine were purchased then we boarded the plane. Easy peasy.

The flight took just under two hours. Lilian and Oskar slept through most of it and when they were awake they just enjoyed the ride. Not a single tear or upset noise. Lilian enjoyed the landing as usual. Our bags, buggy and a taxi were all waiting for us past customs. The house we are staying at is 30 minutes from the airport. Nothing to report about Graz itself as it was dark. The house is sponsored by McDonalds. It's got six rooms a few bathrooms and a shared kitchen and lounge. It's really nice and we feel very lucky to be staying here. It's also only 15 minutes walk through some woods to the hospital which is handy as some of the sessions are starting very very early in the morning. Swimming at 7 anyone?

All in all we are relieved to have made it without any upsets. We're anxious about the therapy but so far Austria has welcomed our little family with open arms.

Costello Conference

We went to the Costello / CFC Conference at the Hilton Northampton hotel. We had a lovely time and it was great to gain some new knowledge and meet other families. If you want to find out more about Costello Syndrome and how to manage poor feeding issues you can watch the recording from the conference by clicking on the links above.

Wednesday: We had an evening get together meal at the Hotel. Lilian tried blue cheese on biscuits for the first time and she liked it. Grandma was on the phone during dinner and Lilian decided to copy grandma and use her blue cheese biscuit as a telephone. 

Wednesday:  After a lovely dinner Lilian and Oskar walks back to our room with the help of grandma and daddy.

Thursday: Lilian enjoying her big bed 

Thursday: The conference was too much fun for Oskar and a sleep with grandad in reception was needed.

                                                                              

Thursday: Oskar and Lilian getting ready for a swim in the hotel pool. This was Oskar’s first time swimming so a big day for him.

Thursday: Lilian in the pool with daddy

Thursday: All of us having fun at the party

Thursday: Lilian making new friends

Thursday: Lilian making friends with Erik and Samson

Thursday: Lilian and her new Swedish friend Erik

Friday: We all went to a fun park near the hotel. Lilian was very tired after her Halloween party so she slept in the pushchair most of the time

Friday: Lilian and mummy on a ride. Lilian enjoyed it but mummy got a bit dizzy and needed help getting of it.