Tuesday, 20 January 2015

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!

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