Thought i would update you with all that has been going on.
First the good news.
Beth had her first visit to the adult respite home without anyone from the children's respite home with her. Well she decided to stay the night . She had a few tears when she went to bed but fell to sleep and was happy in the morning. The staff were like bee's around a honey pot when i got there . Its a learning curve for them all and we have a couple of issues around her needs and their wanting to be out for long spells which do not work well with Beth due to her needing time out of her chair, medication and feeds. I have not said much yet as we have a meeting tomorrow. My view on it is if they want to take on more complex adults then they need to look at working around their needs
Second the bad news
Beth has lost another kg and has continued to do over the last few months. She has gone from a child's size 16 to wearing a 12 years olds clothes that are slightly a little large. . I have put up with them saying she will start eating or she is eating enough for over a year now. Its about time they fed her mainly by tube and look at anything she eats as a bonus. She is currently getting by on 700 calories a day with the odd mouthful of food that she eats.
We had a meeting yesterday. You would not believe what they were saying was an acceptable amount of food for Beth, try 3 to 5 teaspoonful . I sat and listened to the oh its behaviour or something is bothering her or lets try this or this and then i had my say. Well we now top up 400mls during the day and 500 at night. School and respite will top up just 200mls during the day with her 3 to 5 mouthfuls that should give her the extra 450 calories she needs . We have another meeting in 8 weeks.