Journal of Jackie

By Jackie18

Singing to Queen!

Overall not the best of days today, but it certainly had a high point. This was when I played Queen on the I-pad to distract Rafi from shouting at the other children to shut up.As soon as I started to play it he began to sing along and I was surprised how many of the lyrics he knew!! ( it is one of my favourite albums and I do play it very loudly at home!). Kevin the play specialist brought along some musical instruments so that he could play along which he did!
The low point was having to have his NG tube passed again. I'm still hoping that oral feeding won't be too far away, he munched on pizza through his mesh bag today. I feel under some pressure to agree to him having a 'peg' so he can be fed directly through his stomach wall, but I would like to avoid it if at all possible.
Kiera, Luke, Sue and Sasha visited today. Kiera brought along a large monkey from his room at home who he has named Arthur and has become very attached to( he was never interested in cuddly toys before )
Rafi has moments when he doesn't seem to recognise me which I do find difficult to deal with, even though at other times he obviously does know who I am and gives me lovely hugs. Today he said to me ' You're not my Mum, you're an imposter!' I'm hoping when he gets back in his home environment things will become clearer to him again.

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