Showing posts with label designer genes. Show all posts
Showing posts with label designer genes. Show all posts

Tuesday, 13 November 2012

Christmas come early...

Sunday was probably one of the last nice days of the year.  Blue skies, sunshine, crisp air - lots of layers needed.  Ella spent some time in her new wellies playing with the fallen leaves in the garden and watching with amusement as Granny and I kicked them up in the air....



And as the leaves fall, evenings darken earlier and the weather cools it can only mean one thing... 

...Christmas is on its way!

You may have noticed that the Christmas adverts have already begun to fill the commercial breaks and the shops are full of Christmas fayre.  And this may have passed you by (and that's kind of the point) but this year one retailer is demonstrating inclusion at it's best.  

Marks and Spencer have included 4 year old Seb White in their Christmas ad campaign.  He is not singled out, used as a clever marketing ploy by M & S or given extra camera time - in fact - blink and you miss him.  

He is cool, one of the gang, seriously gorgeous and just happens to have Down's Syndrome....

Seb's picture is also being used in 300 M & S stores so have a look for him next time you're in there.  

Using a child with Down's syndrome in such a high profile campaign may not seem like a big deal to some people, but it is. I don't know Seb but I feel incredibly proud and emotional whenever I see the ad on TV.  He is representing a whole community of children with all sorts of disabilities and showing the nation that he is more alike other children than different.  Perhaps the first step in breaking down the misconceptions held by so many.

It's not the first time Down's syndrome (or other disabilities) has been portrayed in advertising, but for Seb to feature in such a high profile Christmas campaign (in place of Marks and Spencer's usual celebrity filled festive adverts) for such a well known company is pretty much unheard of.

Through the use of social networking sites, blogging, the media, support groups, charities and more the Down's Syndrome community is thriving.  Parents and advocates everywhere are raising awareness, promoting positivity and telling their stories.  And the message that this advert is helping to convey is that our children deserve the same chances as other children. 

To be seen 
To be heard 
To be understood
To be included...
...in every part of our society.  There is still a long way to go but it's a great start by Seb, his mum and Marks and Spencers.   

Thanks to Seb, for those of us with someone in our lives who has that extra special something (whatever that may be), Christmas has most certainly come a little early this year.

Happy Tuesday everyone xx


Seb's mum Caroline has a Facebook page where you can keep up-to-date with his success!
Down's Syndrome - Raising Awareness and Shifting Attitudes





Wednesday, 15 August 2012

Messy business...

It's taken some time but Ella has recently started taking an interest in feeding herself.  At the moment, this lasts for two to three spoonfuls and then she reverts to using her hands.  Which is all well and good, unless you're attempting to eat porridge... mealtimes can get rather messy!...






Who said you can't eat porridge with your hands?...






It still amazes me how far Ella has come with her feeding.  We struggled from the very start.   We are here today via NG tube, oral aversion, open heart surgery and a gastrostomy.  She will get there, she's come so far already!  

Most amazingly development wise, she can now drink from a straw.  She never sucked as a baby and it's a really important skill required for speech and language development in all children (uses and tones the muscles used for speech).  I was up for the challenge of teaching her this skill and decided to introduce her to it and see how we got on.  

No teaching required.  She just put it in her mouth and knew what to do with it (along with some gentle squeezing of the carton by Aunty Vicky to start with). 

We will never get tired of watching her do this - there was a lot of heartache at the very beginning over not being able to breastfeed and the struggle with bottle feeding that led to her being NG fed...


In other news, Ella continues to communicate well and I find myself adding new signs and words to her display every week.  Her most recent sign is 'baby/doll' which I didn't know she knew.  We got home from nursery and she pointed at her doll and did the sign for 'baby'...

I have also spent an entire evening cutting and laminating the 'see and learn' picture card resources.  We have started using them with the suggested activities and so far so good...


She's also been standing unsupported for a few seconds, still loves being on her trike and has been having fun with herself the mirror...






We've also been witnessing a new style of 'crawling' recently...

And a lot of 'oooops'....

Thanks for reading xx





Saturday, 12 May 2012

One year on...

(Just a warning. This post contains some post-operative pictures of Ella).


A year ago today we handed over our precious baby girl to the heart surgeons at Alder Hey.

