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

Thursday, 10 May 2012

Twinkle Twinkle...

It is well known that children with Down's Syndrome are very visual learners.  Learning through seeing and doing is how they process the world around them.  That is why we were encouraged to start signing words to Ella from very early on.


(Not quite as early as this pic, but from about 4 months old)


We started with things that we did or happened a lot such as drinking milk (drink), change (nappy), sleep, car (you get the idea!).  There are also signs for hello, where, what, sorry etc... Here are a few examples...
Drink:





Makaton is different to sign language.  The signs are mostly intuitive and involve an action rather than a static sign.  The word that you are signing is always spoken alongside the sign, unlike sign language.  

In the beginning, learning a few signs was fairly easy but now she is more engaged and we are doing more with her I now have to know lots of signs!  Animals, places, feelings, objects.... It's never ending. I have also been known to use signs during conversations when Ella isn't there (at work, out with friends....)  

Nursery also embraced the signing and have had some great results from the other children too.  They have even introduced 'sign of the week'.  It is known that babies understand verbal language and words long before they can speak themselves.  Signing is used to bridge the gap between understanding and talking.  And using the sign doesn't stop children from speaking or delay their speech. Once they can verbalise the word, the sign drops off as they no longer need it.

The pay off for starting signing with Ella so young is that we are now beginning to get some feedback  and we are very proud of her! Even better than just signing she is also attempting the word with the sign.   We get 'awa awa' when she waves and 'tar' for star....




Our little superstar 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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