Hi all
Today we went to the NWU campus in Potch to see a feeding/speech therapist, Hanlie Degenaar. Dr Lamb referred us to her when we saw him on the 22nd of Aug. The reason for seeing her was that since Lia was discharged fro Morningside hospital over a month ago, she stopped taking her bottle. She was eating solids, but I had to force her to drink fluids through a syringe and this opens so many possible problems, including aspiration.
Hanlie introduced us to a special powder that turns the milk into a paste that she then eats with a spoon and does very well. She did all kinds of tests regarding her chewing and swallowing, and Hanlie was very happy with the outcome. It’s better for her to stay on solids now as her brain struggles to switch between fluids and solids. So she will “eat” her water and her milk from now on. When in the tummy, it turns to liquid again and stops her from dehydrating. Eventually she can move on to a straw (she already started signs of sucking the straw) and then a sippy cup.
There are no indications of a feeding tube as she is eating very well. They test the tongue and all the movements inside the mouth. 17 check boxes need to be checked before someone has to get a feeding tube and Lia only checked one (not taking fluids).
Our next session with her will be via Zoom as travelling to Potch is very dangerous, expensive and time consuming. She is also on rivitril drops at night to help with her extreme irritation (the noise in her head) and that has helped so much in just 2 days.
I don’t know what’s next.
I don’t know what she will or won’t be able to do one day.
I just want her happy, laughing and loving me.
She said if you look at her scans, there are already things that she can do that she isn’t “supposed” to be able to do, so that is a very positive piece of feedback. She expected to see a girl that just looks up at the roof, and that is not what Lia is or will ever be. She said to keep wearing the glasses and doing the patching of the eye, as there is definitely something in her brain that is learning. She is exhausted, with a bit of a chest cold, but sleeping in mommy’s bed tonight while Nélius stays with Nanna and Oupa tonight.
I will travel to the ends of the earth to give her a long and good life.
