We’ve had an eventful last 12 months!

First I had long service leave, so I we took a trip around the West half of Australia, which was fabulous.

Then Jai gained another diagnosis.. Lennox Gasteau syndrome. We started Jai on some new medication, since his seizures weren’t well controlled.. sadly, this made him lose his already skimpy appetite,. He lost over 5% of his weight and became as skinny as a crayon. At one stage, we started wondering whether we needed to move to PEG feeding. And immediately after this, decided to change his meds instead.

Luckily, this has worked and he is back to putting on weight and enjoying his food. In fact, more variety than he’s ever had.. raisin toast, tiropita (instead of spanokopita), vegetarian and meat gozleme, battered fish, and chips, to name most.

And back to loving his routines and agency..

Knowing that if he goes to Mum for a hug, he will get one (and then can ask for youtube fire trucks, or a bowl of crisps). Knowing that if he wants a walk (or bike ride), he only needs to bring me his shoes to let me know. Knowing I will read to him if he sits down next to the bookself. The swim routine - to the pool most Tuesdays after school. He will let me float him on his front for a while. Then walk up and down the pool. Then watch the bucket in the play area, and go down the waterslide a few times. Hamid’s (his childcare worker) routines. The brushing teeth routine (3 times, then offer him water). The sleep routine - put his bear on the bed, read a book, then cuddle with him while he falls asleep. The walks, the rides, the drives.

We’re adding new experiences bit by bit. We’ve gone to Werribee open range zoo for example, joining the safari minibus both times. On the second time, he seemed to look forwards to the ride in the minibus. Not sure what he thought of the antelopes, zebras, girraffes, ostriches, zebras, but at least he enjoyed the ride. He doesn’t mind the 90 minute drive there either, and enjoys putting the window down and up on the way.