Wednesday, May 6, 2009


Wow! We've had our gorgeous boy home for more than a week!!

You know when you go on holiday, and when you're there, it feels wonderful and different, but as soon as you return, to home and work, it was like you never left? Well, 12 weeks in hospital started to feel "safe", but now, it almost feels like we weren't even there! I think that's a good thing!

I haven't taken Josh shopping again, simply because with the amount of groceries I get, its quicker and easier to leave Josh with John. I did a huge shop Saturday, and a "top-up" today, so that's going okay.

We've been working out different things to position Josh on, other than his stroller. Until we receive some (funded) equipment (that our team at the hospital organise) (only one or two things other than the bed/mattress, wheelchair, ceiling hoist and shower trolley), we lay Josh on a lounge cushion so that it can either bend so he is in a semi-reclined seated position, or we can lay down flatter. John bought a banana lounge and we put the lounge foam on there in a couple of different positions. Sometimes we hold him in our lap, or lay him on the rug outside, while "exercising".

John also bought a monitor with a camera, so not only can we hear if Josh coughs, we can actually watch him too. Tonight though is the first time Ive really used it, because Ive put Josh in to bed earlier. Hopefully he is more relaxed and rested, and for a longer period.

Tonight will also be my second time of "night shift".

Joey normally falls asleep mid afternoon, and we just move him around and from room to room. In the evenings, we settle in the lounge room, and then John has been going into Josh's room around 9.30pm and sleeps on a makeshift bed. I'll look after Josh til about 12.00am, and then carry Josh to his bed. Sometimes Josh is restless as soon as I move him, and other times, a little while later. John sleeps as much as he is able, while keeping an ear out and tending to Josh through the the small hours, and I go to bed, and then we're all up at 7am.

So, tonight, we thought we would put Josh in to bed at around the same time as the other kids, I'm watching him via the monitor, and John is catching up on sleep. I'm going to bed (in Joeys room) shortly...

We had a visit from the company who we may be getting Joshy's wheelchair from today. We also tried something that looks more like a pram, but it doesn't look as supportive as the chair, and the Occupational Therapist also pointed out the pros and cons for each thing. She has also "loaned" a thick, foldable floor mat for play time. We have another meeting with her on Monday (or rather Josh and John do as I have an appointment with the Social Worker at the same time :-( ), and John is going to show her what exercises we do do, and get some more ideas on other things we can do, and get a bit of a "program" happening etc.

At the hospital, we got in to the routine of showering Josh every second day, mainly because the patch that goes behind his ear (that helps dry up secretions) is changed every second day, and we don't want to risk getting it wet or it may lose its effectiveness. I had showered Josh a couple of times by myself, and while its not exactly easy, I was glad that I could actually do it, considering the first few showers I couldn't even watch. I showered Josh myself here at home while John was out on Monday, and John did it himself while I was out today.

My big girl is closer to becoming a woman; she had her 14th birthday on the weekend. I made a cake from piled profiteroles, we bought some take-away (it was her choice), and she had a girlfriend stay over to watch DVDs and go on a bike ride. On the Sunday, while she was out, and John was at his dads, I tried to watch "Australia". Talk about an epic movie. It took 4 hours to watch it, because if it wasn't Josh (needing suctioning), it was Kayla or Kane! Lol!

Ah kids!

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