Tuesday, 20 January 2015

Well, hello!

I just blinked and three months went by!

That's the thing with having school-age children. You hit the end of October and things ramp up and, in our house, they don't settle down until about 20th January.....

And what has been happening?

We've seen the Oncology guys a few times, and they're happy. I'm in a place now where I don't see petechiae in every texta (felt tip pen) mark and I know the red in the nappy is a piece of undigested tomato - after a very thorough examination.... Getting there, slowly.
We've all been fairly healthy since the end of October.
I just found a post from December which I never finished, so I've published it with a quick glance-through. I hope it's not too sensational!

The eternal puzzle of what to get a 2 year-old who really wants a Barbie (sigh) for Christmas that will encourage her to move around in a cross-pattern on hands and knees is ever-present. She did get a Barbie. She also got a drawing mat, one of those water pen ones that are everywhere at the moment. A Peppa Pig one. Of course.

Then she had a birthday!! Books and dresses, I said. Books and dresses. She got quite a few books and dresses. She had a lovely time. And a Peppa cake. Of course. Funnily enough she hasn't watched Peppa for ages, not since hospital. I've pretty much banned DVDs and videos, on top of the nonexistence of TV. Caused too much trouble with the older siblings. Pointless for development anyway, though oh so handy to get things done...

I meant to post on her birthday but there was just too much to get on with and I was too behind on sleep! She's not the only child, nor the only one with a January birthday and this year is party year for my eldest. This means lots and lots of organising for lots and lots of children. (We don't do it every year so I place few limits on how exactly the party will take place. If it's possible, we do it.)

And so how is she looking? What is she doing? We had a few hot days at the start of the year so we were at the swimming pools and I noticed that it was very easy for her to grasp my fingers, Doman-style, while she was in the pool. This was so much fun for her that I took up doing it again at home. She'd become so tired and pretty weak that I'd given up last year some time. Anyway, she loves it. Every nappy change, unless she's too tired, I stand her up on the change mat and she says "arp", which is Jacinta for "grasp" and we give it a go, three times.

This is how the Doman program is meant to go. In the ideal world, the bulk of it is meant to slot into your life so you can do it as you go about your day. So easy. One purpose of this grasp exercise is to stretch out the thorax and get more air going in, which can impact on speech. Since then, her speech has been coming along. Now I'm not completely sure it's just that, since my middlest also had a marked change in speech at that age. She spontaneously began speaking in sentences on her 2nd birthday. Still, it's very interesting that old words are suddenly back. Dipdipdipdip, for a chip. Piddabada, for peanut butter. Butterbuy, for butterfly. Hey, for hey. She's having a go at new words too, like 'grasp'. There are others that slip my mind for now.

So how's she looking?
Like this!
That there in the background is the crawling track. I moved it since it was in the way of everything, but before I did I tried something out. She had just started climbing stairs since she realised that if she could climb stairs she would have almost unlimited access to slides and other playground delights.

I set up two stools, one under the crawling track to give it an incline, and the other just behind that stool, to create a smaller step. She cottoned on pretty quickly and when she crawled up, I very gently encouraged her knees to use the mat instead of doing the usual (cringeworthy for brain synapses) bottom-shuffle. I found that when I did this, she settled into a lovely cross-pattern crawl. Now I'd love to tell you that from that point on she enjoyed crawling so much that she gave up bottom-shuffling for good, but she didn't.

Still, after that we've seen her crawl several times when left to her own devices. Trouble is we get so excited that she stops, sits up, enjoys the applause, and forgets to do it anymore!
When my husband has finished his studies (4 weeks to go til exams!) we're going to get moving on this IAHP stuff, at least to get crawling happening.

Still, she's cruising, nearly standing on her own, wanting to walk but lacking confidence. She does still point her feet outwards a fair bit, and I suspect crawling will help with that.  She can climb up and down stairs safely now, which gives me some freedom and also gives her some freedom, which negates the freedom I get!

She's enjoying books for older children. She's tickling us and doing 'round and round the garden' with us. She's mastering the use of cutlery and is throwing her plates on the floor much less now. In fact the floor has not been covered with uneaten portions lately, which is lovely. I also found coconut yoghurt at the supermarket yesterday and she likes it!! (As opposed to any kind of non-dairy milk we've tried so far - almond, rice, macadamia...)

Another thing I found interesting at the pools was that she's not too keen on me putting her on her back in the water, but if I put her up at the side, holding on and with her feet up near her hands, like the start of a backstroke, she will actually push off like a backstroke swimmer and happily go back a distance if she's resting on me. I've never seen one of my children do that before. It's like she's a ready-made swimmer.

Anyway, there's a lot to go on with and lots to work on.

