Wednesday, 22 June 2016

Heart MOT

It's been 5 years since Ella had her heart surgery at Alder Hey. 


We celebrated her 'heart day' just a few weeks ago with a bit of quiet reflection, lots of thankfulness and of course, cake...


Today we went back for her routine cardiac follow up appointment at Manchester Children's Hospital. It's been nearly 2 years since she last had a check up or 'heart MOT'.  

Although she's very well in herself and not showing any outward signs that her heart is anything but happy, it's always the appointment that I worry about the most. You just can't take everything being well for granted until the professionals have checked what's going on on the inside. 

We worry about her heart function, whether it's coping with her growth and growing with her. We worry about her heart's electrical function and also about the pressures in her heart, arteries and vessels. We are lucky that she isn't on any heart medications at all but I guess there is again a worry that she may need to be in the future. 

Ella was a little superstar today, considering she won't have remembered the last time she was there. She made no fuss, lay herself on the bed and stayed really still while the doctor performed the ultrasound of her heart (ECHO), which was apparently 'tickly'. 

There was no requirement for dvd/phone distraction or constant supply of chocolate buttons like at the last appointment! She was equally as good during her ECG and even removed the stickers herself (ouch).

Thankfully I can report that after her tests today, all is well and we have been asked to go back again in 18months time. Our little warrior has a happy and healthy heart. 

*big sigh of relief*



Happy Wednesday everyone xx

Friday, 8 April 2016

Heart & Sold Art exhibition

We have recently spent two lovely Saturday afternoons visiting Salford Museum and Art Gallery. 

Our reason for visiting was the recent opening of the 'Heart & Sold' Art exhibition. This unique and special art collection was previewed in London and has travelled to New York before landing in Salford for its longest opening yet.  The exhibition is a platform for over 30 artists - who all have Downs Syndrome - to showcase their photographs, pictures, paintings, creativity and talent.



The art work exhibited has received critical acclaim with one of the artists original works gifted to The Duke & Duchess of Cambridge on the birth of Prince George and hangs in his nursery. Arnold Schwarznegger also owns artwork by one of the artists.

The exhibition itself is wonderful.  A real diverse collection of different mediums and expressions of creativity.  Paintings, collages, line drawings, photographs, watercolours. Pretty much anything you can think of.  The gallery space has a lovely welcoming atmosphere and although there were a lot of people there because they have a connection with the Down's Syndrome community, there were also those who had just stumbled upon the exhibition too.  Everyone there was appreciating the art work for what it was - Art.  The fact that the artists have Down's Syndrome is important, but it doesn't define the exhibition. I would say it definitely enhances the experience though, especially for visitors who don't know what the exhibition is about before they walk through the gallery. 

The afternoons we went along, we were also able to enjoy helping to create elements for a brick wall, which is an evolving part of the exhibit that will be added to for the duration of the exhibition at Salford.  We were helped by the lovely ladies from Venture Arts to make some clay flowers and some moss and also some of the clay bricks for the wall too.  Good, messy fun and Ella really enjoyed getting involved too.  Lucy managed to sleep through the hands on sessions at both of our visits but did wake up in time for a trip to the cafe on both occasions!



(Photo Credit to Suzie Moffat, Heart & Sold Director for the above photographs)

The Museum is also worth a visit - there's a Victorian street to explore, with the option of dressing up too.  Ella and Lucy both looked very fetching as Victorian street urchins!...



The exhibition is on at Salford Museum & Art Gallery until June 5th 2016 and is well worth a visit.










Tuesday, 8 March 2016

A little something extra... Everyday

I don't think about or see Ella's Down's syndrome everyday. I used to, but not now.  On the face of it she is like many typical 5 year olds. She goes to school, has lots of friends, argues with her little sister and doesn't listen when she's asked to do something. She loves being outside, being creative, helping in the kitchen, dancing, trampolining, roly polys and of course, chocolate. 

