Tuesday, 26 June 2012

Little mover

 Nothing is safe any more! 

I knew this time would come but I've become a little complacent having had a non-mobile baby for so long.  Everything now has to be moved up a level out of the reach of small hands...  It's a big learning curve (for me not Ella!).  Even strapped into her pushchair she today managed to empty the contents of the chemists shelf onto the floor as I had left her in reaching distance of the items on the shelf.  So there I was, on my hands and knees in the packed chemist picking up boxes of Immodium instants off the floor... 

Babies with Down's Syndrome are generally born with low muscle tone (hypotonia) which makes them quite floppy.  This means that it takes them longer to roll, lift their heads up, sit, crawl or walk  than other children.  Add a heart defect and major heart surgery on top of that and it can really delay a child's physical development.   This is why physiotherapy is important in helping babies with Down's Syndrome improve muscle tone and develop their motor skills.  

I have had it in my head all along that Ella would possibly be walking by the time she was 2.5 years old.  This may still be the case but we have been surprised by the sudden leap in her physical skills.  So, maybe my wish that she will walk before her second birthday could happen?  If there is one thing that Ella has taught me it is that anything is possible... 

So, after weeks of trying, Ella is now crawling! It's almost a proper 4-point crawl (she uses one knee and one foot...).  The commando crawl has most definitely been forgotten...


She is also pulling to stand on furniture, boxes, me (anything really) and beginning to cruise....


I have to confess to getting a little emotional when she started to take steps with her walker the other evening - she does need a little help from mummy and daddy for now but I have no doubt that her determined/independent streak means she'll soon be confident enough to go it alone. 

She was very proud of herself too (and so she should be)...




As Ella's newest word is Duck ('Du') we made the most of the (short-lived) good weather and went to feed the ducks.  Ella had a lovely time and enjoyed throwing bread...










We also went on the swings...



I will leave you with some pictures of Ella & her friend Daniel having fun in the ball pool...




I am off to baby-proof the house! 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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