Friday, February 12, 2010


We are finally settling back into home life. Ethan is getting himself from place to place around the home and is a little independent at times however most of the time he is demanding and requiring one on one attention.

We are lucky to have had Aunty Fi come for a few days while we were in hospital and Aunty Em is here for a couple of weeks to help with the girls while we try and settle in. Both Aunts have been a huge support. Thanks girls.

I usually never stop, always out and about from one thing to another. Having Ethan home has changed this. I am now restricted to how far I can go and when I can go. Lucky for us we have had heaps of friends visit so this hasn't had a huge impact as yet. I know people are worried that it is causing me to be more tired, I won't lie it is but if you weren't coming I'd most likely be lying on the bed depressed, sooking and moaning that I have no friends that care. I'd much prefer to be tired at the end of the day after seeing my friends. I'd also like to thank everyone who has sent messages of support.

I have managed to get some general 'house keeping' stuff done. The nurses are coming daily to change the syringe but it is up to us to make sure we have all the medicines. We found out one of the injections is not covered with Ethan's health care card so I spent some time chasing a loop hole to get around this. Luckily for us, the oncology team will cover it. I have also had the oxygen machine serviced as it is getting a bit more use now. We've filled out centrelink forms, not an easy thing to do on the best of days but when your tired they are a lot worse. Poor Luke copped the anger of that. We are waiting on a referral within palliative care for the air mattress as funding on this only lasts 30 days. We have rearranged respite as we now need a qualified carer. The palliative care team can provide someone in business hours only, so Sharon our care nurse is looking into this. Our case manager is organising a lawn mower to come as well as some volunteers to help out if we need them.

Ethan slept from 7:30 last night until 12:30 today. He woke very puffy and swollen but was refreshed and had a good afternoon. He was sore and irritable at times but seemed to recover himself with no need for intervention. He has also managed some food today. Not as much as normal but a lot more then recent times. Tonight we had cousin Shane come (and Nanny Judy and cousin Tara) Ethan put on the cheeky boy act. He was showing off trying to do handstands, and dancing. It was very funny. He was still confused jumping from thing to thing but he was happy so it was bearable and quite funny. He did fall in a heap and have some break through but it was still good to see some spark. I can't remember the last time I saw such spark.

Overall he had a pretty good day and I feel I have achieved some things.

1 comment:

Anonymous said...

Hi Jo, Cassie Kennedy here - your comments are such an amazing tribute to your strength, you are an inspiration. Our thoughts and prayers are with you and all the family.