A Good Week!

Just a quick one to let you all know what a great week Patrick is having. He isn't seizure free but developmentally he is doing really well. Up until a couple of weeks ago it was very rare to get any show of emotion from Patrick at all, he wasn't focusing very well and was generally not too good. At the moment all this has changed and he has found his laugh! He has a constant smile on his face and laughs at everything, even his own fits make him smile! As he is getting bigger, I have gained a lot more confidence with him and have started treating him a bit more like a 7 month old baby and have been playing rough and tumble (well, as he can't move himself I have been throwing him about!) and we've discovered he responds really well to being over stimulated, the rougher the better, this will really help with his physio. He has a wicked laugh and is really ticklish. He also responds really well to loud noises, I have been buying several different toys, bells and baby cymbals and he loves it.
He still can't hold his head up well but it is improving, his legs are like jelly with little or no control and his left arm is pretty floppy but we're working on it.

He has been on a slow increase of Topiromate and has been weaning off the steroids and although he is still fitting around 12 times a day, he is coping with that and so it seems to be a happy medium. The night times are a little worse, he tends to wake up around 2am then again around 5am with a fit that can sometimes last 5mins or more, we have been given some Midazelam for those which stops it instantly but thankfully haven't had to use it too much (it can slow down the heart and breathing rate so isn't something he can take often). In total with his fits then settling down again me and Martin are both losing a good 2 hrs sleep every night but as Patrick still can't cry, he just gurgles and chuckles to himself we can't be stressed with him. We spend the days walking round like zombies but we're happy zombies!

Other news - we managed to escape to the Isle of Wight for the night last Thursday, we joined Martins family who are over there for a holiday. We had a fab time and thanks to everyone taking care of Isaac and me we actually managed to relax a bit for a few hours at least so it was worth the stupidly expensive ferry fare just for that, plus we all got spoiled by family, which is always nice.

Isaac has settled really well into big school and is loving it.

We're back to see Patrick's neuro next week so will update then xx

Long Long Summer...

Hi All, Sorry again for the lack of information, it's been a very hectic month what with appointments every 5 mins and Isaac to entertain, it's been pretty tiring. Anyway, it's been a very up and down few weeks really. The last post I wrote at the beginning of August was quite positive as Patrick wasn't having any spasm like seizures. Unfortunately that didn't last long and just as we were becoming a bit relaxed he started up again. Thankfully he hasn't had any spasms that have been strong enough to distress him but he has been having about half a dozen a day which isn't good. We took him straight back to see his Neuro at Southampton who increased his medication to take into account his weight gain. We waited a week on the higher doses to see if that worked but unfortunately it didn't so it was then decided that they would put him back on the steroid Prednislone that he was on way back when he came out of his coma. They put him on a high dose and again we had to wait a week to see what happened. Not a lot changed so his neuro decided to increase the dose again and he's been on 60mg a day which is a massive dose. He was only able to be on this dose for 7 days as it can have serious side effects we have had to keep a close eye on his blood pressure and take extra care not to let him come into contact with anyone who is poorly as the steroid knocks out his immune system. So far all this change in meds hasn't really helped him. He is still fitting at least 6 times a day, he has had 2 EEG's over the last few weeks but they haven't shown anything significant. It is looking less likely that the seizures are all coming from one area as we were hoping because as predicted the patterns change with every scan. Hopefully he will have his repeat MRI soon so that may show something. Development wise Patrick is doing OK although it's swings and roundabouts as he can have a really good day when he seems really alert and is smiley and playful. Then he might have a bad day when his seizures are worse and then he regresses again and becomes jittery and loses his focus. He is very vocal now and likes to make his presence known, especially at 2am which is nice. One milestone he has reached is that he is now eating solids. He has a large appetite and a sweet tooth and although it can take a while to feed him, he does really well. If he's having a bad day with his seizures it's a bit more difficult as the concentration isn't there and he can't put the effort in to swallow much so we go to the bottle but that's not a problem.

We are back to Southampton to see his neuro tomorrow, he is having physio and occupational health on thursday. We now have an early support worker on board who helps us out with claiming the right benefits and makes sure we are aware of all the services available. So our diary is chocca at the moment.

The rest of us are all ok, I have joined a Pilates class to help me look after my back because as Patrick is getting bigger he is getting more and more awkward to lift and carry around. Billy did really well with his GCSE's he didn't get anything below a C grade and managed quite a few A's, considering his exams took place at the hight of Patrick's problems we are both particularly proud of him. Ashley is now looking forward to his year out, he is booked to fly out to his Mum's in Gran Canaria in November so that will be great for him. Isaac is starting big school this week! I'm not quite sure how I feel about this but he is quietly excited and a little nervous I think.

I will update again when I get a chance and hopefully have some better news.

Much Love xxx