All posts for the month July, 2013

Surgery update!

Published July 19, 2013 by Caitlin Rose

Despite securing NHS funding for Caitlin’s surgery, we find ourselves in the very odd position of announcing that our little girl will now have SDR by Dr T S Park @ St Louis Children’s Hospital. This is the eminent surgeon who perfected the technique and taught the UK surgeons. It’s been a really tough decision to give up funding and we will try to explain why we’ve reached this decision. Two years ago we took Caitlin to Bristol for assessment. It’s a long long process (waiting list for assessments, waiting list for surgery) and we thought we were close to the end (having transferred to Great Ormond Street Hospital). However a curve ball was thrown at us at the last hurdle. Despite Caitlin being accepted for SDR in the UK (and funding approved) the multi-disciplinary team could not offer a prognosis. We could just about endure that as we were sure she would do well (knowing her strength and determination) but when the team said it could take her a year to regain her current function we were concerned. Very concerned. SDR is a major operation and it’s imperative that parents feel the treating team are entirely confident. We applied to Dr Park recently and received the endorsement we needed to hear. The report said that Caitlin is an excellent candidate, her walking and stamina will improve, her sitting will be normal, she can give up formal physio in a few years time (BIG thing), will be able to join in normal activities with her peer group and may not need lengthening surgery. We had not planned to go overseas for this operation but now that we’ve taken this decision we feel honoured that Caitlin will be under the care of a team whose experience is unrivalled. Many of you will know that Caitlin’s mum is a registered nurse working for the NHS. Ever faithful to the NHS she continues to campaign for the availability of this surgery to other children who fulfil the criteria.

Buddy saves Girl from POX ATTACK

Published July 18, 2013 by Caitlin Rose

Brother Kian got a spot. He added a few more – about 11 in total – that scabbed immediately then disappeared. We barely recognised it as Chicken Pox.

This must have angered the Pox Overlords and they went after Caitlin in a very big and scary way. This picture was taken after the very big and angry red blisters had started to recede no doubt due to Buddy’s cuddles:
They threw a skin rash at her, then a virus swelling her tonsils, and then came the huge Pox. All over her. Her palms and scalp and in between her wee digits. Her temperature soared to 41 deg and she became listless and without appetite.

All hope of having a pox party for her birthday (the night after her fundraising quiz) were dashed as her mum got an ambulance to take her to hospital – on her birthday itself, Saturday 13 July.

She only emerged from isolation in Croydon University Hospital last night. Her and Mum had spent 5 days in a roasting room without curtain to block sunlight, nor fan apart from our own supply. This hardly helped her recovery. The Pox was still creating new spots in the very few spaces they had left up until Wednesday when her temperature was finally brought under steadier control.
Now at home and on strong and frequent nasty-tasting meds, Caitlin can start to look forward to the party she had to postpone last weekend.

Thank you for all your kind words and support and for thinking of her. It’s been a very busy and worrying time and though currently off her feet, she is making steady recovery.

Quiz Nite Success!!

Published July 17, 2013 by Caitlin Rose

Quiz Nite Success!!

What a fabulous night it was!! Just look at the brainpower in these pics. Some brow-sweats almost needed minor medical attention. This was administered mainly in the bar area. 🙂

We had such incredible support from attendees, local businesses, organisations and individuals through their donations, kindness and enthusiasm. We feel very blessed to know and share our lives with such fine folk. Even the catering firm and his team contributed £50 to our cause.

The quiz itself was a close-run matter with a mere point or two separating winners from runners up once the dust had settled. Every team had their moment and indeed every team had their very own IKIR (I KNOW I’m RIGHT!) who no doubt still feels this despite getting stuff horrendously incorrect. Smooth-toned QuizMaster Ben McMullen (available for hire) and his very able assistant Paul Thomas (Outstanding St Peter’s Primary Headmaster) were ruthless but fair, the food quick and tasty, the alcohol drunk. A wide ranging set of topics bamboozled some and befuddled others but the jovial atmosphere was pleasingly maintained by all.

The Raffle results were intially dominated by two teams whose luck on the night seemed to know no bounds. But so great was the bounty that all eventually shared in the winnings. The Crystal Palace team signed Away shirt, was fiercely contested in the final auction.

Summing up the total of funds raised from the Quiz Nite, we are ecstatic to announce that an astounding £988.20 was raised!!! On top of that, Barclays Bank will be matching £750 of the total too!

Major contributors included Old Whitgiftian, FunctionFoods, ABC Imaging, Crystal Palace Football Club, Bagatti’s Restaurant, Cook (Sanderstead), Occasionally Yours Florist, Modern Time Chinese Restaurant, Croham Hurst Golf Club, Tanya Clarke, Emma and Jim Bean, Lucy Madz, Anne-marie Breanach, Kevin Breanach, Audrey Ford, Hadyn, Michael Bull, Olivia Harris and Katie McMullen.

Thank you so much for everyone’s support on this night and supporting Caitlin. It means a great, great deal to us and, we believe, to her future.