Nothing to report

Hiya, sorry, no news to report just thought I'd better touch base.

Patrick's seizures or 'jerks' are still fairly stable, he's still having around 6 a day but he's tolerating them well, they're not too strong and they don't seem to be on the increase at the moment. We've had to put him on anti-biotics to try and help clear his chest. He's had a really bad chest for a few weeks now and at worst his caughing fits make him vomit so it's not nice for him. We've still not heard from the hospital about any more test results or when his next scan will be, I'm gonna try and get it touch with someone this week and find out when we're likely to get an appointment. I had hoped to have some news before his first birthday but that is looking unlikely.

The last couple of weeks have been hectic. We've had people coming and going every day which is a good thing really as we now have a social worker in place to help us who has been gathering information, also a carer called Pam from Julia's House Hospice is now on board so she'll be spending a few hours with us a couple of times over the next few weeks to get to know Patrick properly so she can then look after him at home for us if we want to go out and do anything.

Patrick had another Portage session this week as well which was encouraging. The good thing about Portage is that they focus on the positives and record what Patrick can do, not what he can't. We went through his record sheets and looked back to when he started last October and he has actually made a lot of progress in most areas. Sometimes the progress might be so small that it goes un-noticed until you sit down and go over these forms that ask simple things like 'can Patrick hold eye contact for 5 seconds or more?' Back in October the answer was a definate 'no' but now he has really good eye contact. Also, back in October he couldn't move off of his back, even with a helping hand, now he is always rolling over onto his side and can make almost make it right over, and before if you laid him on his front he couldn't move, he'd stay face down and would suffocate if you weren't there to lift his head, now laid on his front he can lift his head up and move it from side to side. He doesn't really like it on his front but it's part of his physio reigeme so he has to put up with it.

We're so proud of him for all he's achieved considering the year he's had, it's his 1st birthday on the 19th February which is unbelievable, it's been such a long year.

Anyway, as always I've got carried away, this was only supposed to be a quick one!

Hope everyone is doing ok, I would like to send best wishes to my friend Karen who has a son Luke with a similar condition to Patrick. Unfortunatley Luke has not been so good and has been in hospital since boxing day while the Dr's have struggled to get his seizures under control. They just took him home today though so hopefully things will improve quickly for them. Love to you all xxx