Keeping Sane in Isolation

So about 6 years ago, I was in a hospital ward, having just waved my husband and two daughters off on their trip to England for him to be a best man and them to be flower girls at his brother’s wedding. We were not allowed to go because ‘the doctors said’, missing the biggest event of my daughters’ lives up til that point and the trip of a lifetime.

These weeks were without a doubt the most heartbreaking for me in all of Jacinta’s leukaemia treatment. Before we cue the violins, let’s just remember that her leukaemia journey was a walk in the park compared with those who had the other kinds and especially those who didn’t make it.

We did get used to isolation though. Two different kinds. There was the isolation of the hospital room. Jacinta didn’t like me to leave. She didn’t like it to the extent that she would spring a high temp, her respiratory and heart rates would soar and nobody could fix it - except Mummy. Awesome ego boost but not great for being able to leave the room during waking hours.

Accordingly, I didn’t eat except what she didn’t finish throughout the day - which was ok if she was off her food, but not ideal if she was feeling hungry. If she went to sleep before 8 I would manage to get a meal from one of the takeaway places that make actual food. If it was after 8;45 it was McDonald’s or something from the little corner store. Tinned tuna and Kingston biscuits, that sort of thing. After 10pm it would be something from the vending machine.

The TV was on whatever would keep her amused. I started bingewatching How I Met Your Mother on my laptop late at night - I’m pretty sure bingewatching wasn’t even a thing at that point.

Overall, my favourite days were the ones when my middlest came in to spend  the day. Twice a week she hung out at the hospital with us. She would get bored but there were things to do here or there to break it up. That was my plan - to not become a novelty and to still be a boring mum who says ‘no’ half the time and has lame ideas for keeping you entertained. That’s where I found that creating pockets of time split up by meals and things that happen at certain times meant that you were only bored a couple of times a day.

Then there was the other kind. It was when you were well enough to go home, you just basically couldn’t go anywhere with people. Jacinta was the one in isolation, but I wasn’t allowed to leave, so by default I was too 99% of the time.

We didn’t see the inside of Chadstone for that whole year. (We did our grocery shopping there normally, so we were very much regulars) We went two places: school pickup and the park.
I think we might have made one concession and gone to Easter lunch, but it was still good weather then. By the time winter hit, we were turning down invitations left right and centre.

It was actually quite lonely, and it really did bother me after a time, because yet again we’d say goodbye to the other half of the family while Jacinta and I stayed home. It felt so awfully unfair. Not to mention that my husband was studying more than full time and working from home part time as well. I couldn’t work and being in hospital is expensive. There wasn’t a lot of cash to spare - is putting it mildly.

So the reason I bring this all up now is firstly because I realised what date it is, and second that one of the things I found when chatting in the parents’ kitchen at the Children’s is that you’d generally always prefer your crappy situation to the next person’s, and they think yours is terrible and wonder how you deal with it. So I’m telling you mine, so you can feel better about yours.

Also, we have the luxury of not being bothered about isolation. Been there, done that. We’re just whipping out the old routines etc and bunkering down like we did for that two weeks when whooping cough went through school. (We did some home learning then. Ad hoc literacy and numeracy. Kept things rolling.)

We did learn some things about isolation so I thought I’d pass on to you what I learned on case it helps. I’ve numbered them so you can get your kids to count them as homework when the holidays are over.

1. Keep connected.
We have the technology now. Skype, Skype, FaceTime, Skype and more Skype. We spoke as a family every day when we were separated, with the exception of the England bit. I was at the wedding, on my husband’s phone, - of course the video cut out right when my daughters were walking down the aisle...but I got a wave from the bride! I got to speak to a few loved ones at the wedding too,  and there’s a photo of me talking to my husband’s Aunty.  You can’t see me. She’s talking at his phone screen and I’m in the phone, but like the video of me at my uncle’s wedding in my mum’s tummy - I AM there!  There’s no limit on conversations so have as many as you need - even more than you think you need.

2. Don’t think it has to be boring.
So, I see people bought a lot of oats. That’s lovely, but if I’m going into isolation oats are one of the last things I’m buying up on. How many people are eating oats daily? When I thought about isolation, the first thing I thought of was chocolate. So I bought up a stash of chocolate. I then bought our regular foods with an emphasis on the plastic packaged meats that last a month just in case and I bought some treats. We’ve been having more fun foods since we all got told to stay home.
The other thing I bought up on was puzzles and games for the kids. This is the perfect time for everyone to master Cleudo. And remember, you can go outside. We went to the mountains to get out of the house here and there. We’d do a home made car spotting scavenger hunt on the way there.

