First time in Denmark and on a plane too!

We've just gotten back from a few days away in Denmark visiting the Viking half of our family. It was Lilian's first time over there (outside of the womb at least) and also her first time on a plane! This was our third attempt at getting over a trip out in the last few months. The previous two attempts were cancelled due to medical events. It was also out first holiday since Lilian arrived with us last January. We'd both had a couple of days off work here and there for relaxing but otherwise all our holiday was taken for hospital appointments. So much in fact that I've been negative with holiday since Feb last year. Only now am I in the positive again!

Oooh. The people look just like ants!

On the plane Lilian did us proud. A bit of noise when we got on-board but I think she didn't like the PA and the cabin crew trying to sell their commission tat. When we started to rumble down the strip and off into the blue she appeared to love it. Smiles came in plentiful. Banging on the window was pretty funny too. The only problem was I'm normally Mette's hand-hold-guy as she hates taking off and landing. She had to grab the seat for all she was worth this time around. When we broke cloud cover we saw that the whole of Denmark was covered in snow. A winter wonderland compared to rainy old London town. Only problem was I had my rain jacket and Mette's coat doesn't cover her pregnant belly very well. At least we had hats!

We stayed with Mette's big sister Vibeke and her husband Martin with boys Tobias and Anton. Lilian absolutely loved it. She had so much to watch and do. Nothing like at home as our two cats (Derek and Clive) just can't compare to two little boys under the age of 10. She had so much fun in fact she barely slept during the day and just sat around playing with toys and watching the boys do their thing.

Tobias did an excellent job looking after Lilian. She couldn't keep her eyes of him for long waiting for the next fun thing to do or watch.

Great friends!

Tobias and I got down to some serious snowman making activity and produced this masterpiece.

Hello I have potatoes for eyes.

Martin took Tobias and I to the woods behind the house for some serious sledging activity.

Offfff!

It was great to see all of the Danes again as they don't get to see Lilian as often as they'd like. We'll now stuck in the UK until the next baby arrives in May so we're aiming for a late Summer trip out again.

Great times.

Lilian and Dagmar say hello for the first time.

Hanne og Jan

Lis and Lilian chillaxing.

All the photos can be seen online here.

Ha ha hats! ha

Mette's been trying to load this video for ages but it kept failing so Daddy had to step in and sort it out. Lilian saves up all her laughs but when they come she keeps them coming!

Total roll over

Lilian chose to roll over onto her tummy all by herself today for the very first time ever. She's been okay at rolling over when we hold her by the hips but today was the first time she managed to get over all by herself. When she'd done it once she did it all afternoon!

A year already!

Lilian turned one on Saturday. Has it really been a year already. But then it seems like forever! I really can't remember life before Lilian arrived on the scene and nor can Mette.

Mette and I tried our best to put together a birthday party with all the UK family coming over for a buffet lunch and drinks. I think it went okay in the end even though we didn't even start to cook or prepare the house until 11 in the morning with everyone due to arrive at 1. Instead we choose to spend the morning curled up with our little darling enjoying the moment.

Mette ordered some choice food from the "Scandinavian Kitchen" so she could spice up the food with some traditional Danish fare. However, they messed up the delivery and instead we got a load of fishy food that was supposed to go to Aberdeen. Bit of a shame as Lilian missed out on her "Kagemand" which is a traditional Danish birthday cake for kids. Instead she made the British equivalent using a sponge cake and teddy bear tin. The result was...errr...tasty

Here's some choice photos from the day. I choose "The Very Hungry Caterpillar" as the theme but unfortunately they're weren't enough hats for Mette and I to wear! ha ha.

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The cake!

Erin and Mina help to blow out the candle 

The UK Family with hats on. 

The food 

Daddy telling Lilian a pretty good joke. 

 Look at the camera.

Mina helping Lilian open her pressies.

Lilian's first Christmas

Lilian opening her first Christmas present. It was a xylophone from Grandma and Grandpa.



Daddy and Lilian opening presents.



Grandma, mummy, Lilian and a Christmas pudding on fire

Granny's birthday cake. She turned 87 on Christmas day

More presents from the Danes which came via postman pat. The hat and present in the picture is from granddad (morfar) and Hanne.  