But, there are differences that come with having a 47th chromosome - that 'little bit extra' (a complete third 21st chromosome for most) that those with Down's syndrome have.  Ella still needs help with lots of things that her peers don't - getting dressed, help with what is happening next, encouragement in her play and support with all aspects of learning at school - to name a few. It also means that Ella herself has to work that little bit harder in order to learn new things or gain new skills.

The little bit extra also means that Ella's had some medical issues along the way too - her heart defect which she had surgery for at 6 months old, low muscle tone which led to poor feeding and meant she took longer to learn how to roll, crawl, stand and walk. She's also had some hearing issues over the years and wears glasses to correct her poor vision. 

So, that little bit extra is responsible for a big change in many areas of Ella's life and development. Having an impact on her health, her view of the world, how she learns and how she communicates. 

But I've also learnt over the last 5 years that that little bit extra means so much more than challenges and worries. That little bit extra is packed with bravery, tonnes of determination, a bucket load of independence, lashings of cheekiness, and a humbling awareness of kindness, compassion and love. 

I feel very priveleged that we get to experience our amazing girl who has that 'little bit extra' (and all it brings with it)... Everyday

Sunday, 31 January 2016

Losing Down's syndrome?

This is Ella at 2 days old, snuggled with her daddy.  
Loved and protected.
All that she knew and all that she needed.



And in so many ways, I wish we could keep her just like this.  For the older she gets, our ability as her parents to protect her and keep her safe and happy will continue to slip through our fingers. 

And I feel the need to protect her from so many things as she grows...

From others
From stereotypes and ignorance 
From society 
From Science 
From learning that she is not deemed equal to others 
From the difficulties of living with being different 

You can't have missed the recent news that the new non invasive pre-natal test (NIPT) for detecting Down's Syndrome (as well as other chromosomal abnormalities) is to be introduced into the current NHS screening programme.  It has been available privately and at a price for some time now, but is soon to be offered to any woman with a greater than 1 in 150 chance of having a child with a chromosomal problem following the results of current testing procedures (Nuchal Translucency scan and triple blood test). I am sure we will see its use becoming more widespread in the next few years, potentially being offered to every expectant mother over time. The simple blood test can be performed earlier in the pregnancy and provides more accurate results than other tests currently available.  It will reduce the need for invasive screening measures, such as CVS/amniocentesis as there is a miscarriage risk associated with these procedures.  There is also the cost savings for the NHS related to doing fewer invasive procedures. All good so far.   

The issue for me and many others, is with how the information these new tests provide will be used. It is also a question of ethics and whether this test borders on a modern day eugenics, last seen in practice in Nazi Germany.  A world without Down's Syndrome may not be far away.  And, unfortunately, the media, medics and scientists would have the world believe that this is something to strive for. That this 'debilitating' 'disease', a 'burden on society', that people 'suffer' with will be once and for all eradicated. 

And this makes me desperately sad.  Sad that Ella's life is deemed to be of less value than others, that people think she suffers or that we suffer for having her in our lives. Sad that they may look at her and see a burden and sad that society doesn't value difference, diversity or appreciate what people with Down's Syndrome bring to their families, schools, communities and to the world. And what message is society sending to those with Down's Syndrome, who read the papers and watch the news themselves? 

The medical profession holds all the power in this situation, turning a women's right to choice into a decision they are so often rail-roaded into following incorrect, out of date and negative information and advice. There needs to be a change of approach and better education for medical professionals dealing with pregnant women undergoing screening. I am pro-choice but recognise that women need to be given accurate, unbiased information in order to fully understand the choice they are making - and that is unfortunately not happening now. In the UK a reported 92% of pregnancies where the baby is confirmed to have Downs Syndrome end in termination (693 terminations in 2014). In other countries, Denmark has reported it may become one of the first populations without a person with Down's Syndrome 'in the not too distant future'. This is most likely due to its >90% uptake of pre-natal screening. In 2012, Iceland had already not had a baby born with DS for two years, again due to prenatal screening uptake rates. 

