I'm struggling a bit now......please come and cheer me up!

[feelingbitfestive]

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

Thanks everyone!
I'm feeling a bit more normal today. Had a very lengthy hosp appoint (kept waiting for 2 hrs!!!! Grrrr!) and, as expected, vig increased again. DS is fast asleep on my lap now (spends a lot of time there lately) and snoring softly, bless him. I've got a numb arm but at least he is keeping me warm.
He is much better today, his voice is coming back and he is starting to shout and squeal, rather than cry all the time. He is still very sleepy, but this morning he was awake on his mat and seemed to be moving a bit more than he has done, and moving all his limbs too. I also feel that he is having short spells of real frustration. I hope this is a sign that he is slowly becoming a bit more aware, but I'm trying not to read too much into it. He is comfortable at the moment, and after 2 weeks of horrid steroid treatment, that's something I'm grateful for.

His Mum is better too, thanks to you lot and your jokes, though I am sorry that so many of us seem to be having a shit time.

So, here's my joke:
What's green and smells of paint?
Green paint.

Along the same lines:
Whats brown and sticky?
A stick!

You can see now why I had to ask for help !

I always loved that stick joke...
Another awful one which I'm SURE you'll all know:

My Dog has no nose.
How does he smell?
AWFUL.

A very tentative update.
Went to see neuro on Friday, discussed Gabes new symptoms. She was pleased. His 'new' symptoms are the same as his 'old' (pre-IS) symptoms, and she could see he was sitting a bit better (still crap, compared to how he was, but we'll take every little improvement) and I said he was becoming a bit more alert. Had another EEG, results on Tuesday.
Since then there has been real improvement. Clusters were down to 2 a day, but there have been none since teatime yesterday. He is also brilliant! Laughing and smiling and screeching. Cannot move well at all and still very floppy, but it is lovely to see him coming back to us. trying to stay grounded, but ! Will put some new pics up of the new smiling boy. Just the same, but a bit fatter in the face!

did my happy dance on facebook

soooo pleased