Well I have just managed to get the little man to sleep finally and have started his feeds via the pump. He is still on 800mls at night while he sleeps which we will keep this way for a while for his weight to increase. I must say I can't wait for the day that we get rid of this tube and night feeds. It's like having a new born baby for 4 and a half years getting up throughout the night. I get up at least 4 times during the night to make sure that the giving set (feeding extension tube) hasn't tangled around Jason's neck or hands or legs or pulled out his mic-key (which can be disasterious as the hole closes) so I am up a lot checking on him and then set my alarm early so that I can give him some water before he wakes up too. So it will be great the day that night feeds are stopped.
We just had a nice quiet family day at home, all had a lovely afternoon nap and just relaxed. During the day we spend playing with food, encouraging Jason to play and taste things. You just never know what he may try. If you have a tube fed child, I encourage you to keep food around them all day. Let them play with sweets and things which is also good for sensory touching and feeling etc. They may not eat now but playing with food will help them react positively to food when you do wean them.
Today Jason had ice cream, 70mls paediasure milk (via a syringe) which was happily taken and swallowed and of course the old time favourite ONIONS. He also tried nutella chocolate, cut and played with strawberries and tasted sugar.
It is great to see Jason reacting positively to food now. He will happily sit with a plate even if he doesn't eat anything, he is happy to know that the plate is his and if he wants something he can have it. He helped me cook the vegetables tonight - cut the onion, the beans and the strawberries. So he loves to touch and play with food which he never use to do before. All positive steps in the right direction towards our goal.