Been ages since I was last here - things been busy I guess.................cant really actually think of anything I've been doing that makes it busy but, hey, must've been doing something.........right???
Ryans seizures are the pits just now - his night-time breathing is also atrocious. We're trying to figure out how to adapt a sleep system - coz his spine is not great - that allows him to sleep sitting up or lying on his side..............supposedly the best positions for 'good breathing'!!!
Sooooooooooooo not the best positions for us to be allowed to sleep at night!!!
Just don't know what more we can do, we're now up to him at least twice a night to change his position or nappy - coz this boy can pee for Scotland - I'm shattered.........................
Add into that, trying to sleep whilst listening to horrible obstructive breathing or the dreaded noises of a seizure - but hey, who needs sleep eh????
The school doc is hopeful she can arrange some sort of multi-disciplinary meeting with all the experts involved in Ryans care. Not holding out much hope for success - each one either says 'its not their area of expertise' or says 'nothing more they can do'. Its totally carp being told 'yep there is a problem but we're not really gonna do anything about it'.
OK, I know they don't quite word it like that but its how it feels sometimes!! We also asked her to tell his neuro that he's started with his full-body thrashy type seizures again. This was last Tues and so far - nowt from anyone!! Its OK though, I'm sure its much more important that they can go home and sleep soundly at night...................sigh!!!!
On Thurs this week we're also in hossie for Ryan to get the endoscopy and biopsies done. Another GA - fun - gotta love 'em!!!
Right, that's enough moaning for now - that must be about 2 weeks worth LOL!!
It's starting to look a lot like...
6 months ago