Since we last wrote Activ8 has been and gone. It was a really great week with a really great team. Health wise William was pretty good for the whole week. He started being a bit sick half way through the week because he'd caught a cold, and in typical William style he had a cold and was sicky for about three weeks on and off after Activ8 but it could have been much worse. On Activ8 William went swimming for the first time and had his face painted! Here's a couple of pics:
Since Activ8 we've been pretty busy decorating the house some more and preparing for William's dedication which was last weekend. We had a really lovely day and were so happy that so many family and friends were able to come and join us for the afternoon. It was a joint service with two other babies so there were lots of people there and we had a big BBQ afterwards together.
Since William's three week spell in hospital at the end of May/start of June he's been doing generally really well. He started on a new medicine for his fits at that time called Keppra which might be helping a bit. He's also putting weight on at a slower rate now he's a bit older so is probably outgrowing his dose slower. His fits have been very few and far between since the start of June until this week. He's started having some fits where he goes a bit grey/blue which aren't fun but today seems to have been a better day so far so hopefully it's just another blip. He had a day a couple of weeks ago where he had a few fits and by the next day they'd stopped so hopefully they'll just sort themselves out again. I've only seen him have one so far today so we'll see. He is still having spasms regularly but in general they don't upset him too much so we're not really bothered by them.
He still struggles quite a bit with colds and seems to catch everything that goes around. When he does get a cold, because he struggles to clear the rubbish, they usually last at least a week and make him quite sick. Following his three week cold after Activ8 we agreed with the dietician to put him onto a higher calorie milk which means he now has less milk. This means we can usually keep him on 4 feeds per day and he only needs 150ml per feed. He does need additional water now but that's much easier to give him.
I can't remember if I mentioned before but William was referred to the continuing care nursing team at the hospital and has been awarded 5 hours per week nursing care in the home. We've now started using this and have an afternoon a week and an evening a month where someone comes in and cares for William so we can go out or get on with something else. At the moment we're still getting used to it and the carers are still getting used to William but I know over time it's going to be a great thing.
William now sees the physiotherapist most weeks so we have lots of exercises and activities to be doing. Last week he went back to the eye clinic for another check up. They were able to point out some positives but in general it's still obvious he's not using his eyes properly. Sometimes his eyes do react to things but not in the way you'd expect. He still doesn't look at people or toys if you wave them in front of him. It's not clear whether over time his brain will get better at interpreting what his eyes are seeing.
We are still waiting to hear back from the genetics people. We finally got a letter a few weeks ago asking for our permission for them to get William's stored blood out of storage so they can do some gene testing. Apparently there's some new technology allowing them to spot very tiny errors in the genes so they're going to be using this new technology to study William's genes. We've no idea how much longer it'll be until we get any results that mean anything to us. It's starting to get more difficult now waiting to hear. When we first had William having any more children was the last thing on our minds because we were completely over whelmed with looking after him. Now we're starting to think a bit more ahead it's becoming hard not knowing what the future holds. Because we've been told that William's condition was most likely the result of a one off change in a gene, in the back of our minds we're thinking it'll all be ok but every now and then we think what if it's not! We still have little knowledge of the options available to us if it's found that we are both carriers of William's condition so it's all a bit of a big abyss at the moment.
Appart from the fact that we've been busy with Activ8 and the dedication, I think the main reason we've not updated the blog is because William's been ok. When he's ok we can have something of a normal life and I therefore don't spend my whole life musing about the point of life! We're not all separated by hospital stays, we can take him out and about and we can usually leave him with someone that knows him well and not worry too much! This week I've really felt the difference between when William is ok and when hes not so good. When the fits which affect his breathing start back up it's very difficult to do anything and normal life goes a bit out the window. Thankfully we've avoided hospital so far but leaving with William with someone else seems out the question. Partly because most people wouldn't dare to look after him and mostly because I wouldn't feel comfortable leaving him with someone who doesn't know him as well as I do. His fits are often very subtle at least to begin with so I don't really trust anyone other than Steve or I to spot them all the time! We're obviously so used to seeing him that we can spot the tiniest changes in his breathing pattern or in his tone so we know when something isn't quite right. After his stop breathing episode back in May I'm very nervous to take him out anywhere when he's having these fits in case he pulls another stunt like that. It also feels like a really odd situation to be in - you have a baby who might have a couple of episodes per hour where he isn't breathing properly. This is not a situation most people would be in in a typical day so knowing how to act is a bit difficult. In a way in feels wrong to be out and about with him as if everything's normal when he's doing something that extreme but some days that is just 'normal' for William. It's a really weird sitatuion to be in. I guess there are other medical conditions where you might have a similar feeling. Getting on with normal life when you have a condition that is life threatening is a weird idea really. You feel like you should get on with life because otherwise you'll never do anything but you can't pretend everything's normal because it's not. I just find it a weird situation to be in when William is having that type of fits.
The other thing I've really noticed recently is about how much I want a holiday! Have you ever noticed how if you can't have something then it often makes you want it more? Well I'm not the sort of person that's used to a yearly holiday abroad or anything like that but this year I have been desperate for a holiday in the sun! Usually I'm not that fussed about travelling but I've been itching to go somewhere and I think it's because I know I can't! Taking William out of the country would be a logisitcal nightmare, I dread to think how much his travel insurance would be, how we'd get all his medical stuff through an airport and what we'd do if anything went wrong while we were away! When he's doing ok I start to plan how I could pull it off - I could get the consultant to write a letter detailing his condition and get it translated into the langauge of where I'm travelling to and if he started to have fits we could come home early etc. but then he has a bad day and I think 'there's no way we could do it!'. It's time like this I really wish someone would hurry up and invent teleporting! That would make a holiday in Spain easy peasy!
I've uploaded some new photos so if you don't have facebook the link is:
