- 28
- Oct
It has been a busy week all round. Danny is going from strength to strength, he is taking more and more steps with support and is trying really hard to pull himself up. He gets very upset if he is not standing, especially if you lay him down. He has learnt the art of getting what he wants by shouting for it. It’s a joy when kids hit this stage because they shout for you as soon as they can’t see you. It’s kinda nice but not when you want to get on with something!!! He has been a real super star and spend a total of 2 hours off his ventilator, some people felt he would never get below a peep of 8but now on a peep of 6 he has proven these people wrong. I hope those people carry on doubting our child because nine time out of ten he does his own thing and he will carry on proving them wrong. Tomorrow he is due to go down to a peep of 5 which is a normal peep however he had his RSV and Flu jab on Friday and has since been unwell, especially yesterday when he had a temperature all day. He was brighter today though although he was coughing alot and so wretched some, in the end we kept him unclamped so his bile output has been more and their was alittle old blood in it today because of the wretching. I have just rang to speak to his nurse and they said he is being a tinker and has dropped his sats to 78% which isn’t like him. These jabs have knocked him off his feet a little me thinks.
His discharge has been put back even further to march, don’t know what year yet though. I was told it was being held up by the PCT but now that apparently has changed since I rang the PCT. It is not down to them but down to the amount of time its takes to put people in the appropriate positions. This confuses us as the jobs went out on the 26th October and the interviews are sheduled for 23rd November. The people who will be employed in the home are grade 3 so will only have to give a months notice so that brings us to Christmas. I have also been told they can do their training in the home so in the day I ask, why can’t we be at home from January ’08′. Something just doesn’t add up about all of this. Also the PCT are not willing to deal with me which is a shame for them as that has made me more determined to go through them. Why have the monkeys when you only get anywhere dealing with the chiefs. We feel that these people don’t care that our son is being denied his basic human rights.
Last Tuesday we took Kyle, Bridie and Tommy to Blackpool, I tried to wing it for Dan to come but it was decided it was to far if something was to happen so he had to stay in prison. We had a really nice day, I got into an arguement with the dodgems man as he tried to take Kyles money and let another kid in his car who drove so I got Kyle’s money back for him. Rob took Kyle and Bridie on the big wheel which he said creeked a lot. It doesn’t suprise me as these rides look like they could collaspe at any minute. Tom went on the little wheel. All the kids went on a donkey ride before the lights came on. We went right to the top so took us an hour and half to get through. It was a great day out though, next year we will take Danny.
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