Most shocking of all is this. In UK law, the cut off for abortion is 24 weeks. If the baby is found to have a 'severe handicap' then it is legal to terminate the pregnancy up to 40weeks, something I've only recently learnt (in Holland this extends to after birth under the Groningen Protocol).  Reasons for these late abortions have included cleft lip, club foot as well as Down's Syndrome.  Not exactly conditions that are incompatible with life. In 2014 12 late term abortions took place due to the baby having DS. 

I don't even want to contemplate how or why this happens but along with thousands of others signing a change.org petition, I'd like to see a change in the law regarding late abortions. I have signed because I believe babies with Down's syndrome should have the same right to life as others. 

I would be very grateful if you could take a couple of minutes to sign the petition yourself - you can do so here


There is also an international petition that you can read more about and sign here:



And here is Ella, still snuggled with her daddy (and her little sister) just this week. Still protected, still loved and thankfully oblivious to both the existence and impact of her one extra chromosome.  

All our lives will always be better for having her in them xx







Thursday, 7 January 2016

The year that was - 2015

I always enjoy writing these end of year posts on the blog.  What we've done, where we've been, who we've met and what we have learnt. It's always lovely to be able to look back and see where the year has taken us.  For me, 2015 has not been easy - from keeping things going as a solo parent while Ian was working away to making some difficult decisions about how best to make the work/life balance work for our family as we move into 2016.  There have been some good times too, weekends away with Ian and with friends and a trip to Wales with old school pals and our growing brood of offspring!

Ian finished his year working away in August and is now back working locally.  We all love having him home and seeing more of him even though I know he misses the air ambulance (don't feel too sorry for him though, he's managing to fit in some regular locum shifts to keep his hand in!).   

Ella has grown a lot in many areas this year - most noticeably going from being a pre-schooler to starting in reception at our local primary school, but more of that later.  She still makes me beam with pride everyday and has developed a real cheeky streak this year.

Lucy has also changed massively from tiddly toddler at the beginning of the year and has become a very articulate and confident little girl who all of us dote on.  

January




February
In February, we celebrated heart awareness week again by wearing red and donating to the British Heart Foundation. 



March - we yet again donned our odd socks for DS awareness day on the 21st and once again thank everyone who also took part and donated their lovely pennies!





April



May

I attended the Blog-on conference in Manchester. Lovely to have such an awesome blogging event on the doorstep as so many of them are further afield. There was lots to learn and get involved with whether you're a blogging pro or a mere beginner/novice like me. I've already signed up to go this year (won my entry ticket in last years raffle!). 

We quietly celebrated Ella's 4th heart-day with a heart shaped cake (and a little candle) and lots of thankfulness, while thinking of those little ones who are going through their surgery or have it yet to come.  

This year we celebrated whilst eagerly awaiting news from my brother that a new little person had finally arrived. The little man who made me an aunt and gave the girls the new title of cousin (!) arrived later that evening.  A day of multiple celebrations from now on!...  


June


At Ella's eye exam it was decided she did need glasses (always a given due to the fact Ian and I both wear them, it was just a case of when). Getting them before the summer meant we had a good couple of months to get her used to them before she started school where it would be most important that she was able to see everything in order to learn and to enhance her fine and gross motor skills too. She wasn't sure about them at first and would take them off a lot but with persistence and the fact that they do help her see better she was soon wearing them for long stretches before she started at school. She still regards them very much as a part of her school uniform and they soon get taken off when she gets home at the end of the day! 


July




We went on a special trip to see The Take of Mr Tumble which was on as part of the Manchester International Festival. We finally got to meet Florence and her mum Rachel (you can read all about it here). A special day for us all.


August



Ella and I had some lovely day trips together during August while she was on summer holidays and Lucy was at nursery. It was lovely to spend some quality time with her and be able to give her my full attention. We went to the Museum of Transport, Crosby Beach, the Lowry, soft play and spent lots of time in the garden.


September


I know you already know this but Ella started school! A long time in the planning and there were lots of things to consider but 3 months on, I am sure she is in the right place. She is happy and that was all I wanted for her. Her speech has come on so much and her love of drawing and being creative has been nurtured. She has talked a lot about school and her friends over the Christmas break, (Lois, Grace and Chloe got mentioned a lot!). 