Breakfast Time

A few pictures of Lilian having her breakfast on a snowy Sunday morning. She has 1 teaspoon of puree for breakfast everyday. She doesn't swallow the puree just tastes it and then blows bubbles. The more mess the better



Lilian and daddy having a conversation over breakfast



Look at me I can hold onto the spoon without holding it



Lilian blowing bubbles

 

Lilian's first taste of snow

Picture of Lilian’s first time out in the snow.

Big sister

Lilian is going to be a big sister in May next year. Mette had her 12/13 week scan earlier this week at Kings. We're both super excited. Here are the results.

Visit from Denmark

Auntie Vibeke, uncle Martin and cousins Tobias & Anton came to visit us in London. On the Sunday we decided to go up in London Eye. Picture on the left is off Vibeke and Lilian having fun on the bus up to Waterloo.

On the Eye and nearly by the top. Both Anton and Lilian were tired by this point. It's a long journey to the top... We saw a couple of police boats with flashing lights on the Thames which the boys thought was very interesting.

The view from London Eye














On the Tuesday we went to our local playground. Lilian enjoyed her cuddles with auntie Vibeke and uncle Martin.

Lilian's first time on a slide. Uncle Martin and cousin Tobias shows her how its done.

Anton having fun at the playground.

Snapshot of Lilian's Diary

You migth be wondering what Lilian and mummy is up to everyday. She is an extremely busy girl and we don't have many days to relax. Poor daddy has to spent all his holidays going to appointments. Below is a snapshot of Lilian's diary.



20 Sept: Physio therapy appointment
21 Sept: Hospital Appointment - Ultrasound to check for cancer in pelvis and abdominal
22 Sept: Dietitian appointment
23 Sept: Cranio therapy
24 Sept: Hospital Appointment - Heart Scan
25 Sept: Danish mummy meeting
26 Sept: Olivia 1 year birthday party
27 Sept: Grandma Lis is over from Denmark this week so a day of fun.
28 Sept: Physio Therapy session for babies with special needs
29 Sept: Hospital appointment - Check feeding tube healed OK
30 Sept: First aid course
1st Oct: KIDS Playgroup - playgroup for children with special needs.
2nd-5th Oct : Visit from Denmark - Uncle Martin, auntie Vibeke plus Tobias and Anton
6h Oct: Occupational therapy appointment
7 Oct: Physio therapy appointment
8 Oct: Hospital Appointment -  Endocrinology
9 Oct: Visit uncle Stuart and auntie Sarah in Surbiton
10 Oct: Marie Louise birthday party but had to cancel - Sorry Malou
11 Oct: OFF
12 Oct: Hospital appointment - pediatric doctor. Found out Lilian has too much water on her brain and MRI scan needed to find out how serious it is.
13 Oct: Cranio therapy
14 Oct: Hospital appointment to discuss cancer risks at Great Ormand Street. Lilian has a high fever and heart rate and we get admitted immediately.
15,16,17 Oct: Recovering at home
18 Oct: Speech and Language and Occupational therapy appointment
19 Oct: Dietitian appointment
20 Oct: OFF
21 Oct: Hospital Appointment - Dermatology
22 Oct: KIDS Playgroup - Playgroup for children with special needs
23-24 Oct: First weekend this month with no plans but Neil was working
25 Oct: Saw Ida and Anabelle for the first time in ages. We went to the ceramic cafe in Dulwich and enjoyed being creative. I also tried Ida's cupcakes for the first time and they were divine.



Lilian and mummy



Ida and the lovely Anabelle

IRM

Because Lilian was delivered by emergency c-section three months early she had more than her fair share of difficulties, one of which was not breathing for over 6 minutes. The medical staff were concerned about damage to her brain and suggested she have an MRI (Magnetic Resonance Imaging) as soon as she was stable enough to be removed from the intensive care unit for a couple of hours.

A few weeks later whilst on holiday at St Thomas' hospital having her kidney cared for Lilian was given her first MRI scan. She was still very little and didn't move about too much so they gave her the scan without anaesthetics (you have to be absolutely still otherwise the image blurs). I was given the honour of sitting in the MRI room with her whilst they performed the scan. It's a horrible experience and is really really noisy. I was wearing massive ear phones and I could easily still hear the grinding/pumping/echoing/pulsating noise quite clearly. I'm surprised Lilian slept throughout but she did and it was all over in about 30 minutes. Mette was a bag of nerves outside in the waiting rooms but the nurses were very gentle.

