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.

New play group in Dulwich Park

Mette found a new play group in the old ground keepers cottage in Dulwich park. It's great fun and like being in a CBBC programme as the teacher sings and dances around the room with all the kids joining in. It's a group play session more than a "raid someone elses toybox" sort of thing which is brilliant as it gets everyone involved. We played on african drums, did the limbo, sang some songs and had a dance. Lilian even played on the steel pan. Plus it's on a Saturday so I get to go too.

Pictures of Lilian and her little brother

Lilian 19 months and Oskar 6 weeks



Lilian 19 months and Oskar 6 weeks



Lilian 18 months and Oskar 4 weeks

Lilian 18 months and Oskar 4 weeks

Lilian 18 months and Oskar 3 weeks

Lilian 18 months and Oskar 1 day





New Skills

Lilian can now go from lying to sitting on her wedge. We have been practising this skill for a couple of months now so its a great achievement. Well done Lilian :-)

She has also learnt to point with her left hand.

Exercise

Lilian has been doing daily physio exercises since she was 3 months old. She is making great progress and we are very proud of her. Below is a couple of pictures / videos of her daily regime.

Lilian in her standing frame. She is an expert in emptying her bowl in seconds and if mummy doesn't pickup the toys from the floor she will start putting the bowl on her head.

 

Push ups on the pilates ball



Arm stretches and sit ups on the pilates ball



Tummy time with little brother Oskar

Lilian is an expert in rolling and pulling off her socks and shoes. She likes rolling over to the CD shelf and disorganising daddy's CD.

Standing exercise with auntie Vibeke