Friday, September 26, 2008
William has just completed his first week of school! As you can see in the pictures - he is a very tired boy! He is doing really well and has already read through nearly all stage 1 of 'The Oxford Learning Tree' books. His fine motor skills are a fair bit behind his cognitive abilities so his teacher and occupational therapist are exploring IT to help him record. It may be that his cerebral palsy or underlying genetic condition is impacting his fine motor skills but we will gently try to see if he can develop his writing.
He is very tired these days tends to lean on the table and play when he is flushed off his TPN. He no longer runs around very much. His tummy is very distended and gassy and he seems uncomfortable a lot of the time. We are bracing ourselves for the next line infection as these kind of symptoms do tend to come first. We have been saying that for a while now though and Wills is doing very well and has been home for two and a half weeks now! His record time home over the last year is 5 weeks so we will see if he can beat it this time - unless, of course, he is called for his transplant. He so desperately needs that now. He has bags under his eyes all the time and, although he can look well for him, he never looks really healthy. I want to see him running around again and I want to see red cheeks - we only see that when he has a high temperature!
The girls are away this weekend at 'Honeypot House' a charity that supports children whose home life is difficult, for a variety of reasons. They gives the children an annual weekend away at 'Honeypot House' - a place where children come back like bees to a honeypot! This is their second time going and they love it. It is very quiet here!
The pictures of William above were taken with my new toy. I had a meeting in London today and took the opportunity to take some shots. They were all white!!! I read through the instructions and realised the auto setting should enable automatic focus and exposure. My camera was doing neither - no lights, no beeps! At least I have learned to focus manually and I do want to learn to play with exposure and shutter speeds etc so I can manipulate them for creative effects but one thing at a time - for now, I just want to be able to take good shots while I learn it all and my lovely little camera was not letting me! So, off to Jessops I went to tell them it was malfunctioning. They had a go and agreed it wasn't working. It took them 2 mintutes to diagnose and fix the problem...lesson number 1 - how to put the lens on properly!!! So, I have re-shot the images on my 'arty farty' blog as it has been lovingly called among my nearest and dearest. The girls are getting into it. Their favourite photo so far is the one of syringes full of hepsol (used to thin the blood in the line when it it not in use and to keep it patent). Hope went so far as to rave about it being 'really cool'. Paul is not so impressed by these kind of images. I went to the Tate Modern today and visited the Rothco exhibition and a room with photos of all sorts, including close ups of bricks on houses and a corner with a mop and bucket. With the girls away and Wills tired enough to drop to sleep immediately, we should have plenty of opportunity for a grown-up conversation tonight. Perhaps 'what is art' will be a good place to start.