Hiya, as you can see from the picture Patrick has his new Mr Bump glasses, he's coping really well with them surprisingly and doesn't seem to bothered by them. He tends to knock them off as he's rolling around on the floor but that's all.
We had a busy week of appointments last week, first one was with Prof Kennedy, Patrick's Neurologist at Southampton. The appointment went well, his EEG results show some improvement due to maturation which is good news although there is still abnormal activity as well. As Patrick is so stable at the moment and isn't having seizures we're not going to change any of his meds, we've adjusted the regime slightly as he has been over sedated, by splitting his meds up across the day and giving him 3 doses instead of 2 it has made him less sleepy during the day and he's sleeping longer at night which is fab.
We went to Oxford to see the Dr regarding the Keto diet, she was really nice and after taking all Patrick's details agreed that would be an ideal candidate for the diet but is not going to put him on it now while he's not fitting. At least it's given us a good back up plan should his seizures return we know we can contact them at Oxford and they'll start the diet straight away. It's a lot less hassle than we had thought as well, we wouldn't need to go and stay in Oxford and there would be no need to starve Patrick for 2 days either, it's all done via e-mail these days!
We also had Patrick's swallow x-ray last Friday, by mixing in some special powder with his food and drink we were able to feed him and watch on the monitor to see exactly what he's doing with it. We were particularly concerned that he wasn't swallowing his fluids properly and thought they may have been going into his lungs. Thankfully though this wasn't the case and he managed to swallow every mouthful! His mouth action is a little disorganised, his co-ordination is all over the place but that doesn't matter, he's getting his fluids and food in properly so no need to fit him with tubes, great!! They were actually very impressed with his feeding, he usually has pureed food as he tends to gag and choke a bit with lumpy stuff, they tried him with a chocolate mousse with rusk mixed in and although he didn't eat it properly, he filtered all the lumps out and just swallowed the mousse, cheeky but clever!
It was a bit chaotic last week having 3 big appointments in 3 different hospitals but thankfully this week has been really quiet and we've been able to concentrate on Isaac a bit. He had his schools Easter bonnet parade this week so there were fluffy chicks and painted eggs everywhere!
The big abseil is tomorrow!! To all those who have sponsored me already, thank you so much. I know money is tight for everyone at the moment so every penny really means a lot. I'm starting to get really nervous now, I didn't think I would but I've been talking to a few other people who are doing it and they're terrified, I think it's rubbing off on me a bit! It doesn't help that the forecast isn't great, it's gonna be windy apparently, not good when you're suspended by a rope 120ft above ground! Anyway, I'm looking forward to meeting Kyron Bracken, Patrick and I will be having our photo's taken with him for the local press!
Anyway, that's the latest, I'll add some photo's of the abseil after the weekend xxx.
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