Tuesday, 20 March 2018

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!

Monday, 8 January 2018

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!!!

Monday, 20 March 2017

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.


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.


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

Monday, 13 March 2017

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!

Thursday, 26 January 2017


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!

Monday, 19 December 2016

Vale Jules Watson

Sometimes I feel compelled to write a reactionary post. Usually these are for venting purposes.
Once or twice, I've felt compelled to write about a loss, and this is one of those times.

Back in early 2015 a friend of mine shared a blog post, from Five Fairies and a Fella http://fivefairiesandafella.com
I don't remember exactly which post it was, but from Jules' turn of phrase and her absolute spunky fighting attitude, I was instantly in her corner on her fight to live, when all stats said she wouldn't.

Jules and I have a few things in common, though my fairies are younger and one fewer, we each have a youngest with a Trisomy.  A mother by occupation, who had something to say, with words as her instrument and who wasn't backing down from the idea that she would just survive, even if it was not supposed to be possible.

What I loved most about Jules is that from all I have read it appears that she was very much in the same place I am just a couple of years ago, yet she decided at one point not to be scared anymore. She decided on what was important to her and began, by ticking off items on her bucket list I suppose, to actually live her life the way she had always wanted to.

She obviously began blogging, she threw herself into her writing, finished her tertiary studies.  By the time I had been following her a year, she had beaten the odds several times, not died at least once, and published a book - travelling the country to promote it. (It was such a pleasure to brighten her day during one rough moment by sharing a picture of her book on display at my local library.)

Of all the people I have met on Facebook and never met in real life, she is the one who will stay with me, because she left an indelible mark on me. She could have been me, and when you have so much in common with someone you feel what happens to them in such a real way.

Because of Jules I will be working on creating memories for my children while I am fit and well.
Because of Jules I will write down my thoughts for my daughters while I think them.
Because of Jules I will grant importance to my own dreams and goals and start living the life I actually want to live.
Because of Jules I will not let something go if I sense there is something not right with my body, but I will get it checked, because not being around for my children is a much scarier thought than any diagnosis might be.

I am sad that I never got to meet Jules. I really think we would have had a good time.
I feel for her Fella and Fairies, so much. Words seem empty, when trying to convey an understanding of the emptiness that Jules' loss must have left in its wake. I send them all the love I can muster.

And so Vale Jules, you defied the odds so many times. If anyone could beat it, you could. Maybe no-one can. You grabbed life by the horns and lived that life like it was going out of style. You will be remembered. Not just by those who knew you, but by those who would have liked to, if things were different. You made a difference and you left your mark. Fare well.

The post-surgery update.

Well, we made it to Reception J on time and managed to arrive with a fasting, but not uncomfortable Jacinta.
It's always better to have sisters there before surgery because you can giggle and have fun rather than sit there worried.
One good thing about having done it all before is that you have pretty good prediction on how long it will all take and when you'll be going in. The first time she had heart surgery I thought 7am meant a 7am op - or thereabouts. Ha! Not so much. More like 8.30. It's handy to know that when you have to keep kids entertained.

So we took family photo with Jacinta and me gowned up to the nines. Then I took her through. It was when we were in the theatre that she saw the warming thingy on the bed, looked around and got her bearings that it all got real.
With a shake of the head that clearly said,"uh-uh" she indicated that she knows how this goes. To her credit, when I said,"yes, we have to", she settled on my lap watching Peppa Pig on my phone and let them put the gas mask on. One thing has changed,  they used to flavour the gas with strawberry or chocolate topping. Now they use lip balm - grape in this instance, on the anaesthetists's recommendation.

We went off to fill in the time. Apparently orange pancakes are now a thing and The Secret Life of Pets is too scary for some children. I wound up with more than one extra on my beanbag in the cinema downstairs.  Water tastes good with lemon, strawberry and cucumber infusion. The surgeon called as we were finishing lunch. Now he had said he would finish sometime early afternoon. He always SAYS that, but then I either get a call saying it will be another few hours, or I don' t get a call til late afternoon, because it was tricky and it's not perfect bit it will be ok.

I admit, when the phone rang at 1:26pm, I freaked out a bit. I was expecting to have to kill a few more hours, and an early phone call could not be good news.

But it was! The surgeon said it was easier than expected and the result was perfect. This means that the membrane should not grow back again. For context, I have never before heard the surgeon say the word 'perfect' without the word 'not' in front of it. I think he also said the word 'pleased'. These are not words he throws around with gay abandon.

She got back to ICU by about 3:30 which is the earliest ever and they started talking about waking her up that night, which never happens. This is how other people do cardiac surgery!
By the time I came in the next morning she was awake enough to see me and they had 'extubated' her. (Taken out the breathing tube) She wasn't super happy about life, but hey, she had just had her chest ripped open and bones broken and wired back together. That's fair enough! I did notice however that she didn't want to be touched or looked at, which is what happened the last time she had Fentanyl. She was given it this time too.

Then things happened very quickly. They said she could go to the ward that day. We were waiting, not on her recovery, but on a bed in the ward.  The first thing she told me was that she was thirsty, and she drank at least a cup of cordial (you go with whatever goes down in some scenarios) in about 2 minutes. After a few hours she had come out of the Fentanyl grumps and was eating food. She scratched at her chest a lot. She pulled out her oxygen prongs. Lucky she didn't need them anymore.

This was in stark contrast to her first ever surgery, where they gave her a day off and just let her rest. Both previous times she was still well under sedation at this point. Now she was up and about. We found a good spot that was comfortable, with me on the bed under her. I'm not sure how usual this is in Intensive Care,  judging by the surprised and amused looks we got from passers-by and visiting doctors.

We went to the ward that evening and despite her disagreement with changing spaces, she just got better. Every few hours they took things out. By the Thursday they had taken out her pacing wires and drains. This had never been done with her up and about, and it was one of the most harrowing things I've ever had to participate in. She was fasting for a very long time, because they wanted to use heavy sedation, and this meant she went in hungry and thirsty to do a thing which scared the hell out of her. Then for the rest of the afternoon while she wanted to sleep she was made (by me) to go downstairs and do a chest X-ray (because we had to).

 By the end of all this, we just wanted to go home. She was over being touched, she had pulled out her NG tube which meant oral meds from then on, she disliked almost everyone who came into the room. Another room change meant we were in the low maintenance section but she did not agree with changing rooms again. Thankfully a Skype call to home meant she could relax again.

And then, on the Friday, they sent us home. I think I was packed before the doctors even came around.  It's interesting, the more we do hospital, the less we feel the need to be there. I remember the first time she went home I was a little nervous about how safe it was for us to be looking after her so soon after surgery (two weeks). Now, I am so over the nights spent in hospital, where the nurses pretty much have to do obs overnight, which almost always results in broken sleep for everyone, that I would rather look after her four days post-surgery by myself at home.

 I know that she will sleep better, will feel happier, and will have the food and drink she's used to plus the Peppa Pig DVD and whatever else she feels like doing to hand. You just get better faster at home. Everyone who knows hospitals agrees that if you don't need to be in hospital, it's better not to be there.  I did have some messages from friends saying 'don't rush home, make sure you rest', but the chances of rest are so much higher at home.

And you can drive to the mountains at your leisure and visit the Chocolaterie and Ice Creamery.....