Tuesday, 29 October 2013

Thief!

We are lucky in that getting Ella to eat fruit and vegetables has never been an issue.  Not something I once thought I'd be saying after all her early feeding problems.

She's a little fruit bat who will choose blueberries or carrot sticks over cakes and biscuits any day. Her favourite fruit is bananas - she will eat one or two a day.  We always have a healthy banana pile on top of the fridge (and there's always a panic when we're running low!)...

So, tonight I was getting everything ready for Ella's tea - the fish fingers were in the oven, the potatoes boiling on the hob and the broccoli was sat on the work top waiting to be cooked. 

Or so I thought...


Our little veggie fiend had seen her prize, thieved the broccoli and was stood innocently munching it, wrapper still attached as Ian entered the kitchen.

She wouldn't be parted with it and wandered off into the living room crunching as she went...




We can only hope that Lucy is as easy to please with food as her sister.  She's had her first tastes and introduction to a spoon this past week.  I'll start baby led weaning once she's got the hand to mouth action sorted (it's so nearly there!).  She's definitely getting the hang of it now, can't wait to get her going properly...


I'll leave you with one last picture of our broccoli bandit...

What do you mean its only one of my 5-a-day?!

Happy Tuesday everyone xx




Tuesday, 15 October 2013

Down's syndrome awareness month, Day 15


Some say that social media is a bad thing. That we share too much of our lives and with too many people. Our connections and relationships with others there for all to see. Family, relatives, colleagues and acquaintances. The word 'friend' completely redefined.


I am lucky to also know another side to social media. Support, love, experience, sharing, advice, compassion and hope. Our wonderful online Down's syndrome community. 

Tonight I crept in to kiss sleeping Ella goodnight, as I often do. I watched her a while. Peaceful. Cuddling her toy cat under her arm and her muslin between her fingers. Rosebud lips and those amazing almond eyes. Knowing tonight how incredibly lucky I am. Memories and emotions flooding back.

Tonight, there are two mummies wishing, hoping and praying that their little girl survives yet another heart surgery tomorrow. I don't know them but due to social media and our amazing community, I along with dozens of others have been able to give my support. I hope that, although they are only words they have given some comfort, strength and hope to them at this heart breaking time when they might otherwise have felt very alone. 

You're in all our thoughts Amelia xx


Saturday, 12 October 2013

Downs Syndrome awareness month, day 12



Maybe one day I'll be able to write about when we were told Ella had Downs Syndrome. It was all wrong on many levels and a very negative picture of the future for my 18 hour old baby was painted. 

It was very clinical and unduly stressful (bear in mind that Ian and I have had training in 'breaking bad news' and have a good idea how it should be properly done). We were left with a stack of leaflets which were basically given to us to answer our questions instead of the health professionals. We felt very alone and the sense of 'unknown' was overwhelming.

I will never get those first days with Ella back and I still feel very cheated by the way our situation was dealt with. 

There is a great need to educate health professionals about DS today, not what they know from out dated books or experiences from past decades. This open letter by Noah's dad is a good start even though there is a long way to go...


Friday, 11 October 2013

Welcoming autumn

We've had some lovely weekend day trips to my mums recently.  Trying to squeeze as many days out in the garden as we can before the cold weather sets in.  It'll soon be time for warm clothes, hot chocolates, autumn colours, Frosty mornings, Halloween and (dared I say it) Christmas!


A couple of weeks ago, we watched the post harvest field behind my mums house get sown with next years crop.  We will have to wait and see what will grow, but Ella certainly enjoyed watching the tractor - 'tattor' - as it got closer and closer to the garden fence...




She's become a real little parrot recently and will make an attempt at almost any word you challenge her with.  She's mastered the 's' sound this past week which has opened up a whole new world of words to her.  We now get a lovely 'yes' with a clear 's' on the end.  She made me smile when I bought her a new pair of boots for the winter as she exclaimed 'boots' when I tried them on her. She's doing really well with her speech and tries very hard but I do find that I am the only one who understands the majority of what she says/signs.  Even Ian has to ask for interpretation and she does get frustrated if she's not being understood (especially when she's tired). But as she gets more practise at talking and learns new speech sounds, she is becoming more understandable.  She's now able to add in parts of words she has had to leave out before as she couldn't get her tongue around them.  

Anyway, the two most important words that any toddler learns have the most impact are 'more' and 'no' which she perfected the art of very early on!

We are now continuing to practise blowing through her mouth, which is having mixed results. This comes in useful for sounds such as 'v' and 'f'.  She's not great at it yet - all the air comes out her nose instead of her mouth but we keep trying.   






Lucy is doing fab and has turned into a really smiley baby and I'm enjoying having two girls a lot.  I haven't worried about her weight, feeding, routine etc - very different to the early months with Ella but I'll write more about that soon.  She's started teething but no signs of them appearing any time soon.  Not rolling but seems desperate to sit and loves being able to see whats going on - she's a very typical nosey little girl!


