Friday, February 19, 2010

School Visitors

It seems like forever ago that I updated the blog but it's only been 3 days.

Ethan was restless on Tuesday night. He was still sleeping but agitated and kicking his legs a lot. At one point he moved the pump and I heard a rattle. The syringe had come out of the driver and the tubing was disconnected. We don't know how long the pump was disconnected but after a few boluses he seemed happy again but it was the start to a long day. Wednesday was up and down. Happy one minute, in pain the next. A few break throughs were required however the pump remained at the same levels.

It is such a balancing act to keep him pain free and comfortable without causing drowsiness. At one point yesterday his speech was very hard to understand. I was having trouble translating for him. It was a very difficult and frustrating situation.

Ethan fills his day with DVD's and PS3. He demands someone to sit with him while watching DVD's and then he forwards to the funny bits. I don't think Aunty Em has seen a movie from start to end yet. I'm not too sure how I will cope with this after Em has gone back to England.

Today one of Ethan's school bus drivers and supervisor came as well as his current teachers. He loved it. They all brought goodies which have been a real hit. We spent sometime this afternoon completing a solar system puzzle and reading a Cars book. Thanks guys. He is tired now but it is worth seeing him so happy even if it is for a little bit.

I will try and put some photos on later.


Anonymous said...

Congratulations, you are doing a mighty job. Thinking of you all.
Judi & Rob XX

Anonymous said...

Your blog is an testament to your amazing journey. Thankyou for sharing the highs and lows of Hanley life. Always in our thoughts, Joan and Andy

Ems said...

I think I know the funny bits of Kung Fu Panda by heart now, pity I don't know what happens in the middle!
It was so great being able to spent that time with Ethan and the rest of you - just want to say Jo that you do an amazing job of managing everything and I wish I could be around longer to help.
If there is anything I can do from here let me know!
Love Aunty Em
(trying to stop calling myself that in London now!)