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.

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.


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

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!