Sunday 9th Jan

Hello,

In the last couple of days William has started having more seizures again and they are about every hour now, they are still just affecting his eyes and mouth but do look a bit different than before. We called the hospital tonight who have said to take him in tomorrow lunch time when the doctors finish their rounds so they can see him and look to increase his medicine as his weight has gone up since he started on the med. Hopefully this will help and it will just be a short visit because we really don't want any more overnight stays! We're really hoping to go up to Cheshire for Helen's birthday this week so really hope we still get to go!

Having a little kip on the floor

He has still been taking all his feeds orally for a few days now which is great! He's sleeping really well at night and we've been stretching out his night feeds. He loves to have play time on the floor and has been more awake than usual today having lots of fun swinging his arms around!

It often feels like we take a step forward with one thing, only to take one back with another thing. I think this is something we just need to get used to. It's about accepting the problems he will have and trying not to be disappointed when things don't always go as we wish and not letting the problems detratct from the things he does achieve. Yesterday he held his head of the ground for several seconds which was amazing considering, and we really think he is smiling in his own little way which is another thing he may never have done. Every little thing he achieves is a like a little miracle to us.

Please pray for us tomorrow, that they will be able to bring the seizures back under more control and we won't have to stay too long!