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


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.


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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