We found out about her heart defect when she was a day old and I have to say it hit me much harder than the Down's Syndrome diagnosis did.  I suddenly felt incredibly guilty that we hadn't known anything prenatally.





If we had known before Ella was born about the Down's Syndrome, the midwife and doctors would have been aware that a heart defect could be present. Or, we could have found out if there was a problem with her heart prenatally.  I feel lucky that her heart problem was picked up early and that the defect she had was not life threatening in those first few minutes, hours or days after her birth. It could have been so different.

It was the heart defect that contributed to Ella's poor feeding and failure to gain weight.  This led to her needing a nasogastric tube for feeding (and later her gastrostomy). 


The experience of her surgery is still something I find hard to put into words and remembering the week she was in hospital is still upsetting for me.  To sum it up in one sentence it seems that, as parents our hearts have to be broken in order to get our babies hearts mended. 

So, the following is taken from the Ella's story page which is the best I can do for now...

"On May 12th 2011 at Alder Hey Hospital, Ella underwent open heart surgery to repair her VSD (Ventricular Septal Defect - hole between the wall of the ventricles). Her op had been cancelled twice before, so it was third time lucky.  

I don't think I can explain how I felt, it's not something that is easily put into words. For the most part, survival mode kicked in and I pretty much ran on autopilot for the week she was in hospital.  

Even being a nurse and working in a clincial environment, nothing prepares you for seeing your own child, so small and vulnerable,ventilated and hooked up to noisy machines.  I remember wanting to run away but knowing I could never do that to her.





could manage about ten minutes at a time sitting and watching her.  I knew she needed time to get better, but waiting was the hardest thing to do.  I just wanted to scoop her up and cuddle her but I couldn't even do that.  She was on ITU for two days (instead of just one) after a minor hitch that set her back 24hrs.  Considering she had  just had major surgery, she came through it very well.  

After her 2 days on ITU she was transferred to the ward and was discharged on day 6 post surgery.  She has a 3-4 inch scar down her chest and a residual tricuspid valve leak which is being monitored.  She has more energy now and has most definitely recovered much quicker than her mummy and daddy!"


We last went for a heart scan just before Christmas.  We are told her heart is healing well post surgery and we go back again in August.  Hopefully, she will never need any more treatment or surgery but it will always be a worry that will forever stay at the back of my mind. That's what being a mum is about!

As this is also international nurses day, it would seem appropriate to add in a big 'thank you' to the nurses at Alder Hey who looked after Ella and us so well.  They made the ITU experience a lot less stressful for us (bearing in mind we knew more than most parents due to our medical backgrounds) and we always knew Ella was in safe hands.  They do a wonderful job looking after very sick and vulnerable children, it's a job I know I could never do.  Thank you.




To my gorgeous, happy, healthy, bright little Ella...Here's to celebrating many more 'heart days' xx

Monday, 7 May 2012

Moving on

Empty drawers, packed boxes, charity shop piles.  Moving house isn't just a case of packing everything and taking it with you, it's a time to de-clutter, organise and sort.  Just wish there was a Mary Poppins way to go about it!...


Sorting through our (many and not always purposeful) possessions has not just been a practical and actual task.  It has allowed me the chance to reconnect objects, pictures and sentimental items with the memories, people and emotions that are attached to them.  The items that surround me everyday but that I no longer 'see'.  


I had forgotten that I started a memory box for Ella - scan pictures, hospital bands, new baby cards. I added a few new things to it - feeding cups, a feeding tube and first birthday cards.  I re-read all the cards, unfolded and re-folded the littlest Hungry Caterpillar sleepsuit and remembered her all tiny in her cot on special care at the beginning of our uncertain journey.  It was hard looking back but feel very proud of what Ella and we have achieved over the last 18 months....












Ella is, for now oblivious to the move.  The addition of packed boxes to the living room has caused some interest but we will wait and see how the actual move will impact on her.  I am sure she will be fine.  


She's still loving her books, now signs 'phone', 'star' (once or twice accompanied by 'tar'!), bath and more and she tries to do book (which looks a lot like more...).  Still not worked out what her other, consistent signs mean.  Oh and she's started shaking her head for 'no'!  Loves having people around and playing with her ball...









Happy Monday everyone.  I am off to fill some more boxes...xx





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