Wednesday 20 June 2012

Fixed Heart and Funny Faces

I've found myself completely distracted from writing on here due to the Euro's, so tonight there's no footy on I thought I'd take the opportunity to write a quick update!

The most significant (recent) event in the world of Rosie was her visit to Manchester Children's Hospital on Friday for her six month cardiology check-up. 

Visits to the Children's Hospital have always been a cause of anxiety for me since the whole journey of Rosie's Heart surgery began here. Initially pre-birth scans concluded she had a hole, then once she was born we were here again to discover the hole was in fact significantly bigger and there was also a problem with the valve. In short, early days visiting here often resulted in leaving with bad news. Friday's appointment felt completely different though – I'd even go as far to say I actually looked forward to it a little as I knew (from the last visit) the surgery had been successful and her steady physical progress since then backed up my confidence even more. 

We were told six months ago that (post-surgery) there was still some 'residual' valve leakage although this was quite common and of no major concern. This time however, we were informed there was no trace of any leak and in fact her repair has been a total success!

One day I hope I'll be able to write down just how thankful I am to everyone who helped make this possible – from the consultant raising the initial concerns, the surgeons and the nurses to those carrying out extensive research – all these wonderful, inspiring professionals have given my beautiful Rosie a genuine chance at life that she otherwise wouldn't have had, and for that I am eternally grateful.

In other news... Rosie's recent homework from the physio has clearly taken it's toll as she's been falling asleep in some very random positions / places! She's certainly my girl, as the ability to sleep anywhere is also a speciality of mine!

Rosie's also been working hard on some new comical faces of late, this weeks efforts have mainly focussed on 'looking shocked'.

Wednesday 6 June 2012

Back to work

After all the fun and excitement from the Christening it's back to some hard work for Rosie.

We were told by the Speech & Language Therapist that socially Rosie is developing really really well – of course we kind of knew this from the way she interacts and how she engages peoples attention, however to hear it from a health professional is also very encouraging.

Her physical development, whilst not mentioned as anything of concern, is an area where she does need more encouragement – A recent visit from the physiotherapist gave us plenty to do in order to bring Rosie onto the next level. I'm usually at work for these appointments so am given the full run down from Karen after.

The main focusses at present are; exercises to help strengthen her legs (so she can support her weight), assuming the crawling position (to help shoulder development) and sitting on a footstool (to enable her to sit with a proper seated posture).

In the main, life with our Budlington is very straight forward and completely normal (aside from her health blips which we hope we've seen the back of), it's only when we have appointments and are given advice on excercises to help her reach quite basic stages that I'm reminded things are a little bit different with Rosie. I don't say that becuase I'm worried or bothered by it, it is more a reflection on how completely normal I feel and how easy it is to forget about her learning difficulties – of course I don't totally forget but its encouraging for me personally to know, after many pre-concieved ideas, that first and foremost, I see Rosie as my Bud, my daddies girl, my beautiful, clever and inspirational daughter... oh and I almost forgot, yeah she also has this thing called Down's syndrome.

Some of the pictures below show Rosie working hard on her new exercises whilst having fun too!