Holly's movements

Random Holly shot.

Over the last couple of weeks or so, some of Holly's movements have become a bit more erratic. When sitting up, she's pushing back and her "spakky" eye (apparently called a "squint") is more pronounced than it has been for a while.

We're not sure if this is down to natural forces or a side-effect of her being weaned off her anti-seizure medication topiramate.

She seems to be going through a rough bout of teething again, and these actions could be a result of that, OR they could be some underlying physical issue that was masked by the meds.

She doesn't push back all the time, and it could be an effort to get out of a situation she doesn't want to be in (like sitting up? or having a really sore mouth?). It really is too soon to tell at this point.

We're just trying to collate some further information at this point before raising any alarm bells, but at the end of the day I don't want my one year old child dependent on ANY medication for any longer than is necessary.

We had such high hopes the medication had become redundant (she's due to come off them this week), it would knock the wind out of our sails a bit to discover the opposite is true.

2012 in Review

It's been quite the 366 days for our family this year. Utterly worthy of noting down for reference in years to come.

Q1 - Jan - March

This was our most tumultuous time. We had brought Holly home from the hospital days before 2012 began, and it was a year sold to us that would be unrivalled - Jubilees, Olympics - Britain would never have it so good.

Come February, we'd received the news we didn't want to receive, but really knew was coming - Emily got her Autism diagnosis. Close went the door with the small chance that it was really a learning difficulty, and we struggled to come to terms with our first born dealing with a life long condition.

Our little girl in ICU.

March saw Holly have a cardiac arrest and die for around 20 minutes. The vision of a blue, lifeless 10 week old child in my arms sputtering her last breath, mixed with blood is one I will never be able shake - as much as I try.

We spent a month in various hospitals - including a very tense week in ICU at Evelina Children's hospital at St. Thomas', near Westminster.

March also saw Emily turn 4, celebrating near Holly's hospital with all four grandparents in tow. Probably the first and only time this will ever happen. Speaks volumes of the "global community" these days.

Q2 - April - June

Emily as flower girl at Dave and
Amanda's wedding

Mere days out of the hospital and still on the rocky road to recovery, we all bundled over the sea to Northern Ireland for an Easter holiday - complete with local hospital and doctor details and medication for Holly.

As Holly's condition improved, the weather went in the other direction and we had quite a wet trip of it. A weather phenomenon that we're still experiencing in January 2013.

June found us in sunnier climes as we flew to Spain to celebrate the wedding of our friends Amanda and Dave. Not yet 6 months old and Holly is already a Euro-traveller! Emily was even flower girl for the happy couple.

Q3 - July - September

Sue and I celebrated our 40th birthdays during Q3 of 2012. Momentous occasions for both of us. In August, Sue took both the girls to Australia for three weeks to celebrate PROPERLY. Of course, the trips down and back were not without their peril, but they made it back and Holly added another 10,000 miles to her already impressive first year haul.

Emily in her new school outfit.

September also saw us move into our new house, complete with sizeable girl's bedroom. Holly, for the time being, would reside in Sue and my bedroom - mainly so we can keep an eye on her, but also so she doesn't wake Emily up at 5am.

Mid-September saw Emily start big girl school. We got her into the Rainbows Opportunity Base (that's fancy talk for "Autism special needs school") at Green Wrythe Primary School near St. Helier's Hospital.

Thankfully, as it's quite far away, we also managed to maintain the transport she had for Dragonflies, complete with the same escort - Claire!

Q4 - October - December

Sue's maternity leave ended during this quarter, and she went back to work three days a week. The other two were taken up almost exclusively with medical appointments for one or both of the kids.

Holly and Em had their Canadian grandparents come over and spend Christmas. Their first UK Christmas since 1974. They DID reckon a few things had changed since then - including the abundance of Christmas lights everywhere.

Dinner with Dads

Had a nice Christmas dinner tonight with dads of autistic children.

I was told years ago that you make your second set of friends via or through your kids. I think back to my childhood and some of my parents' good friendships stemmed from the parents of kids of my or my sisters' age.

Of course, I never thought in a million years, it would be friendships based on the common thread of disability.

We had a lovely curry as we got to know each other and our children a little better. It was an even peppered with poppadoms and tales of sleep issues, food issues, benefits we could get and where to spend our respite allowance.

It was a nice evening and even though our children were tucked up in bed, they were in our thoughts and conversation the entire evening.

Oh, and the curry was very VERY nice.

Nappyless Saturday

Woke up Saturday to the confusing site of Emily with trousers on but no nappy.

Sue and I surmised that she must have removed trousers and nappy and reapplied trousers.

Either way, we took it as a sign that Saturday should be nappyless experiment day.

I have to say that apart from a small leak, the day went really well. Sue and I were paranoid parents and popping Emily on the loo more than we probably should have, but we were happily surprised with the day's events.

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.

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.

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.

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.

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. 

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!