Hell, at least I finally sorted something out about it, I guess I can move it off my Things I Let Slide list? So anyhoo, I'm up, after a refreshing four hours sleep, have a short break before Lolly is up and at 'em (this was basically the good bit of my day). I've got Snail home due to the 14 seizures she's had since Friday, she's wasted and I'm pretty sure having smaller seizures most of the night.
The next paragraph contains lots of bodily functions. Just sayin', in case you wanted to look away for a bit, maybe imagine some ponies.
Everyone is up late (not me, no sleep for me, no way hahahahaahahaahhaaa *manic laughter trailing off into insanity*), nappy change time. I rip the first clean nappy (damn those soft fabric-y sides of the discrete pullups we get for Snail!), go get a second. Can't find pants as ALL the washing is back in the baskets of doom, clean, but forever sentenced to stay in giant piles in my study. Find pants after much cursing and rummaging and mess. Change Lolly, too (I really hope toilet learning is close on the horizon for Lolly!!). Shortly afterwards have to change Snail poop. Ten minutes later, Snail's ever so recently clean nappy explosively leaks pee all over my new carpet. Clean up pee, change Snail AGAIN. This is her third pair of pants and she's only been up for about half an hour! 10 minutes later, have to change Lolly poop. Sigh to myself and have small over it all moment. As I reach maximum "sorry for myself, woe is me," Snail promptly has another seizure, rather considerately after her morning meds but before breakfast (which has been somewhat delayed due to all the nappies heretofore mentioned). Snail passes out on the floor. Lolly and I try to go about our day, can't go anywhere as Snail is too floppy and unconscious, that's cool, have a home day. 10 minutes in to the fifth *awesome* kid activity I really, truly, deeply, wish that I had had more than 4 hours sleep.
Snail sits up. Get her into her chair, rush breakfast into her. It's 1pm, but hey, so what, it's not like the breakfast police are on patrol. *looks round nervously* At the end of breakfast, Snail has another seizure. Transfer her out of the chair onto the couch and put on TV. Lolly remains interested in TV for 3, 2, 1...about that long. Snail asleep crosslegged in a little ball on couch.
I spend the rest of the day doing calls to CP and epilepsy service providers as we've been meaning to get reassessments on stuff, more therapy, and new orthotics, as well as another EEG and hip assessment. Anyone who has had to make bunches of these calls knows just how awesome they are. "Hi, my kid's really disabled. Yup! Disabled enough to get on that program you have to be really disabled to get on. Sure, we can fill out ALL the forms. Sure we can get our GP to sign that in triplicate with unicorn blood and fax it to three different government agencies so you can start to begin to maybe put us on a list of people who might get considered for mention at a meeting you're having next June for funding. No worries! Thanks for that, I just love talking about it. No, that isn't a dying parrot, it's my three year old demanding fizzy water and corn chips, but thanks for caring!"
Get put on numerous waiting lists. Curse stupid lack of funds for essential services. Lolly spends this awesome time yelling instructions at me, asking for stuff, or crying. [Disclaimer, without fail, everyone I talked to today was lovely, sympathetic, and helpful. It's not their fault that they have no money, staff, or much flexibility. These are some seriously awesome peeps doing a friggin hard job. They rock.]
Day continues, DinnerDad thought he could manage a work from home afternoon, but couldn't, gets home relatively early, we try to sort a feindishly complicated plan for me to get a break this weekend. This is how: I'm going to fly self and smallest kid to Melbourne, driving to for 2 and a half hours in a hire car, to staying in a caravan park near my MUM (she's capitalised due to pure AWESOMENESS) - my parents are away on a big trip and aren't back til July and WE MISS THEM!! My MUM loves Lolly, and the feeling is totally mutual (Lolly has been pretty sure that every time we get in our car since Mum left, that we are going to see NANNA! She is often disappointed) and I figure I will get a couple of hours off to sit quietly by myself. That's pretty much the extent of my ambitions these days. Quiet alone sitting. Bliss.
|Lolly and Nanna last time we went "caravan-ing" with them!|
So, how was your day?