Sunday, May 31, 2009


Been a long time I know... busy, tired, and poor Internet connections (ah-hem!).

Wow! Where to start?

In fact, more has happened than I can remember...!

The lovely Jo and Michael from the Samuel Morris Foundation kindly donated an Otto Bock Lars Paediatric car seat for Josh to use.

Eventually I found someone to put it in, and the best part was they they came to our house and it was cheaper than other places. (They're called The Capsule King). The actual seat swivels which helps when getting Joey in and out of the car. (When Josh has casts on his feet, his feet still get stuck on the door when I try to swivel him if he extends his legs, so this kind of seat is fabulous for vehicles with sliding doors).

Thanks Jo and Michael.

We had a follow up meeting with the Rehabilitation Doctor who is pleased with Joshy's progress, and noted that we appear to be managing Josh well. We also had a follow up meeting with Josh's paediatrician who said she was surprised that he hadn't been back in hospital with a chest infection. She suggested we stop using the Hyocscine patch to manage his secretions, and use Artane which can be given via his peg. We start at 1/2 a tablet for the first week, and gradually increase the amount each week until we're happy with the amount of times we need to suction him etc.

The other day (Tuesday?) before Josh was due for more casting, I thought I'd hurt Josh's foot; I was massaging his feet, and manipulating them to stretch them a little. I heard - or felt? - a little click, and he sort of twitched, his eyebrows knitted together and made sounds of distress. He continued to make sounds whenever that foot was pressed or moved a certain way. Thankfully, the physio took an x-ray to be certain nothing had dislocated, which nothing had, but perhaps I'd pulled a muscle or something. Not a good feeling (for me). The physio decided to go ahead with the casting anyhow, and before the meeting with the paediatrician, she checked to make sure his toes weren't blue etc, and decided to leave them on for a few more days.

Another major thing that commenced is that John and I now alternate the days we spend as Joshy's primary carer.

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