In the frame

Following the OT's assessment visit last week, more 'unwelcome' equipment arrived yesterday. If we were in the US all this would cost a small fortune but now we have two chair frames to select from. These add stable arm-rests either side of a chair or seat that does not already have one (i.e. the loo). Pad does not like these things - they remind him too forcefully of his state.
Last night he tried to swallow the 'P for Patch' reminder again. I'd made a really big one last time: it just about fitted in the dosette box cell. I made it robust using a square of the tough patch packaging. Needless to say, this 'did not go down too well'; normally it would not be safe to give the tablets again but on this occasion they'd not hit the bottom. We've reverted to large yellow paper 'P for Patch' stuck to the outside of the dosett box, so unless he tries to swallow the whole thing...

LATCH trip to 'The Sound of Music'

Carmarthen Youth Opera were performing 'The Sound of Music' this week at the Lyric Theatre and LATCH paid for tickets for us all. The LATCH party had 'nibbles' beforehand and then we were invited up on stage afterwards for a chat and a photoshoot with the cast. We are very grateful for the opportunity to attend and everyone thoroughly enjoyed it - Pads was still talking about it just before we said goodnight!

Putting the calendar to work

It being half term, yesterday, Pads took a trip to visit Dan, one of his old school pals. He was out for 7 hours, including a trip to the dentist and McDonalds for a donut.
I was looking around Pads room on Monday morning and noticed his certificate from the Ellen MacArthur trip last year. When I suggested he might like to go again, this was recieved with considerable enthusiasm. Then I thought, we should be using that calendar. A while ago, our nurse mentioned the word 'June'. That came as a bit of a shock, to even think that far ahead, but it occurred to us that living for the moment can wear a bit thin. Pads has a couple of dates coming up with the Brain Tumour Support Group and so I've penned these onto his Chick-fil-a calendar. This is positioned right in front of him and now displays some things worth looking forward to.
The dates in the picture are for sticky toffee pudding, which Ally's planning to make for a meet-up tomorrow night... also on Pads calendar, although he's unlikely to eat any of it.

Swear box

Today the play therapist visited. Pads had already declared what he wanted to do and it wasnt playing Skip-Bo. He finds it difficult to find the right words and he gets frustrated with himself when things come out with more venom than he'd intended. This is particularly true when watching a film. He's a bit like my dad watching the rugby. IF you were in the room, you didnt dare breathe! His siblings, however, chatter and make comments all through and this is irritating. Pads had the idea that there could be a type of 'swear box' that everyone could contribute to if they spoke up while watching a film, but also that HE would contribute to if he loses his cool. The exact cost of the fine is yet to be determined, remembering that Bo is especially short of funds, and Moli's got the job of decorating the box, so it could be a while before it sees any action.
In other news, today Pads was in very good form. He was with his mum in the car. While passing McDonalds she asked him if he wanted anything. 'Donut' came the reply and so he ate a donut. This has to be the single biggest 'meal' he's had in weeks if not months.

Back from Bluebells

We were delighted to be back home after a week away near Basingstoke at a holiday home provided and maintained by Sebastian's Action Trust.Being down in the South-East made it easier for Ally's family to visit too!
I've got a couple of video clips and a few photos from the week. The grounds look a bit sparce as it's clearly the 'wrong' time of year for greenery and it was cold. But this place is also just getting started... with a couple of years growth, these aspects of the property are really going to come into their own.