3. It doesn’t have to be serious
When Jacinta had leukaemia there was very little uncertainty. 80% success rate, prescribed treatment plan. Tick the boxes, better. Done. There was the odd temperature here and there throwing a spanner in the works but apart from that it was planned and executed. There was no need to be serious, or freak out, or panic. Even when she got sick with paraflu and RSV at the same time and had to be on oxygen for the better part of a week (now that was never fun or straightforward - repositioning a carefully placed oxygen mask, not on her face, every time she moved overnight made for shattered sleep) we weren’t worried or panicking or serious. She definitely wasn’t serious. She usually got the giggles around 10pm. I always kept it light because as soon as the mood drops, so does the prognosis. We did RSV a coupe of times so we got used to that routine. It never got dull though. You’re allowed to laugh.

4. Love helps, a lot.
When finding the funny side didn’t help, cuddles always did. When it got tough, she just needed to know that there was a safe place and a source of love to recharge from and have a quiet moment.  Cuddles pretty much fixed everything. They still do. Whoever you’ve got nearby who loves you, cuddle them. If you have to be isolated from them, say all the lovely things to them over Skype - and maybe leave out the less lovely things that don’t need to be said. They can wait.

5. The rules change.
During 2014 I put on several kilos because I had to prioritise my sanity over my weight with limited eating and exercise options in hospital. I made that actual decision to work it out later and let my body be whatever shape it needed. I foresee a lot of ‘post-isolation’ workout routines and diets coming ahead. Whatever.
The sanity of everyone is more important than running a tight ship. The ship might be approaching the shore in a very wobbly fashion in a few months’ time. That’s fine as long as the passengers are having a good time. My girls got used to the odd day when they could watch all the TV while jumping on the couch eating a packet of biscuits. These were the days when I had not had enough sleep or was unwell and my parenting abilities were limited to making sure they didn’t starve and making sure they didn’t kill themselves doing something stupid.
As soon as they said ‘Can we watch Frozen?’ at 9am and I said ‘yes’, they would look at me hopefully and say ‘are the rules out the window’. These became known as ‘rules out the window’ days. These are days when you move the boundaries way out with the understanding that they’ll be back in place tomorrow. Just everyone needs a day off today.

6. Splurge.
I started finding ways to make isolation life nicer in some ways than normal life. We weren’t super flush, so I’d buy little inexpensive things that I normally wouldn’t. I discovered Wish.com - the home of some eye-boggling outfits and crazily inexpensive nick nacks and little toys. I had these coming from time to time and they would just arrive and the girls would get to see what they were and see if they were good or rubbish. If I couldn’t afford to buy yummy things I would bake yummy things.
This is one of things I’ve enjoyed doing this week which is buying little treats. We had cakes from the cafe which has now closed, last week. This week I bought flowers for the house for no reason, ice cream from the local Cold Rock for no reason. Things are not super tight for us yet so I figure we have a responsibility to spend where there are small local businesses needing support. These things make isolation more fun.
There are many ways you can splurge. Splurge on love and hugs. Share twice as many funny things on Facebook. Ring your mum or someone you love more often than you normally would. Call the people you haven’t seen in 10 years. Go on YouTube and see what crafty things people are doing and find the ones you can feasibly do at home. Actually make the Frame It thing from Mr Maker. You can be as decadent as you like with the good things in life. The best things actually cost nothing.

7. Look for the bright side
It was during one of these periods of isolation that I started Good News Friday on my Facebook page because I felt surrounded by doom and gloom. The principle is simple. You find the bright side to your week. Sometimes it’s hidden way down there, but with a bit of looking you can find it. Sometimes it’s up there singing from the rooftops.
Looking for the bright side gets you through anything.
I’m not saying it’s easy, but the more you do it the easier it is to do. The more you do it the less stressed you feel about the hard things. It takes the edge off.
Now that I think of it, I think I actually had that final scene from  Life of Brian on loop in my head during the tricky times. It’s a catchy tune, no doubt about it.

https://www.youtube.com/watch?v=SJUhlRoBL8M

                                                                ***************

So we’re all navigating this new thing which is isolating together. It’s a new fun way to isolate for us. Everyone else is doing it too, so they don’t get offended when you aren’t coming because they’re not even inviting anyone anyway. Everything’s cancelled, for everybody. Just about everyone has a new money issue to one degree or another and I have to say I’m not worried about the prospect of it anywhere near as much as I was when we were the only ones in that boat. There’s no shame in losing your job or taking a pay cut right now, when so many others are in the same situation. This time will pass and we’ll get there.

