Hiya, had a quiet week this week but unfortunately not out of choice. My nephews Owen and Aiden have got Chicken pox and we spent the day with them during half term without realising they had it. As they were only just showing symptoms while we were there they would have been contagious and so there is a strong chance that Isaac and Patrick are now carrying the virus. So with that knowledge I have not been able to take Patrick to Julia's House or to the Hospital for his appointment and so we've had a really quiet week. It's a bit frustrating as we're having to cancel everything 'just in case' and there's no certainty that our boys will even have it but obviously as Patrick comes into close contact with very vulnerable children it's not worth the risk to them. I did manage to have a phone consultation with Patrick's neurologist, not much to report from that, we're still waiting on 4 test results but they wont be back for ages as the blood samples haven't even been processed for them yet. Still no date for his MRI so we're not going to change any meds or anything until he's had that, then we'll start taking him off the Vigabatrin. I told Fiona about the chance of Patrick having chicken pox and she was going to try and talk to Poole Hospital about getting him some anti-bodies that will minimise the symptoms, we know that Patrick's seizures get worse when he has a fever so I'm dreading the pox really, we have to see if he meets the criteria for getting the anti-bodies as it's usually only given to children who have a know immune deficiency, which Patrick doesn't really, fingers crossed they give it anyway.
It was Martin's birthday on Wednesday so that was a nice day, we went out for lunch and then went out for dinner Saturday night to celebrate. We had a lovely meal and as it's been over a year since we went out just the two of us, it was a real treat. Unfortunately as Patrick is still waking up at 2:30 every morning we are so sleep deprived that we were home by 9pm! We've decided that next time it would probably be better to go out for lunch as we might still be awake enough to make the most of it!
Some of Patrick's seizures have been a little more intense over the last few days so we've upped his night time dose of Clobazam. He's a bit more spaced out as a result but usually that passes after a few days.
Anyway, it's been a lovely Mothers dayand I had some lovely presents from my gorgeous boys.
It looks likely to be another quiet week as we wait for the spots to immurge, I'll let you know how we get on.
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