Breakfast Time

Lilian and Oskar having their breakfast

Lilian's new skills

Lilian practises her signing. She can sign sleep, cat, mummy, daddy, biscuit, ice cream and more. She can say cat and dadda

Getting good at using her index fingers

Posting toys are fun

Making music with little brother Oskar

Feeding Update

I have been intending to write an update on Lilian’s feeding progress for a long time but have been so busy and wasn't really sure where to start. It's been a bit of a roller coaster with loads of highs and lows but overall we are making progress. Initially Lilian was bottle/breastfed and she seemed to enjoy feeding. As she was so small from being three months premature she was never able to take enough volume and needed the tube to supplement her. With time she became tube dependent and stopped eating completely. She vomited multiple times a day and became oral aversive and would cry when seeing the bottle or being exposed to wet textures. We worked very hard with our OT and SLT on the sensory issues and eventually Lilian started to enjoy playing and touching food. This was done by firstly introducing wet or sticky toys as part of her play and then moving onto messy food play.

Lilian 5 months - enjoying her bottle

Lilian having some milk via the tube

We came to the point were Lilian loved food and would taste (lick) it but not eat anything. If you saw her in a restaurant you'd probably think she was a typical child just not a very hungry one. We decided to get help from the Graz net coaching team as we felt a bit stuck on what to do next.  We started the programme and we knew we had a long journey ahead of us. Lilian was 100% tube fed with nearly no oral skills. But we struggled with the net coaching programme. Every time we made progress Lilian became ill and we then had to start all over again. We felt a more intensive and hands on programme was needed to help us move on. The main problem we had was that Lilian insisted on feeding herself but she wasn't able to take enough volume. Lilian was also not drinking anything and for us to move forward we needed her to allow us to feed her. The hardest thing is that you cant put any pressure on Lilian because if you do you take 10 steps backwards. It has to be fun and she has to feel in control

The Graz net coaching team recommend we held play picnics as part of the food therapy program. Kids can do what they want with food. No intervention is allowed from parents. It's all about fun and exploring the different tastes and textures with no pressure on eating. If possible you should invite eating children to the picnic and serve the food on colourful dolls plates etc.

Another play picnic - no friends around so invited teddy

Lilian's friend Anabelle having fun at the play picnic

Lilian enjoying pretending to eat

Lilian licking / tasting her food

Lilian eating with her spoon

Deciding to go to Graz was one of the best things we have done. I don’t think people know how stressful and isolating it can be when you have a child that won’t eat. Eating is just one part of it but the worst thing for us was the tube feeding and constant vomiting that comes with it. For example she would vomit if you gave the milk to quick, she cried, had a cold, got upset, coughed, moved her around to quickly afterwards, you had to bring spare coats/hats etc every time you left the house in case she vomited after her feeds.

When we left Graz Lilian was still partly tube fed but we could now feed Lilian with a syringe and she would also open her mouth for food. Lilian opening her mouth for food was the best feeling ever. I had been working on this at home for months and she always turned her head when I attempted to offer her the spoon. The vomiting had also stopped by the reduction in the milk given via the tube. This meant more sleep for mummy and daddy no waking up a night and having to change the bed sheets because Lilian vomited during her feeds. Note: She is still fed on a machine overnight but we have reduced the volume and also mixing her formula with water.

When we came back from Graz Lilian would allow us to feed her when we went out to restaurants and family dinners (not at home). MDS at Graz thought the reason for this were that Lilian had a lot of memories about eating and went into her old ways when at home. So in the early days we took Lilian to coffee shops and cafeterias almost daily. I think Lilian watching other people eat plus the distraction of other people around her helped to encourage Lilian’s eating. Luckily we live in London and have everything on our door step. Also had my mum staying to help us out.

About 3 weeks after coming back from Graz Lilian suddenly allowed us to feed her all the time regardless of where we were. She would open her mouth at each mealtime and just eat and eat. Her oral skills were still poor and most of the food came back out again but she was getting loads of practise. We were so happy and excited.

Unfortunately a couple of days later she caught a vomiting bug (we all had it) it took Lilian a very long time to get over it. She couldn’t keep any food in her (including water) and we worked with our dietitian on finding some milk she could tolerate. We were back to a 100 % tube fed child with zero oral intake and vomiting all the day long. We had to take two trips to A&E due to worries about dehydration. I know from the Costello support group that children find it very hard to recover from these sorts of bugs and it takes a long time to get back to normal. It took a couple of weeks to get her to tolerate her milk. By then she had lost a lot of weight and we needed to get her weight back up  before reducing the milk again.

