Tuesday 29th March

William has now been on his higher dose of steroids for a week and from tomorrow he will start to wean off them over the next 15 days. They do seem to have had an effect which is good. The fits which make him cry seem to have stopped, at least for now, as he hasn't had any of those since Saturday night. The other infantile spasms he was having involve his arms rising out to the side. Before the steroids he was having probably at least ten clusters of these a day lasting several mintues each. He now only has a couple much shorter clusters each day. We spoke to William's consultant today and our understanding is that the steroids were given in an attempt to almost kill off the infantile spasms, hence them just being given as a short course. She was really pleased the steroids have had an effect. It is hoped that now this type of fit has reduced they will not come back as strong or frequent as before, if they do we will need to try another medicine. We think that these type of fits are damaging to his development and if he continues to have them as often as he was they will halt his development. We have noticed in the last few weeks he has pretty much stopped smiling and laughing which can be one outcome of these type of fits we think! Please pray that as we start to come off the steroids the fits will stay at bay and even dissapear all together!

William has not been seriously sick for over three weeks which is very exciting to us! He is struggling with reflux quite a bit but reflux can be made worse by steroids so hopefully this will settle down a bit in the next couple of weeks.

We've now had three nights in a row where William has got very grumpy around tea time. Tonight we ended up putting him to bed at half 6 because he was crying so much. It's really hard to know what is wrong with him when he gets like this but we also know this is normal baby stuff! It's usually around dinner time and sometimes feeding him calms him down but more often he seems to be over tired. This makes sense to us on days when he hasn't napped well but on days where he's done nothing but sleep we're totally perplexed! Trying to establish a sleep routine in the day seems impossible when some days he will sleep all day and other days he refuses to nap at all. Thankfully he's a good night time sleeper at the moment so once he's down for the night we're usually ok and by the next morning everyone is happy again! I'm sure I've mentioned before, but it's a constant battle trying to decide what baby advice to follow and what not to follow! We have an excellent baby book all about getting babies in a good routine which makes total sense to us and I often feel guilty that we don't have any sort of routine established (apart from with feeding) but then I have to remember that William is so doped up with so many drugs that none of us get much say in how much sleep he needs and therefore on when we do what! I really wish someone would write a book for mums of babies like William!

On a couple of seperate notes, William was due a tube change at the weekend so we decided to take his tube out before we went out to church and put it back in after church. We took some photos of William (tube free!) with some of his friends at Church...

William has also been busy this week preparing for daddy's birthday next week. Here's a sneak preview of what he's been up to...but shhhhh don't tell Steve! Steve's banned from the blog until after his birthday. More photos of this next week!