Saturday, 14 December 2013

A very Danish christmas

The tree is up and looking lovely. The cats are a bit too interested for my liking though.



Wednesday, 11 December 2013

Big girl cup

Lilian is now drinking from a cup without a straw. No more sippy cups or straws. Just normal kid sized cups of milk and juice thank you very much indeed.

Friday, 1 November 2013

Friday, 25 October 2013

Cider please!

Look what Lilian made at nursery today. She picked some apples at the orchard then pressed them to make some delicious juice for her breakfast. What a clever girl. Maybe she could knock me up some cider next week!


Monday, 21 October 2013

Helpful little brother

I often have Oskar with me when Lilian gets home from nursery. He loves helping me out and carrying Lilian's school bag for me.


Sunday, 6 October 2013

Too much milk the night before

I think Oskar drank too much milk last night and is feeling a bit worse for it this morning.



Saturday, 7 September 2013

Fun park!

A family trip to a great fun park today. Smiles all around.






Hey four eyes!

Lilian was diagnosed with +7 in each eye at a recent eye test. They prescribed her with +4 glasses which we collected from the shops today. We were worried she woulnd't like to wear them. The pair opted for is super light and made from a bendy plastic and titanium. They weigh almost nothing. If dropped or bent they won't break. Great for kids. In pink too. The best bit is Lilian doesn't mind wearing them at all. And she looks super cute to boot.



Monday, 12 August 2013

Lilian's first Danish hospital appointment

Lilian and I had to try and get our point across to the Danish doctor today at her first hospital appointment. Mette was at work so it was just Daddy and Lilian on our own. Just a regular scan nothing serious. It was fine though as they speak better English than some English people! The great thing is we arrived ten minutes early, got seen almost straight away and were out five minutes later. No messing about with late schedules etc. The last one of these appointments in our busy London hospital took about four hours or so. Stuck in boring waiting rooms with moody kids and moody parents. Such a breath of fresh air!

Tuesday, 6 August 2013

First day of Danish nursery for Lilian

The big day has arrived; Lilian is starting her new nursery!

She has a taxi collect her at 0700 every morning and they drop her home again at around 1600 in the afternoon. A long day for sure but she does get a good rest in her crib that's outside winter or summer.


The nursery is fantastic. She'll receive therapy in speech, phyiso and OT from the onsite specialists. Plus all the other fun stuff kids get to do at nursery. Trips out to the playground, the beach, maybe the harbor to see some ships and sailors, even the zoo sometimes. It's full on and never boring. Her class is pretty small with just five kids, two trained teachers and a student teacher. It's a nursery for kids with special needs so it's all setup for everything they need. We love it and are so happy she got a place.

Sunday, 4 August 2013

Swimming


We've started to take Lilian and Oskar to the local pool for a short half hour swim and splash session. It's fun for us all. Oskar was very nervous at first but soon got over his fear. Lilian loves it. They both get super tired afterwards too which is a bonus for tired parents!

Friday, 2 August 2013

New milestones met since moving to Denmark


We've been here for just over a month or so now. In this short time Lilian has thrived so much. She has achieved the following:

1/ Pretty much potty trained. She rarely has a wet nappy and uses signs to ask to go to the potty.
2/ She broke to 10kg weight barrier!
3/ She sleeps in her own bedroom (a first since birth) and nearly through the night too.
4/ Most of her daily fluids are now via a zippy cup and not via the mouth syringe method.
5/ We've not plugged in her tummy tube for over a week.

!!!High five to Lilian!!!

Saturday, 20 July 2013

Morfar

Lilian enjoying some garden time with her Morfar (mother's father in Danish).


Friday, 12 July 2013

They're here!

The cats arrived from England today. Lilian loves Derek and Clive so much. She was super excited to see them again.


Thursday, 11 July 2013

Down on the farm


Mette's uncle has a farm that we visited today. He rears cows. The kids loved it. Oskar was especially happy about seeing all the tractors and farm machinery.






Tuesday, 9 July 2013

Being cheeky!

I think somebody is playing tricks on me!


Living by the woods

Countryside living affords you such lovely scenic walks and bike rides. We took the kids for a ride through the woods next to our house today. It's gorgeous. Plus they slept like logs in the trailer.




Saturday, 6 July 2013

Life's a beach!


We have a beach with sand and lovely views about 10 minutes drive from our new Danish house. As our new town is on a fjord we have access to lots of water activities. I think the kids are going to enjoy living here. Plus people get home from work at about 4 in the afternoon so we can go to the beach for a swim and maybe a BBQ during the week instead of just the weekends. Lovely jubbly.




Thursday, 4 July 2013

Monday, 1 July 2013

New kiddie transport for the Danish roads

As we only have one car for the moment we need a way to transport both kids short distances at speed. Denmark is covered in cycle paths that are separated from the roads so we went with a child trailer that attaches to a bicycle. It's pretty heavy going with both Lilian and Oskar but they seems to enjoy it.



Tuesday, 11 June 2013

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.

Wednesday, 29 May 2013

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.

Sunday, 26 May 2013

Thursday, 28 March 2013

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)