Update

Bit of running around and worry over the last few days; Josh keeps vomiting small amounts and we're not sure why. He is given a reflux medication but there's obviously a problem. Today, they did a contrast study of Joshy's insides. His TP tube was pulled back to his stomach, and then they put a dye down (the feeding tube). Periodic x-rays were taken to watch where the dye went - whether it continued down the digestion path, or if it came back up. It came back up. And he even aspirated some into his lungs. The tube couldn't be replaced back to where it was (as a TP), so they tried again later, and now is back as a transproloryic feed.

It has been assumed for a while now that eventually Jojo would get a peg bag for feeding, but it seems he will get that in the next few days.

In the interim, he still has to receive nourishment somehow, and he cant remain solely on IV fluids, so his feeds have been restarted... fingers crossed for no yucky stuff!

Josh had x-rays to ensure his hips, pelvis and spine are in line, which they are. We have decided to start him on a med called Baclofen to help relax his joints a little, so that he doesn't become so stiff we cant move him or even do his physio exercises.

Josh also had extensive tests to determine if he can hear. Again, he can (he has "normal" hearing), but, like his eyes, his brain may not be able to process those messages.

He also seems to have developed a slight twitch of his neck/head (since last night), particularly when his head is to the left, so we'll need to ask about that.