Thursday, 29 November 2012

Wednesday - post op day 13

This morning Rich and Chris took Daniel to therapy, while I stayed with Lucy in the hotel, to give her a bit of quality time. She is really missing her friends, and also the stimulation of school, and is also feeling the fact that Daniel is getting so much attention at the moment (despite our best efforts to balance it). She even feels it's unfair that we expect her to put on her own shoes and coat, dress herself etc, when we put Daniel's clothes on for him. That Daniel can't dress himself, and that is the reason we do it for him, doesn't make it any fairer in her eyes. Anyway, I was trying to give her some 'Mummy time', even though she then told me she had really wanted to go to the siblings' playroom! (She got her wish to do that later though).

So, I wasn't at the therapy session, but I understand from the boys that it all went well, with lots of firing at walls while standing and side stepping, more bike riding (and visibly stronger legs than yesterday), and also another go on the wheelie-stool (on which he had also improved).

Lucy and I caught the hotel shuttle to meet them in the hospital cafe after the session, before Chris and Lucy went off for a play in the siblings' playroom, followed by a trip to the 8th floor garden....

The amazing siblings' play room

The Olsen Family Garden on the 8th Floor

Meanwhile, Rich, Daniel and I set off to the 2nd floor for our appointment with Dr Tyschen, the 'eye man'. Dr Tyschen specialises in eye problems relating to cerebral palsy, and in our first meeting with Dr Park he suggested we may like to see him. We knew that other families had found him very useful, and also that UK children often return to St Louis at a later date to have surgery with Dr Tyschen. We also had several unresolved questions about Daniel's vision, and therefore we had decided we would like to go ahead and meet him. The appointment was fairly long and tedious, by the time they had done all their tests, including putting the drops in, waiting 30 minutes for his pupils to dilate etc. We then had our meeting with Dr Tyschen at the end. Ultimately though it was extremely useful.

He confirmed that although Daniel has a squint without his glasses, the glasses do correct it when on. With his glasses on he has very good stationary vision, and also has depth perception and 3D vision. In Dr Tyschen's words, Daniel has 'dodged a lot of bullets in terms of the eye problems he could have had with his CP'.  The problem that he does have is called 'gaze apraxia'. It has been repeatedly mentioned by Daniel's teachers that although he is in many ways good at reading, he has difficulty with scanning and fluency. We have also seen that he quickly becomes fatigued when reading, and Daniel himself gets very frustrated with what he calls 'word blindness', where he is reading and simply doesn't see a word until he has gone past it. I have raised the problem more than once at the eye appointments Daniel has at our local hospital every four months, and have basically been dismissed with the line 'His vision is fine with his glasses on'. Therefore it was great today to have it confirmed as a real problem, and unsurprisingly something directly related to his CP. In brief, his eye muscles move in the same way his arms and legs do, in that they are slow to react, and sometimes move jerkily. This means that scanning when reading is very difficult, and he will often move his head to compensate for his eyes not moving fast enough. His eyes will also sometimes jerk and jump forwards too far, which is why he misses a word. Dr Tsychen said he will also find reading very tiring. Anything that requires him to shift his gaze from one place to another, eg copying from the board, will be far more difficult for him than another child, and that's just in terms of his eyes, and ignoring the difficulties he has with writing etc. It's not something that they can fix, but he said Daniel will learn to overcome it to a certain degree as he grows older. From our perspective, as I said, it was at least useful to have it confirmed as a 'real' issue, and it is therefore something that both we and school can do our best to help him with, in terms of limiting the times when he has to shift his gaze, breaks when reading (Mrs E, I know you do that already!) and other strategies.

Dr Tyschen also said that Daniel would benefit greatly from laser eye surgery when older (but fortunately that's a decision we can put off for now) and we had chance to discuss the problems he has with recurrent styes on his eyes, and his suggestions to help. So, all in all, a useful appointment. Daniel was so wiped out by the tests, on top of the physio session that he actually fell asleep for most of the last appointment!

We were all a bit exhausted afterwards, and after a leisurely lunch at the apartment, Daniel and I gently went through his home exercises, while Rich, Chris and Lucy went out to 'Wholefoods' (a kind of Waitrose type shop), to get some more interesting food treats.

We have also continued to insert 'hidden physio' as much as we can, like....

....encouraging him to lift up his hands and balance while side sitting by letting him play on the phone.

......and only being allowed to play Angry Birds if high kneeling at the sofa.

Therapy is not until 11 tomorrow - so we get a lie-in! Great!!

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