Showing posts with label Special days. Show all posts
Showing posts with label Special days. Show all posts

Tuesday, 27 November 2012

Celebrating 2...

It's been a hectic few days in our house.  Hectic, but lots of fun!  

To celebrate Ella's second birthday we hosted a party for her friends and family, opened her  many presents, ate cake and spent a day at the aquarium.

Ella has loved seeing everyone, being sung to and opening her (many) presents.  She's a very lucky girl.  Saturday started with her opening her present from Granny - her first dolls pram which she absolutely loves...




This year, I delegated the most important job - the cake - to someone who had more time, skill and expertise than me.  I'm glad I did... 'Mr Tumble' was the brief and that's what we got...  


Ella's great grandparents couldn't be at the party this year. Ian's Grandad baked Ella a delicious chocolate cake which came accompanied by a lovely note...



We had a lovely afternoon with the house packed full of the chatter and laughter of our family and friends.  It was especially lovely to have all the people that we have met since  Ella was born, join us to celebrate her special day.  Amazing people and families we may never have met if she didn't have Down's Syndrome.

Sunday was spent at my mums and (even though it was a day early) we opened all her presents. She had a fab time with all the wrapping paper and playing with her lovely new things...




The plan for Monday, her actual birthday, was to visit Chester Zoo and see the animals (especially the brand new baby Elephant born over the weekend). However, as we got out of the car into the November drizzle and freezing cold wind, we decided very quickly that a day in the elements was not for us.... So we chose the aquarium instead.  And Ella had a ball.  She loved the fish,  refused to go in her buggy the whole way round and either crawled or walked.  Stroking the sting ray and splashing in the tank was a particular high point...











Here's to another year of fun Ella Bean.  Happy Birthday xx








Friday, 15 June 2012

Home is where the chaos is...

It's been a full four seasons since we moved to Didsbury from our city centre flat with a small baby.  We knew then we would only be there for a little over a year and the time has flown by. 

The new leaves once again appearing on 'Ella's tree' in the school playground at the end of the road signal that it's our time to move on...  

  
Number 47 will always be remembered as a house where we were happy.  The place we celebrated Ella's first birthday, where I felt safe and content at a vulnerable time and where we brought our girl home to after her heart surgery...   



Although I was sad to leave, I am excited about what will be in our new house... Our home. 

And so we are now moved and beginning to settle in...


It's in need of a lot of TLC but we are lucky enough to be able to make our own mark on the place and turn it into our home.  We were without hot water or heating for the first week but we are toasty warm now.  Still no kitchen so coping with microwave, kettle and fridge in the dining room and washing up in the bathroom sink. Novel for now but thankfully the kitchen is slowly getting there.  For now, home is most definitely where the chaos is!..

Looking forward to some warmer weather so we can get out in the garden more...


The garden has really surprised us and is a lovely space to spend time in.  When we looked round the house in February, there was nothing to see but a few snowdrops peeping through the frost.  Now the borders are bursting with colour and life.  Climbing roses, clematis, cornflowers, bluebells, geraniums.  A lovely, well established English garden...






Ella has been as adaptable as ever.  She seems to like her new house and so long as her toys and people she knows are around she is pretty happy anywhere.  I worried she would be unsettled but she has been fine.  Her room wont be ready for a while but she has taken up residence in the 2nd bedroom for now.  It will be nice when all the workmen have left and we can begin to enjoy the house properly.   

The removal of all the downstairs furniture 2 weeks before we actually moved out of the Didsbury house meant that Ella had a bigger play space and could move around more... And find new 'toys' to play with...





Since my last post of a month ago, Ella has come on a lot both physically and with her communication.  She is now able to sit up from lying down....



She can pull herself to stand on furniture and in her cot...

(the cot was lowered following this photo!)

Semi crawl/commando crawl...


Have a drink from her beaker by herself...



Unfortunately, with moving out of Manchester and into Stockport all of Ella's current services have had to change.  The play specialist has said goodbye to us (Ella would not be doing so well without the input and hard work from Jaqui over the last year).  We now fall under the Stockport Portage service. They will see Ella in nursery as well as at home and after meeting the service manager at a recent meeting at Ella's nursery I am feeling more positive about the change and that the transition will be as seamless as possible for Ella and not impact upon her development.

The physio, speech therapist and our GP will all change too which I knew would happen but there is always the worry that the NHS 'postcode lottery' will mean we may have to wait for services we were already getting or that service provision will differ.  Time will tell.

So, back to Ella and her news...She is suddenly using signs to ask for things rather than copying or not using them in context.  These are the signs she is using now:
  • More 
  • Food
  • Star (with word)
  • phone
  • hair dryer (points at hair dryer and then puts her hand to her hair)
  • Mr Tumble ('wind the bobbin' motion with her hands) 
Ella is also able to point at things she wants or where she wants to go.  I can see she is more frustrated now as she cant always communicate exactly what she wants but hopefully in time she will learn more signs and be able to 'say' more.  She has said 'car' on two occasions - once when we were getting in the car and the other when looking out of the window at cars, not consistent with it yet though.

She now knows what a star is (as opposed to just being able to do the sign when she hears someone say star or copying the sign).  Everywhere we see a star she does the sign and says the word ('tar').  She also surprised us this week by building a tower using blocks...


The move has taken over for now but we have managed some time in the sunshine, a night off for mummy and daddy to see Coldplay (awesome!) and time with friends and family.  



Thank you to all who helped us to move and those who have helped with our many (simultaneous and ongoing) DIY projects!  We are hoping to organise a BBQ/house warming soon...

(A selection of photos from my phone, all uploaded to instagram - follow me @albion52)

Hopefully wont be as long until the next post and I'll have unpacked a few more boxes by then. And who knows, I might have a kitchen too!...


Happy weekend everyone 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
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