The results took a few weeks but came back with only small issues that should be looked at again when Lilian turns four. However this all happened before Lilian was diagnosed with Costello Syndrome which introduces its own reasons to have frequent MRI scans. More on this in the future once we get our heads around it all. We went for an MRI today but as Lilian has had a respitiroty infection in the last six weeks she can't go under elective anaesthetics so we've rescheduled for early December.

I'm a fan of Serge Gainsbourg and it so happened that his daughter Charlotte realeased a single called IRM (french for MRI) during the same time Lilian had her first scan. Charlotte had to have MRI scans after she was involved in a car crash. The song, which I've linked to below, is intertwined with the sort of noise the MRI scan emits which I mentioned earlier. I bought the album for Lilian on vinyl so she can remember how magnetic her personality was when she was a little baby.

Lip smackingly good times

Lilian's Mor-mor (translated: "Mum's-Mum" otherwise known as Lis) recently spent a good many days visiting us all here in rainy London. Whilst spending some quality time with Lilian on her lap Lis taught her Granddaughter some bad habits such as how to smack her lips. As a father I'm outraged but as it was super cool and Lilian enjoyed it here's a video :-)

Afternoon tea at the House of Lords

As part of the Costello Conference we were very privileged to be invited to the House of Lords to celebrate the launch of the RASopathy Network. It's been discovered that a collection of syndromes, such as Costello (what Lilian has) cardio-facio-cutaneous and Noonans all share the same genetic pathway. By grouping the syndromes together in research and pooling resources more progress can be made into fully understanding them. 

Our fancy pants invites to the House of Lords.

On Friday morning everyone got dressed up in "smart casual", tried to eat breakfast without getting eggs down their fronts and then jumped on board a couple of coaches. The traffic into London was okay and we went via Knightsbridge which the non residents of London enjoyed. On arrival at the the Black Rod Gate entrance to Westminster we were ushered through security at a slower pace than the airport - ultra secure! We also found out that Westminster was closed to the public for the day and we were all special guests.

Waiting...still waiting....raining...got there

We all met in Westminster Hall (built 1097) and waited for our tour guides. As Lilian was in her pram and we were special-enough guests we were taken around the back route to get up the stairs at the back of the Hall. We got to see the real inner workings of Parliament and what terrible taste they have in carpet and wallpaper.

Apparently a good tennis court for the King.

The tour itself was rather good and as we were one of the few groups to be there waiting was kept to a minimum (Mette went with her mum a while back and said it was really busy). Lilian was very good throughout and either slept or was carried by me. However she showed her punk ethic and performed a dirty protest when we were shown the House of Commons. I doubt many people can claim to have had their nappies changed behind the Speaker Chair! And no we didn't out the dirty nappy in the dispatches box. Good idea though.

Just behind here to the right.

The reception itself was excellent and it was the best afternoon tea I ever had. Lovely the tiny cakes, scones and sandwiches. It was very interesting to hear all the different speeches and it gives us hope that centralized / specialised care for rare syndromes might exist in the future and that there is as possibility of treatments in the future. 

The picture on the left is of Lilian and her Australia friend Nicola plus her mum and dad. 

The reception was held in the Cholmondeley Room in the House of Lords. If you look at Westminster from the South side of the river you can see two "tents". One with a green striped roof to represent the Commons and a red one for the Lords; we were in the red one.

The two tents.

It was strange to be this side of the fence. Lilian regularly attends the hospital (St Thomas') that's opposite Westminster. Mette had to stay a couple of nights there herself and had a room that overlooked the scene we were attending.

St Thomas' in the background

Good view.

 

Pictures of Lilian without her NG Tube

Lilian and her Danish cousin Josefine. Since the NG Tube has gone Lilian has started to smile a lot more. We get big smiles with gums first thing in the morning and she has started to giggle when something fun happens.
 
 
 
 
 
 
 
 
 
 
 
 
 

Lilian lying in her bed. Since the NG Tube has gone she is a lot more interested in exploring and eating her fingers and toys.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Lilian having fun with grandma
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Lilian and daddy relaxing in the couch . She is wearing her new outfit from auntie Vibeke.

Lilian laughing at mummy not knowing how to work the camera.

 
 
 
 
 
 
 
 
 

 

 

Lilian is dressed up for going to the woods with mummy and daddy. The outfit is from auntie Vibeke.

Picture of Mummy, daddy and Lilian on the train up to London Bridge.

Lilian loves going on the train its soooooo exciting. We tried to get her to look at the camera but she was way too busy looking at other things and she did not have time to pose for the camera.