Hiya, Sorry there's not been much up-dating over the last few weeks, we were waiting until he'd had all his appointments so that we had more to tell.
We had a busy week last week but a fairly positive one. We had an appointment with Patrick's Neuro at Southampton last Thursday. She was quite pleased with him, his seizures are still under control at the moment which is good. He's having no spasm like seizures at all at the moment, just the odd focal seizure, usually if he is startled or just as he is waking up. He has had no negative reactions to reducing the Sodium Valproate so that is good news. He is nearly off that now, just down to 1ml twice daily for the next 2 days then off it completely. They have taken some more blood to be tested, I think they're looking at his white blood cells but she said not to get excited as she's not convinced they'll find anything significant.
At least she's honest. Fiona voiced concern about his physical development, in particular his clonus (foot thumping). Apparently this should have worn off a bit by now but it hasn't so this may be a sign that he will have problems with his legs and feet in particular.
Patrick had his sight tested on Friday at Bournemouth hospital. We have been really worried about his sight and were expecting bad news as Patrick is still not fixing and following properly and sometimes he doesn't respond at all, even if you wave something right in front of his eyes. Something that would make the average person flinch or blink, he doesn't even seem to see. Anyway, the consultant gave him a thorough examination, or tried to as Patrick wanted to sleep through most of it which makes looking at his eyes quite difficult! It seems that Patricks eyes are perfectly healthy which is great, he agrees that something isn't right and that he does lack focus but this may be his brain not processing the info properly rather than a lack of vision. There are further tests that can be done to tell us exactly what Patrick sees but these will be done a bit further down the line. It is likely that his focus and vision will have been set back like the rest of his development and that it will just take time to get back to normal so he will be monitored closely and has to go back to the consultant in 2 months time.
Patrick also saw his physiotherapist and occupational therapist on Friday. They both had a good look at him and could really see some improvement from his initial assessment at the beginning of June. Patrick is still very behind with his development, in particular his muscle tone is still very low in his neck and shoulders which means he can't hold his head up and his arms are particularly floppy. In that sense he is still like a newborn so he is quite difficult to handle as he is constantly putting on weight and growing bigger. They have given us a special tumble form chair to sit him in that can be positioned quite upright, this should encourage him to hold his head up a bit and this will also be handy for when I start to wean him soon. They are concerned about his legs and feet, his feet tend to point inwards and are usually quite stiff so they've given us some exercises to do with him that might help loosen him up. He has to wear special insoles in his shoes to help straighten his feet a bit. His hands are also a worry as he tends to keep his thumb bent inwards so they may end up giving him a splint to improve that, he can't really grip anything at the moment so we need to work on his hands to encourage him to explore different textures etc. It would appear that his left side has been affected worse as his left shoulder, arm and leg is considerably more floppy and harder to control for him.
So, he still has a lot to contend with and we have lots of work to do to improve his development. No-one can tell us yet how well he might progress but we can see little improvements day by day. He is very smiley and happy and has a wicked laugh, he laughs out loud whenever the dog barks which is cute.
For those people who are registered on facebook.com there is some video footage of Patrick smiling and playing on my profile page. If you're not registered on there yet, if you register your details just search for my name and invite me as a friend, you'll then get access to any video's or photo's I upload.
Take it easy, enjoy the sunshine,
Love Gemma, Martin, Isaac, Patrick, Ash & Bill xx
