Saturday, August 22, 2009


Wow! What a tumultuous week! Finally things are settling down after the media hype, and moving in to our new place.

For those who don't know, the main story to set the chain of events for this week is here.

Followup story is here.

And then, the wonderful family from Strategic Aviation and the meeting with them is here. A huge thank you to Rachel and Michael for such generosity. Such genuine, unpretentious people.

Ive had the good with the bad this week (calls, emails, blogs, comments, other media), but overall, I'm reminded of how supportive and wonderful people really are. Your offers of a shoulder to lean on, or an ear for listening are the most precious gifts.

I had some wonderful friends help me move, and my "sisters" helped do a little unpacking. The rest of the unpacking and getting organised in to the house is proving to be a bit slow. With everyone at school etc for a couple of days next week, I should have most things unpacked then. There have been other feelings of accomplishment though; Ive put together my first set of drawers from a flat pack! With no mistakes! I haven't worked out tuning the TV yet though, so the kids have been without a TV for a few days (but I don't think that's a bad thing).

We got a dog during the week also. A King Charles Cavalier. I wanted a companion-type dog for Joey, as well as one that didn't yap, and wasn't over excitable. Our Archie (short for Archibald Oliver) is adorable, and will never lack for company. He was a little unsure of Josh to begin with, but now...

Also in amongst all of that, I had the usual kids after school run-around, and appointments for Josh. We had a 3 monthly check-in with the rehab team, who followed up regarding Joeys recent botox and discussed the plan going forward, including our decision to commence Hyperbaric Oxygen Treatment. The next meeting with rehab will now be in 6 months. Also had another meeting with the paediatrician, who oversees everything that happens. She is quite supportive of us (that is, as much as medically possible), and is pleased about Joshy's general well-being. She checked his chest, and there are no "crackles" which is a good thing regarding imminent chest infections.

Medically, doctors are not encouraging regarding HBOT, but as there are no other real options, simply "making Josh comfortable" is not the right decision for us.


Anonymous said...

chin up take whatever you can if it helps you & that beautiful boy. I still can't read your blog without tears xx

Anonymous said...

I love the picture of Archie and Josh. The little dog is looking so longingly at him it is beautiful.

Liz and Ashleigh

Copyright 2009 Joshua