For those of you not up to speed on my previous whingey posts, poor DS is still in the midst of his infantile spasms . After 2 weeks of 24hr screaming on steroid treatment (didn't work) he's now started on Vigabatrin. This isn't working either at the current dose so it will be increased tomorrow.
Poor DS is now hardly recognisable as my smiley happy little boy. He's gone from having massively increased tone on the steroids, to sleepy and floppy on the Vig. He doesn't smile or interract with us at all any more and to top it all off, after another night in hospital, he now has a croup like viral infection so he sounds like a wounded seal. Bless.
I know we are in for the long haul on this and I am trying to stay positive, but I am finding it so hard at the moment - just about everything seems to be going against us and with Christmas just round the corner, I'm feeling quite crap. Can't help thinking that we shouldn't be doing this - I should be taking him out shopping and spending stupid amounts of money on toys for his first xmas, not traipsing to the hospital twice a week to get him ever more powerful drugs.
Anyhoo, I've had enough of feeling like this - I don't want to wallow any longer. Peter Kay cheered me up last night, now its your turn! Tell me something funny and nice (or not so nice - gallows humour welcome too)
TIA x