I wish you all a rollicking time in isolation. Done properly everyone should be saying ‘Oh, is isolation over? I was enjoying that!’ I hope we all start lovely new togetherness rituals that persist long beyond this isolation. And remember why we’re doing this, it’s to keep the hospital beds free for those who need them, many of whom live life like this most of the time.

Thank you for doing your part.

And the main thing to remember is that life doesn’t have to be completely different. My a capella quartet came into the hospital and we kept rehearsing. I had been asked to sing at the wedding so I asked my husband’s other brother to come in to the hospital and record me doing a version I created of the song, as a substitute for me being there. These examples can’t be recreated because of distance, but the point was that we got creative about how to keep going. Maybe your book club can video call.  My friends from school are talking about grabbing a wine and conference calling one night from our lounge rooms. Easter will be different, but my family are Skyping that one. You can still have your birthday, it;s just a new challenge about how you’re going to do it.

Life goes on. It’ s up to you how it goes!

Happy March!

Well, it seems I owe you two birthday posts and a whole lot of updates!

It’s definitely time we caught up. 

So where do I begin?

I think I’ll just show you the album and talk as we go...

So this is when Jacinta started school last year in January. She goes to a mainstream school and is in a regular class with funding for aides 75% of the time. The school funds the other 25% while she gets toileting sorted and until she stops running off. These things are improving all the time. 

This is when she graduated from Kindergarten in December 2018.(That’s preschool here.) 

This is when something hilarious was going on.  Hilarious things are often going on. 

This is after her tonsil, adenoid & grommet surgery in late 2019. Note correct use of cutlery.
We love correct use of cutlery!

This is yesterday. Wobbly tooth. Number 6 I think...
(3rd child,  not paying attention)

Still hilarious

Trip to Sydney last July took us to Mme Tussaud’s. J did loads of these photos.  Loved it.

First ballet concert! October 2018.
Jacinta has a love-hate relationship with ballet. As speech improves we’re continuing to troubleshoot  being part of the group and joining in, despite the enthusiasm we have right up until entering the room. I’m pretty certain it will be ‘that was because the room was too cold’ or something daft like that when we talk about it in 5 years’ time. 

7th Birthday! After a lovely birthday play date with her best kinder friend Millie. 

First excursion in 2018. This was a trip to The Very Hungry Caterpillar stage show and we went on the bus,
which was a big adventure.

In Sydney at the tower they used to call Centrepoint. Note the doggy backpack with a leash - I swore I wouldn’t go there, but we didn’t bring the pram to Sydney and I just couldn’t carry her everywhere. Honesty though, it has been a useful tool in discipline with regard to running off. I figure I’d get much more dirty looks if I let her run on the road and get squashed than I do having her on the doggy backpack.  Whatever. 

Jacinta was a flower girl for her Aunty and Uncle’s wedding  in November 2018. That was loads of fun. 

Someone will be blogging soon! This was from last year. 

We’ve had so many milestones. Lost teeth, dry days at school, 100 days of school, whole year at school, student of the week, birthdays etc.
First haircut....

This is the after shot.

School has been an interesting learning curve for everyone involved. He prep teacher was pleasantly surprised when she smashed most of the goals of her 6-month individual learning plan. We obviously know she’s intelligent but had no idea how learning in a noisy fast-paced group environment would go. She’s going along ok. She’s learned all her golden, red and nearly blue reading words (wizard words, google if necessary) so she can read basic readers pretty easily. I predict she’ll be reading this blog in a couple of years. Might have to go back and review what I’ve written.....

Maths is an interesting challenge, being a very abstract subject. We don’t talk about abstract much since it relies on more developed communication than we have got here. Thankfully the talking is coming along since the grommet surgery. 

Therapy has taken a backseat since I went back to full-time work. I have to work out getting her there, but might get the therapists to come to us instead. Life is very, very busy. 

So right now, it’s very like having a NT school child, but also having a 2-3 year old in some regards. I   suppose that it’s like having two children and will be until those skills are learned. As with all children, my job is to do myself out of a job. We’re definitely working on it! Jacinta included. 

