Costello Conference

We went to the Costello / CFC Conference at the Hilton Northampton hotel. We had a lovely time and it was great to gain some new knowledge and meet other families. If you want to find out more about Costello Syndrome and how to manage poor feeding issues you can watch the recording from the conference by clicking on the links above.

Wednesday: We had an evening get together meal at the Hotel. Lilian tried blue cheese on biscuits for the first time and she liked it. Grandma was on the phone during dinner and Lilian decided to copy grandma and use her blue cheese biscuit as a telephone. 

Wednesday:  After a lovely dinner Lilian and Oskar walks back to our room with the help of grandma and daddy.

Thursday: Lilian enjoying her big bed 

Thursday: The conference was too much fun for Oskar and a sleep with grandad in reception was needed.

                                                                              

Thursday: Oskar and Lilian getting ready for a swim in the hotel pool. This was Oskar’s first time swimming so a big day for him.

Thursday: Lilian in the pool with daddy

Thursday: All of us having fun at the party

Thursday: Lilian making new friends

Thursday: Lilian making friends with Erik and Samson

Thursday: Lilian and her new Swedish friend Erik

Friday: We all went to a fun park near the hotel. Lilian was very tired after her Halloween party so she slept in the pushchair most of the time

Friday: Lilian and mummy on a ride. Lilian enjoyed it but mummy got a bit dizzy and needed help getting of it.

New play group in Dulwich Park

Mette found a new play group in the old ground keepers cottage in Dulwich park. It's great fun and like being in a CBBC programme as the teacher sings and dances around the room with all the kids joining in. It's a group play session more than a "raid someone elses toybox" sort of thing which is brilliant as it gets everyone involved. We played on african drums, did the limbo, sang some songs and had a dance. Lilian even played on the steel pan. Plus it's on a Saturday so I get to go too.

Pictures of Lilian and her little brother

Lilian 19 months and Oskar 6 weeks



Lilian 19 months and Oskar 6 weeks



Lilian 18 months and Oskar 4 weeks

Lilian 18 months and Oskar 4 weeks

Lilian 18 months and Oskar 3 weeks

Lilian 18 months and Oskar 1 day





New Skills

Lilian can now go from lying to sitting on her wedge. We have been practising this skill for a couple of months now so its a great achievement. Well done Lilian :-)

She has also learnt to point with her left hand.

Exercise

Lilian has been doing daily physio exercises since she was 3 months old. She is making great progress and we are very proud of her. Below is a couple of pictures / videos of her daily regime.

Lilian in her standing frame. She is an expert in emptying her bowl in seconds and if mummy doesn't pickup the toys from the floor she will start putting the bowl on her head.

 

Push ups on the pilates ball



Arm stretches and sit ups on the pilates ball



Tummy time with little brother Oskar

Lilian is an expert in rolling and pulling off her socks and shoes. She likes rolling over to the CD shelf and disorganising daddy's CD.

Standing exercise with auntie Vibeke



Lilian has a little brother!

On Wednesday the 1st June at 1102 Mette gave birth to Oskar Lukas Grinnall. Oskar was born by an elective c-section at a gestation of 41 weeks. He weighed 4.7Kg (10.3lbs). Both Mette and Oskar are doing well and came home after just three days in hospital.

Big ears

Today we went to a fair for local people at Goose Green in East Dulwich. All the local shops and services had their own stall. There were a few fair ground rides for kiddies and a donkey ride. It was pretty nice. We met up with Ida, Daniel and Anabelle and went for a small lunch at a local Italian resturant, molto bello. Ida learnt how to pronounce gnocchi [nyoh-kee]. Lilian had a ride on my shoulders and thought my ears were great handles. I think she drew influence from the donkeys.

Fun in the park

Anabelle teaching Lilian 'Cool girls wear sunglasses'



Lilian first time on a swing, Anabelle is a bit of a speeder on the swing and you can see her flying past Lilian on your left



Lilian and mummy

Lilian and daddy

Pictures

We went to our local park with Ida and Anabelle. Its always nice to see them both and we had a great time in the park. On the picture we are feeding the ducks

Lilian in her pram.

Lilian relaxing in her pram

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Lilian having a sleep after doing her daily physio exercises with daddy

Anabelle's 1st birthday party. From left Lilian, Anabelle and Alice plus their mummy's

Lilian making daddy's birthday present.



Happy (corrected) birthday!

Happy birthday to Lilian who's corrected age is one today. Lilian was meant to come into the world on the 12th March last year (a day before Daddies birthday no less) but it was decided she make her appearance 9 weeks early so she turned up on the 8th January instead.

Happy birthday for the second time this year my darling little girl.

Scantastic

Both Mummy and Lilian went into hospital for scans today. Lilian had a CT scan on her brain and Mette had a 28 week scan of the 2nd baby.

Lilian's scan was to check if she has developed a chiari malformation which apparently can be caused as part of the Costello syndrome. It's performed every three months and this is the second one so far. Lilian was first on the list at 9am sharp. She had to lie very still in a doughnut shape machine for a few minutes whilst it hummed and burred all around her. Taking into account the Lilian was wide awake and is just over 1 year old she did very well indeed. I stood next to her shaking a rattle in a really heavy lead line jacket. We'll get the results in a few days/weeks.

Mette is having a scan of her bump every 3-4 weeks. This is partly to monitor progress of the new baby given Lilian's traumatic start in life but (probably) mostly to reassure both Mette and I. We are ultra nervous at the moment and still a little bit broken inside. Anything to help reassure us and take the pain away is good at the moment, The scan went well and the little fella (we already know it's a boy if you missed that one on Facebook) is doing okay. He's a good size and has lots of hands, feet, fingers and toes. I saw a glimpse his face front-on which was pretty cool as normally this things are in profile.

Say what!?

On Friday morning I took Lilian to have her third hearing test so far at Guy's Hospital in London Bridge. She passed with flying colours and appears to have no problems with her hearing. This is great news for Lilian as her developmental issues would only be compounded by a loss in her hearing. Go Lilian!

She has had an ear infection recently though. The Doctor tried to look in her left ear but she went crazy. Must still sting a bit. I'm off down to the local GP tomorrow to pick up some antibiotics to help clear it up.

We're going back in 3-4 months so they can test both ears in a clean state (without the infection) just to ensure her hearing is good in both ears.

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!