And it's a time for reminiscing, since one year ago today I was still reeling from the phone call that had come in the evening, telling me that the bloods we'd had earlier that day showed signs of leukaemia. The next day we went in and were in for a further 6 weeks.
What a strange turn of events. Nothing was ever the same, though it's always like that, isn't it?

As a child, then a teenager, I used to wish for things to go back to the way they were in the past. I was always striving to recreate perfect memories.
So many times since then, life has taken a sharp turn in another direction. How different things would be if people hadn't died, if people hadn't gotten sick or developed problems. But it's part of growing and developing into the person you will become in order to grow and develop some more. Particularly so for my older children, who really have been the collateral damage in this leukaemia business.

We're finally getting strict enough and consistent enough to regain some semblance of control over the family and the house. Things got so chaotic, it's been hard for the girls to know where the boundaries are, especially when they are being set by several different people and then being relaxed because everyone feels sorry for them and nobody wants to be the bad guy, or has the time or energy to deal with a meltdown. Still, I'm hopeful that by the end of this year we'll have a bit more clockwork going on in terms of knowing what the rules are and sticking to them. Fingers X!

Last week we farewelled a little boy we met on the ward during our second admission. His is a tragic story. He was the poster boy, the success of the transplant unit. A gorgeous 2 year-old who was tearing around the unit when he had the energy and riding his pole around if he didn't. They found a 100% bone marrow match for him. He had it all done and recovered so quickly. Within 60 days he was back again, with everything back, much more aggressive than before. Watching The Fault In Our Stars recently, it really tells the harsh reality for so many families. Relapse is lurking over your shoulder, in the back of your mind. It's there as a possibility and can happen when you least expect it.
Farewell to Ryder, rest well little buddy.

And the rest of us carry on...  
Trying out her new dissolving arms.....

Oops! Skipped a month!

NB: I actually wrote this on 2nd December 2014. Forgot to publish it!

Where did the time go?
We had Halloween, which is kind of lacklustre in Melbourne, but is gaining momentum as the chocolate companies realise there is still a virtually untapped market here and flog it to death.

We had Melbourne Cup Day, which I celebrated by running out on my family completely in the afternoon and missing the whole thing.

We had a trip to Echuca, via Benalla, which isn't exactly on the way.

We had November, which is a bit of a blur, with Christmas things already going on and an early Thanksgiving celebration a few weeks ago. We got to try sweet potato with marshmallows!

Well, when I left off Jacinta still had the last remnants of the gut issues from the gastro and I was exhausted. I'm still exhausted since everyone's given up sleeping, it seems, but the gastro's all gone now. It took a couple of weeks for her (TMI) poo to regain its colour and stop exploding out everywhere. I did also rein in her diet to ensure she was getting enough iron and all the other things she needed. (It got a bit off course there when we were in hospital all the time.)

Then, shortly after she was clear of the gastro she came down with a cold. I had it for a few days. She struggled with it on the first couple of days and I almost took her in to Emergency on day 2, since she was working so hard with her breathing. If she hadn't fallen asleep for the night and settled down I would have taken her.  I got her back to see Maria and we've been working on the illness. I think it settled down and she caught another one straight away though, because she's been unwell for several weeks now. It has stayed off her chest though, thankfully.

Today was an appointment day and she was all fine on the cold and flu things so we got to address her heart, yay! (plus a bit of muscle, brain-body function and trisomy 21)

This is following on from yesterday's appointment with the Cardiologist. She flew through all the scans (Echo and ECG are standard with each visit) without a fuss and the nurse, technicians and Dr were very pleased with her. I think when you've been having these tests since birth and they don't hurt at all, you've got absolutely no reason to make a fuss!

The Cardiologist says her heart is about the same size as it was this time last year, which is good. The danger is that if the valve stays leaky and goes untreated it might cause the heart to become enlarged - and I don't think it helps you to race better, like Phar Lap (google Melbourne Cup, Phar Lap) if you're a human with a large heart. I think it's just more likely to explode, like the guy from The Meaning of Life ( "it's just a teeny morsel, wafer thin..." ewwww)

Anyway, I think that the reason they want to fix it in particular is that over this year she's had a few moments of struggling when she's had transfusions or IV fluids or respiratory issues with bronchiolitis etc.  Still, we're working on the heart to see if we can get that AV valve working properly and avoid the surgery altogether. ("we're working on the heart to see if we can get that..." Flying High? Anyone?)

So today was interesting. I didn't see any heart or muscle-related improvements like I've done in previous times (like the time she was breastfeeding right before a treatment and then came out after and finished the feed and it was like someone had cleaned out the vacuum cleaner pipe - the suction had improved out of sight!), but I noticed that she was super chatty all day after the treatment and she was blowing raspberries and I realised I hadn't seen her do that for ages - possibly since before she had the line out.

I guess we'll see how we go on this one. It's great to be doing these things, and I can't wait to address things to do with crawling or speech. I know, there's time, but I want to do them all now!