Moving to Denmark

Last August Mette and I visited a nursery that caters for children with special needs in her home town of Vejle in Denmark. We booked the visit just out of curiosity to see what services they could offer Lilian. At the time we were looking at properties to buy south of London. What we were shown blew our minds. We left Denmark with plans to live south of London cancelled and a new project of moving to Denmark instead.

In the UK Lilian has over twenty different medical teams dealing with her various issues. Some we see yearly (heart and growth), some quarterly (oncology and brain) but most are monthly and some are even weekly. It's hard work. Really hard work. It doesn't leave much time for the important stuff like enjoying family life. Working hours in the UK can be long and with the daily commute thrown in time to spend with family is often short lived. Mette and I also have to perform Lilian's therapies at home. Lilian's two main issues are her extreme lack of muscle strength (she is almost completely immobile and cannot walk) plus her lack of ability to feed (hence the tummy tube). Mette and I have to perform daily therapies to help this. Such as physio exercises and stretching. We also have to feed her via the tube and "train" her how to eat herself. This takes a few hours a day. It is extremely tiring and can be very upsetting for both Lilian and us. To help with the burden we have also funded private care for feeding, physio, occupational therapy and speech and language therapy. All this effort works okay but it's extremely hard work, doesn't leave much time for fun stuff and it disrupts our family life too much.

In Denmark most of these therapies would be catered for at Lilian's nursery. More than six hours a day five days a week. Their principle goal is to for the nursery to take the burden of the therapies away from the parents leaving us time to enjoy having a family life. It's an amazing attitude towards care and is such an amazing opportunity for our family we'd be stupid to turn it down. Being based in the picturesque town of Vejle which just so happens to be where Mette's family live is too good to be true.

The view from the rear of the rented flat in Vejle.

We sold our property in East Dulwich over Christmas. We then moved into the granny flat at my parents house. We've rented a three bed flat on an old farm in Vejle with the aim to buy something more substantial later in the year when we've settled into Danish life. Mette has secured a job at Lego working in business intelligence. I'm going to play house husband for a month or so then look at securing an IT role. We move in late June.

A lovely strong heart

Lilian met with her heart doctor at St Thomas' Hospial. This was a check-up on how her heart is doing with regards to the enlarged muscle and possible blockage. An ECG and ultrasound were performed. Thankfully her heart is maturing but the enlarged muscle isn't keeping pace and thus less of an issue. This is another piece of fantastic news and very welcome relief.

A lovely walk

Today we took a lovely walk with Jess the dog. The sun even came out to play.

Hanging about with Grandma

Looking cool with Grandma in the garden.

A new tube

Lilian has had her feeding tube for a while now. It's the kind that sticks out and has a tube always attached. This is a nuisance and when kids get older can be dangerous as it can get caught or pulled very easily. Even though Lilian is feeding a lot better now a days she is still dependant on the tube. We decided to "upgrade" it for a more hidden version that only has the tube attached when it's required. Otherwise there is just a plastic plug protruding from her tummy. It's a much neater system.

Unfortunately Lilian required a full operation to remove the old tube. This means the extremely risky general anaesthesia (GA). Thankfully Lilian has never had serious problems with GA in the past. She's very difficult to manage whilst under GA but her doctors have taken meticulous notes that we have copied for future reference. We pulled out the bunch of notes and handed them to her anaesthetist who was extremely surprised but equally thankful as they now had some key information that would make a big difference to how they dealt with Lilian.

All in all the operation took less than an hour and went very well. Lilian was managed successfully by her team and they only had a few problems with breathing that were soon overcome. Lilian woke up in her now typical grumpy mood and just wanted cuddles with Daddy. She stayed on the ward overnight and was soon sent home.

Lilian recovering from the operation

We were shown how the new tube works on the ward and it's actually very simple. You need to keep the site very clean and there are weekly maintenance tasks but overall we're very happy. It may also have a psychological effect on Lilian as is the tube isn't there all the time she may forget about it. Who knows. Watch this space.

Lilian's notes for Kings Hospital for 2013 only (she has a lot of shelf space in medical records)

Broken lens

Oskar got a bit inquisitive with the DSLR camera on the day we took the photos published before this. He accidentally smashed the lens! Ouch.

I've been on at Mette to get a prime lens for a while now. A perfect opportunity to visit Jessops. Thanks Oskar!

Here's a couple of snaps taken when Lilian was playing peekaboo with the new camera lens.

Lilian and Oskar laugh a lot

We're both super busy at the moment. Working on Lilian's therapies (good progress), keeping up with Oskar and trying to run a household. It's hard work! Here's some snaps of the two monkies having a laugh together last week.

Lilian in the news

Back when the London Olympics were about to start Lilian was asked to get involved in a challenge set by Guy's and St Thomas' NHS Foundation Trust to promote Speech and Language Therapies (SLT). Lililan's SLT therapist Lisa Pitts was involved in the organising and decided a torch relay between various children centres such as nurseries and clinics would be appropriate. Lilian had to take the torch from her nursery to a local primary school.

She and Mette had a great time. They even made it to a newsletter produced by the Royal College of Speech and Language Therapists! Two photos to boot. Cool.

I've attached the article if you fancy a quick read.

4th MRI in 2 years

Lilian had her 4th MRI scan in April to check if her hydrocephalus and Chiari malformation has gotten any worse. The scan went well and it showed that its not progressing and no intervention is needed.

Children with Costello Syndrome often likes to play tricks on the doctors and its not straight forward to give them anaesthetic.  We gave our hospital Lilian's notes from her previous anaesthetics and it all went quite smoothly. We had a bed on the ward after the scan but lilian was doing so well and she was sent home the same day.. way to go lilian..

Just woken up and a bit tired

hello, can I go home now

Lilian is a big girl now and no more baby beds in hospital.

How do I get the lid of with my hand wrapped in paper????????

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.