Wow, nearly 3 weeks since we took out Faith's NG tube. It feels like it has been months and months. Some good news is that Faith has slept through two night's in a row and is more happy and willing to play more. She looks better and is stronger. Faith is being her cheeky self and definitely asserting what she wants at the moment, she doesn't want food. The UTI is going to play a part in her not taking food but it doesn't make it any easier to handle her rejecting food. She is eating a very small amount but just not enough. To keep moving forward we have introduced the spoon again in the hope that soon she will move on from her spoon aversion. Feeding dolly and the puppets are part of the routine to help her learn. We have a wonderful selection of spoons and cups, all different sizes, colours and textures.
Faith is taking her medications wonderfully at the moment, we just squirt them into her mouth and it is done. So easy! All we needed was to to trust Faith that she would take it and get used to that part of her routine and she is doing great with them. The medications taste horrible too so we are very proud of her.
We are using a visual time table and then have the pictures from the visual time table stuck around the house, the bathroom door, TV, playroom, change table, all those sort of places. I think in time it will help her communicate better but it is patience that we need right now. Patience that Faith will eat soon, patience that we can do this and patience with each other.