Throwback for cuteness!
This was 2014 during leukaemia.
Glad that’s over!

5 years young!

Seriously, 5?!

I remember being at the bedside of my little baby Jacinta and hearing the words 'Down syndrome' and mentally writing off the next 6 years.

I thought it was all going to be lots of hard work.

Now, honestly, I probably could have been working harder than I have and Jacinta would probably have been talking and reading by now, possibly swimming and running races - or maybe not. Who knows? I may have completely burnt out and she'd then have no functioning mother at all, and no reading etc. What's the hold up on that alternate reality portal I ordered?

So this year has been a year of unsurpassed progress and development. Jacinta has grown into clothes with a 5 on the tag rather than a 3, since last birthday.  She has learned her alphabet. It comes and goes a bit so we need to be consistent with repetition, probably a bit more than for her sisters.
She has a huge number of spoken words and can understand everything we say if she's paying attention. She can respond to questions re her preference with a colour or a key word like 'bus' or 'chair'. She can sing 'We Wish You a Merry Christmas' with a few of the actual lyrics and most of the hand actions plus the tune.
She can see a spider in the bath and run away screaming 'aargh, spider!'.
She can answer the question, "what's your name?" and is working on the answer to "how old are you?".  She can count to five. (Sometimes the numbers change around a bit. Again, repetition!)
She will read a book with me and sometimes asks 'what does that say?' about the words in front of her. I LOVE that she wants to learn, because a child without curiosity never will learn.
She can dob, by name. Totally ready for 4yo kinder!

Still the key thing we're working on is speech, even though her words have multiplied enormously this year, and I think we've passed the tipping point where full language acquisition is inevitable. Still, she could have words clearer and she needs prepositions and to fully acquire the concept of time - like tomorrow and yesterday, before and after. I think her speech is somewhere around the average 2-2.5 year-old level. (Or, 18 months for her talkative sisters!) Her 2yo birthday twin cousin has about the same or slightly higher level of language I think.

We did have a lovely moment at the shops this week though. We have a little tradition in this house, which is that each child goes out a few days before their birthday and buys a new outfit to wear on their birthday, just because you can!

I took Jacinta out to find such an outfit and we went into a shop which sells appropriately sparkly and fluffy dresses and shoes. On entering, the shop assistant greeted us, at which Jacinta walked up to her and said something very lengthy with one word I could make out at the end, "dress". The shop assistant then asked her what her favourite colour was, and then said to me "did she say 'yellow'?". I said 'probably' and Jacinta said that she did indeed. She showed Jacinta to the yellow dress they had in stock, which she liked, then of course we had a look at the sparkly, fluffy ones, which she liked even more.

The shop assistant found her some shoes, which Jacinta was enormously pleased with and requested to leave on, so we just paid for the tag!

Then she said thank you and left, bag on her arm and shoes on her feet, watching her feet as she walked through the shopping centre. I've never seen her so grown up! She has never looked so five as she did that day.

So now we have a big year ahead of us. Sort the hearing, sort the speech and see what she really knows and doesn't know. Meanwhile, find a school and get her school ready. Time to get started!

Where did 6 er, 9 months just go??!!

So I went to write this update and I found a draft named "July already?" - uh, yep.

And then it was October.

So last you heard it was March and we had started kinder. We're well used to kinder now.
Since May Jacinta has been attending short-day child care two mornings a week as well. This is in a small room of up to 15 kids of mixed ages. It's perfect for her, because her abilities are of mixed ages. She fits right in!
I drop her off, she waves me off, gets stuck into it and then leaves giggling and laughing.
It's been very good for her speech. We've also started her at speech pathology sessions. The place we go to is fabulous. They build a relationship before they even start, then they go to a gym room and play basically whatever she wants to, building language as they go. Our goal is to have enough language to really interact with the 4yo kinder kids next year. I think we're on track.

Her language is improving so fast, we're now at a point where she and I can have a small conversation, back and forth a few times, and she will put three concepts together - oh, right, ok mum etc. She routinely orders her sisters around, 'come on Yaya, now!' or orders me around, 'Mum, sit down!'. Her language is of course much more varied at home than it is out and about, but she's 4. My children wouldn't say 'boo' to anyone in a foreign environment at 4. They'd come and whisper to me, maybe.

