Friday 4th March

William has had a pretty good week this week after a pretty rubbish start!

Since we last wrote, his cold has improved and he's now not been sick since Monday morning! Very very pleased about this!

Last Sunday his fits got really bad to the point that if he was awake he was nearly constantly fitting. We ended up having to take him to the hospital to get his medicine dose changed. We've been advised that he will need to start being weaned off the phenobarb soon as it's only a short term medicine. He will need to be weaned off it over a matter of months as the body becomes used to it. They may introduce a third fit medicine during this time but this will probably knock him right out a lot of the time. He is due to have an EEG next Tuesday so that should give the doctors some guidance on what drugs might work best. He has several different types of fits now and different medicines control different types. Most people imagine his fits to be like an adults with convulsions but his are more subtle. They are getting gradually harder to watch though and upset us quite a lot at the weekend when they became so frequent. They have calmed down a bit this week but he does have several episodes each day.

Last week we saw the genetecist for the first time who advised us what will happen in terms of looking into the cause of William's condition. His chromosomes look good so they need to start testing his genes. You have over 30,000 genes apparently so they obviously cant test them all! Instead, they look at his MRI results and identify which genes are most likely to cause the pattern of brain development he has. They then test these genes. If they find a 'spelling mistake' in one of the genes they test, they will then test that same gene in Steve and I. If we both have broken versions of that gene then we would have a 1 in 4 chance of having another baby with William's condition. It could be that our genes are fine, in which case it is probably a random event. If they are unable to identify any dodgy genes in William they will then just have to look at other familes in our situation and see whether they went on to have healthy children or more children with the same condition. It's a bit complicated and it will take months to get any answers but we're very thankful to have this service and these clever people helping us out!

William has been a bit of a socialite this week! On Wednesday he went to rhyme time with his friend Rosie. Then on Thursday he went to our church toddler group with Rosie and his other friends Matthew and Luke. This morning William took mummy and nana Carlson to friendly fishes, a group at the childrens centre for special needs babies and children. It's just a small group but we enjoyed meeting some new people and are hoping to go regularly. We were also pointed in the direction of some other groups which might be good for us to attend.

Feeling optimistic!

I've been realising this week that raising a baby with problems like William's makes for quite a different experience to raising babies with 'normal' brains! A lot of baby books talk about getting your baby in to a routine now etc. We find that William's sleep is so determined by his medicine that we have no control over when he naps and for how long! However for the last few days we've been able to put him down to bed on his own at about half 8 so this is good progress! Of course, he has a very strict routine when it comes to feeding because he gets it down the tube at the planned time whether hes awake or not! We've also found that the sort of things most parents worry about are quite different than the things we worry about! It can make it quite hard spending time with other parents because our experience of parenting is so different already. Most parents worry about how much their baby is sleeping, how they are feeding, how to get them to sleep at night etc. We don't have to worry about William sleeping at night because he's so doped up he just sleeps half the time anyway! But we worry about whether his fits are making him turn blue, whether he's going to pull his tube out and whether his fits are bad enough to warrant a call to the hospital. We don't belittle other parents experiences at all because that is their experience, it's just that they are different experiences which can make it hard to relate and feel part of their discussions. As a Christian there were often times at school when friends would want to do things that I didn't because of what I believed. This could often leave me feeling quite excluded and left out because there weren't many other Christians my age around. Sometimes looking after William feels a bit like that in some ways. While other mums can get out to groups and make plans to meet up, we find it difficult to make plans because William's condition is so variable and we find it difficult to attend baby groups because to be honest it's a bit embarrassing when William starts choking his head off!

Anyway, enough of my ramblings, please enjoy the video below of the medicine song we made up! We have to amuse ourselves some how! The first few times we sang it to William he thought it was hilarious, but he has a serious case of camera shyness and went a bit serious when I tried to film him!

If you're praying for us (which we know a lot of you are and we are really thankful for), then please find below some prayer points:
 - Thank God for a better week, for Steve's work being really understanding and supportive and allowing him to work more flexibly, for the groups we have attended and the people we've met, for the un-faltering support of our families, for our contact at the charity 'Contact a Family' who helped us to fill in our DLA forms this week (and made filling in a 50 page form seem easy)!
- Please pray for William's fits, that God would bring them under control, that we would meet more people in a similar situation to us, and for the EEG next week, that the results would help the doctors know how to best act next.