Hiya, the last month has been a bit up and down. Patrick is still stable but he has had a few more mild seizures. He's also had trouble with what seems to be leg spasms/cramp. About a month ago he was having quite frequent episodes of this, he would suddenly start really crying in pain and he would draw up his right leg which would be tense and shaky. This lasted for around 10-15 mins with him really distraught and then he'd relax and calm down. We struggled to find a cause or a trigger for the episodes as it came on so suddenly, we were worried he was having some kind of seizure as we've seen seizures before that looked like stomach cramp. Anyway, he was wearing his orthotic boots a lot and I wondered if they might be a little tight so stopped him wearing them, since then he's not really had the cramp so I'm hoping that was all it was. We have spoken to his neurologist who said it could well be seizure related, he wouldn't be surprised given Patrick's history but without hard evidence and catching an episode on EEG it's impossible to say for sure. We'll just have to keep an eye on it and if it starts happening again look more into it. He doesn't need to wear the boots anymore anyway as they weren't doing enough for him, instead he's having some special foot splints made to keep his feet in a better position and hopefully stop his toes curling under.
Patrick has been given a back brace and new arm braces now to help with his posture and help prevent his elbows seizing up, he's taken to them quite well bless him, with his leg splints and foot splints he's got no chance of escaping!
He was due to have his annual MRI scan last week but unfortunately he caught a virus, just a cold really but it hit him hard and he's not been able to eat properly for a week without throwing up and he's got no energy so I had to cancel his scan and wait until they send out a new appointment. He was also due to see his paediatrician as well but it's all had to go on hold until he's well again.

May was quite an eventful month, lots of family stuff going on, in particular my sister Sharon's wedding. As it was local it was a bit less stressful than other occasions, the weather was fab and the hotel really looked after Patrick's needs well. My sister had arranged with the chef for them to give Patrick the same meal as everyone else but for them to puree it for him, well, the chef really went to town and produced an amazing plate of pureed lamb presented on a dinner plate in a pretty pattern with garnish etc.. I've never seen anything like it! It kinda put my pureed slop in a bowl to shame! It was a fantastic day, a sensory feast for Patrick with bubble machines everywhere and he loved the disco, all the noise and lights and his Grandma whizzing him round the dance floor in his chair, he's definitely a bit of a party animal, when he's awake that is!

We're still trying to find the right balance of drugs to keep him awake, we have dropped his carbemazapine down a bit but can't really tell if that's done the trick because he's been so poorly. We're seeing his neurologist next month so will discuss it further then.

We had some good news regarding Patrick's standing frame. At last the NHS had a change of heart and decided they could fund it for him, as far as I know the order has been placed and he should receive it soon.

That's about it for now, thankfully things have been pretty uneventful, or maybe we're just a lot more chilled out these days. I do feel we are a lot more relaxed around Patrick now and we try to just take everything in our stride. Things are that much better that I've made the decision to go back to work at last. I worked a few nights a week as a youth worker before I had Patrick but never went back after my maternity leave. They left the door open for me if I ever wanted to return and I think the time is right now. I'm only going back one evening a week and on a volunteer basis to start with to see how it goes. I'm really looking forward to it though as it will give me a bit of time away from Patrick so I can be 'Me' again. I'll be working at Somerford Youth Centre, just waiting for my criminal records check then I can start. I'm also looking at joining a choir. For anyone who doesn't know me from before Patrick I used to sing lead vocals in various bournemouth based bands but again, haven't felt able to since having Patrick. Anyway, I found a local choir called 'The Funky Choir co.' who do all contemporary stuff that I like so I'll be able to sing which I love and is a massive stress reliever but without the pressure of being out front.

So that's about it for now, I'll update again when we have some more news following his hospital appointments.

Lots of Love
Gemma xx