The play specialist called today - a 'getting to know you' visit. She was lovely and clearly cut out for the role. She offered all kinds of things that he might be interested in having a go at. Pads was communicating via his post-it notes, nods and gestures. 'No' to toys, gesture (he likes making things), 'yes' he likes lego. He says that whenever he tries to talk or swallow the tube wobbles and hurts his nose. Mum made a bargain with him: if he can get his weight up to 32KG (it was 30.2Kg yesterday which is a significant improvement but not enough to risk him not having a tube feed) he can have a break from the tube. He readilly agreed to this and so we're putting him on 24 hr a day feeds and water. The little back-pack that was supplied with the pump means that he can be very mobile with it which is handy. When someone is silent and they're usually so chatty, it is hard to think that they're not "trying to tell you something" but Pads is less complicated than that and we have to trust that he really is experiencing quite a lot of discomfort.
Meanwhile, we carry on with life: Bo and Asher's costumes are ready for 'book day' tomorrow. Sadly Pads is missing his last one. Here's a shot of Bo trying his mask on... still some work to cover the GAP logo with shaggy fur... Moli's newly learned calligraphy skills proved invaluable when making Bo's dog-tag...
No comments:
Post a Comment