Dark come soon

We've always tried to make bath time and the bed time a clear routine. The boy likes routine and is offended if we try to vary it. Such an important part of his day but another thing that is becoming more difficult for him to manage.

Preparation is required. First, his bedroom has to be prepared. Syringes, sterile water, feed sets, gloves and paper towels have to be restocked. Trachy tapes have to be prepared and the tape changing paraphenalia assembled. Then, stuff from downstairs has to come upstairs: the changing mat, the spare suction pump, sterilised nebuliser, bottle of milk and toys thrown downstairs in the morning. Then the bathroom prepared with changing mat, suction pump, nappy, nappy sack, wipes, alcowipe, new vest, pyjamas, glove, sticky tape, adhesive remover wipe. And the bath run. If I do it, I seem to spend so much time worrying about getting everthing ready that I forget to run the bath.

Only then does the boy choose who of his toys comes up to the bathroom with him.

After the bath we do trachy tapes. Then I hide and he comes to find me. We go back to his bed room and play throwing cushions, followed by pretend sleeping (Mummy sleeps and after a minute the boy pulls the cushion away from under her head). Then it's a story before bed. But it is harder for him to walk to look around now. And he struggles to properly throw the cushions.

Hard not to be focusing on the negative all the time. The wife is working hard to remain positive. I'm finding it much more difficult, seeing the things he can't do, rather than the things he can do. Must find a way to stop.