And then this past week we FINALLY had our assessment from a speech language therapist- the assessment that should have happened months ago.
The SLT believes that A has a very weak suck and will be reliant on the NG tube for a year or more.
Yep that long.
Her assessment hit me like a tonne of bricks and yes I cried when she said this, and yes I sobbed and sobbed when she finally left. I was not expecting this.
In the week since I have implemented the tips the SLT mentioned. And A's feeding has gotten worse. She takes barely 20ml a feed now, whereas before it was 50-70ml.
So, I don't really think the SLT's plan is working for A, and I am not sure what I think of her assessment.
I am torn and I don't know whether I need to continue to fight and try and wean her before her feeding gets any worse (and really, it can't get much worse before she is nil by mouth.)
Or, I don't know whether I should just respect her decision and stop worrying about it, and just let A do things in her own time.
I feel stuck between a rock and a hard place here and I don't know what to do. I wish I had a crystal ball and could see the future- will she get a tube dependant if we leave her on the tube, or will she eventually wean herself naturally?
Instead we'll fumble along day by day, trying different approaches and tricks, trying to do our best, even though we have no idea what that is.