Little progress...

The past 2 weeks have passed in a bit of a blur. We've been giving Ross his drugs, feeding him and keeping him comfortable. Still no more convulsions, which is great, but during our last hospital appointment the doctors were concerned to see Ross's movements when he was awake. They confirmed what we had suspected following his last EEG, that his brain activity is not normal and that his brain is not developing.

When he is asleep you could swear there is nothing wrong with him, but awake it's obvious that something is wrong. We still have no confirmed diagnosis beyond a rare type of epilepsy and it may be that we never get a diagnosis.

It's been difficult, especially as Ross isn't responding to anything he sees and so is not responding to us. Fin continues to be great and is a very doting big brother, and we're trying to have as normal a summer as possible.

We should have been heading down to Chamonix tomorrow for our family holiday and for Rich and I to climb Mont Blanc, but obviously that has all changed. Rich and his family will be coming to Paris for a few days at the end of July and then, thanks to the doctors giving us an ok for Ross to travel, we're taking him to visit our families in UK.

We continue to hope to see some positive progress...