rich emollient used in the management of eczema, psoriasis and other dry skin conditions.


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.


The Future's Rosie

I'm Tom, a thirty something father to three beautiful children and husband to my soulmate Karen. I started this blog as a means to talk about stuff, get things out in the open, a bit like an online therapy I guess and to celebrate the progress of my beautiful daughter Rosie who was born in March 2011 with Down's Syndrome (DS) and a Complete Atrioventricular Septal Defect (AVSD). Maybe the experiences shared on here will help others too, hopefully help illustrate the bright futures our children with DS will have if we can break down common misconceptions. When I first found out Rosie would be born with DS I found reading literature with open and honest feelings on the subject, extremely helpful. This is not intended to be a written masterpiece and I can promise you it won’t be. I don’t pretend to have a large vocabulary and to be honest the further behind me my school days become the more my grammar has deteriorated!... however, you will find what is written on these pages comes from the heart.

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