Wednesday 26 June 2013

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.

Thursday 13 June 2013

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.

Tuesday 4 June 2013

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!