It's interesting to see how she goes in different places. It seems she feels more comfortable at child care than at kinder. I wonder if it's because they also focus on building a relationship with one carer above the others, according to who the child gravitates to naturally. It might also be because she isn't obviously different in terms of ability.

Anyway, what can she do?
Let's see.

She is very helpful around the house. She will empty the dishwasher for me, putting all the crockery and cutlery away in the right places.
She can walk some long distances now, and I can get away without the pram sometimes, if she's not tired.

Recently I had to go to the supermarket with her and I couldn't bear the running around that so often happens with little kids, so when she asked me if we could buy chips, I said that if she stayed with me, right by my side and didn't run off at all, we could buy chips. She totally did it. From go to woah, from the moment we stepped into the shop, she held my hand and didn't run off, was totally grown up, asked every couple of minutes again about chips - and I reiterated that we'd get them at the end if she kept holding on and staying with me, and she did it. That was such a win!!

We've made inroads with toileting too. I had tried to get her trained earlier in the year but we had issues with the actual toilet as opposed to the potty, and they don't have potties at child care or kinder.  Then a couple of months ago she started telling me she wanted to go. I sweetened the deal by letting her watch a toileting video on my phone, but then I got too comfortable and left her with it while I went and did something - and came back to find it IN the toilet. One new phone later and she's not allowed to touch it, so the interest has wained....need a new incentive. But we're getting there!

She knows most of the words to Let It Go - it had to happen, I guess.

She can put on clothes - most of them. She is a prolific painter.
She can turn on the TV and put a DVD on.
She can draw a circle and put eyes and a line in it and it's called 'Daddy'.
She sometimes goes to sleep in a big girls' bed - and has told me she wants a proper bed, not a cot.

The thing I find most exciting right now is that she seems to have taught herself the alphabet.
We were sitting on the couch and she was on Daddy's lap, and casually named every one of the letters on his SOCCEROOS top.
All that time letting her use my phone (not on the toilet) has not been a waste it seems.... (Starfall.com app is brilliant!)
She can now name - by name, by phonetic sound, or both - every letter of the alphabet. She can pair the lower case letter with its upper case equivalent. Not too bad for 4 with a year off sick!
 I recently found the magnetic fridge letters I've been keeping on top of the fridge for the past couple of years and gave them to her. She loves them!! Now we're in alphabet overload because one thing I know is that the more you do the thing you can do, the easier it is to move on to the next thing.

And what next? Swimming is the next thing. We'll see how that goes.
Getting ready for 4yo kinder, which is two full (longer than school)  days a week.
(More free time for Mummy....)
Maybe possible sleep apnoea - still waiting on the appointment for that one.
Then seeing if we think another surgery is the right option. I'm really hating the thought of more surgery for something that's not life or death, especially when she's well old enough to resent us for it and maybe not appreciate the difference it makes. We're now up to really assessing how much something will benefit her - in her estimation as well as ours. She is alert and paying attention. If I say something she is interested in and she doesn't get it, she'll ask me to repeat myself or get a further explanation - and then I'll get an 'oh, right'. She cares. The stakes are higher. We'll see.

But for now, the weather is warmer. Dresses and skirts are the flavour of the month. Swimming is one of her favourite pastimes. She's looking forward to her birthday, and would like a party at the pools, not the hobby farm. (We might have to negotiate on the pools, for 4 year-olds!) And we see whether she'll learn to read fluently or talk fluently first!!

And then it was January!!!

Birthday post coming up!!!

21st of Trisomy 2017

Golly! It's our fifth 21st of Trisomy with Jacinta in the family.

I find it amusing that my attitude to the whole business changes with each passing year, as my perspective changes.

The first year I didn't even know it was on and the next year she had leukaemia, so I didn't care. Then the next year I blogged early, then I think last year I actually blogged on time! So here I am, theoretically blogging on time, though it's still early in the day and anything might happen between here and the next paragraph to throw me off course until tomorrow.

So instead of waxing lyrical about some very important and serious topic, which I actually started to do and then deleted the whole thing,  I'm going to share my favourite two videos which were made just for today.

https://www.youtube.com/watch?v=o0VV3C_ydak

This one features teens with T21 showing you, graphically, what exactly a Trisomy of the 21st chromosome is.   Highly enjoyable and informative, if slightly disturbing.

https://www.youtube.com/watch?v=kNMJaXuFuWQ

And this one is the super cool video that just cannot be explained. Not so much informative as hilarious.

