Patrick's Home!!

Hiya, been a while since I was able to update this blog as I've been stuck in the hospital for the past week but I am delighted to announce that Patrick was discharged from hospital yesterday. It would have been a day earlier but they wanted him to have another EEG before finally releasing him. Thankfully the EEG results showed no epileptic activity which is an improvement. There is still some abnormal 'slow waves' present but we're not sure what that means or how that might affect his development, if at all. We haven't been given a confirmed diagnosis or explanation for why this all started, all we have been told is that they are treating it as a vitamin B6 deficiency and will continue to do so unless he starts fitting again in which case they'll know it's not that. We have been given open access to Southampton hospital for 4 weeks and will have support from community paediatricians and physio-therapists. Patrick will have to attend a clinic in 4 weeks time and will basically be monitored as he develops. As he grows they may be able to do further tests that will help them confirm his diagnosis.
He has come such a long way in the last few weeks that it really is amazing to see him looking so well. He seems to be doing everything right at the moment, he focuses well and can follow an object as normal. He has started reaching for the toys on his play gym again, he smiles and is feeding well (still has to be positioned upright but is taking the right amount).
He is still on 6 different meds which is a bit of a nightmare for me as I have to prepare them all and give them at the right times, the pyradoxil is a particular pain as this has to be crushed and mixed and takes ages and he has to have that 3 times a day, the first one at 4am! Anyway, all this is a small price to pay for having him home.
We have become very paranoid parents but I don't think anyone could blame us for that, we are currently trying to find funds to purchase an 'all singing, all dancing' baby monitor that has a camera with audio so that we can watch his every move and look out for any signs of seizures from downstairs. At the moment I am putting him to bed in his cot next to me but can't leave his side, having this monitor will hopefully mean that I feel confident enough to leave him to it.

Anyway, I am off to have dinner with my family, something I have been missing a lot for the past few weeks. We will keep the blog going but won't be updating it daily, we'll update it as and when anything happens and will send e-mails out to let you know to check it.

Thanks for all your support and prayers, they have obviously been working. xx