When we eventually reduced Lilian's milk the interest in food did not increase and we missed the hands on therapy we had in Graz. After about 3 weeks of having decreased Lilian's milk I was about to give up and decided to increase her milk intake again to up her weight and also her energy levels so we could crack on with her physio. I was at a stage where I just had enough of spending so much time and effort on the feeding. So I offered her food when feeding Oskar and didn't worry too much about it. If she didn’t eat anything I would just give her a bit more with the tube. If she did eat something then I wouldn’t. Then for about 2 weeks ago she suddenly started to wanting to get fed again. See the video below

The next step is for Lilian to improve her oral skills to allow her to take more volume so we can reduce the tubefeeds even more and also get her to handle different textures and tastes. We are working with Graz, local SLT and dietitian on these steps. I will try and write a separate post on this topic. We are also far off from getting her to drink anything due to she wants to hold the cup herself and doesn’t bring it to the mouth if there is anything in the cup. More to follow.

A lot of people have asked me if I recommend going to the Graz notube clinic. It all depends on your child. We were lucky in a way that Lilian is in good health and have no other medical issues apart from the challenges that Costello Syndrome brings. What surprised me the most is that Lilian was 100% tube fed for about 14 months and since starting to take food orally she never had any problems with swallowing. Her problem seems to be lack of practice and good oral skills. So going to Graz was the best thing we did for Lilian and for us. I am sure she would have started to eat if we didn’t go to Graz as well but Graz just helped us fast-forward the process. If you haven’t got the time or money to go to Graz there are still loads of things you can do at home. The parents support group named tube fed kids deserve to eat was a great resource to me and you can find lots of advice from other parents

We always include Lilian in our mealtimes

Lilian's danish cousins showing how to eat cheese puffs. They are perfect role models and very keen to show her how its done

Dummy full of cream yum yum

Eating is fun

We have been working on getting Lilian to close her mouth. Licorice did the trick as seen on the photo

A big thank you to Lilian's brother Oskar who is the perfect role model for Lilian. They are both partners in crime when it comes to throwing spoons / food on the floor. A big thank you to grandma (mormor) who has spent many weeks working with Lilian on her feeding and making up all sorts of food for her to try.

Lilian licking her sweets while standing in her standing frame. she is female after all and very good at multi tasking..

Touching from a distance

Sorry everyone. We've been very lackadaisical about updating the blog for the last few weeks. We're both as busy as ever and it just fell to the side a bit.

We've had some lovely comments from people so thought it'd be nice to put up a guestbook page for all to see. The link is on the left. So go on and say something.

Lots has been going on. Lilian's feeding and physio are coming on great guns. Yesterday Mette said Lilian is eating more than Oskar as some mealtimes! Her new private physio is really impressed with her. All the exercises Lilian has been precrisbed are definitley doing the trick. Mette is going back to work soon so we're busy trying to work out child care, nannies and nursery! Headache.

More detailed posts about all the good and bad stuff will follow shortly...I promise.

New (extra) physio

We took Lilian to her new physio today. This is the place that Eva from the Austrian feeding clinic recommended to us. It's called Kiki's Children's Clinic and is about 10 minutes drive away in Clapham.

Lilian is still very behind with her mobility. She can roll from front to back and walk if aided by one of us. She has strong legs and a good grip but her shoulders and arms are weak. She never went through the tummy time period because the tummy tube hurt her so she stayed on her back. This has led to Lilian not learning how to get from lying to sitting and then onto standing.

The aim of the clinic is to get her physio therapy into a higher gear by going a least once a week. At the minute she has a home visit once a month from the NHS. It's not cheap but we're get cover by my work health insurance which is great.

Curved spine

Lilian went to see the Chiropractor at hospital today. Because Lilian isn't so mobile (yet) she tends to have weak tummy muscles which can mean she leans too much. They did X-rays and all sorts of other tests. The result of the check-up was positive. She does have a slight curve but it's not very bad and can be corrected with exercise and time. Plus as Lilian becomes more mobile it'll build muscles which in turn will improve her posture.

Lilian's 2nd birthday

Lilian had her second birthday this Sunday the 8th. She happens to share the day with Mr David Bowie (my hero) and some old rockabilly fella called Evlis.

A Danish cake made by Mor mor and a chocolate number whipped up by Daddy.

We spent the day at Lilian's Grandparents house. Her Autine Hannah cooked a delicious roast for lunch. All the family came over and it was lovely. Lilian ate loads of food in her own way. Got loads of lovely pressies and was happily tired when we got home again.

All the photos can be viewed here link.

Heart fix

Lilian had a heart scan yesterday (for her heart defect since birth) and they don't want to see her again for 18 months! Yay Lilian!

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.