Terribl(y cute) twos!

Well summer has well and truly arrived and with all this hot weather drying everything up my blog has been no exception! I'm happy to report its nothing other than being a lover of the summer sun. I've been spending every minute I can outdoors trying to maximise time with the kids, which in turn has left little time to write (priorities and all that!)

Rosie is now fully recovered from her op and is certainly making this clear whilst developing a new diva side to her cheeky character.

We've become accustomed to putting common age related 'milestones' aside and have got used to seeing Rosie for who she is, happily achieving things in her own time... With this and her cheeky happy nature in mind we'd completely overlooked the possibility of a 'terrible two's' phase!

One thing we've never experienced (until now) with Bud are those dreaded bedtime battles. Up until this last couple of weeks we've been the envy of our friends with similar aged children as bedtimes with Rosie would consist of milk, a short story, take her up to bed, lay her down with a kiss goodnight and bingo...she'd be asleep within minutes! This happened practically every night without fail regardless of where we were staying too – this girl is a total breeze we thought...

It's a very different story now however. If she's not going all rigid and screaming as soon as she's within sight of her bedroom she's clinging onto us for dear life (whilst laughing) as we try and lower her into her bed. Either way as soon as she is lay on her mattress all hell breaks loose as she screams and cries for our attention. It wouldn't be so bad to leave her for a few minutes but her brothers are right next door and are kept awake as a result – they are like us and don't like to hear her cries, so can often be found in her room trying to comfort her. The moment we step back into her bedroom she stops, sometimes giggles but more commonly starts happily babbling away to us. On one particular night we decided to let her cry for a little while in the hope she'd get tired and just drop off – but no, this girl has willpower! So I went into her room, put on her favourite Tom Petty tunes, lay on the floor next to her cot and held her hand. She lay there totally still looking straight into my eyes with a sleepy, happy, contented smile that quite literally melted my heart. It was such a sweet and special moment I felt helpless to cut it short, so we lay there for about half an hour gazing at each other until she eventually dropped off. As with most things I like to try and find a positive from a negative situation and this is a definite bonus to her new terrible twos phase!

I've included a few recent photos taken at a sensory play centre whilst at Rosie's friend, Lottie's birthday party and a couple of shots playing throw and catch – something she's been developing whilst enjoying garden time.

Major Day Out, Minor Surgery

I don't know whether I'm coming or going at the moment and I've been meaning to write a post for ages, so I've finally grabbed myself some timeout to write...

On Sunday 16th we were kindly invited to enjoy a day out at Legoland Windsor by the very generous folks at MAD Awards. We travelled down the day before and treated ourselves to a rare family sleepover in a hotel. Trying to get Budlington to sleep with us all in the same room was quite a challenge especially with her brothers being so hyper-excited, but we did eventually succeed!

We were really spoiled on the day and given the full VIP treatment including access to the park before the gates opened to the public. There was a special preview of the new 4D film, 'Chima' which was just brilliant (full water proofs recommended!) and each family received special wristbands which allowed us to jump right to the front of the queue on any ride! I felt a tad guilty at first strolling to the front and hopping straight on the rides but it really enabled us to get the most out of the park and we had a fantastic family day that we'll all treasure forever. Rosie is too young to understand of course but the boys had a riot – the highlight for me came when we shot down the water drop on the Pirate Falls ride and Joe screamed out, "THIS IS THE BEST DAY OF MY LIFE!"

Two days later and we were brought back down to earth with a bump as Rosie went into Royal Manchester Children's Hospital to have her tonsils and adenoids removed. We've always known it's a minor operation, certainly by comparison to what she endured with heart surgery, however both Karen and I were extremely anxious – not only for the op itself but all the questions that were spinning around our heads:

• Will her tiny mended heart be able to cope?
• Will she have an adverse reaction to the anaesthetic?
• How will they get the intravenous line put in her when she kicks and shouts just being put down on the bed for a check-up?

We were reassured Rosie was in the best hands when told that she would only be operated on if a bed becomes available on the High Dependency Unit (HDU). It's not that she would need it necessarily but it was good knowing they had taken this precautionary measure as a result of her health record.