A couple of weeks later, we enjoyed a stroll in the woods behind my mums house.  Again the weather was lovely and we even managed to pick some of the last of the seasons blackberries.  Ella is still not great at walking for any distance and needs reassurance in new situations, especially outside.  She walked a short way but soon realised there were plenty of people she could 'hitch a lift' with!  She managed to explore the undergrowth, leaves, pine cones, trees and made friends with a few dogs along the way too...










Just as I am learning to be a mum to two little people, Ella is learning and adapting in her role as big sister as Lucy grows and becomes more alert and interactive.  She still loves holding her, frequently asking for a cuddle and then shoving you right away as soon as you've laid Lucy in her arms.  She's very independent and currently enjoys pointing out Lucy's features - 'eyes' (finger in eye) - 'hair' (bash on the head).  She also loves doing round and round the garden and this little piggy with her too.  Lucy doesn't always enjoy this - here are a few good pictures and a few outtakes too!...

Ella signing 'sister' (tap your nose twice with a bent index finger)


Love

No Lucy's were harmed in the taking of these pictures!

Happy weekend everyone xx









Wednesday, 9 October 2013

Down's Syndrome Awareness Month Day 9

Hayley from Downs Side Up has written an article for Special Needs Jungle. It's a great read and helps dispel some myths surrounding Down's Syndrome. 

Comments from others are generally well meaning but having been on the receiving end of some of them, they can actually do a lot of damage. 

I remember being in Boots with Ella when she was about 5 months old as she still had her NG tube (which was always a conversation starter). I got talking to a woman behind me in the queue and when I told her Ella had Down's Syndrome she said 'didn't you know you can test for that?' - her throw away comment implying that Ella shouldn't have been born. I don't remember my reply but the fact that a total stranger could not only think that, but say it to me upset me for a long time afterwards.

On the whole, we've been lucky and not had many negative comments so far. Most people treat Ella just as they do any other toddler, she's sociable, interested in the world around her and engages easily with others - I think people simply take their lead from her xx


Natty xx


Special Needs Jungle

Tuesday, 8 October 2013

Down's Syndrome Awareness Month, Day 8

A great video made by Verrado High School in response to Katy Perry's challenge - Which high school has the best 'ROAR'?... It made me smile :-)


Monday, 7 October 2013

Similar sisters xx

Down's syndrome awareness month, day 4... #DSAM2013

One of the worries I had when we were told that Ella had Down's syndrome was that she wouldn't look like us...

Although every person with Down's syndrome share certain features or characteristics with one another, they do not all look the same.

They closely resemble their mother, father or siblings just like anybody else. Since her birth I have been reminded many times how much she looks like her daddy (I'm pretty sure I played a part somewhere!).

There are now some similarities beginning to show themselves between Ella and Lucy. Sisters. Here they are at a similar age (about 6 weeks)...



Cheeky (pig) Monkey!

It seems we have a cheeky monkey on our hands...

On collecting Ella from nursery on Thursday, I was met with 'She's been a right cheeky monkey today!'. 'Uh-Oh' I thought! 

She had been looking at a picture of a dog with Lucy, her key worker. Lucy had asked Ella 'What is it?' knowing full well Ella can recognise a dog, do the sign and say the word.

'Pig!' Ella exclaimed (and signed) followed by putting her hand over her mouth and laughing mischievously. Even when one of the other children came over and signed 'Dog' to Ella she continued to say and sign 'pig', laughing all the while.

This little story from Ella's day made me smile for a couple of reasons. Not only is she beginning to show us all her cheeky sense of humour, I was also touched that the other children have been learning makaton and that they are able to communicate with Ella and therefore include her.

We were treated to Ella's new 'trick' this morning in her Speech Therapy session. She chose a rabbit and when asked what it was... you guessed it...

'Pig!' hahahaha.

Here is a picture of our little cheeky monkey xx



Saturday, 5 October 2013

Down's syndrome Awareness Month, day 5

Just in time to sneak today's in!... Phew...

Tonight I went to see one of my favourite musicals, 'Wicked'. Great performance, music and lyrics. Sat watching the show I began to notice the underlying themes... Difference, acceptance, inclusion...

These themes, for me, culminate in the infamous song 'Defying Gravity' (which you probably know if you've seen the musical or not!).

One line gets me every time I hear it and always makes me think of Ella xx




Thursday, 3 October 2013

Down's Syndrome Awareness Month, Day 3

Heath White tells the story of his family. How his view of 'perfection' was challenged after the arrival of his daughter Paisley. 



One fathers journey.

Tuesday, 1 October 2013

Down's Syndrome Awareness Month, Day 1

Keep calm... It's only Downs Syndrome awareness month! Happy October everyone, I'll try and share a picture, link, story or blog post each day this month.





Related Posts Plugin for WordPress, Blogger...