Wednesday, April 07, 2010


Ethan had an enjoyable stay at VSK. He slept extremely well Saturday night and even had an afternoon sleep on Sunday. Sunday night was a different story. He was up all night, finally falling asleep at 6am despite the nurses giving break through medication. We picked up a very tired and lethargic boy on Monday. The nurses made comment that they thought he had deteriorated while he was there. They thought he was becoming more lethargic over time. If we weren't picking him up, they would have called us.

He does appear to be more lethargic. But this also seems to be a good thing. He is not as agitated and irritable. For example, when he wakes during the night, he goes back to sleep quickly and he doesn't seem to be jumping from thing to thing as much. These changes could be linked to the dexamethasone being ceased. The needle sites aren't lasting now. We have weighed up the pros and cons of dexamethasone and have decided to leave it out and jab him daily if need be.

The girls received their dreams on Sunday. A pink limo arrived at the house at 12:30 and completely shocked Ez. She wasn't too impressed with being surprised but once on the road, singing karaoke and eating pink lollies she was fine. Once we arrived at the Hilton Sth Wharf we were escorted to the restaurant where Adele's bike was waiting. After lunch we checked into our room. The views from the 19th floor are amazing. Little Dreamers organised a great day.


Anonymous said...

So glad the dreams were great. Ethan is a fighter, always has been.
Judi & Rob

Ems said...

Good to hear Ethan had a nice time at VSK and you all had a nice stay at the Hilton! Would LOVE to see some pics of the girls & their Dreams gifts...
Love & Miss you all
Aunty Em x

Anonymous said...

Sounds like you had a nice time at the Hilton glad the girls had fun. Lobe to all Sandra Broadbent. Xxxxx