I took her down to theatre for the anaesthetic on the Wednesday morning – selfishly nervous of the memories it would bring back from Alder Hey. I really surprised myself by holding it together and Rosie was extremely well behaved. The anaethetists were fantastic at keeping her calm and they put her to sleep with gas before inserting the intravenous line so she felt no pain. I did allow myself some wobble time when I got back on the ward (it was hayfever honest!). I've learned from our stints in hospital with Rosie to accept that it does me no harm to let go sometimes, I find it easier to deal with things after getting it out the way rather than trying desperately all day to keep it in. The thing I really struggle with is seeing Rosie gazing at me with such trusting eyes and it feels like I'm damaging our bond by not protecting her. It's so silly I know as she won't remember and obviously it's being cruel to be kind but it's how I felt both times I've taken her to theatre.

The op lasted just over an hour and we're told everything went well – they decided to leave her adenoids in so just the tonsils were removed in the end.

Only one parent is allowed into the recovery room so Karen went through to be with her as she came round. The first thing she did as she woke up completely melts my heart – she looked into Mummy's eyes and did the Makaton signing for 'More to Eat'. She has done this sign before but this is the first time she has instigated the communication away from when we're teaching her. A very special moment for Mummy and Rosie to share.

Thankfully she came straight onto the ward with no need for HDU. I was sat by her empty cot waiting when she was wheeled onto the ward. She saw me and gave me the most wonderful smile – I'm not exactly sure what I was expecting when I saw her but so soon after surgery it certainly wasn't that! All my daft worries of tarnishing our bond had been erased in that one moment.

When they transferred her from the bed to her cot she immediately sat upright giggling, laughing and chatting away – that's when the picture below was taken.

Rosie was kept in overnight as a precaution and discharged the following morning. We were told the first couple of days would be easier for Rosie, then as everything begins to heal it gradually becomes more uncomfortable. Which is where we are right now. She's had a few restless nights and her stubborn streak is making it very difficult to administer the pain relief. Karen has even ended up with Calpol in her eyes!

To end the post on a happy note, below is a video of Bud busting some shapes at her cousins disco party (pre-op of course!).

Rosie Disco Dancer from SwissBaldItalic on Vimeo.

Chocolate – the way to a girls heart

On Wednesday morning Rosie finally (after four cancellations) had her cardio check-up to ensure everything was still as it should be post open heart surgery 21 months ago. As we arrived I took her to the play area thinking she'd be excited by all the new toys at her disposal – it quickly became apparent that her attention was drawn to one thing only... the vast open shiny floor space available to show off that professional bottom shuffle technique of hers. Not an inch of floor went unexplored as she shuffled around with such joy and determination. To be honest I'm half expecting a call from the hospital to offer her a full time floor polishing job.

We were called in to see the consultant and as we placed her on the scanning bed it struck us just how much she's grown in size and strength. The last time we had to do this Rosie was still very baby-like and relatively happy to just lay there being poked and prodded. Not this time however...
As soon as we tried to lay her down she was attempting to roll off, forcefully kicking out, shouting and trying anything within her (now strong) power to resist. This went on for a minute or two and the only way we could get her to co-operate was for Karen to lay on the bed with her as I held her hand. The nurse then entertained her with a portable DVD player and a projected light display on the ceiling. Even then she was still wriggling around but the ever patient consultant eventually managed to get sufficient scan footage of Bud's little heart.

I'm happy to report that everything is functioning as it should be and it was mentioned again just how successful the repair was at surgery which is so reassuring. A small amount of fluid was detected around her heart which could simply be a result of her recent lung infection so another scan is being booked for next week when she goes in for surgery to remove her tonsils and adenoids just to make sure it has cleared up.

Yesterday, Rosie's brother Joe made a mistake I doubt he'll make again in a hurry when he darted off to the toilet leaving his half eaten chocolate pudding for a short moment. Karen was in the kitchen tidying up which is when Rosie saw an opportunity and made a beeline for his bowl. By the time Joe had returned it was all but gone. She'd have got away with it too if only she could manage to get it in her mouth and not all over her face and clothes!

