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Friday 20 Jul 2018

Bottox time again PDF Print E-mail
Written by Sally Fletcher   
Sunday, 01 August 2010 13:50
On 30th July Ben went for his latest session of Bottox.  He tolerated the anaesthetic very well and as he was only having bottox on this occasion and was first on the list he was able to be in and out of hospital in 7 hours which was great. Laughing I was upset that his consultant thought that he continues to have increased contractures in his muscles which the bottox can't help  Frown
Best Boy ! PDF Print E-mail
Written by Sally Fletcher   
Sunday, 25 July 2010 19:59
It's been a really busy last few weeks of the school term here, Ben has attended school for several extra events such as sports day and he particularly enjoyed an afternoon of country dancing.

Ben had a terrible pain two weeks ago, he wasn't screaming or crying but really curled up stiff, couldn't put his legs down and just kind of struggling abnormally.  After some advice over the phone from our brilliant GP's an ambulance came to take him to hospital as we could not get him in a position in which we could sit him in his buggy.

It turned out to be a severe urine infection that was giving him a bladder spasm, poor Ben I hate it when I find sometimes that something has been going on and causing him pain and it's taken for it to get really bad before I have realised.

The antibiotics he was given gave him terrible diahorreah, the worst I have ever seen and after 8 days he had to stop them, we've done a second urine test at home, that was fun.  We had to sit for 3 hours with Ben on his bed and a sterile bowl in hand ready to catch a sample until he finally went!  The things we do!  We should get the results tomorrow so hopefully all will be clear.

Yesterday Adrian and I renewed our wedding vows to celebrate 20 years as a couple. Happily Ben was well and the sun was shining.  Ben was our Best Boy with Harriet and Sam as bridesmaid and page boy, I hope to be able to update the site with some pictures soon.

I hope all our friends are well and have a healthy and relaxing summer as we hope to.

Best wishes
Sally x
Last Updated on Tuesday, 24 August 2010 06:47
Ben's New Head Quarters PDF Print E-mail
Written by Adrian Fletcher   
Sunday, 06 June 2010 07:53
Work is about to start on Ben's room (his 'Head Quarters' as it has become known). This work will involve
gutting his current bedroom, taking down the ceiling adding sound insulation, building an extention, putting in four new windows, a new bathroom (including a whirlpool bath), and installing a medicine station. It's going to be a long summer!
Spring buys PDF Print E-mail
Written by Sally Fletcher   
Thursday, 03 June 2010 06:15
In the hopes that summer will arrive and stay for a while in the UK soon I have bought Ben a couple of underwear garments from fledglings.  These garments are made to order, the ones I chose were like extra long T-shirts with poppers on the legs and I had them made in bright colours and quite long so that Ben can wear them like a romper suite!  He gets really really hot in the summer and I think this will help him stay cool.
From the brochure on the website Page 7 we ordered items 4a and 7a, the actual person who makes them got in touch with us, and although not cheap will give Ben something cool to go out in on those really hot summer days.

Another handy buy I think at the moment to mention is that B&Q have some led colour changing lights in-store in various shapes such as a ball, cube or heart. We got some for Ben to look at in his sensory room, in store in Norfolk I think I paid just £2.50 for them but they are shown even cheaper on-line in the link below -

Hope everyone is having a good summer?
Sally & Ben x
Last Updated on Thursday, 03 June 2010 06:25
Taking a break PDF Print E-mail
Written by Sally Fletcher   
Sunday, 09 May 2010 06:31
We just got back from taking Sam and Harriet to Eurodisney for 4 days.  The past two years we have taken them somewhere on the coast nearby for a weekend and left Ben in his home with his Grandma and the team of carers. 

It was a hard decision to leave the country without him for a few days but I wanted Harriet to enjoy some Disney magic before she got any older, I knew that Ben would not like the long journey or the long days walking around Disney and we are not allowed to take our carers out of the country.

I did miss him lots, especially when we visited some of the places that he had previously enjoyed during his own special trip to Eurodisney in 2006.

Sam and Harriet had a brilliant time and I never tired of the look on their faces when they met the many Disney characters, it was magic. 

Ben was fine he stayed in his own home with his Grandma (thank you Grandma) and Team B his own team of carers.  I had booked enjoyable activities for him each day such as music therapy, a treatment with his osteopath, family visitors and his weekly trip to school.

It is really hard to leave him but all the time we are trying to strike a balance for all 3 children, for Ben this kind of mini break is much preferable to him staying in residential care and between our mini break with his younger siblings and our 2 nights off a year he only has 6 nights a year without his parents but whilst still in his own home.

Taking a break is really important for the whole family and although it pulls on my heart strings every time I leave the house, even to go shopping, I encourage families to find a way that suites them to do so.

Sally x
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