Sunday, September 27, 2009

A couple of weeks

Probably the most important thing that's happened in the last few weeks, is that Josh has been given the all clear from his Ear Nose and Throat Specialist, and also had a SPECT scan, before he goes to Melbourne at the end of this week with his dad, for Hyperbaric Treatment (HBOT).

Josh will be attending Hypermed NeuroRecovery Australia, which is in Melbourne. You can read more about what this treatment is and what is involved on their informative website here. He'll be there for about 3 weeks, with follow-up sessions every few months.

Josh needed to be seen by the ENT to determine whether his ears would withstand air travel (if that is how they would travel to Melbourne), and also if they'd be able to handle the pressurisation of the Oxygen Chamber. It was determined Josh has a lot of fluid behind his eardrums, and that these things would do no further damage, and grommets would not be required. So, in actual fact, that's a good thing, because that means no further delay in commencing treatment.

A SPECT scan is a lot like an MRI as far as how it is performed, but just shows different images of the brain. A cannula was put in to Joeys hand, and we were left in a quiet room for a while to relax him, then a kind of dye was injected through, and the lights were switched off and the door was closed. This was to aid in total rest and non-stimulation of Josh's brain. After about 45 minutes, the images of his brain were taken, and they will use those results as a measure for new scans that are done once the first round of HBOT is complete, in about a month.

I am getting a little nervous as the start date draws near, and I'm not even the one going! I am looking forward however to spending time with my 2 other littlies, especially because it will be the school holidays, and my 2 big girls are going away for a week as well.

Josh did brilliantly during swimming last week; I held him under the arms, facing me, lifted out of the water slightly, and I couldn't believe how well he held his head up!

I had borrowed someone else's car for the past few weeks (mine needed a new motor and I've been trying to decide whether to put money into another motor, or just a wheelchair modified car), and the car seat Josh uses in that was different to the one in my car, and his head tended to loll forward. Occasionally though, he somehow managed to put his head back up! :-)

And this is my spunky boy with his latest "do".

Saturday, September 12, 2009


SSS? Smiles. Swimming. Sadness.

Josh and I are share the bedroom, and Wednesday night while I was washing my face, I heard a "different" sound from Josh, so I went over to him and even though he was facing the other way, I could see a smile on his face. And he was making "noises". I stood where he could see me, and he continued to make sounds and smile for a couple of minutes while I talked to him! Then, he made this 3-part noise that actually sounded like a happy chuckle! I was so excited, it was a wonder I didn't wake the other kids up with my noise! I managed to get a photo, but this was after all the "big" stuff. Afterward, as I was talking to Josh about the photos, it occurred to me he might like to see them, so I showed him the pics on my phone, and it seemed like he was really looking at them. :-)

Thursdays are a busy day, with swimming for Josh in the morning and Kane in the afternoon.

Before swimming this week, Josh had to be fitted for new AFO's. A guy from orthotics basically casts both feet into the position that our physiotherapist is happy with, and makes AFO's from the moulds. They'll be ready in a few weeks.

Hydrotherapy was great; the water seemed even warmer. And Josh seemed to enjoy kicking his feet.
We even played "Humpty Dumpty"; the physio lifted Josh out of the water and sat him on foam on the edge of the pool, and when "Humpty Dumpty had a big fall", we jumped him back into the water.

At Kane's swimming, there's a lovely lady who's son actually goes to the kids school too. Her littlest boy is a couple of days older than Josh... The more I looked at him, the more he reminded me of how Josh was, even though he didn't actually look like him. The little boy was having the teeniest whine about not wanting to do something, and I could only see him from behind. Have you ever noticed your kids have a special look from behind? You know how cute their backs are, the back of their neck and the way their unruly hair sits? I was reminded of Josh, and could hear him in my mind saying "That dick-a-less" (ridiculous). The more I looked, the harder my struggle. Look, don't look. Look, don't look. I broke down. I couldn't help it. Where are the tissues when you need 'em? It was only a minute or two, but a staff member came over and asked me if I wanted a cup of tea or coffee, which was sweet, because I've kept to myself mostly. And I also felt bad because the mum had been trying to engage me in conversation. I know I don't really owe an explanation, but I think i will just briefly explain that I was just feeling a bit low, without going in to too much detail.

Bring on the smiles!

Wednesday, September 9, 2009


From time to time, Josh receives some beautiful gifts, and often from people we don't even know.

Here are two recently received.

The first one is a gorgeous and super soft teddy named Harold from a lady up in Newcastle, who read about Josh in the Sunday Telegraph months ago. This is the second gift she has sent. Thank you. :)

Secondly in response to this post about Josh and his vision, and probably being attracted by red, white and black contrasting images, Sherry, an online friend, coordinated some scrapbooking buddies to participate in making a red, white and black ABC book. I met with Sherry and her gorgeous boy last week to receive the book. It's is gorgeous! There's so much work and detail, and the photos don't do it justice! Some pages are interactive, or have texture, so Josh can feel what he's looking at too. Thank you Sherry, and to everyone involved (from around the world!).

And, here's a digi page Sherry did on Josh and Riley. Awww. (Yes, I cried when I first saw it). :-)

Tuesday, September 1, 2009


I still cant look through photos, and certainly wouldn't even attempt to watch a home video where I think I may see Josh... It's kinda ironic, 'cause I love scrapbooking and used to have an online shop (which I officially closed a few months ago), and obviously, most scrapbooking is done using photos and memorabilia. I wonder if Ill ever be able to scrapbook again. Ive heard it can be therapeutic, but I know I'm not ready to "go there". Yet.

I have 3 framed photos taken of my girls, from when they attended a Sibling Camp through Bear Cottage a few months back. Gorgeous pics. I put them on display on my cabinet. Of course, I wanted pics of my boys too. I bought a frame today, and, after some procrastination, I had a look through some pics I'd had developed at the beginning of the year.

It broke me, as I knew it would.

And then, when the dam burst, I couldn't stop. I rocked on the floor for 15 minutes. Well, really, I don't know how long I was there, but it was really hard. I chose a photo, put it in the frame, and don't know when Ill be able to look at it properly...

Copyright 2009 Joshua