Thankfully for Rosie Joe saw the funny side and thought it was hilarious as he called for Mummy to come and see. He certainly wouldn't have reacted this way had anyone else pinched his chocolate pudding but Rosie seems to have him completely wrapped (like me) – making her exempt from any wrong doing in his eyes.

I'm closing this post with a world exclusive video of Rosie's first music single. The beauty of this song is it's never the same twice. She's been working on it for a while now and is really excited to see it rise to number 1 in the charts. xx


Rosie hit single from SwissBaldItalic on Vimeo.

Up! Down! Up! Down!

It's been another busy couple of weeks here at The Future's Rosie HQ! We've had half-term chaos and a jaunt down South to celebrate Budlington's Uncle's 40th – and celebrate we certainly did (ouch!)

Lately I've enjoyed sitting back and observing Bud, seeing how she chooses to amuse herself. She shuffles around the house finding things to play with and/or destroy. If she isn't playing or throwing something half way across the room she'll be sat there chatting to it, she's that sociable she will chat to anything, chair legs, the bin, her books you name it! It's pretty safe to say however, that when her brothers are about not much else in the house gets a look in, least of all me! Just the other day the boys were playing out in the garden enjoying a rare spell of Northern sunshine and there was Rosie pressed up against the patio doors totally engrossed in her brothers. She sat there for ages laughing away to herself at all their silly antics!

I know I've probably written this a thousand times before but the boys really are so good with her, and why wouldn't they be? She is their little sister after all – which is exactly how they see her. There's no pretence or extra effort going on here it's a natural sibling bond pure and simple. There would be no reason (as far as I can see) for them to know or be aware of her extra chromosome, in fact I'm positive the only reason they do know she's built ever so slightly differently to themselves is because we spoke about it as a family in the early days of finding out.

About three months ago now Rosie was measured up for a special chair. It's designed to teach her to sit properly by encouraging her to use and develop the correct muscles. We took delivery of it this last week and it's brilliant. It has multiple uses and can be used as a stand alone 'arm chair' for chilling in front of the telly or attached to an adjustable frame to make a high chair. Of course, it's too early to say whether it's genuinely helping her or not but she certainly likes being in it which is a pretty good start.

It is also proving to be a great platform for her to show off her new game 'Up!...Down!'
The rules are fairly straight forward, she throws her arms in the air, shouts, "Up!" you then copy her before she throws them down again, not forgetting the all important shout of, "Down!" It's a bit like Simon Says except it's Rosie saying it and there's only two actions! The game itself basically lasts as long as you're able to endure.

I haven't managed to get footage of it yet but the pictures below should give you the idea for now. It's my intention to upload a video here soon so watch this space!

Stand Down

Many of you will be aware of recent comments made by Councillor Collin Brewer regarding disabled children. I'm not quite as eloquent as many other campaigners when it comes to 'fighting the fight' peacefully and with dignity, so my contribution comes with the image below.

To be honest I've 'err-med and ahh-ed' about what I should do and I'm still not too comfortable with tarnishing The Future's Rosie blog with his story, however the comments made were so vile, disgusting and out of touch it simply couldn't be ignored. Anyone new to The Future's Rosie who may have come here looking for some positivity please rest assured that the views of this man are a minority – our desire to call for his resignation comes from the fact he voices these small minded opinions from a position of power.

I will remove this post when he resigns.

A good article outlining the events can be found here:
http://www.independent.co.uk/news/uk/politics/disabled-children-should-be-put-down-cornwall-councillor-collin-brewer-to-be-investigated-by-police-over-controversial-comments-8616097.html

A petition to call for his resignation can be signed here:
https://submissions.epetitions.direct.gov.uk/petitions/46463

Upon Reflection

Firstly, thank you all for the lovely comments, advice and (in many cases) words of wisdom in reference to my 'What if...?' post. I was so touched by the response. When I first started The Future's Rosie I never expected it to reach much beyond family and friends so it still comes as a great surprise to me to have the support of so many – through the good times and the wobbly ones! Having taken the time to reflect I'm pleased to say that your words of support have really helped me bring things back into some sort of perspective again (for now at least).