So, how's kinder going?

Now that's a question!

It finally arrived. The day was finally here. Jacinta was starting kinder/preschooll!

Up until the day before she would answer 'yes' to being excited about it. The night before, we started to get some shaking of the head, some 'nooo', and on the morning itself, she was slightly inconsolable. (Because, no, inconsolable is not an absolute....)

The subject of kinder was banned, by an emphatic 'no' and a face palm any time it was mentioned - by anyone, all day - which is a tricky situation when everyone you see knows it was your first day and wants to know how it went!

I really did want to get that shot of the kinder kid with her bag on, leaving house - or entering kinder, hell, even leaving kinder - anything! She pretty much refused to touch her bag the entire time. There was one moment when her hands did make contact with it, when she put it in her locker. It was such a quick moment, I got this photo....

All done!

So from then it was fine. She washed her hands, went to the painting easels, put on a smock, did her first masterpiece, then happily said goodbye to me.

Unfortunately about half a dozen other kids were all going off at once, crying inconsolably (an absolute, in this instance), so when she had the wavering bottom lip as I neared the door, she lost it. I waved her goodbye through the window, as I had done with my middlest, but it didn't do the trick.

An hour later when I was having coffee with another mum whose son was also there, I noticed I had just missed a call asking me to come back because she'd been crying the whole time. I called straight back only to be told she'd now cried herself to sleep (awesome) so we decided I'd wait on call and see how it went. It was only another hour til pickup.

When I arrived back she was still in the arms of an educator but not crying, so that was something.
Here is she ready to leave.....

AKA running for the door....

The next couple of weeks were less upsetting each time. She was still upset at me leaving, but got used to it more and more quickly.
Then the next week the educators decided to begin the day outside - and everything changed!
Straight out, hat on, 'bye Mum', no tears, and off I went. Two weeks of that and it appears we're all settled in. Time will only tell.

So she's loving the arts and crafts and the home corner. No surprises there.  By all reports she is doing what all the other kids do - most of the time. She has been caught trying to let herself outside to the playground once or twice (no surprises there either), but has come back to the group without much fuss. She knows the routine, comes in, puts her lunchbox and drink bottle on the trolley, puts her bag in her locker (I was impressed that she remembered the number and/or the picture on hers without any prompting), uses the toilet, washes her hands and off she goes. At the end of the day she goes off and gets her bag - and anything that's fallen out of it - and brings it back to me which helps reduce the crowd around the bags.

And with friendships, I guess we'll see. Only a few of the kids are actually talking to each other from what I've seen so far, so we'll see how it all goes.

And, you'll be pleased to know, I did get that picture - eventually!

4!!

Where did that go??


I swear it was not four years ago that I sat in a wheelchair in the special care nursery and heard the words 'facial features consistent with Down syndrome' - and wrote off the next 6 years of my life.

Honestly, I don't think I shared any photos like this at the time - too 'clinical features'! 

What I thought was that I was putting life as I knew it aside, settling for a tough life of hard work and no fun, for at least the next while.

Because, let's be real. If there was a magic pill that would undo the effects of the Trisomy on Chromosome 21 (and it was completely without side effects) we'd grab it, no questions. As far as we're concerned, if Jacinta had a body that worked properly it would be much easier for her true self to shine through, without being hampered by difficulties all the time, which from all appearances is incredibly frustrating. (There's a lot of screaming going on lately. It'll pass....)

So looking back on the past four years, I can see that it's been completely different to what I expected. The first 9 months or so were fairly predictable - it was rough trying to get her fed for the first 3-4 months before the heart surgery and it was hard to live with myself, putting her through it - no matter how much it's for her own good.

Still, those first 9 months were miles better than I expected. I remember when she was going off to hospital without me, waving her little hand, I had high expectations for her. Then when I first saw her in the new hospital the next day, she was in a fog. She was all floppy and sort of bloated, and barely conscious. I really couldn't see who she was, which made it difficult to relate to her. I was expecting a hard slog.

I remember being so pleased during that first week when the Intensive Care nurse who'd been looking after her mentioned that she'd been hiccuping quite a lot, and I was able to say "Yes, she does that a lot." because she'd been doing it all the time in utero. I think that was the first time, during those first few days when the nurses had spent more time with her than I had and knew her better than me, that I really felt like we did know each other and we did belong together.

