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.

Nose feeding tube swapped for a tummy version

Lilian went into hospital to have her nose feeding tube swapped for a tummy version. Originally only a 24 hour visit. Lilian became extremely ill and spent  few days on intensive care.

Wednesday:

Went into hospital and got ready for surgery in the morning. Lilian was a good girl and it was only mummy (who stayed overnight) that caused trouble. She thought the emergency cord in the toilet was the light switch.

Thursday: Lilian had surgery in the morning. She was moved to Intensive care afterwards and given morphine to settle.

Friday: Thursday evening / early Friday morning Lilian got a very high heart rate (218) and fever (39.4). They did loads of tests to find out the cause. Lilian impressed the doctors by showing how quick she was. All the doctors where gather around her bed and when they all looked she decided to pull out her nose tube in front of them. I am sure she had a little grin on her face when she did it

Saturday. Lilian was better and moved back to the ward.


Sunday: Lilian was giving the nurses a hard time, she kept pulling her canola out. Reason she got her hand wrapped.

Monday: We finally got her home
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Lilian dressed up for her home coming party.. All cool in her sock trainers and her sticky toy on her head.

Tummy Time

Lilian rolling onto her tummy (with the help of mummy). Video recorded the day before her g tube surgery.

Sticky Fingers

It was Lilian's Grandpas (my Dad) 60th birthday party on Sunday. We all whisked him off to a restaurant in London called Sticky Fingers that is owned by the Rolling Stones bass player Bill Wyman. He and Grandma then went to see a show in the West End and stayed overnight in a very swanky hotel.

Lilian was a very good girl and enjoyed herself very much. She must be used to her parents record collection by now as the 60s rock and roll in the restaurant didn't phase her at all. We only had one costume change during the day too which was good going as I think Lilian is going through her Madonna phase and wants to wear at least 5 outfits a day at the moment.

Birthday boy, his Mummy (Granny) and Lilian.

Lilian thought Sticky Fingers was literal and proceeded to get very sticky fingers using the left overs of my chocolate brownie pudding.

Uncle Stuart gets grumpy when he's not the centre of attention.

Photo Session at the Hospital

We had an appointment with the dermatologist team at Kings, they needed to take a look at some small lumps on Lilian's scalp. They decided to take a sample when the g-tube surgery is performed and we will then find out what it is. Since no one has come across it before we where asked to go and see the medical photographer and get some photos taken. Mummy couldn't help sneaking in a few personal photos and we ending up getting professional photos of mummy and Grandma taken. Here'a couple of pics of Grandma.

Story Time

Lilian's danish cousins Anton and Tobias has given her some brilliant new baby touch books. Lilian loves them and she is getting really good at turning the pages and grabbing onto anything she can get hold off.

big mouth strikes again

Lilian has started to speak! Well, make a funny noise that sounds like Daddy at least. She responds to you like she's trying to convey her thoughts on how tonight's episode of Eastenders was both a telling tale of gritty life in the East of London interposed with some witty banter and good humour.

Here's a video we captured with Mette's fancy pants new mobile phone. 

the big lunch...sort of

Lilian went to visit Anabelle today; of course us parents went along too. We were meant to go to a "Big Lunch" on a nearby street. But as none of us have been to a Big Lunch before we got a bit lost and confused and hurried past opting to go to the pub instead (no bad choice). This is Lilian's first time in a pub and even though Mummy made her wear a massive hat she enjoyed herself thoroughly as did Daddy who got to meet Anabelle's Mum Ida and Dad Daniel for the first time.

Apparently Lilian is going to show Anabelle and Ida around the aquarium at the Horniman museum in the near future. She is an expert after all.

daddy hearts cycling

A couple of weekends ago I cycled from London to Brighton in aid of the British Heart Foundation and managed to raise £661.28. It was a great day even though I got a bit sun burned whilst waiting for Stuart (my big brother) to turn up. Lilian was born with a heart condition that she's still fighting to keep under control so I thought it was apt to combine helping Lilian and my love of odd looking shorts.

it's all about the smiles

Lilian is getting better at the smiling thing. She loves to smile at about 5am when she gets up. i think she's laughing at mummy and daddy as they probably look a bit worse for wear at that time in the morning. she enjoys herself though. i think daddy teaching Lilian to stick her tongue out has stuck though as if she doesn't fancy a smile she poke her tongue out instead. Lilian is also a great talker and can often be found chatting away in her own imitable way.

hello world!

hello everyone. my name is lilian and i rule my world from my arne jacobsen rip off green chair. this is my first blog and i'm six months old already. must get better at the technology thing. anyway must go because i have to eat/sleep/poo/cry now. more soon.