Which brings me on (rather tenuously) to Rosie's latest achievement of recognising and responding to her own reflection...

Rosie often sits in front of the mirror in our bedroom playing with her best Bud – hours of fun they've spent laughing together, touching hands and generally doing exactly the same things. Then on Saturday morning something dawned on her, she took a baby wipe out of the packet next to her on the floor and began showing it to her friend in the mirror, touching the glass with it at first before eventually placing it on top of her head. She sat there for a moment with a slightly puzzled look on her face, then, rather than reaching out to the mirror to try and grab the wipe from her friend, she reached up removed it from her head, looked at it then placed it back on her head followed by a big belly laugh. We are almost sure this is the moment she discovered that her little friend in the mirror was in fact her own reflection.

Back in January Rosie had a sleep test done to monitor her oxygen saturation levels which are consistently below the level that they need to be when she's asleep. As a result of this test an ear, nose and throat (ENT) appointment at the hospital was arranged for last week. The ENT consultant suggested that the low sat levels are a result of her tonsils being too large. So we are now on a waiting list for an operation to have both her tonsils and adenoids removed. A simple half hour procedure by all accounts. However rather selfishly one of the first things that sprung to mind was whether or not I can face seeing her put to sleep again and put through any ounce of discomfort – it's ridiculous really when I think of all she's been through already but right now the thought of her being in any pain (even for her eventual good health) is still difficult for me to stomach. As I write this it dawns on me that the real reason for my anxiety is having those memories of her heart surgery stirred up again.

Rosie had her first physio appointment with her new therapist last week. Due to staff changes it's been a while since her last appointment and we were hoping to finally get rid of the medieval looking standing contraption which she hasn't ever taken to. In all honesty we haven't perservered with it as we perhaps should have, figuring she wasn't going to progress much if it distressed her. How wrong we were as it appears her leg strength and standing ability has, if anything, dwindled in recent weeks... Lesson learned. So we are now back to putting her in it daily for as long as she'll manage which actually seems less stressful this time and we're hoping to see improvements here soon.

What if...?

I've been really struggling to find the motivation to write these last few days, 'writers block' I think they call it... a perfectly feasible explanation if I were indeed a writer but I'm not. I'm just a Dad who rambles now and then about his beautiful daughter – nope writers block it isn't. Perhaps I'm feeling the pressure to deliver some sort of perfect and profound post since becoming a MADS finalist?

In all honesty these are just excuses for why my train of thought has been knocked off kilter this last week or so. My mind has been stuck in a little rut consuming itself with those dreaded 'What ifs'... 

What if I don't ever get used to the inevitable stares from the ignorant corners of society?

What if Rosie can't ever walk?

What if Rosie attends school and she's the only person in her class not to get a party invite?

What if she's bullied and picked on by her peers and she thinks they are her friends?

What if name calling leaves a lasting mental scar on her and/or her brothers?

What if she becomes too dependent when she's older?

What if I become so protective it affects her ability to become independent?

What if I can't do enough to help her reach her full potential?

What if I can't afford the extra classes or development tools she could really use to her benefit?

What if she does need that further heart surgery in her twenties?

What if...and the list goes on.

I'd do well to remind myself of all the 'what ifs' that spun around my head before she was born that never materialised and seem so daft now like, what if I can't bond with her, what if friends stop visiting etc... 

This post doesn't really sit well with the blog title The Futures Rosie does it?! However I've always promised to be open/honest and this is where I am at this particular moment of writing. 

I hope to look back on that list above one day when Rosie's older and laugh, maybe even feel a bit silly for ever worrying about them at all but for now its something I'm struggling with a little.

You'll be pleased to know that whilst I've had a wobbly few days Rosie has carried on as normal. Her brilliant sense of humour shining through as always and illustrated perfectly in the pictures below in her new glasses. xx