Thursday, 29 November 2012

Holly's neuro-review

Random shot - Holly enjoying messy play.
Sue took Holly up to Evelina today to have her quarterly neuro-review with the top people there.

She said the meeting was quite positive and Dr. Lim was happy to see the progress Holly was making.

He broached the subject of doing an MRI again to ascertain the actual extent of brain damage Holly will have. Just to be clear as well, there IS brain damage, the question at this point is how much.

The MRI done just after Holly's accident back in March was too close to the actual event to provide any lasting effects, and we always knew we'd have to do a follow up (or two) to figure out how bad (or good) things are.

Sometimes I con myself into believing there's nothing actually wrong with Holly and that Emily is the only child with "issues". Talk of MRIs to determine brain damage and the fact that Holly still can't sit up by herself at 11 months brings it all home in horrible technicolour.

I guess while others are wishing for their two front teeth for Christmas, we're wishing for a very limited amount of brain damage for Holly.

Wednesday, 21 November 2012

Sue's first day of work

Sue went back to work today. Maternity leave Vol. 2 is now officially over.

Consequently, Holly became a full time (well 3 days a week) member of the Busy Bees nursery collective.

Unfortunately for her, her first day is marred by a stinking baby-cold. Runny nose, the odd phlegmy cough and a LOT of mucus (she's also teething).

I've also taken her therapy chair, therapy table, prescription milk and baby Gaviscon round there as well.

Emily, of course, remains unaffected.

Monday, 19 November 2012

Reading up on Autism

When we're not dealing with it in a very intense one-on-one situation with Emily, Sue and I are reading up on , talking about or watching specials on TV about autism.

It's not taken over our lives, but we're very keenly aware how above and beyond we need to go for Emily.

Having said that, I've been reading with keen interest how they're dealing with Autism in the Halton region of Ontario. This is an area west of Toronto that encompasses Oakville and Burlington. Oakville, being one of the richer cities in all of Canada.

Their local newspaper ran a 4 part special on Autism - touching on various aspects of the disorder - diet,  financial hardships, how much more parents are required to do, etc.

Having read a couple of the articles, I'm exhausted by reading how exhausted the various parents interviewed are. Nothing in the articles paints a very rosy picture of the disorder, apart from that moment when a breakthrough occurs - which is just magical.

It's good to know you're not alone in being the parent of an ASD child, but I would give anything to not be part of the club.

Friday, 16 November 2012

Holly gone done be ill, like

She's been teething for ages and wearing all the hallmarks of that process like a trooper, but after last night it's occurred to Sue and I that Holly is actually ill.

She's been dribbling and having "pink cheek" like any teething baby, even a touch of warmth on her forehead. Last night though, she was restless, really really warm and kept hocking up all we gave her, usually accompanied by coughing fits.

Sue took her to the doctor today and she's actually got a chest infection. In the grand scheme of what we've endured this year, this is really nothing in comparison, but to see the usually happy joyful little Holly reduced to an exhausted listless mess is not nice.

I guess this is all in anticipation of all the wonderful bugs she'll pick up when she starts nursery properly from next week.

Sunday, 4 November 2012

Bloody nose.

Sue needed Em to go to the toilet. I think that's what started it off this time. She'd done a bit of stuff in her nappy and we needed her to get cleaned up.

The grizzling, crying and incomprehensible gibberish didn't stop until we were done with the loo and washed hands were being dried. 

To calm her down, I figured a treat was in order - an apple! I took one out of the fridge and proceeded to get Em to help me wash it. As we were washing it under the tap, I noticed it was covered in red. It was a freaky "The Shining" moment where I thought the taps were running red with blood. 

Oh no. It was just Em's nose. 

We quickly put the apple down, grabbed some tissues and proceeded to be serenaded by further crying, wailing and gibberish. After what seemed like eternity, two pieces of chocolate and  change of scenery Em finally calmed down enough to be able to wipe most of the blood from her hands and face. 

We did talk to the doctors about this previously and they think her membranes in her nose are just too thin which causes this. I would like to get this sorted, as it seems any amount of undo stress on her - whether real or imagined - ends up with a bloody nose as a result. 

Saturday, 3 November 2012

Fireworks night... an almost success

Today was full of activity .. for Sue, Em and I.

First we went to the Aussie Rules Football match at the Oval (a place that is hands down the worst signposted sport ground I've ever been to).

That went off without a hitch mostly ... Emily only freaked out on the train into town twice and that was tunnel related. We took her ear defenders with us, in case the game or fans were too loud and she was happy as anything to have them on. She looked quite good walking through the underground tunnels with them on.

With the afternoon's success under our belt, we felt reserved optimism that the fireworks night wouldn't be another complete washout; thinking that Emily's only "fear" was the horrific noise the fireworks make and that they would be countered by the ear defenders. 

Our first indication that smooth sailing was NOT ahead came on the walk to our chosen fireworks site - Carshalton Park. There were some individuals starting their festivities early and Emily could hear them quite easily, even through the defenders and was not amused. 

At this point, Sue and I knew we were in for a crappy evening. 

For the first few minutes of the fireworks, Emily refused to take her hands off her eyes, which obviously pushed back the ear defenders from her ears, completely negating any positive effects. We had a rug with us, and I figured system shutdown was imminent ... again, so let her lay on the rug. We put an afghan over her to keep her warm and she used the holes in that to peek out at the fireworks. 

The tide had turned. 

At times, she was even bold enough to completely uncover one eye to look at the fireworks. I told her how they were "sparkly" and she said it back to me. 

After the fireworks, it was time to light the bonfire. I took Em over to the fence to look down into the pit where the massive fire was. As it was lit, I could see on Em's face how transfixed she was. The thought "pyro in the making" did cross my mind, but who knows what she was thinking. The flames were dancing and cut a very bright figure against the dark sky and she could have been taking any aspect of it in - most possibly that for something so bright it was nowhere near as loud as the fireworks. 

We eventually retired back home and had some dinner, before Emily fell asleep in a pile on the kitchen chair. 

While the evening wasn't a COMPLETE success, the fact that Em left the fireworks awake was a major milestone!