Syringe Driver Control

After the bad day on Saturday the syringe driver medications were upped. A huge improvement. He was happier and not as agitated during the day. It was nice to see some usual Ethan antics shine through. We weren't so lucky Sunday night. He was restless and agitated. Break through doses were required from about 4am. It was a long night but the medication worked and he was happy playing play station again in the morning. The syringe driver medications were increased again and the needle sited was changed. This combination seems to have done the trick with controlling the pain and agitation. He was a lot brighter and interactive yesterday. Fingers crossed he can hold off another deterioration and be comfortable like this for a while...

The girls are coping extremely well considering what is happening. Erin uses the avoidance technique a bit, using any excuse to get out of the house. She is a lot happier when Ethan is comfortable and not confused. They have a really strong bond so when Ethan is telling her to go away it is very heart breaking. She is talking about the past a lot and reminiscing. She is also questioning peoples behaviour. "Why are people doing this now when he's always been sick?!" She is very frustrated.

Adele is moody towards me but is otherwise nice as pie to everyone else. Having Aunty Em here is a good distraction. When Eth is not himself Adele follows Em like a little lost puppy but when Eth is happy she is there taking advantage of every window period of 'normal' Eth. She is a strong little girl.

The girls put in an application to Little Dreamers a while ago. Little Dreamers is a company that grants siblings or young carers dreams. We weren't too sure as to how long this would take or if their dreams would be accepted etc but it should go ahead. We will hopefully hear more by the end o the week. I haven't mentioned it the girls. Hopefully we can surprise them.