Then it was a few days later when Maria came to do NAET with Jacinta in the hospital and after a couple of treatments, it was like the lights switched on and she was open for business. At that point I could see she had a sense of humour, which is really all I require in a child of mine - that and a good capacity for conversation.

And now we're here! Where on earth did those four years go??!!

So Miss Jacinta is now about 88cm tall and around 16kg (metric system) and is walking and doing the trotting run that toddlers do. For her birthday she got a balance bike. She has a love-hate relationship with said bike, which is awfully cool and exciting, but seems to buck her off when she's wearing a voluminous dress or no shoes. Work in progress.

This has been a very exciting Christmas. Not only did she choose presents for her siblings and parents (as she always does), but she was able to say who they were for - because she can say all of our names now! My middlest and eldest shall henceforth be known as 'Yaya' and "Eneminee". Not only that, she hid them in her room, wrapped them with a little help (sticky tape) from me when no-one else was looking, put them under the tree herself and - left all the presents alone!!! I couldn't quite believe it but for the first time in many years in our house all the presents sat under the tree for several days and not one was cracked open even a tiny bit!

Her speech is taking off again - possibly due to the hearing device, although she's not wearing it as much as we'd like since it's been a bit problematic with feedback and less effective when turned down. I'm now noticing that the burbling utterances she makes at appropriate times more and more sound like appropriate phrases - and when I get them right (such as this afternoon at the supermarket when she pointed to a favoured grocery item and said "put that one in" i.e. in the trolley) she beams and nods her head and says an emphatic "yes" - with an 's' and everything!

Another milestone - she's worked out how to take photos with my phone. We're now into the 'taking photos of my shoes and bits of Mummy' phase. Her first photo was of the Clown Doctors at the hospital, who highly enjoyed posing for her shots - possibly straining their backs in the process of getting their heads in the frame.

Jacinta is very aware of where she fits in. She wants to be included and most of the time if she's crying in the house suddenly it'll be with her face in her hands, weeping because she's been told she can't play with the older sisters. It's quite a frustration for me to see that since my middlest started school the age gap between her and Jacinta has widened so much, when there's actually a bigger age gap between 1-2 than between 2-3. Frustrating also when one thing I really don't want Jacinta to get used to is exclusion and feeling different. I know it'll come up in the future, but I do like to think that the one place you'll always feel you belong is at home, and being always stuck with your parents is nobody's idea of fun. Anyway, I look forward to getting that crystal ball so I can see how it'll all play out.

Almost every day she's doing something new that we didn't know she could do. The other night her older sister and younger cousin put on an impromptu acrobatics show and she jumped up and joined in with a couple of moves we've never seen her do before - and which are really good for her physical development, so woohoo!

She sings a variety of songs now, including the Peppa Pig theme tune (snorts included) and the song "Apples and Bananas" which just so happens to be the name of one of her  Wiggles DVDs...... (very convenient)

I think my favourite thing I've seen her do lately was on her birthday. Up until this year she hasn't had the puff to blow. Before her recent heart op she had started blowing bubbles in drinks with a straw (and getting in trouble for it) and I'm pretty sure that since the operation she's had more puff than before.

With all my kids who haven't blown out candles before I have done a dry run with a sing of Happy Birthday and then cue them to blow so they know what to do. Every year until now she's not had enough air to get them out, but this year a couple of days before her birthday I did it and she blew the candle out straight away, with no hesitation or difficulty.

It was so sweet to see her blow the candles out this year, not only because she could actually do it and tick off another milestone, but because she took each candle individually and blew.....each.....one ....out, very very carefully. Thank goodness she only turned four!

It really is amazing to watch Jacinta go about her business. She's still determined to do everything herself, or at least attempt it before getting help. Woe betide anyone who tries to treat her like a baby!
She is very good at estimating danger at certain times - carparks excluded.... She loves opening and shutting the car door, the house door, the bathroom door etc and it amazes me that no matter how quickly she does it (and I freak out slightly on the inside expecting broken fingers), she is actually really careful to ensure her fingers are out of danger each time. I don't know why I expect her to be sloppy and careless - perhaps unaware - but it's in there, and she surprises me often by being very sensible. Maybe it's because she's still so cuuuute!

This is a really unusual sight these days.

And in a few short weeks she starts kinder. She's going in with the 3 year-olds who will start turning four this year. This means she'll start school at six, all going well, which is perfect. She's so ready to get out and make more friends and it's high time she did.

See you in a couple of weeks!