October




We celebrated as a family at a lovely house in the Cotswolds for Granny Sarah's milestone birthday. Ella and Lucy absolutely love their baby cousin as you can see from the above photo! 

Ella really loves animals. We have two cats who she loves to pick up and hug (not sure they feel the same way!). She also loves meeting dogs when we go for walks or to the park and enjoys days at the local farm feeding the animals there. We went to the Viking festival in Stockport and Ella got the chance to hold an Owl called 'Fally'. Ella was very patient, still and quiet and followed the instructions she was given by the handler beautifully. She was very proud of herself as the picture shows.



November


5! How did she become 5??? She had a great birthday, soft play party at the weekend with her friends and then a family tea on the day itself. And just like last year she loved being the centre of attention, especially where singing, cake and candles were involved! 


December
A big month for me personally in that I swapped my nursing career for being a full time mum to Ella and Lucy. It was a difficult decision to make for lots of reasons but was definitely the right thing to do. We don't know how long my career break will be, but I am able to pick up bank shifts as needed to continue my professional registration and keep up my skills. It's been a real change in pace, choosing when to work and being able to work around Ian's rota instead of clashing or working complete opposites as we were before. So for us, 2016 = more family time, although less work doesn't seem to mean we are less busy! Everything just seems that little bit easier when there is one less ball to juggle.

This year we got the first visit from 'the kindness elves. The elves replaced an advent calendar in our house although they didn't visit everyday (need more time!). The kindness elves are a lovely and meaningful alternative to the elf on the shelf idea, started by Anna of the 'imagination tree' blog. The idea is that the elves will teach and reward kindness and make us think of others during the festive period. The elves did lots of fun activities with the girls - from making bird feeders to give as presents (and to feed the birds while it's cold), messy play, donating food to the foodbank and general festive fun. All with the idea of reminding the girls to be kind and ways they might be able to do this. It's an idea that can be adapted and can grow with them each year. Lucy already keeps asking when the elves will be back so I can see them becoming a part of their childhood Christmases. 






Here's to 2016 - more time for family, for fun, for blogging and maybe even more time for me...




Monday, 23 November 2015

Mummy

I was sorting through Ella's school book bag on Sunday evening, getting ready for the week ahead. In and amongst the parent governor nomination letter, her communication book and the many drawings she comes home with on a daily basis, I found this...


                        'Mummy'

It's nowhere near legible and she has obviously had help to copy the letters but it is her first attempt and I love it. I love that she tried, I love that it's for me and I love the promises it signifies for the future. 

This evening we opened her birthday presents from her party at the weekend. My plan was to just do a few each night this week as last year she would only stay interested in opening presents 2 or 3 at a time and needed help getting the paper off. 

Well, my plan was busted as she wanted to open them all and didn't want help, thank you very much! 

With each lovely and thoughtful present that was opened came a card. And in some of those cards, her friends had written their own names in their own hand and I felt a moment of sadness that Ella can't do that yet. 

Can't do it. Yet. 

But her picture has pride of place on the fridge door, a reminder that she will get there in her own time. 

 
 

Wednesday, 21 October 2015

A Pink Umbrella

Today was wet! And we can't complain too much as the weather has been quite dry of late. But I guess it's that time of year when the days are just going to get darker, colder and wetter.

After I'd dropped Lucy at nursery, Ella and I drove back towards home to drop her at school. As we neared the local secondary school, we could see all the pupils making their way there in the rain. 

Ella: 'Umbrella mummy'
Me: 'Yes, lots of umbrellas today Ella because of the rain' 
Ella: 'I need that one'
Me: 'What? You'd like an umbrella?'
Ella: 'yes, pink one'
Me: 'you'd like a pink umbrella?'
Ella: 'I love that one!' (Which is her new favourite phrase).

Well how could I refuse? For a child that has never once asked me for anything, if a pink umbrella is what she wants then...




She loves it - wet days will be much more fun from now on!

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