The Prisoner

I think Patrick's first words will be 'I am not a number'. Poor little bloke is still in Southampton and still having seizures although they have been greatly reduced now. Reduced not only in number but (thank Goodness) in severity too.

As I have mentioned in an earlier post, he has now been put back on Vigabatrin and last night (Monday) this was increased to the maximum dose allowed for a baby of his weight. The result is that so far, since that increase, he has had only a handful of fits and Gemma says they are very mild. So that is a bit of good news and welcomed by us all.

Obviously I try to temper my enthusiasm with caution because as his Dad I want each new thing to work and can get carried away in my reporting of it and I don't want to mislead anyone. Albeit unintentionally.

To that end, Gemma asked Prof Kennedy what is next and he confirmed that this new dose also has to be given a proving period before we can decide to withdraw it should it fail to work. Gemma then asked if there was a plan B to which he smiled and said 'oh yes - don't worry'. So again, he manages to reassure us even when giving us.... not exactly negative views because he is just being honest of course - but I think that from a different person we could walk away from chatting to him feeling 'down' but somehow he manages to tell us very little, not always positive but you just know that you can trust him and that he knows what he is doing. If that makes sense! I think that if he wore a hat, I would be looking for the rabbit!

I was just about to add that this new dose has knocked Patrick out again and left him sleeping most of the time but having just spoken to Gemma (it is 23.18), she informs me that Patrick is now wide awake, full of the joys of spring - I know it is summer but blame the greenhouse effect - and is currently singing and wanting to play. Again, this is something to be grateful for but I am not the one who is up there with him, absolutely knackered and wanting to sleep. Tee hee!

We shall see what the next few days bring and hope that I can continue to report good news. From what Prof Kennedy said to Gemma today - it looks like they will be at the hospital longer term rather than just a quick visit. We had a chat about this and agree that we will keep doing what we are doing, how we are doing it. It isn't nice to be apart (those who know us well, know that we are a very close couple and genuinely enjoy each other's company and do miss each other quickly) but we have to do what has to be done for Patrick and there is no way he will be left on his own up there. When he was in the coma it was a different story of course because he was unaware of anything really but this time he is fully functioning between seizures and we just couldn't contemplate it.

Isaac and I get up to the Hospital daily and we manage to eat dinner together with Gemma (and Patrick in attendance) every day too so we have some sort of continuity for Isaac as well as for us. The big boys are obviously of an age that makes it easier to explain and they understand what needs to be done. They have actually been terrific throughout this whole period and have been supportive and supported. I am actually very proud of my little family and they are all my heroes - Paddy in particular, of course.

Well enough of me gushing about my wife and kids - that is not the point of this blog.

Thanks as ever for the support of you all and the understanding of those who have been leaving messages but not always getting replies. You know it isn't through ignorance but sometimes we just don't have the energy to talk about it when it has been a bad day. I guess that IS the point of this blog!

Much love to everyone
from all of us
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