Monday, 21 November 2016

It's all going on!

Today was one of those days when you leave to drop the kids at school and don't make it home again until after you've picked them up at the end of the day.

Three appointments - I'd like o say back to back, but there was a fair bit of travelling time in between them.

We're all about the heart surgery right now because we're expecting a call any day to say that it's going to be tomorrow, so of course none of these appointments had anything at all to do with heart surgery.

The chiropractor did some moves to help residual fluid drain out of her teeny tiny eustachian tubes because they're still chock-a-block full of fluid.

The Oncologist said there's no haematological reason for her tiredness and thinks it's worth considering sleep apnoea - suggested we monitor her sats while she's in hospital after the heart. Thought about her low lymphocytes and we wondered if it's worth doing anything about immunity - such as seeing an immunologist re immunoglobulins or vaccinating which might be useless at this stage - then it all got too complicated with the high incidence of low lymphocytes in Trisomy 21 cases and the incomplete thymus, so we decided to leave it til next time, when we see our usual doctor who's back from maternity leave. Effective handball there.

The nicest part of the day was at the hearing clinic. She is going to get a fabric headband which has a device inside for sending the sounds in her environment directly to the inner ear via bone conduction.
The person we saw had an old device there which we tried, and Jacinta was transfixed when it was used. We couldn't leave it there, so had to take it away and she was instantly pointing at her ears, to ask us to put it back. She was emphatic in her 'yes' when I asked if she wanted one.

So if we don't get the call for surgery before next Monday she'll have a fitting appointment for her new hearing device - and then it'll be game on for speech development and we can see what she's really capable of. Things are getting exciting!

And meanwhile we try not to think too much about the heart. She knows and understands and doesn't want to talk about it.

Last week was the kindergarten AGM, where all the new parents arrive and vote on the next year's committee. She was reacquainted with the educators and it was lovely to be talking with them about her needs for next year. It's all really becoming real. She's been home with me for so long and it's been just us for so much of it, it's been hard to imagine life beyond this year, but it's starting to take shape. Today I booked two appointments for next year. Need a new diary!

Many things going on right now, and I can't wait til Christmas because I am living under the delusion that things will settle down by then. (As if!)

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