William's had a pretty good day, no forgetting to breathe today which is always a bonus. A few small short fits but better than yesterday. No trip to addenbrookes- just a case of crossed wires we think! He had his blood test results back which show there is room to increase his dose. He is now going from 5ml per kg to 8ml per kg. So this evening he had a top up of medicine to make his total today his new amount, if that makes sense!
Tomorrow lunch time he'll have his new amount which is more than double what he was on a couple of days ago. Depending how he takes that depends what happens next. If he takes it fine and the fits still seem quite controlled we might get out on Friday maybe. However, the higher dose might affect/effect* his breathing or not control his fits well enough in which case I'm not sure what will happen. They might need to try another drug or something.
This morning he got to go and hang out in the play room on the ward and the play assistant helped him to make a lovely painting for my birthday. It has his hand and foot prints on and is lovely (photo to follow at some point). Daddy helped him to write a lovely message to me on it and then this evening William sang Happy Birthday to me with a little assistance again from daddy. The nurse today said we could maybe take William down to the sensory room tomorrow which would be fun because he likes lights, it's about the only thing he's really good at looking at! He's not so keen on faces yet.
Not a less else to say. I've postponed my birthday till maybe Saturday or even a little later. Thank you for your texts and messages. Please feel free to leave comments on here if you can figure it out, it's a bit confusing!
Love H x
P.S. Although I can't see who's been visiting the blog I can see which countries we've had visitors from! So far we have the UK, USA, Norway, the Netherlands (but I dont know anyone from there!), Belgium, New Zealand, Australia and South Africa! It's quite amazing. We need a South American country next. Or perhaps a viewer from Antartica?
*delete as appropriate! (that's for you hannh do!)
 |
| A quick photo from the phone of the marvellous painting! |
 |
| A photo from the other day |
 |
| Chilling out in his moses basket |
Glad to hear you've had a better day. William was obviously informed of the importance of Jan 12th. Hope you've made it to the sensory room today. xx
ReplyDeleteYep hope you get to go and have fun in the sensory room! I love the way you are pretending that it is William who likes the light, we all know it is his lovely parents really!!!x
ReplyDelete